We visited our neurologist today. We're going to increase Lily's vigabatrin dose a little bit, and then we are having an MRI on Friday to make sure that the side effects she experienced last time on vigabatrin are not present this time.
We probably won't do an EEG unless we stop seeing spasms. Sigh. That seems so unattainable to me, and it's hard not knowing if Lily still has hypsarrhythmia or not. But, there's no reason to go through the pain and inconvenience (and believe you me, they are inconvenient) without some change in her seizures.
I mentioned that Lily has these "eye seizures" where her eyes dart down & to the left during a cluster of spasms. His explanation is that it is probably an ictal or post-ictal response, not a different kind of seizure. He said that after spasms, the brain is still in such chaos that the firing happens along the same pathways and it's just a "symptom" if you will of her brain calming down. So depressing.
We also got referrals to the dental clinic and the ophthamology clinic.
Other than those things it was massively uneventful. I suppose that's good, but it's also hard to be in this "Well, just keep plugging along" mode. It feels like giving up on finding out and fixing the cause of the seizures, and just "accepting" that this is Lily's lot. That she's stuck with it forever. Suck.
Oh, I did ask about having a muscle biopsy (to rule out a mitochondrial disorder) done during the MRI, and Dr. S thinks that we don't need to do that. He thinks we won't find anything and wants to wait until they have this fancy-schmancy gene array stick thingamadinger that is significantly less invasive but will yield better, and faster, results. Ok, whatever.
The other stress going on is just about money. You may have noticed a few posts regarding fundraising for Lily's therapy. Well, we've tapped out all our resources for Lily's therapies & medications, and the well is dry. She has benefitted so much from ABA therapy. Despite having (arguably) the best insurance in the country, our ABA therapy is only covered about 60%. Hippotherapy is not covered at all, and vigabatrin has to be ordered from Canada (though this is about to change).
All told, we figure we spend about $1,500 a month on therapy and medication for Lily. So we are frantically pursuing any and all kinds of grants, state & federal aid (which there is basically none) and trying to be creative in ways to save money and make money. It's stressful and hard.
In good news though, tonight we went to the Open House at Lily's preschool and she was SO HAPPY to be back! She went ALL over the room, squealing and waving and just generally being happy. It was really wonderful to see her remember her classroom and teacher, and be so excited to be back there. Next Tuesday she starts back and she'll be taking the bus like a big girl on Tuesdays & Thursdays with her brother Hank. They'll be part of the inclusion program together. Wed/Fri I will drive her, but I'm excited to see how the bus goes. I'm also excited to have three hours all to myself on Tue/Thurs!!! What a novelty!
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Tuesday, September 1, 2009
Tuesday, March 17, 2009
Lots to update on!
Well, where to start...so much going on...
We had a fantastic trip to Detroit, MI & Loveland, OH. We spent great time with family and cousins, and learned a wealth of information from Dr. Chugani.
Lily loved having all that space to roam around in the airport:
In Detroit, everyone in the EEG lab was fantastic. They bundled Lily up super tight, making it look like a little EEG Spa:
Lily did fairly well in the hospital over night:
The overnight stay was tougher than I'd planned for. Lily was confined to the bed 100% of the time so she could stay on camera. Also, they require the parents to stay awake the whole night so that we can "push the button" when/if the child has a seizure. Lily doesn't have siezures in her sleep, so I wasn't prepared for this. WHat made it especially tough is that the rooms don't have a "parent light" over the seats, so I couldn't have any light on to read. Also, they block a lot of the channels on the TV so no Law & Order or Sex & the City re-runs to keep me entertained. No laptops allowed. I had loaded some tv shows on my iPod to entertain me, but I had no battery due to a little mishap the night before. :( So that was tough.
All in all though, the overnight went fairly well. We went direct from EEG to the PET lab. EVERYONE working in the PET lab was just amazing. They were warm, accomodating, gentle, and supportive. THey were so great with Hank, always making sure he had toys & entertainemnt. THey had a 2nd little waiting room that they let us just take over while we were there.
Waiting for the PET:
G'nite, little bean:
Hank works on the scan:
We ended up having both kinds of PET scans, the FDG & FMZ (the FMZ is the "study" PET that Dr. Chugani is running) so we had to go back on Wednesday for the 2nd scan.
On Thursday we met with Dr. Chugani to go over all the results. He spent nearly two hours with us answering tons of questions and discussing Lily. What we leared is that Lily is not a surgical candidate, and will not be in the future either. We can cross that option off the list.
Lily has bi-lateral hypometabolism in the temporal & parietal lobes of her brain. These areas of the brain control the higher-functions of learning and function: visual processing, memory, and language among other things. Dr. Chugani showed us pictures of the scan and the hypometabolism (areas where the brain doesn't process glucose as well) is nearly identical on both sides.
The most interesting thing about his observations of Lily was how he picked up on and really spent a lot of time talking about her autistic features. He talked about a small sub-population of kids with infantile spasms who are also autistic. This sub-population, kids he's observed for 15+ years, all have similar features, similar PET scans, and similar behaviors. This leads him to believe that htey all have some sort of undetermined genetic condition that leads to this. Dr. Chugani is also running this very large-scale gene bank that we all decided to participate in. We all (including Hank!) gave a vial of blood that will periodically be run against new findings in genetics. Dr. Chugani has access to the super-duper genetic tools that the NIH has, so he's making great strides in this area.
Dr. Chugani does not think that the cause of Lily's seizures is a mitochondrial/metabolic issue, however we take that with the same grain of salt that we take Dr. Saneto's believe that her seizures ARE mito related. Everyone has their biases and interests...we'll pursue them all until/if we ever find something. (A definitive answer/diagnosis likely won't change the course of Lily's life, but could have implications for Hank's reproductive future, and if we decide to have any more kids in teh future.)
One of the best things Dr. Chugani was able to clarify for us was with regards to the distinction between development & seizures. We'd always operated under the belief/assumption that the learning was directly linked to seizure activity. Must stop one to achieve the other, wehn in fact they are separate. This really tied into his observation of Lily's autism. He encouraged us to aggressively pursue theraipes designed for autistic kids. As I mentioned in a previous post, some of our other IS friends have had great success with ABA therapy. Dr. Chugani encouraged us to "embrace" her autism diagnosis, let go of feeling like posers, and use that diagnosis to get whatever therapies & treatments we could for Lily.
(Despite getting the autism diagnosis in August, I have been reluctant to embrace it and jump into the autism community as I didn't feel like Lily was "autistic enough". I don't believe her seizures/autism were/are caused by vaccinations, and I'm not necessarily going to pursue biomedical treatment for her. Finding acceptance as a parent of a child with special needs is tough enough; I didn't want to be "shunned" from the autism community. Dr. Chugani encouraged me to let go of all these feelings and jsut do what was best for Lily. Come to find out, he was totally right, and I'm learning SO MUCH about therapies and thigns to do with Lily!)
So, along those lines Lily starts her assessments for the ABA program next Monday. I'm thrilled to have hooked up with A.P.P.L.E. Consulting to provide Lily's ABA. One of our therapists is a good friend of my sister-in-law, Tiffany, and was in her wedding last summer. I was fortunate to spend time talking with Hayley about Lily and learning about how ABA will really help Lily's development. I'm THRILLED to be starting it next week.
Also next week, Lily has an AAC evaluation at Seattle Children's. This is another thing that neurodevelopmental suggested we do last August (and it took this long to get it scheduled, YIKES!). AAC = Alternative & Augmentative Communication. It's a two hour long eval and at the end, recommendations will be made about programs to use to teach Lily communication. We're going to have a large team of Lily Supporters at the AAC; her SLP from Cascade will be there, as well as her teacher, paraeducator, and PT from school will be there. Of course, Todd, Hank & I will be there, and Amanda our Nanny is coming too! WOW! Lots of people behind Lily, supporting her, and wanting her to get as far as she can!
Day to day, Lily is doing just great. We're so very happy we stopped the ketogenic diet in December. Lily is so much happier! We feel that it has also really increased her fine motor skills, as well as communication. We're using a few PECS with her at meal time (she can use the PECS to ask for more cheerios & a drink). She did the most amazing thing the other day! She was hungry, and whining a bit. So she came over to me at the sink, took my hand, and pulled me over to her high chair, indicating that she was hungry and wanted to eat! Of course I whooped it up and rewarded her with a snack!! GO LILY!!!!!!
