Friday, May 26, 2006
As for the seizures they have been staying in the 5-10 range so they have definetly gone down in numbers! Her Neuro wanted to put her in the hospital last Wednesday to start the ACTH and we decided to not go with that mainly because of the harsh side effects:Potential side effects include-Hormonal therapy with ACTH or corticosteroids may have significant, potentially fatal, side effects. While weight gain and cushingoid features are among the most common side effects, ACTH or corticosteroids may also produce hypertension, metabolic abnormalities, severe irritability, osteoporosis, sepsis, and congestive heart failure.- (E-mailed from our Dr.)We just don't think she is that bad off to put her in that big of a risk of other things, maybe this would have been good in the beginning of things when she was having 158 seizures a day but not with just having 5-10 a day. We are to discuss what we are going to do, SO TO BE CONTINUED........ Cameran is still taking weekly OT feeding sessions as she refuses to eat sometimes. Its a back and forth ordeal as she eats FANTASTIC on some days trying out table foods, drinking 30 ounces of milk a day and eating lots of snacks. But then the next day will be the total opposite and will take no table food, no jar food and maybe about 15 ounces of milk.... It's all so strange. So of course this is making her weight go up and down she is at 21.4 pounds right now but last week she was up to 22.6 atleast we made it past the 18 pound mark as she stayed that weight from 6 months of age to 13 months of age!!! We are trying different varietys of snacks and different texture foods since she has a sensitivity in that area so far so good you can see her above trying out lots of different things at once! The hard part is trying to open her mouth to atleast try something new.....She is so stubborn! A new thing she is doing is drinking out of a straw, we have tried so many sippy cups and found that she will only take straw cups so we hope to have her off the bottle soon....But she is moving at snails pace on that one.Camerans new favorite thing to do is playing in the rocks!! She will put a few rocks in her mouth but Some other news is that she has managed to get 3 new teeth -in a 3 week period Poor baby girl it was actually a tooth a week OUCH! She is working on number 4 making it a total of 12 chompers :-)
Wednesday, May 10, 2006
Our Neuro has given us a few options to think about while we where gone on vacation they include ACTH or Vigabatrin. We're not sure what to do just yet. So we are trying to pull info on both to see what would be best. We did go back on the Keppra and we didn't see any changes so that will be weaned out yet again. Hopefully I will hear from the Neuro tomorrow and have more info to give. She goes back to Vanderbilt for a follow up on May 26th we will be having another EEG and MRI this summer some time!
Cameran had a great vacation in Orlando even though she slept through most of it. We ended up getting a pass to use her stroller as a wheelchair since she was snoozing so much- due to the upped notch of Klonopin we started right before we left. Poor baby girl all these meds really wear her out!
She has been babbling up a storm saying Dadadadadadada yayayayayya bababbaba shshshshsh all kinds of stuff that makes no sense but its great to hear her sing!!!! She also got a new tooth making #9 , she also loves to give hugs we just love all these new things and hope they keep coming!!!!To see more vacation photos go to kodakgallery.com