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How do you get docs to change meds....
Sat, 06/30/2007 - 23:42Topic: Parents & Caregivers
My son is 25 months and has been having seizures since Feb.He was also dx'ed PDD-NOS in April. He has been in and out of the hospital and is currently taking Keppra and Topamax. He has been having some wierd sleep issues for the past two weeks where 10 minutes into sleep (mainly naptime) his body tightens and his eyes open and they are moving. He does this for about 10 seconds and then he goes back to sleep. He has also lost all interest in doing anything. He just wanders around the house unless you try to get him to sit down and do something and then he is tyring to get up and get away.
We saw his neurologist on Friday and she wants to do a 48 hour Video EEG in the middle of July and has upped his morning dose of Keppra by 1ml. I tried to tell her about his lack of interest but she said it could be the meds but nothing after that. In April we cut back on the amount of Keppra that he was taking and we were starting to see a difference in his interest level and not being so tired. But then he got sick, seizures started up again and he was back in the hospital for 5 days which means they of course increased his meds again.
I want ds to start being interested again he isn't learning anything by walking around and I guess I wasn't strong enough with trying to get my point across.
How do I get her to understand that ds is being totally unproductive?
Comments
Re: Re: How do you get docs to change meds....
Submitted by Paws1129 on Sun, 2007-07-01 - 12:12
HI Krissy,
Sorry to hear that your daugther is schedule for an eeg. Has she had them before? I am so not looking forward to it.
What type of seizures does your daughter have?
Good luck with the new neurologist and hopefully the test results will come back the way that you want them too.
Thanks for responding.
Take care,
Paws
Re: Re: Re: How do you get docs to change meds....
Submitted by krissy parra on Sun, 2007-07-01 - 16:31
hello again,
she has had a few eegs but the have all been normal so they want to do the 72 hour one now and a sleep study and while we are there we are going to meet with a geneticis. I am happy with her new care we are now at the U of Michigan which is a great hospital. she had another seizure today and we had to give her diastat she has complex partials , we where also just told she has "failure to thrive" because she hasn't grown in 5 months now so we have her on a calorie count and high cal foods. what kind of seizures does your son have? how have his eegs been? talk to you later
krissy
Re: How do you get docs to change meds....
Submitted by krissy parra on Sun, 2007-07-01 - 06:39
my 14 month old was on keppra and topamax also but about 3 weeks ago we stopped the topamax (with the docs ok of course) we also didn't want her on 2 meds she was always sleepy and the meds really never controlled her seizures in the first place. we also switched nerologists because her first one wanted her to start taking 3 meds. they took the topamax away because it has more side effects then keppra and we had never seen her sweat since she has been on the topamax (5months) which can be a dangorous compliction of topamax. we also will be taking her in for a 72 hour video eeg july 12. and we are waiting for some lab results the tested her for celiac disease and a few other things but we wont get those back until this thur. good luck