Lily is done with the Ganaxolone study, and we've started her on a new medication called Banzel. Banzel was developed as an adjunct therapy for kids with Lennox-Gastaut, a different but related seizure disorder. We've seen good results with it, however we aren't seizure free. We're in teh midst of trying to decide if we're going to add a 2nd medication to her cocktail, or where to go from here.
All in all, we're in a good place right now.
We had a fantastic trip to Detroit, MI & Loveland, OH. We spent great time with family and cousins, and learned a wealth of information from Dr. Chugani.
Lily loved having all that space to roam around in the airport:
In Detroit, everyone in the EEG lab was fantastic. They bundled Lily up super tight, making it look like a little EEG Spa:
Lily did fairly well in the hospital over night:
The overnight stay was tougher than I'd planned for. Lily was confined to the bed 100% of the time so she could stay on camera. Also, they require the parents to stay awake the whole night so that we can "push the button" when/if the child has a seizure. Lily doesn't have siezures in her sleep, so I wasn't prepared for this. WHat made it especially tough is that the rooms don't have a "parent light" over the seats, so I couldn't have any light on to read. Also, they block a lot of the channels on the TV so no Law & Order or Sex & the City re-runs to keep me entertained. No laptops allowed. I had loaded some tv shows on my iPod to entertain me, but I had no battery due to a little mishap the night before. :( So that was tough.
All in all though, the overnight went fairly well. We went direct from EEG to the PET lab. EVERYONE working in the PET lab was just amazing. They were warm, accomodating, gentle, and supportive. THey were so great with Hank, always making sure he had toys & entertainemnt. THey had a 2nd little waiting room that they let us just take over while we were there.
Waiting for the PET:
G'nite, little bean:
Hank works on the scan:
We ended up having both kinds of PET scans, the FDG & FMZ (the FMZ is the "study" PET that Dr. Chugani is running) so we had to go back on Wednesday for the 2nd scan.
On Thursday we met with Dr. Chugani to go over all the results. He spent nearly two hours with us answering tons of questions and discussing Lily. What we leared is that Lily is not a surgical candidate, and will not be in the future either. We can cross that option off the list.
Lily has bi-lateral hypometabolism in the temporal & parietal lobes of her brain. These areas of the brain control the higher-functions of learning and function: visual processing, memory, and language among other things. Dr. Chugani showed us pictures of the scan and the hypometabolism (areas where the brain doesn't process glucose as well) is nearly identical on both sides.
The most interesting thing about his observations of Lily was how he picked up on and really spent a lot of time talking about her autistic features. He talked about a small sub-population of kids with infantile spasms who are also autistic. This sub-population, kids he's observed for 15+ years, all have similar features, similar PET scans, and similar behaviors. This leads him to believe that htey all have some sort of undetermined genetic condition that leads to this. Dr. Chugani is also running this very large-scale gene bank that we all decided to participate in. We all (including Hank!) gave a vial of blood that will periodically be run against new findings in genetics. Dr. Chugani has access to the super-duper genetic tools that the NIH has, so he's making great strides in this area.
Dr. Chugani does not think that the cause of Lily's seizures is a mitochondrial/metabolic issue, however we take that with the same grain of salt that we take Dr. Saneto's believe that her seizures ARE mito related. Everyone has their biases and interests...we'll pursue them all until/if we ever find something. (A definitive answer/diagnosis likely won't change the course of Lily's life, but could have implications for Hank's reproductive future, and if we decide to have any more kids in teh future.)
One of the best things Dr. Chugani was able to clarify for us was with regards to the distinction between development & seizures. We'd always operated under the belief/assumption that the learning was directly linked to seizure activity. Must stop one to achieve the other, wehn in fact they are separate. This really tied into his observation of Lily's autism. He encouraged us to aggressively pursue theraipes designed for autistic kids. As I mentioned in a previous post, some of our other IS friends have had great success with ABA therapy. Dr. Chugani encouraged us to "embrace" her autism diagnosis, let go of feeling like posers, and use that diagnosis to get whatever therapies & treatments we could for Lily.
(Despite getting the autism diagnosis in August, I have been reluctant to embrace it and jump into the autism community as I didn't feel like Lily was "autistic enough". I don't believe her seizures/autism were/are caused by vaccinations, and I'm not necessarily going to pursue biomedical treatment for her. Finding acceptance as a parent of a child with special needs is tough enough; I didn't want to be "shunned" from the autism community. Dr. Chugani encouraged me to let go of all these feelings and jsut do what was best for Lily. Come to find out, he was totally right, and I'm learning SO MUCH about therapies and thigns to do with Lily!)
So, along those lines Lily starts her assessments for the ABA program next Monday. I'm thrilled to have hooked up with A.P.P.L.E. Consulting to provide Lily's ABA. One of our therapists is a good friend of my sister-in-law, Tiffany, and was in her wedding last summer. I was fortunate to spend time talking with Hayley about Lily and learning about how ABA will really help Lily's development. I'm THRILLED to be starting it next week.
Also next week, Lily has an AAC evaluation at Seattle Children's. This is another thing that neurodevelopmental suggested we do last August (and it took this long to get it scheduled, YIKES!). AAC = Alternative & Augmentative Communication. It's a two hour long eval and at the end, recommendations will be made about programs to use to teach Lily communication. We're going to have a large team of Lily Supporters at the AAC; her SLP from Cascade will be there, as well as her teacher, paraeducator, and PT from school will be there. Of course, Todd, Hank & I will be there, and Amanda our Nanny is coming too! WOW! Lots of people behind Lily, supporting her, and wanting her to get as far as she can!
Day to day, Lily is doing just great. We're so very happy we stopped the ketogenic diet in December. Lily is so much happier! We feel that it has also really increased her fine motor skills, as well as communication. We're using a few PECS with her at meal time (she can use the PECS to ask for more cheerios & a drink). She did the most amazing thing the other day! She was hungry, and whining a bit. So she came over to me at the sink, took my hand, and pulled me over to her high chair, indicating that she was hungry and wanted to eat! Of course I whooped it up and rewarded her with a snack!! GO LILY!!!!!!
Lily is done with the Ganaxolone study, and we've started her on a new medication called Banzel. Banzel was developed as an adjunct therapy for kids with Lennox-Gastaut, a different but related seizure disorder. We've seen good results with it, however we aren't seizure free. We're in teh midst of trying to decide if we're going to add a 2nd medication to her cocktail, or where to go from here.
All in all, we're in a good place right now.
Wednesday, January 7, 2009
Winter time!
Well, I'm a bad blogging mom. But it's time for a Lily Update as there are some big things going on!
First off, HI JEAN!
Ok, now that's out of the way...
Lily came off the Ketogenic Diet over Christmas. It wasn't planned, and I think our neurologist is not super thrilled, but it was the right thing for us to do. Lily had a little stomach flu and couldn't keep anything Keto Friendly in her body. So we initiated the B.R.A.T. diet: Bananas, Rice, Applesauce, Toast. We stuck with bananas and dry toast, which aren't exactly Keto foods. And she was SO SO SO happy. Seriously, we haven't seen her that happy since before starting the diet. We did 24 hours of BRAT, then tried some Keto Foods. And they just went right through her, so back to BRAT we went. And she was so happy, not exhibiting ANY side effects of "normal" food, that we slowly introduced other normal stuff: turkey, beef, milk, cheese, yogurt, etc. We didn't "carb load" her, we tried to stick to higher protein stuff for a few days.
All in all, it has made a WORLD of difference for her disposition. She is having fewer seizures than before her illness. We don't know if they will eventually creep back up, but it just became clear that the diet wasn't helping her enough to make the trouble and hassle worth it. And putting LIly back on a regular diet opens up all kinds of teaching/therapy possibilites because food is a major motivator for Lily. We can use it as a reward for performing certain tasks and activites.
We couldn't be happier with our decision, despite it being an unconventional move and not what we had originally talked about with our neurologist.
