Wednesday, January 7, 2009

Topamax

The neurologist called later in the afternoon, and basically said he thinks Jude's cries are another part of his seizures. Therefore, he increased his topamax... on top of the pheno, and we tried that tonight for the first time. I have said before that I have a feeling topamax relates to mag sulfate. Mag sulfate is the drug they give many mothers that go into early labor. The only relation I can give you to mag sulfate... is to think of Juliet's herbal disguised demise in William Shakespeare's play, and then you can properly imagine the effects of this drug. It basically renders you helpless. Tonight Jude can barely suck on his paci...it must be held in his mouth. It seems his breathing is rattled, but only from relaxation. It's worrisome, and will probably keep me awake tonight. Although, on the other hand I could tell he tried to start a seizure........tried. His body did not allow him to go into a full blown seizure, so for the first time I felt the meds may be working.......but at what cost. So again it's a trial and error road that we will travel down.
I do have to report that prior to the meds Jude actually FOLLOWED bubbles tonight!!! I sang his gymboree song to him since he missed out on the class from being asleep, and he followed the bubbles I blew at him with his eyes. That is a HUGE task for Jude, and he even seemed to light up when they were blown at him His eyes actually darted in different directions catching small glimpses of the glycerin bubbles. He also displayed a half smile when I walked in talking to him from work. He again tried to smile when I held him talking to him, and when Emily played with him. So he is trying folks, and Em is helping :)

3 comments:

susan said...

i came upon your blog from a friend of your friend's...i must say that i check in mulitple times daily to see how things are going with your family and with jude. I think i feel so moved by your story bc we are about the same age and have 2 kids (both of mine are young...2 1/2 and 6 months). I work for a school district as a PT...I am very familiar with ECI, etc...I work with children with special needs in the school district..which entails a HUGE variety of kids...I have seen many children make amazing progress despite their diagnosis and /or prognosis...I believe injuries to the brain ( cp, stroke, tbi, etc)with children are basically uncharted territory...while there are PLENTY of children that have these diagnosis, the capacity of change in these babies brains is remarkable...it's the type of things that our drs can't predict. i challenge you to keep realistic hope for sweet jude. this is by no means a closed book case...he shows some remarkable signs...for what it's worth, i would encourage you to continue your tireless quest for seizure control...the medicines can be brutal, i know...but you have a mom's intuition about wanting the seizures controlled, and you are certainly entitled to that. Change docs till you find the one that will work FOR YOU and for JUDE. There are many out there that will...don't stop. thinking of you and your new reality...we all take our "normal" for granted. you are an inspiration to me...i hope that you and your husband will work through this together...i have seen way too many marriages go under due to situations like this...you two are the only ones that FEEL what you are feeling...i hope you both can embrace that and be a shoulder to cry on and an ear to scream in about this...love to you from a complete stranger...please contact me if you have any questions about eci, etc...hope you have a seizure free night...

da momma said...

Keep blowing those bubbles! Thats so exciting!

~The~Wacky~Whittons~ said...

YAY! One of my best friends has a son who was on Topamax for a while. I honestly am not sure if he still is. He has CP and seizures were almost nightly as well. What a trooper Dante is following the bubbles! Those to me would be so difficult for their transparent almost! He is amazing! Hang in there, you are on your way up!! =)