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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 Mon, 2007-07-02 - 18:56
Thanks for the reply Hayden's Mom
This will be my son's third round of video eeg but the first time they are doing it when he isn't ill. He spent 2 1/2 weeks in the hospital in Feb and was hooked up to the video eeg most of the time and then in May he was back in the hospital and was hooked up for 4 days. Unfortuanatley I know what I am in for and it isn't pretty.
Ds loves to just walk around too. This seems to come and go but when we had cut back on the Keppra in April his interest in playing increased greatly. Unfortunately he got sick and they upped the dose.
He is already getting OT, PT, speech and ABA so therapies are covered. His therapist even seem to think it is the meds.
I think I am going to wait to talk to the neurologist until they do the EEG because I know that she won't change it before then. But I hope to be much more forceful when I talk to her then.
Thanks again
Take care,
Paws
Re: Re: Re: How do you get docs to change meds....
Submitted by littlebug on Mon, 2007-07-02 - 21:06
Sorry to hear you are having such a hard time.My daughter was 26months old when she started having seizures.She has complex/simple partial.She did well on trileptal alone when she was younger.(she is six now) The only side effects she had on trileptal was mood swings while we adjusted her levels, and low sodium-gatorade takes care of that.When she started getting older and the meds were raised she would complain of stomach aches.Pepcid took care of that. Unfortanitly it sounds like you are going to have to take a stand with the neruo about changing meds.You do have that right.It is a process though.We having been in the process for four months now of changing from trileptal to lamictal and it will be about two more months before the process is complete. Good luck with the hospital stay.I hope its as easy as it can be for you.
Re: How do you get docs to change meds....
Submitted by mommy2threenow on Mon, 2007-07-02 - 09:56
I am sorry to hear about your problems with changing meds. We just ended a 16 day hospital stay with my 20 month old boy. I had to tell them for 2 weeks that the topomax was actually increasing our seizures before the dr would actually listen and take him off of this med. The VEEG is not that bad, except for the fact that you cannot leave the room and if you do leave you will have to have someone else sit in there while you are gone. Changing meds is a real challenge with kids with seizures because it does take some time for it to get into their system and work properly. My son is now on keppra, klonapin, tranxene and depakine. It did take some time at first for us to get used to the keppra but he seems to be doing good on it now. Right now all my son is interested in is walking around. He plays with a few toys but not that many. The dr also said that we were develpmentally delayed because of the seizures and the problems we had controlling them. He has atonic seizures "drop attacks". I would just try and talk to the neuro again. Possibly an option would be occupational therapy which is what we are fixing to start. I hope this helps. Take care, Hayden's mom