Lily is also going to be weaned off of Ganaxolone, the study drug she takes. Marinus, the drug company sponsoring the study, has found that Ganaxolone doesn't provide the kinds of seizure control results they wanted so they're pulling the study & will not be pursuing FDA approval (at least for use in Infantile Spasms...it could be approved for other siezure types). So, we start the wean next Monday and she'll be off by early February.
This leaves us in a bit of a pickle as we're waiting on some genetic testing results before we start the next medication that we want to try (Valproic Acid). We'll set up the plan next week, but we may add a different med to bridge the time before our genetic results are back.
Lily was officially diagnosed with autism this summer. Normally parents don't cheer this diagnosis, but we did! This opens up a benefit in our insurance that will cover the majority of ABA therapy for Lily. I'm working on getting that set up for her now. I'm so excited about this! I just know it's going to do wonders for Lily and that she'll really start to learn. Our friends Cody and Sophie have both exploded in development with the use of ABA.
Lily is 1/3 the way through her first year of school. We really like her teacher and her 1:1 aide, and are happy with how things are going. We're going to revise some of her IEP goals soon now that we can use food as a motivator/teaching tool. There's just so much more we can do with Lily without the burden of food restrictions!
Finally we are working on arranging a trip out to consult with Dr. Harry Chugani at Children's Hospital of Michigan. Dr. Chugani is considered "the" doctor to see among IS parents. He has pioneered the use of PET scans to treat Infantile Spasms and determine if kiddos are surgical candidates or not. It's a path we've considered for a long time, since Lily was 6 months old at least. We haven't been able to pursue it this past year since Lily's been on the diet, but now that she's off we are planning a trip. It won't be easy -- it involves a 24 hour EEG, a PET scan (with sedation) and theoretically, a second kind of PET scan that Dr. Chugani is studying. Then on the fourth day we actually get to meet with Dr. Chugani and discuss all the results.
We'd probably take the whole family to go. It's very important for Hank & Lily to be together as they really depend on each other. It's important for Hank to be a part of Lily's world as it is, and will be, his world for his whole life. He's such a natural caretaker of her -- he is always checking on her, loves to snuggle her, and nwo that she's off-diet, FEED HER! LOL! Anyhow, since we'd be taking all four of us, we'll probably drive down to Maumee, OH to visit Todd's grandma. Hopefully Todd's mom will come up to visit, along with his sister & her kids. The four cousins haven't been together since before Lily was diagnosed -- October, 2005! I can't wait for these kids to be together and play!!
Here are the twins on Christmas Eve:
First off, HI JEAN!
Ok, now that's out of the way...
Lily came off the Ketogenic Diet over Christmas. It wasn't planned, and I think our neurologist is not super thrilled, but it was the right thing for us to do. Lily had a little stomach flu and couldn't keep anything Keto Friendly in her body. So we initiated the B.R.A.T. diet: Bananas, Rice, Applesauce, Toast. We stuck with bananas and dry toast, which aren't exactly Keto foods. And she was SO SO SO happy. Seriously, we haven't seen her that happy since before starting the diet. We did 24 hours of BRAT, then tried some Keto Foods. And they just went right through her, so back to BRAT we went. And she was so happy, not exhibiting ANY side effects of "normal" food, that we slowly introduced other normal stuff: turkey, beef, milk, cheese, yogurt, etc. We didn't "carb load" her, we tried to stick to higher protein stuff for a few days.
All in all, it has made a WORLD of difference for her disposition. She is having fewer seizures than before her illness. We don't know if they will eventually creep back up, but it just became clear that the diet wasn't helping her enough to make the trouble and hassle worth it. And putting LIly back on a regular diet opens up all kinds of teaching/therapy possibilites because food is a major motivator for Lily. We can use it as a reward for performing certain tasks and activites.
We couldn't be happier with our decision, despite it being an unconventional move and not what we had originally talked about with our neurologist.
Lily is also going to be weaned off of Ganaxolone, the study drug she takes. Marinus, the drug company sponsoring the study, has found that Ganaxolone doesn't provide the kinds of seizure control results they wanted so they're pulling the study & will not be pursuing FDA approval (at least for use in Infantile Spasms...it could be approved for other siezure types). So, we start the wean next Monday and she'll be off by early February.
This leaves us in a bit of a pickle as we're waiting on some genetic testing results before we start the next medication that we want to try (Valproic Acid). We'll set up the plan next week, but we may add a different med to bridge the time before our genetic results are back.
Lily was officially diagnosed with autism this summer. Normally parents don't cheer this diagnosis, but we did! This opens up a benefit in our insurance that will cover the majority of ABA therapy for Lily. I'm working on getting that set up for her now. I'm so excited about this! I just know it's going to do wonders for Lily and that she'll really start to learn. Our friends Cody and Sophie have both exploded in development with the use of ABA.
Lily is 1/3 the way through her first year of school. We really like her teacher and her 1:1 aide, and are happy with how things are going. We're going to revise some of her IEP goals soon now that we can use food as a motivator/teaching tool. There's just so much more we can do with Lily without the burden of food restrictions!
Finally we are working on arranging a trip out to consult with Dr. Harry Chugani at Children's Hospital of Michigan. Dr. Chugani is considered "the" doctor to see among IS parents. He has pioneered the use of PET scans to treat Infantile Spasms and determine if kiddos are surgical candidates or not. It's a path we've considered for a long time, since Lily was 6 months old at least. We haven't been able to pursue it this past year since Lily's been on the diet, but now that she's off we are planning a trip. It won't be easy -- it involves a 24 hour EEG, a PET scan (with sedation) and theoretically, a second kind of PET scan that Dr. Chugani is studying. Then on the fourth day we actually get to meet with Dr. Chugani and discuss all the results.
We'd probably take the whole family to go. It's very important for Hank & Lily to be together as they really depend on each other. It's important for Hank to be a part of Lily's world as it is, and will be, his world for his whole life. He's such a natural caretaker of her -- he is always checking on her, loves to snuggle her, and nwo that she's off-diet, FEED HER! LOL! Anyhow, since we'd be taking all four of us, we'll probably drive down to Maumee, OH to visit Todd's grandma. Hopefully Todd's mom will come up to visit, along with his sister & her kids. The four cousins haven't been together since before Lily was diagnosed -- October, 2005! I can't wait for these kids to be together and play!!
Here are the twins on Christmas Eve:
Monday, April 21, 2008
Chug-chug-chugging along
Well, Lily's MRI was cancelled at the last moment due to her having a cold a few days prior. The anesthesiologist was concerned as it can complicate sedation, and since he's not right in the room by her, he just felt the (small) increased risk wasn't worht it for what is, ultimately, an elective procedure.
So, we're rescheduled for 4/29.
We've increased Lily's ketogenic ratio to 2.5:1. So far, so good. One really great thing is that I've finally figured out a way to get Lily to drink the cream! I figured out the right combo of dilution (to make it the consistency of milk) & flavoring (a little sugar-free vanilla syrup + 5 drops of bickfords banana flavor). I also created a couple meals with some of her favorite foods. She's now having some Cheerios occasionally (there are actually a good amount of Cheerios in only 6 grams!), and I also found out about Miracle Noodles which are basically just soluable fiber (thus, no calories or carbs) shaped noodles. So I was able to make her a fairly tasty Mac 'n Cheese meal. It has a really good volume to it, so I think she actually *felt* full for once in a long time.
She's drinking water very consistently (hooray!) which is great as we learned recently that her last round of labs indicated some dehydration.
We started the paperwork to transition Lily in to the developmental preschool in our school district. She'll have the full round of evaluations in the next month, and then at the end of May we'll meet to discuss her eligibility. Finally, in mid-June we'll meet to draft Lily's first IEP. I'm already gathering all my information, and formulating what I want on her IEP right now. I'm talking with lots of friends who have knowledge of the process, and getting my arsenal of advocates in my bag.
Todd & I are heading out this weekend to Vegas for our 1st vacation since having kids. I figured out it has been nearly three years since we've been on a vacation of any sort. I'm very much looking forward to leaving the twins with my parents, and being able to just turn off my brain for three days. blissssss
So, we're rescheduled for 4/29.
