Firstly, FANTASTIC news for Sophie!!! She's made it through surgery with great success! All the best case scenarios played out, and hopefully they'll never see another seizure again!! HOORAY!
As for me, well, I'm enjoying a fantastic weekend away from Todd & the kids at my family's cabin on Vashon. It's amazing over here: mid-70's, incredible view, and quiet. I arrived last night and spent the night by myself. This afternoon two of my best girlfriends are joining me for some girl-time.
But...(there's always a "but")...I'm finding it hard to just let go & relax. Maybe because I'm so constantly wound up it would take a full week of this to unwind? I don't know. But I just feel antsy. Like I should be doing something. Preparing meals, cleaning, researching, whatever. Anything that isn't totally FOR ME. It's weird. I wasn't expecting to feel like this.
(Maybe I just need some more wine! LOL!)
In Lily news, we started her on Vigabatrin again about a month ago. She was on VGB back in early 2006 when she was just a baby. She was on a very high dose of it, and it ultimately was responsible for her status seizure that landed her in the hospital for three days. During this hospital stay, her MRI revealed subtle brain changes that possibly indicated a terrible mitochondrial disorder called Leigh's Disease. Fortunately, thanks again to the IS Yahoo Group, I learned of another kiddo, Vic, who had a similar finding but it wasn't due to Leigh's; it was a rare side effect of the Vigabatrin. Some fast & furious research, phone calls, and discussion yielded a few other kids with similar findings, and the only way to know if it was due to VGB was to wean off of it, and repeat an MRI in six months.
I think you know where this goes, right? Lily didn't have Leigh's (THANKGOD!), but instead was just a rare side effect. She was one of a few kids who was written about in a paper published by Dr. Pearl at Children's National Medical Center in DC, about this particular side effect. Well, we always wondered if VGB would be good for Lily because it did really help control her seizures in 2006, but we wrote it off considering the bad side effects.
After we saw Dr. Chugani in February, we started considering it again as the paper suggested that young age & high dose were risk factors (both of which Lily had when she had the status). I sent an email to Dr. Pearl asking his opinion, just hoping he would write back...and he did! The next day! Amazing. AND he was familiar with Lily, and seemed genuinely pleased to hear from us. He was definitely in favor of trying it again, suggested not going over a certain dose, and that he'd tried it again on several kids with no recurrence of the s/x.
So, we started it again abotu a month ago...and it's been amazing. Lily's seizures have gone way down and we're just seeing an explosion of development. Her attention is significantly better. She'll follow your point to a toy when you have her attention; she responds to her name. She is learning to discriminate between two toys during ABA. It's amazing.
We're still on a fairly low dose with plenty of room to move up. I'm reluctant to though because we have such a good balance of s/x to seizures. I worry that if we moved up on dose, we'd see greater side effects (floppiness, sleepiness) with relatively little benefit. I could be convinced otherwise, and will bring it up at our next neuro appointment.
We had a successful IEP meeting to write the goals for next year. We're lucky to have such a great team working with Lily. I personally think she's going to meet a bunch of the goals over the summer through ABA therapy, but we'll see. We can revise in the fall if needed.
Lily's school is also beginning an inclusion program next year!! I couldn't be more thrilled about this! I've wanted an inclusion program for the early childhoold preschool since we knew Lily would be going there. Two neighboring districts have similar programs, and we seriously considered moving so that the twins could go to school together for even a short while. Well, next year Hank will get to go to school with Lily two days a week! We love his regular preschool so he'll continue to go there three days a week as well. This is likely the only opportunity Hank & Lily will have to go to school together so we're just overjoyed.
I'm also working with the program manager at her school to begin some parent involvement, maybe through an ECE PTA or other some kind of group. I miss that from the Birth to Three days, and I know it can be successful. I'm excited about it.
Showing posts with label Detroit. Show all posts
Showing posts with label Detroit. Show all posts
Saturday, May 30, 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:
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