What the Neuro had to say...

Well Cameran's appt went well yesterday although not much has changed. We are to stick with the Vigabtrin for atleast 6 more weeks and if still no changes we are to begin with the weaning and move on. He says we can go up on it 1 more notch being 750mg twice daily. Again there will NOT be another EEG unless things get better.

Another thing discussed was her sleeping and snoring. This raised concern when we told him how much she awakes during the night even though we are giving her Melatonin to help her sleep. So he had us raise it last night to 2mg to see if it helps and it did. We just hope it continues!

She also snores really loud so it raised a question to him of Sleep Apneia(sp??) so we are to do a sleep study in a month or so. He mentioned an EEG during a night's sleep to see if theres any activity that could be waking her up at night. These times she is waking up at night vary from 2-4 times a night and she gets all rowed up to play. So he wonders if this lack of sleep is playing roles in her daily seizures.

He also looked at her tonsuils since she has been doing this heaving breathing and holding breath that he picked up on while we where there. He says she doesn't have enormous tounsils but they are very large so maybe another possibility to all the snoring.

On another note they where very excited to hear her babbling. A great sign of moving in the right direction! She was letting it role while we where there it was too cute! You can't really make anything out its just really loud noises and lots of Yahhaeee Woohhooo Dayayas....if you understand any of that let me know : ) We love it!



Cameran's Neuro has many patients w/ IS and says her has been the most difficult.....Why???? He doesn't know! Thats what makes Infantile Spasms so hard to figure out since all the kids respond differently to the meds no matter how alike their cases are. Only one of his patients with IS has a reason to his(TS) and they recently got control with the Vigabtrin all the other patients(12) with IS with no cause are seizure free with some of the same meds we have tried. I just don't understand it! I so wish we could get these things stopped!

Cameran goes back on August 25th for her follow-up so we hope to have some great progress by then!

No change in seizures

So far there has been no changes with Camerans seizures but we are trying not to give up hope just yet. Early last week before starting the new med she was having 5-8 seizures a day and ocassionally have 11-15(depending on her sleep) now her seizures are staying in that number range(11-15) so that would be the only change.
What are the plans now????
Well her Neuro called yesterday to check in on her(he is the best) anyways he had me up her Vigabtrin today double of what she was taking. So now we are at 1000mg a day compared to 500mg. We are going to see her Neuro tomorrow, Friday so they can just go over things with us. We won't be having another EEG until her seizures stop! Which we hope will be soon!!! Today we have seen maybe 1 can't be for sure though it was a weird side ways head drop???

As far as the weaning of Zonegran goes, we are now at 50mg a day and she is doing fine.

Congratulations to Lil' Cam as today she graduated from her OT Feeding Class. Her teacher and I thought she has made great progress the past 3 weeks that they have just moved to her consult only! Whooo Hoo, GO Baby Girl!Oh almost forgot about her blood results. Everything came back fine, so who knows why she likes to hold her breath....for extra attention...Like she doesn't get enough of that already : )

Out with the OLD.... In with the NEW!

On Monday while waiting for her Vigabtrin to arrive our Neuro suggested to start with the weaning of one of her meds. So we opted for the Zonegran, this is the one we have been on since day one of seizures. We are very excited to get her off of something. She hasn't had any withdrawls so far. We will bring the dose down 25mg every 4-5 days until she is completely off of it. Right now we are just down to 100mg, Friday we will be down to 75mg. We are really hoping things will open up as we think some of these meds are holding back her development.
Come Tuesday afternoon we where very excited that her New med, Sabril/Vigabtrin had arrived in the mail. Not bad after coming from England, it took eleven days to ship.
WE started it this morning, (Wednesday the 12th) and so far so good. I saw 1 seziure this morning before I gave it to her and thats it. We are keeping our fingers crossed and doing some heavy praying that this is the one!!!! Well I must have jinksed it she just had 3 head drops : ( It Never fails!

I took her to the Dr. yesterday for a bad runny nose and she has a Summer Cold putting a hold on her classes until she gets well. But we had also raised a concern of her heavy breathing and breath holding spells she started about 5 -6 weeks ago when we upped her Topamax again. I read this is a more serious side effect. Her Pediatrician timed her breath holding it was 15 seconds! We feel like we can't breath sometimes when she does it. Its an all day thing and is scary. So our Neuro e-mailed me requesting us to go have her blood drawn - A Complete Metabolic Profile drawn. It measures the chemistry in the body including Bicarbonate, which is the concern. So we will be doing that tomorrow! So check back soon for updates on how she is doing and the test results! Also we go back to Nashville in a few weeks to have another EEG if the seizures stop with this new medicine!