We've increased Lily's ketogenic ratio to 2.5:1. So far, so good. One really great thing is that I've finally figured out a way to get Lily to drink the cream! I figured out the right combo of dilution (to make it the consistency of milk) & flavoring (a little sugar-free vanilla syrup + 5 drops of bickfords banana flavor). I also created a couple meals with some of her favorite foods. She's now having some Cheerios occasionally (there are actually a good amount of Cheerios in only 6 grams!), and I also found out about Miracle Noodles which are basically just soluable fiber (thus, no calories or carbs) shaped noodles. So I was able to make her a fairly tasty Mac 'n Cheese meal. It has a really good volume to it, so I think she actually *felt* full for once in a long time.
She's drinking water very consistently (hooray!) which is great as we learned recently that her last round of labs indicated some dehydration.
We started the paperwork to transition Lily in to the developmental preschool in our school district. She'll have the full round of evaluations in the next month, and then at the end of May we'll meet to discuss her eligibility. Finally, in mid-June we'll meet to draft Lily's first IEP. I'm already gathering all my information, and formulating what I want on her IEP right now. I'm talking with lots of friends who have knowledge of the process, and getting my arsenal of advocates in my bag.
Todd & I are heading out this weekend to Vegas for our 1st vacation since having kids. I figured out it has been nearly three years since we've been on a vacation of any sort. I'm very much looking forward to leaving the twins with my parents, and being able to just turn off my brain for three days. blissssss
Tuesday, April 1, 2008
Still not much to report!
We had our 1st diet follow-up appointment about 10 days ago. Her labs all look great, and we could probably move up in ratio if we wanted. We haven't pushed for that yet, but may next week.
While we haven't seen a big change in #'s of spasms, we have seen an increase in Lily's alertness, and engaging with us. She's also fairly consistently signing for "more"! This is a HUGE accomplishment for Lily, and really indicates she's learning cause & effect. Naturally, she associates it with food which we want to get away from, but for now we're just enjoying the accomplisment and not trying to change it too much.
Lily has an MRI tomorrow (Tuesday, 4/1). It's just a routine MRI, to make sure the changes Lily experienced while on Vigabatrin are still gone (the Keto diet can make these changes re-appear), and also just to check for any abnormalities now that her brain is a bit more developed. She hasn't had one in nearly two years, so it's kind of a big deal.
Other than that, we're still going to start the transition to the school district next week, and get the process going for Lily's first IEP! YIKES!
While we haven't seen a big change in #'s of spasms, we have seen an increase in Lily's alertness, and engaging with us. She's also fairly consistently signing for "more"! This is a HUGE accomplishment for Lily, and really indicates she's learning cause & effect. Naturally, she associates it with food which we want to get away from, but for now we're just enjoying the accomplisment and not trying to change it too much.
Lily has an MRI tomorrow (Tuesday, 4/1). It's just a routine MRI, to make sure the changes Lily experienced while on Vigabatrin are still gone (the Keto diet can make these changes re-appear), and also just to check for any abnormalities now that her brain is a bit more developed. She hasn't had one in nearly two years, so it's kind of a big deal.
Other than that, we're still going to start the transition to the school district next week, and get the process going for Lily's first IEP! YIKES!
Monday, March 17, 2008
Hanging in there
Not much new to report. Lily continues on her diet at a 2:1 ratio. She's still very picky about what she will & won't drink, but she's getting better at sipping water all day long. I pretty much always have a sippy of water laying around, and she'll take a swig throughout the day.
We're still seeing seizures, but everyone seems to agree that her attention & "alertness" has increased since starting the diet. We have our 1st follow up appointment on Wednesday, and I'm anxious to hear what they have to say (along with what her labs look like).
We start the transition into the school district special education program in April. Lots of evaluations & developmental profiles to be completed, and I'm all sorts of nervous about it.
That's all from around here!
We're still seeing seizures, but everyone seems to agree that her attention & "alertness" has increased since starting the diet. We have our 1st follow up appointment on Wednesday, and I'm anxious to hear what they have to say (along with what her labs look like).
We start the transition into the school district special education program in April. Lots of evaluations & developmental profiles to be completed, and I'm all sorts of nervous about it.
That's all from around here!
Wednesday, February 13, 2008
Keto Diet, Day 1
Well, we've had a looooooooooooooooooooooooooooooooooooooooooooong day here at Children's. First, Lily was to fast after dinner with the exception of "Keto approved drinks" (no-calorie fruit flavored water, or the like). No meds either, until after labs. We were to be here at 11:00 for labs, then a noon admit. After labs, Lily was allowed a cup of "Keto milk" (diluted heavy cream), but she wasn't too excited about it. Well, then our room wasn't ready at noon. Then it wasn't ready at 1. FINALLY at about 2:30pm we were taken to our room, a decent sized single on the medical floor. It's noisier up here than it generally is in the telemetry unit, but the nurses have all been great.
We were supposed to get her 1st meal (1/3rd her calories, at a 3:1 ratio) right after arriving in our room. But the dietician ended up not getting it to us until 4:45. Our girl was NOT a happy camper. But she eat her tiny meal and then fell asleep at about 6:00 for a couple hours.
She woke at about 8:00, ready for her 2nd keto meal (also tiny) and was up for a play time. I had *JUST* gotten her settled for the night when the nurse came in to tell us we were being bumped into a double room because they needed the single for an RSV kid who was being admitted from the ER. *SIGH* What can you say to that?? So now we're all tucked into our new room, Lily is asleep (again, hopefully for the night). She took a while to coax back to sleep, but seems to be resting peacefully for now.
(Our roommates, while VERY nice and sweet, are not super considerate. They have the bright lights on (at midnight), loud toys & TV, and the mom keeps talking to me! Not the worst thing in the world of course (and at least she's really nice), but dude. It's after midnight. TURN YOUR LIGHTS DOWN. Ah well.
If you can, please spare a good thought or prayer (whatever is your choosing) for my grandmother. She's nearly 80 & in the hospital pretty sick. There is some concern of lymphoma & she has a surgery in the morning to remove/biopsy some lymphs. [worry]
Off to bed now. *YAWN*
We were supposed to get her 1st meal (1/3rd her calories, at a 3:1 ratio) right after arriving in our room. But the dietician ended up not getting it to us until 4:45. Our girl was NOT a happy camper. But she eat her tiny meal and then fell asleep at about 6:00 for a couple hours.
She woke at about 8:00, ready for her 2nd keto meal (also tiny) and was up for a play time. I had *JUST* gotten her settled for the night when the nurse came in to tell us we were being bumped into a double room because they needed the single for an RSV kid who was being admitted from the ER. *SIGH* What can you say to that?? So now we're all tucked into our new room, Lily is asleep (again, hopefully for the night). She took a while to coax back to sleep, but seems to be resting peacefully for now.
(Our roommates, while VERY nice and sweet, are not super considerate. They have the bright lights on (at midnight), loud toys & TV, and the mom keeps talking to me! Not the worst thing in the world of course (and at least she's really nice), but dude. It's after midnight. TURN YOUR LIGHTS DOWN. Ah well.
If you can, please spare a good thought or prayer (whatever is your choosing) for my grandmother. She's nearly 80 & in the hospital pretty sick. There is some concern of lymphoma & she has a surgery in the morning to remove/biopsy some lymphs. [worry]
Off to bed now. *YAWN*
Monday, January 28, 2008
We're set to star the Keto Diet!
Well, we have our start date for the Keto Diet: February 12.
Lily will be admitted to Children's for four days. During those four days, she'll start out with a short fast, then will begin eating Keto Meals at 1/3 her calculated calories, then 2/3 her calories, and the last two days will be at "full strength". I expect her to be somewhat crabby as she's a girl who Likes To Eat.
(Originally, we were looking at a start date of 2/5 which is Super Tuesday...selfishly, I'm thrilled to wait a week so I can keep my date w/my good friend Amy to watch Super Tuesday coverage all day & then have dinner w/our husbands while we watch returns. Gotta have SOME adult time, right?)
We've begun preparing for the diet by introducing some keto meals to Lily. We've offered her diluted heavy cream to drink (she likes), made some keto "chocolate milk" (diluted cream w/sugar free chocolate flavoring & a couple drops of Stevia), scrambled eggs slathered in butter (not a huge hit), and Keto Egg Nog (she liked that). I'm also getting used to lookign at EVERY label of food and discerning what has hidden carbs in it (lots of stuff!). I'm putting together my list of items to purchase before starting the diet (I need new measuring spoons and lots of little plastic containers to store stuff). I've finished reading Keto Kid, and am about 1/2 way through The Ketogenic Diet by John Freeman (aka: the keto diet bible!). I'm putting together a whole "keto diet folder" with recipes, information, and lots of other stuff that I can keep in the kitchen and take to appointments with me.
