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Sorry I havent been around in awhile, lots of doctors appointments. We finally found a great neurologist who confirmed our belief that she isnt actually autistic as the last neuro said she was. This new guy also isnt sure she is epileptic so he is doing an ambulatory 2 day EEG. He is also looking into her tics because he feels she was really young when she first got them and thinks there must be a reason for them other then just a tic disorder, something about maybe a strep infection at one point? Anyway, I just wanted to stop in and give you an update! Thanks to those who checked up on me, it was very much appreciated.

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:P I was kind of scared the woo woo was a new tic!

 

But glad to hear that there is a doctor who is taking a more proactive role in your daughter's health. Good luck.

 

Jenny, is your dd on any meds right now, since I thought you said one doctor diagnosed epilepsy?, do I have that correct?

 

 

Faith

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Right now she is on Miralax and benefiber for severe constipation, she is also on Trileptal for epilepsy but this new doctor isnt so sure she has epilepsy, he says the first episode sounds like a seizure but her other staring episodes he isnt sure about, they could be something else. So he has lowered her med dose a bit and he is going to do a 48 hour ambulatory EEG which will also help him figure out the tics so while they are doing the EEG I am going to put her back on dairy because they induce her tics big time.

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Curious if the epilepsy med helps to control her tics, do you notice? or do you attribute that to other things? Man, you are brave about the dairy knowing what it will do! How are the tics going now? I am guessing you are finding good success with the Feingold? Are you doing gluten free too, or no?

 

 

Faith

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Curious if the epilepsy med helps to control her tics, do you notice? or do you attribute that to other things? Man, you are brave about the dairy knowing what it will do! How are the tics going now? I am guessing you are finding good success with the Feingold? Are you doing gluten free too, or no?

 

 

Faith

 

I think the meds help the tics a little bit, not much but a bit. Yeah I know, I was really torn between putting her back on dairy for the EEG but in the end I figure when she has a tic it will show up on the reading and thats more information to help the neurologist. Its going to break my heart but knowing that it may help in the end is what cinched my decision really. Tics are actually doing really really well, she goes some days with out any (well any that I see) some days she only has a couple, some days she has a good deal. She goes through the whole waxing and waning thing. Feingold has been a complete success, she still has some issues with her activity level , night terrors still happen and she of course still has sensory issues but its all far less severe than it was. She has stopped chewing on herself and furniture, she isnt as clumsy anymore, her tantrums are now age appropriate and they dont last hours like they did. I am amazed by the difference. We can tell on days when she has gotten something she isnt supposed to, sometimes we slip and forget to check something and we pay for it for days! No we arent doing gluten free, I started to try it and then we had another appointment with her gastro doc. She had tested negative for celiac and he said that while you can be sensitive to gluten and not be celiac its pretty rare. Im happy with the way things are for now and I dont want to change any more of her diet. She is already casein free and chemical free!

 

Thanks for asking Faith :huh:

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