Monday, April 17, 2006

8th Month and still having daily seizures!

Its hard to believe it has been 8 months since she was dx w/ IS and it's so frusterating to see these things still hanging in there. The seizures change day to day which makes it that much harder to figure out what to do. We have upped all her meds and are now adding the Keppra back on to see if this was what caused the increase of her seizures, if not we will be making a big change since all these meds are wearing off.

Cameran had her 4th EEG on Friday the 14th and she did great. She was upset in the beginning from being held down but konked out as soon as I held her. She looked so cute with the "Mummy Head Band"!

Cameran's EEG was shown to be worse with the Hyps back but not as bad as in the beginning. This was not surprise news since she was having seizures again. Here she is being a good girl as they pulled the electrodes out!

Check out her crazy hair do......That glue is so hard to get out of her hair! It gets harder and harder to get her through these EEG's she does great and doesn't cry and scream like most of their kids but she doesn't like to be held down but who does??? This was her 4th EEG and won't be her last as they schedule one every time we add another med or wean one off just to watch things!

Cameran with her 2 wonderful Neuro's! The one to the right(blue shirt) is the one who dx Cameran in the ER. There plans for her is to have another EEG and MRI this summer. Until then we are adding back the Keppra to see what happens if no changes we will be moving on. They say that she will probably just outgrow IS but can't say that for sure since no one seems to know much about Infantile Spasms and how it works thats what makes it all so hard! So we will continue with the search of the right med for Cameran and hope when we find it that she will catch up in her development. As far as her Development goes its still a working process and probably will be until the seizures stop! Her balance has been thrown way off balance since her meds have been raised and all we can do is sit back and wait to see what happens in the next few weeks! We are still waiting for the insurance to approve for her brace inserts(AFO's) so hoping we can get them soon to see if they help any with her balance since she walks on the insides of her feet. Her PT and OT are moving slowly since she doesn't understand how things work . Its scary having a 14 month old walking around with a 3-6 month old mind she gets into everything and eats everything little billy goat! Her feeding classes are going so well she want have them much longer she has managed to gain 2.5 pounds since starting them about 2 months ago. She still has issues but with moms help she will be fine. Cameran still will not give up the bottle and absolutely refuses a sippy cup of any kind along with juice! She is a stubborn little girl!Above she is wet from playing with her new water table that her and her brother got for Easter. Thought she might like it since she has been caught several times playing in the toilet -YUCK-