While Lily is in the hospital, I think I'm going to see if there's a social worker or someone who could spend a little time with me & Hank to help explain to him about Lily's diet, and why she needs all this special care & attention. I noticed him mimicking her spasms the other day (doing a head drop & then fake cry). I don't think it was to get attention, I think it really was just trying it on. He didn't seem to really want us to notice that he was doing it. I didn't make a big deal about it, but we did talk a little about it. He's very aware of Lily & her condition, and I think it is important to not let those feelings of his get lost in the shuffle. Fortunatley, during our hospital stay we aren't confined to our room so we can all go play in the playroom or perhaps even take a dip in the therapy pool.
Now that we've decided to move forward with this, I kind of just wish we didn't have to wait these last two weeks. The waiting & anticipation is hard!
Lily will be admitted to Children's for four days. During those four days, she'll start out with a short fast, then will begin eating Keto Meals at 1/3 her calculated calories, then 2/3 her calories, and the last two days will be at "full strength". I expect her to be somewhat crabby as she's a girl who Likes To Eat.
(Originally, we were looking at a start date of 2/5 which is Super Tuesday...selfishly, I'm thrilled to wait a week so I can keep my date w/my good friend Amy to watch Super Tuesday coverage all day & then have dinner w/our husbands while we watch returns. Gotta have SOME adult time, right?)
We've begun preparing for the diet by introducing some keto meals to Lily. We've offered her diluted heavy cream to drink (she likes), made some keto "chocolate milk" (diluted cream w/sugar free chocolate flavoring & a couple drops of Stevia), scrambled eggs slathered in butter (not a huge hit), and Keto Egg Nog (she liked that). I'm also getting used to lookign at EVERY label of food and discerning what has hidden carbs in it (lots of stuff!). I'm putting together my list of items to purchase before starting the diet (I need new measuring spoons and lots of little plastic containers to store stuff). I've finished reading Keto Kid, and am about 1/2 way through The Ketogenic Diet by John Freeman (aka: the keto diet bible!). I'm putting together a whole "keto diet folder" with recipes, information, and lots of other stuff that I can keep in the kitchen and take to appointments with me.
While Lily is in the hospital, I think I'm going to see if there's a social worker or someone who could spend a little time with me & Hank to help explain to him about Lily's diet, and why she needs all this special care & attention. I noticed him mimicking her spasms the other day (doing a head drop & then fake cry). I don't think it was to get attention, I think it really was just trying it on. He didn't seem to really want us to notice that he was doing it. I didn't make a big deal about it, but we did talk a little about it. He's very aware of Lily & her condition, and I think it is important to not let those feelings of his get lost in the shuffle. Fortunatley, during our hospital stay we aren't confined to our room so we can all go play in the playroom or perhaps even take a dip in the therapy pool.
Now that we've decided to move forward with this, I kind of just wish we didn't have to wait these last two weeks. The waiting & anticipation is hard!
Thursday, January 17, 2008
Long time no post!
I'm such a bad blogging mama! It's been ages since I've checked in. Rather than recapping the past six months, I'm just going to give a quick summary of where were at, and then start updating from here.
Ganaxolone - Study Med
Lily continues on Ganaxolone. She is currently at the highest dose the drug company will allow, and it is helping reduce the # of seizures, but has not made us seizure free.
EEG
Lily had a 24-hour EEG last month which indicated that she was A) still having spasms, and B) still having hypsarrhythmia. Bummer. But we already knew 50% of that, right? She's having a "hypsarrhythmia variant" which essentially means it's a more organized hyps, due to her growing up. Our neurologist said that while it was different than a year ago, it was not improved. Big bummer.
Therapy/Early Intervention/Pre School
In November/December, we made the decision to discontinue Lily's therapies through Wonderland, and instead enroll her in a private therapy center. We were sad to leave our therapists at Wonderland (although we maintain contact with them), but we're SO happy we made the switch. Lily's needs are so great that the model Wonderland had adopted just wasn't enough for her. Now she gets direct, intense physical therapy twice a week, and speech/OT once a week. We're very happy with this.
We are also enrolled in the once a week preschool class at Little Red. Last fall I tried desperately to find a good preschool program for the twins, but there just wasn't anything to accomodate Lily's needs. I finally called the people at Little Red just in tears, and they made arrangements for us in their program. We are ETERNALLY grateful, and are so very happy there. Hank goes to a twice a week class on Monday & Wednesday, and Lily goes on Wednesdays (in a different class).
We're also facing our transition to the school district as the twins' 3rd birthday looms ever closer. The Shoreline School district (where we live) has an adequate special ed program, however they don't enroll typical "peer models" (ie: Hank), so the twins would have to go to different schools. Not my ideal situation, not to mention very inconvenient! Also, Shoreline is experiencing a "budget crisis" and have significantly cut funding for Special Ed. I've talked with some people also, parents & others who have experience with the district, and the reviews are mixed. So we're exploring options on this front as well, including requesting an "intra-district transfer" (meaning she'd go to school in a different district), and/or moving to a different district.
I constantly joke that I need to make myself a t-shirt that says "Yes, I am THAT parent." LOL!
What's going on now
So, where do we go from here? Well, we're most likely starting Lily on the Ketogenic Diet (click link for Wiki about the diet). We met with the dietician yesterday to get a sense of the diet and how the program works at Children's. We enjoyed our discussion with her, and feel hopeful that the diet will be a good move for Lily.
We're weaning her off Prednisone (FINALLY), so she'll soon only be on the Ganaxolone & Topamax. Hopefully if the diet is successful, we can eventually wean off Topamax and/or Ganaxolone (though Topamax would be my 1st choice).
Aside from all the medical, seizure related stuff, Lily is a gem. She walks around (unsteadily; we call her our little Pinball!) and likes to pick stuff up off the floor. She loves toys that shake/rattle, make music and/or light up. She will occasionally sit still to look at a picture book. We're working very hard on trying to get her to put objects into a container. She's good at taking stuff out, but doesn't seem to understand putting them in.
She was great with the Christmas tree! She would try & touch it but responded when we would say "No, no Lily!" in our "warning" voice. Frankly, we had a harder time with Hank & the tree than we ever did with Lily!
She still isn't the best sleeper. She takes a while to fall asleep and then generally wakes up once in the night for an hour or so. She's also the 1st to rise every day, usually an hour or more before her brother.
One of my goals for the year is to be better about blogging about Lily. I know there are people who check here every day (you know who you are!), and who care so much about Lily. I hope to be better about this than I was last year. :)
Ganaxolone - Study Med
Lily continues on Ganaxolone. She is currently at the highest dose the drug company will allow, and it is helping reduce the # of seizures, but has not made us seizure free.
EEG
Lily had a 24-hour EEG last month which indicated that she was A) still having spasms, and B) still having hypsarrhythmia. Bummer. But we already knew 50% of that, right? She's having a "hypsarrhythmia variant" which essentially means it's a more organized hyps, due to her growing up. Our neurologist said that while it was different than a year ago, it was not improved. Big bummer.
Therapy/Early Intervention/Pre School
In November/December, we made the decision to discontinue Lily's therapies through Wonderland, and instead enroll her in a private therapy center. We were sad to leave our therapists at Wonderland (although we maintain contact with them), but we're SO happy we made the switch. Lily's needs are so great that the model Wonderland had adopted just wasn't enough for her. Now she gets direct, intense physical therapy twice a week, and speech/OT once a week. We're very happy with this.
We are also enrolled in the once a week preschool class at Little Red. Last fall I tried desperately to find a good preschool program for the twins, but there just wasn't anything to accomodate Lily's needs. I finally called the people at Little Red just in tears, and they made arrangements for us in their program. We are ETERNALLY grateful, and are so very happy there. Hank goes to a twice a week class on Monday & Wednesday, and Lily goes on Wednesdays (in a different class).
