Thursday, November 06, 2008

Goodbye Topamax...

Hello Trileptal.

We visited Ava's neurologist, Dr Sabo, this past Tuesday and got results from her MRI and latest EEG. Both Joe and I felt much more comfortable with her after this visit, I think she also has more input to share now that Ava has turned 3 and some major brain growth and development is complete. Her MRI was normal ruling out questions of correct placement of gray and white matter and thinning of the corpus callosum, these are the things that couldn't be determined due to her age of 11 months during her first MRI. This was no surprise to me, I think Ava's neurological problems are a symptom of whatever presumed genetic issue she has going on.

Here is a recap of problems and hopeful solutions we discussed with her, it's easier to put in a blog than explain to all those who are curious on an individual basis so I'll apologize in advance for the length:

*Ava seems to sleep 10-12 hours a night but still wakes tired and often can't function well after 3:00-4:00 pm. We have been struggling to understand if this is a behavior or medical based issue for her. It is quite possible that Ava's REM sleep is constantly being disrupted by discharges in her brain...are these seizures? Not sure but it definitely is not normal REM brain activity. The answer to this question could be in a 24 hour EEG but neither Ava nor I are ready for that. Maybe in a couple years this will be feasible if still necessary, an EEG may sound simple but little kids do not like 24 electrodes stuck to their heads for an hour let alone 24 hours.

*Since around August Ava has started rubbing her head again, trying to lay down often (I suspect she is getting vertigo) and very MOODY. We learned that the level of topamax she was taking was hardly therapeutic for her weight. We cut her meds early in the year and saw great improvements but due to growth and changes in her neurological system her EEG had shown a substantial change towards breakthrough seizure activity. We were given options of increasing her topamax or changing meds. We opted for the med change hoping to get away from some of the side effects of the topamax while addressing some of her moodiness. Her Dr said "You must remember that children with brain disorders tend to have behaviors people consider autistic". I guess only time will tell (she is NOT autistic, this we know).

*With the upcoming birth of Ava's sister pending we also discussed the potential that Ava has a birth injury from my broken pelvis (don't laugh, many people believe I am crazy for not requesting a cesarean) and stem cells. Dr Sabo didn't think twice before shaking her head NO to a birth injury and simply stated that she would have taken a different course if that was the case and the MRI would also show any brain trauma. Although hesitant to comment decisively she did think banking stem cells would be a great idea.

I have been looking into stem cells and am trying to devise a plan of either home equity or family support to make this possible. It is over $2000 to get the process started and another $125/annually to store them. There is a 75% chance Ava could use the stem cells and I don't think Joe or I could forgive ourselves for passing up the opportunity. I suspect with the Democrats in charge we will see a lot more activity in the area of stem cell research, I'll try to blog more about this as I learn more.

I will keep you updated on the progress of our med changes and stem cell venture. It is certainly a time of uncertainty for me and I'm sure I will overcome it sooner than I think. Wish us luck!

Here is a great blog written by a parent of an older child with CVI. If you have a minute of extra time to read it will sure help you make sense of some of the difficulties Ava faces on a daily basis and part of what contributes to her delays in speech, motor, etc. It also describes our current problems with Ava's TVI to a tee, he has no idea how to help her so he doesn't want to classify her as visually impaired. He didn't even attend her IEP if that says anything...probably a good thing as I didn't have to much nice to say to him anyways.
http://www.familyconnect.org/blog.asp?BlogEntryID=17&BlogID=1

2 comments:

HeatherS said...

Hey Super Mama!

Sounds like a good (?) productive meeting with Dr. Sabo. How's she doing on the new med?

BANK THOSE STEM CELLS!!! That's my personal opinion :) You can set up a bank account so that people can just deposit $$ directly to the account. I would say instead of baby gifts, please make a donation to baby's stem cell account...it might be more useful than a teddy :) AND if Samantha's a fit...I'll take a couple (HA!)

Hope you are well. Lunch? Let me know!

Robyn said...

We donated Blake's cord blood when he was born, that way there was a chance we'd have it if needed, but if someone else could use it, it was available. I think if he ended up needing it and his was no longer available, we'd have preferential treatment to another match, but hell, that was 8 years ago, its hard to remember. Anyways, didn't know if you looked at that option through CU? I was wondering how she was doing on the new meds too. Also glad to hear she isn't autistic!