We're also facing our transition to the school district as the twins' 3rd birthday looms ever closer. The Shoreline School district (where we live) has an adequate special ed program, however they don't enroll typical "peer models" (ie: Hank), so the twins would have to go to different schools. Not my ideal situation, not to mention very inconvenient! Also, Shoreline is experiencing a "budget crisis" and have significantly cut funding for Special Ed. I've talked with some people also, parents & others who have experience with the district, and the reviews are mixed. So we're exploring options on this front as well, including requesting an "intra-district transfer" (meaning she'd go to school in a different district), and/or moving to a different district.
I constantly joke that I need to make myself a t-shirt that says "Yes, I am THAT parent." LOL!
What's going on now
So, where do we go from here? Well, we're most likely starting Lily on the Ketogenic Diet (click link for Wiki about the diet). We met with the dietician yesterday to get a sense of the diet and how the program works at Children's. We enjoyed our discussion with her, and feel hopeful that the diet will be a good move for Lily.
We're weaning her off Prednisone (FINALLY), so she'll soon only be on the Ganaxolone & Topamax. Hopefully if the diet is successful, we can eventually wean off Topamax and/or Ganaxolone (though Topamax would be my 1st choice).
Aside from all the medical, seizure related stuff, Lily is a gem. She walks around (unsteadily; we call her our little Pinball!) and likes to pick stuff up off the floor. She loves toys that shake/rattle, make music and/or light up. She will occasionally sit still to look at a picture book. We're working very hard on trying to get her to put objects into a container. She's good at taking stuff out, but doesn't seem to understand putting them in.
She was great with the Christmas tree! She would try & touch it but responded when we would say "No, no Lily!" in our "warning" voice. Frankly, we had a harder time with Hank & the tree than we ever did with Lily!
She still isn't the best sleeper. She takes a while to fall asleep and then generally wakes up once in the night for an hour or so. She's also the 1st to rise every day, usually an hour or more before her brother.
One of my goals for the year is to be better about blogging about Lily. I know there are people who check here every day (you know who you are!), and who care so much about Lily. I hope to be better about this than I was last year. :)
Tuesday, April 17, 2007
Big News around here
I'm such a bad blogger. I'm so sorry for not updating more often.
Lots has happened since my last update!
When we left off, we'd started Prednisone again. It seems to slowly be helping. We've bumped the dose up twice, so she's now at 20mg/day (when she started at 10mg/day). We definitely see a difference in her appetite & disposition (she's a bit grumpier), but it's NOTHING like ACTH life. She gets benadryl at bedtime to help with sleeping, but naps are often a struggle.
Her spasms have definitely decreased in frequency. She often has days with only one or two clusters (instead of 7-10 clusters daily that we were at). We email w/Dr. Bow Tie weekly to check in & keep the pressure on about the Ganaxolone study.
Speaking of the study, it STILL isn't ready to go yet. It's very frustrating! There's a bunch of red tape they're trying to get through ("who will paaaaaay for the nurse to do blood draws???") internally at Children's, and they're waiting on Marinus's final approval as well. I gently nudge Dr. Bow Tie about it each week, and hope that one day soon we'll have a start date.
The other Big News is that we bought a new house!!! We bought the house next door to my mom & dad! WHEE!! It is going to be wonderful living next door to them! The house is bigger too, which will be great for all our crap. There is a rec-room in the basement which will double as our TV room & playroom for the kids. I'm so excited to have a bigger, dedicated area for kid stuff. At my twin club's rummage sale this weekend, I bought a kitchen for the kids! Hank loves to play with the one at our Toddler Group through Lily's early intervention. I also bought a little pint-sized picnic table for our deck off the dining room. I can't wait to make peanut butter & jelly for the kids & eat outside this summer.
We close on May 9 & will probably move the following weekend. We were fortunatley able to work out a great situation with my brother & he and his girlfriend are buying our current hosue from us! This allows us to stay in our house until we close, and not have to do any cleaning/staging to have it listed with an agent. We're also able to take our time packing & getting ready to go.
The biggest drawback to moving is that LIly has to change centers where she gets her birth-to-three services. We're moving into a different county (we live about 6 blocks north of the county line; our new house is about 6 blocks SOUTH of the county line, oy!), and therefore we have to switch early intervention centers for Lily. :( :( :( :( I"m so sad to be leaving Little Red!! THey've been SOO good to us, and I'll be very sad to leave all our therapists. The new center, Wonderland, seems like it'll be great, but it's still a hard switch. It seems like they'll offer a bit more flexibility in terms of what kinds of therapy to give to LIly & where. For instance, we can sign up fro a class in the community, or at our local pool & coordinate it with our therapist & they'll go to the class with us. That woudl work really well as it would give me 1-on-1 time with Hank, plus Lily would get services in the "natural environment" (thank you NCLB! Grumble, grumble). The offer a Toddler class, but unfortunately it's full right now. We're on a waiting list but since we're lookign for two openings (they also take typically developing kids), it could be a while.
The BIGGEST bummer is that Little REd offers a preschool for their students once they turn two. My kids were going to go to it in the fall. It's twice a week for two hours each time. Wonderland doesn't have anything like that, which totally bums me out. I'm going to look into a couple other Birth to Three programs in our county, specifically Boyer Clinic, and the Experimental Education Unit at the UW as well. Wonderland is TERRIBLY convenient though, only about 1/4 mile away from our new house. I don't know. It's hard. She's going to age out of Birth to Three in a year & will matriculate into the school district, so I don't know if I really want to get super involved in a program that services Seattle Schools. However, the EEU has classes for SN & Typical kids too, so that'd be good. I think there's a waiting list though...
I know it will all work out for the best, but it's making me very sad to think about saying goodbye to our wonderful therapists.
The other thing we've had done since my last update is we had our opthamologist appointment at the beginnign of the month. We were thrilled to learn that Lily has PERFECT eye sight!!! No problems, no concerns, nothing. There aren't many things that we hear doctors say are "normal" about Lily, so it was thrilling to hear the doctor say, "Lily's eyes are perfectly normal & she sees as well as other kids her age!" WHEE!!!!!!!!
I expect the next few weeks to be very busy with our preparations to move, but I hope to keep the blog updated as we trasnition from Little Red to Wonderland. Since EI is such a big part of our life & schedule, it'll be good to keep it updated here.
Lots has happened since my last update!
When we left off, we'd started Prednisone again. It seems to slowly be helping. We've bumped the dose up twice, so she's now at 20mg/day (when she started at 10mg/day). We definitely see a difference in her appetite & disposition (she's a bit grumpier), but it's NOTHING like ACTH life. She gets benadryl at bedtime to help with sleeping, but naps are often a struggle.
Her spasms have definitely decreased in frequency. She often has days with only one or two clusters (instead of 7-10 clusters daily that we were at). We email w/Dr. Bow Tie weekly to check in & keep the pressure on about the Ganaxolone study.
Speaking of the study, it STILL isn't ready to go yet. It's very frustrating! There's a bunch of red tape they're trying to get through ("who will paaaaaay for the nurse to do blood draws???") internally at Children's, and they're waiting on Marinus's final approval as well. I gently nudge Dr. Bow Tie about it each week, and hope that one day soon we'll have a start date.
The other Big News is that we bought a new house!!! We bought the house next door to my mom & dad! WHEE!! It is going to be wonderful living next door to them! The house is bigger too, which will be great for all our crap. There is a rec-room in the basement which will double as our TV room & playroom for the kids. I'm so excited to have a bigger, dedicated area for kid stuff. At my twin club's rummage sale this weekend, I bought a kitchen for the kids! Hank loves to play with the one at our Toddler Group through Lily's early intervention. I also bought a little pint-sized picnic table for our deck off the dining room. I can't wait to make peanut butter & jelly for the kids & eat outside this summer.
We close on May 9 & will probably move the following weekend. We were fortunatley able to work out a great situation with my brother & he and his girlfriend are buying our current hosue from us! This allows us to stay in our house until we close, and not have to do any cleaning/staging to have it listed with an agent. We're also able to take our time packing & getting ready to go.
The biggest drawback to moving is that LIly has to change centers where she gets her birth-to-three services. We're moving into a different county (we live about 6 blocks north of the county line; our new house is about 6 blocks SOUTH of the county line, oy!), and therefore we have to switch early intervention centers for Lily. :( :( :( :( I"m so sad to be leaving Little Red!! THey've been SOO good to us, and I'll be very sad to leave all our therapists. The new center, Wonderland, seems like it'll be great, but it's still a hard switch. It seems like they'll offer a bit more flexibility in terms of what kinds of therapy to give to LIly & where. For instance, we can sign up fro a class in the community, or at our local pool & coordinate it with our therapist & they'll go to the class with us. That woudl work really well as it would give me 1-on-1 time with Hank, plus Lily would get services in the "natural environment" (thank you NCLB! Grumble, grumble). The offer a Toddler class, but unfortunately it's full right now. We're on a waiting list but since we're lookign for two openings (they also take typically developing kids), it could be a while.
The BIGGEST bummer is that Little REd offers a preschool for their students once they turn two. My kids were going to go to it in the fall. It's twice a week for two hours each time. Wonderland doesn't have anything like that, which totally bums me out. I'm going to look into a couple other Birth to Three programs in our county, specifically Boyer Clinic, and the Experimental Education Unit at the UW as well. Wonderland is TERRIBLY convenient though, only about 1/4 mile away from our new house. I don't know. It's hard. She's going to age out of Birth to Three in a year & will matriculate into the school district, so I don't know if I really want to get super involved in a program that services Seattle Schools. However, the EEU has classes for SN & Typical kids too, so that'd be good. I think there's a waiting list though...
I know it will all work out for the best, but it's making me very sad to think about saying goodbye to our wonderful therapists.
The other thing we've had done since my last update is we had our opthamologist appointment at the beginnign of the month. We were thrilled to learn that Lily has PERFECT eye sight!!! No problems, no concerns, nothing. There aren't many things that we hear doctors say are "normal" about Lily, so it was thrilling to hear the doctor say, "Lily's eyes are perfectly normal & she sees as well as other kids her age!" WHEE!!!!!!!!
I expect the next few weeks to be very busy with our preparations to move, but I hope to keep the blog updated as we trasnition from Little Red to Wonderland. Since EI is such a big part of our life & schedule, it'll be good to keep it updated here.
Wednesday, March 14, 2007
First Appointment with Dr. Bow Tie
So yesterday morning, we had our 1st appointment w/Dr. Bow Tie. He was rapidly inducted to the "family appointment" as my mom, dad & brother all joined Todd & I for the appointment.
I'm just going to do stream-of-consciousness style to update the visit, so this may jump around a bit.
Lily's EEG showed spike & wave activity plus modified hypsarrhythmia while sleeping. It's improved over her initial diagnosis (when she had hyps all the time), and it is good that she doesn't have the hyps while awake. But, of course we're going for seizure free & clear EEG.
The activity appears to be even across all hemispheres of the brain, and therefore he does not think surgery is an option. I would eventually still like to pursure a consult with Dr. Detroit to get his opinion. There are many, many stories of local neuros saying "not a surgical candidate" but then Dr. Detroit works his magic & does surgery & child becomes seizure free.
Dr. Bow Tie thinks that the skin/muscle biopsy is definitely a worthwhile test as apparently metabolic/mitochondrial disorders can also show hypometabolism on a PET (which is what Lily's showed). Of course, cortical dysplasia also shows as hypometabolism on a PET, so it could still be either. My gut tells me we're working with some sort of dysplasia as opposed to a metabolic/mito disorder, but then who knows? So, there isn't an urgency to get the surgery and/or 3T-MRI, so we can put that off a bit.
The biggest news, perhaps, is that we've added Prednisone back into the mix and lowered her Topamax. Dr. Bow Tie didn't even flinch when I said that I had backed off a bit on the top, and was very agreeable to lowering it to the level she was at when she had the 24-hr EEG (75mg 2x/day). In all, we've lowered the dose by about 45% which I'm pleased about. I've already seen a big improvement in her level of alertness this morning, and her playfulness. We started the prednisone this morning, and so far I don't think I've seen any spasms this mroning. We'll see how the afternoon goes, of course.
We also talked about Ganaxolone. We think that actually Lily won't qualify for the study because she's tried more than two AED's over the course of her treatment. So I'm going to email the director & ask about that, and if she does NOT qualify, I'm going to ask about "compassionate care". Compassionate care is apparently where someone who doesn't qualify for the study, but would sitll benefit from the drug, can appeal to the FDA to get an exemption & start the med. Hopefully I'll hear back from the director soon.
That's pretty much it. Oh, I guess if the prednisone doesn't work in controlling the spasms, and if we can't get Ganaxolone, the Keto Diet is our next move. Cameran's Mommy, Karen, posted a great description in Cam's blog of what their typical day on the diet is like, complete with diet menu. Starting the Keto Diet would be a HUGE committment, and very time consuming & tricky (with a brother who likes to "share" his food with Luh-leee), but if it helped control the spasms, we'll make it work.
I'm just going to do stream-of-consciousness style to update the visit, so this may jump around a bit.
Lily's EEG showed spike & wave activity plus modified hypsarrhythmia while sleeping. It's improved over her initial diagnosis (when she had hyps all the time), and it is good that she doesn't have the hyps while awake. But, of course we're going for seizure free & clear EEG.
The activity appears to be even across all hemispheres of the brain, and therefore he does not think surgery is an option. I would eventually still like to pursure a consult with Dr. Detroit to get his opinion. There are many, many stories of local neuros saying "not a surgical candidate" but then Dr. Detroit works his magic & does surgery & child becomes seizure free.
Dr. Bow Tie thinks that the skin/muscle biopsy is definitely a worthwhile test as apparently metabolic/mitochondrial disorders can also show hypometabolism on a PET (which is what Lily's showed). Of course, cortical dysplasia also shows as hypometabolism on a PET, so it could still be either. My gut tells me we're working with some sort of dysplasia as opposed to a metabolic/mito disorder, but then who knows? So, there isn't an urgency to get the surgery and/or 3T-MRI, so we can put that off a bit.
The biggest news, perhaps, is that we've added Prednisone back into the mix and lowered her Topamax. Dr. Bow Tie didn't even flinch when I said that I had backed off a bit on the top, and was very agreeable to lowering it to the level she was at when she had the 24-hr EEG (75mg 2x/day). In all, we've lowered the dose by about 45% which I'm pleased about. I've already seen a big improvement in her level of alertness this morning, and her playfulness. We started the prednisone this morning, and so far I don't think I've seen any spasms this mroning. We'll see how the afternoon goes, of course.
We also talked about Ganaxolone. We think that actually Lily won't qualify for the study because she's tried more than two AED's over the course of her treatment. So I'm going to email the director & ask about that, and if she does NOT qualify, I'm going to ask about "compassionate care". Compassionate care is apparently where someone who doesn't qualify for the study, but would sitll benefit from the drug, can appeal to the FDA to get an exemption & start the med. Hopefully I'll hear back from the director soon.
That's pretty much it. Oh, I guess if the prednisone doesn't work in controlling the spasms, and if we can't get Ganaxolone, the Keto Diet is our next move. Cameran's Mommy, Karen, posted a great description in Cam's blog of what their typical day on the diet is like, complete with diet menu. Starting the Keto Diet would be a HUGE committment, and very time consuming & tricky (with a brother who likes to "share" his food with Luh-leee), but if it helped control the spasms, we'll make it work.
Tuesday, March 6, 2007
New Trial Drug + Lily bloodwork
Late last week I was given a lead to the manufacturer of Ganaxolone, the med that Dr. Bow Tie wants to try with Lily. He's been working on getting a study at our hospital for Ganaxolone at least since Lily's 24-hr EEG. Well, the lead I got last week, from the owner of Infantile Spasms, was for the director of the clinical trials.
I emailed her yesterday to try & get Lily started on Ganaxolone from a different angle. She wasn't able to get Lily on the new med, but did provide a little more information about the study at our hospital than I've been able to get from Dr. Bow Tie. Basically, the study will be coming to our hospital, but not for about a couple months. In the mean time, if we wanted to start Lily on Ganaxolone, we'd have to transfer her care to Children's of Los Angeles & basically live in LA for two months as the study requires several 24-hour EEG's over a period of three weeks.
No, thank you.
So we'll wait until Seattle gets it.
Last week we had labs drawn for Lily after our surgery consult. I spoke w/the nurse today about the results. Everything, including all metabolic testing, is completely normal with two exceptions: Lily's RBC & WBC counts were a little low. The RBC's are only slightly low & they weren't concerned with that (just need to get Lily to eat more iron-rich foods). There was mild concern over the low WBC's. Apparently this can be a common side effect of AED's. Lily's level was 938 & they like to see 1500+. She (the nurse) was going to email Dr. Bow Tie about it. I told her that we have an appointment wiht him next Tuesday & to please call if we need to address it sooner.
The other piece to Lily's labs was that we checked her Topamax blood level. Therapeutic blood levels are 15-20. Last we checked, we were slightly above a 15, and we increased the dose a bit to really push the topamax to the fullest. Well, her level came back at 22.5. So, at a FULL load of topamax, she's still having 4-8 clusters of spams each day, so clearly that's not working for us.
So, next Tuesday we'll be discussing what, if anything, we do in the mean time before getting Ganaxolone, plus the WBC issue. The other biggie to discuss is whether Lily actually needs this skin/muscle biopsy surgery or not.
More info on that:
Basically, the ONLY test Lily hasn't had to find a specific cause of her spasms is the skin/muscle biopsy. This test is kind of the final step in ruling out a mitochondrial reason for the spasms. It involves taking a sample of muscle from the thigh (from a 1" incision), and a small sample of skin near the under arm (smaller than 1" incision).
At the same time, we'd also do a 3T-MRI which uses a bigger, stronger magnet to look for structural abnormalities in Lily's brain that would be the cause of her spasms (and potentially make her a surgical candidate).
ALL of Lily's labs & urinalysis have come back normal for metabolic/mitochondrial testing. The only thing indicating a mito disorder was when her 2nd MRI, about a year ago, showed signal changes in the deep tissue of her brain. We have since attributed this to a very rare (unpublished) side effect of the vigabatrin she was on at the time, weaned her off that drug, and the changes have resovled (thus, it was not a mito disease).
Since all of her labs have been normal, PLUS we have the PET scan which shows some evidence of coritcal displaysia (fancy name for structural abnormality in the brain), I'm feeling like putting Lily through a surgery isn't really necessary. Dr. Bow Tie is the expert at our hospital in mitochondrial disorders, so if he has very good reasoning for the test, I'll reconsider. But when Nurse Wonderful suggested the test (on his behalf), she indicated that he was himming & hawing about whether she really needed it. So if he wasn't convinced then, and now her newest round of labs is still normal, I'm gonna push back on that.
No sense subjecting Lily to surgery if it isn't 100% warranted.
For now, she continues to do well. She's had a rough 24 hours as far as seizures are concerned, but she's still playing & eating well. We had OT with Leah yesterday afternoon at Little Red Schoolhouse, and she did really well with taking toys out of containers (something we're working on with her). She had a longer attention span, despite having several clusters during therapy, than I've seen for a while.
The weather out here is simply glorious right now -- currently 67 & sunny. I think we'll play outside this afternoon.
I emailed her yesterday to try & get Lily started on Ganaxolone from a different angle. She wasn't able to get Lily on the new med, but did provide a little more information about the study at our hospital than I've been able to get from Dr. Bow Tie. Basically, the study will be coming to our hospital, but not for about a couple months. In the mean time, if we wanted to start Lily on Ganaxolone, we'd have to transfer her care to Children's of Los Angeles & basically live in LA for two months as the study requires several 24-hour EEG's over a period of three weeks.
No, thank you.
So we'll wait until Seattle gets it.
Last week we had labs drawn for Lily after our surgery consult. I spoke w/the nurse today about the results. Everything, including all metabolic testing, is completely normal with two exceptions: Lily's RBC & WBC counts were a little low. The RBC's are only slightly low & they weren't concerned with that (just need to get Lily to eat more iron-rich foods). There was mild concern over the low WBC's. Apparently this can be a common side effect of AED's. Lily's level was 938 & they like to see 1500+. She (the nurse) was going to email Dr. Bow Tie about it. I told her that we have an appointment wiht him next Tuesday & to please call if we need to address it sooner.
The other piece to Lily's labs was that we checked her Topamax blood level. Therapeutic blood levels are 15-20. Last we checked, we were slightly above a 15, and we increased the dose a bit to really push the topamax to the fullest. Well, her level came back at 22.5. So, at a FULL load of topamax, she's still having 4-8 clusters of spams each day, so clearly that's not working for us.
So, next Tuesday we'll be discussing what, if anything, we do in the mean time before getting Ganaxolone, plus the WBC issue. The other biggie to discuss is whether Lily actually needs this skin/muscle biopsy surgery or not.
More info on that:
Basically, the ONLY test Lily hasn't had to find a specific cause of her spasms is the skin/muscle biopsy. This test is kind of the final step in ruling out a mitochondrial reason for the spasms. It involves taking a sample of muscle from the thigh (from a 1" incision), and a small sample of skin near the under arm (smaller than 1" incision).
At the same time, we'd also do a 3T-MRI which uses a bigger, stronger magnet to look for structural abnormalities in Lily's brain that would be the cause of her spasms (and potentially make her a surgical candidate).
ALL of Lily's labs & urinalysis have come back normal for metabolic/mitochondrial testing. The only thing indicating a mito disorder was when her 2nd MRI, about a year ago, showed signal changes in the deep tissue of her brain. We have since attributed this to a very rare (unpublished) side effect of the vigabatrin she was on at the time, weaned her off that drug, and the changes have resovled (thus, it was not a mito disease).
Since all of her labs have been normal, PLUS we have the PET scan which shows some evidence of coritcal displaysia (fancy name for structural abnormality in the brain), I'm feeling like putting Lily through a surgery isn't really necessary. Dr. Bow Tie is the expert at our hospital in mitochondrial disorders, so if he has very good reasoning for the test, I'll reconsider. But when Nurse Wonderful suggested the test (on his behalf), she indicated that he was himming & hawing about whether she really needed it. So if he wasn't convinced then, and now her newest round of labs is still normal, I'm gonna push back on that.
No sense subjecting Lily to surgery if it isn't 100% warranted.
For now, she continues to do well. She's had a rough 24 hours as far as seizures are concerned, but she's still playing & eating well. We had OT with Leah yesterday afternoon at Little Red Schoolhouse, and she did really well with taking toys out of containers (something we're working on with her). She had a longer attention span, despite having several clusters during therapy, than I've seen for a while.
The weather out here is simply glorious right now -- currently 67 & sunny. I think we'll play outside this afternoon.
Tuesday, February 27, 2007
Checking in
I've been horribly remiss in updating the blog, I'm sorry. It's been a busy month here!
Just a quick post before I run off to bed...Lily CRAWLED today, the furthest she's ever gone! She's pretty proficient in her "bear crawl", but we've been working with her a lot on regular, hands & knees crawling. Today she crawled all the way from Mimi (my mother in law) to me, kitty-corner from where she started, all on her hands & knees! It must've been 7 or 8 feet, which is BY FAR the furthest she's ever gone!
So proud of our Lily Bean!
We took a family trip to the Woodland Park Zoo for the first time a couple weeks ago, taking advantage of a wonderful Christmas gift from a dear friend. Lily enjoyed being outside in the fresh air, and especially enjoyed pulling up on the animal statues.
Tomorrow we have our surgical/anesthesia consult to discuss Lily's upcoming (yet to be scheduled) skin & muscle biopsy. More detail on that later. :)
Just a quick post before I run off to bed...Lily CRAWLED today, the furthest she's ever gone! She's pretty proficient in her "bear crawl", but we've been working with her a lot on regular, hands & knees crawling. Today she crawled all the way from Mimi (my mother in law) to me, kitty-corner from where she started, all on her hands & knees! It must've been 7 or 8 feet, which is BY FAR the furthest she's ever gone!
So proud of our Lily Bean!
We took a family trip to the Woodland Park Zoo for the first time a couple weeks ago, taking advantage of a wonderful Christmas gift from a dear friend. Lily enjoyed being outside in the fresh air, and especially enjoyed pulling up on the animal statues.
Tomorrow we have our surgical/anesthesia consult to discuss Lily's upcoming (yet to be scheduled) skin & muscle biopsy. More detail on that later. :)
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