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Maevesmom

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Reply with quote  #1 
Hi there, 
My daughter is 7 years old, and was diagnosed at age 3. Periactin has been able to keep her episodes in check (down to about every 4-6 weeks from weekly) and we're at a place where now she's good enough at recognizing her prodrome that we can sometimes even get through an episode with NO VOMITING when we get the Zofran in her in time. Once I can get her to keep down Zofran and get the nausea to subside and can get her eating, about 80% of the time she doesn't vomit again. So her episodes are sometimes only like 6 hours long which is a crazy non-event compared to days and weeks of puking. 
Her main triggers seem to be exhaustion and possibly stress, she's a very happy-go-lucky kid but I can always tell when she's getting close to cycling because she starts having crazy tantrums. Like her little system is just totally overwhelmed and about to short circuit (which it does!) 
Anyway she is 7 and the GI and neuro that we see both suggested that typically kids are switched off the Periactin at 5. But she's doing well-ish and I'm terrified of making things worse- the side effects of amitriptylene seem so much more dire and she hasn't had any side effects from Periactin except for weight gain which I was thrilled about after a year of vomiting non stop. 
Just wondering if anyone has made this switch and how it's gone. 
We are also supplementing at recommended doses of CoQ10, L-Carnitine and B-2. 
Thanks so much! 


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carol mcmurrich
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wynnak

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Reply with quote  #2 
Hi maevesmom!
We have gone through similar situations with our doctors. And here is what we have done each time. We remind them where we were and what happened with his episodes (my son) each time they changed meds. We have had them try to pressure us into changing when we felt he was doing significantly better. So there are times that we have had to just come right out and tell them. That we aren’t changing. Which is where I feel like you are. You’re good where you’re at, why do they want to change things?? I find being up front with the doctors is helpful. Ask them why they want the switch if she’s doing okay? If it is simply age.. I know Ginny might pipe in and also tell you that we have seen kids in their teens on it. So ask! If you’re happy where your at and her episodes are what you consider okay, then do what you think is best.

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Eric

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Reply with quote  #3 
Our son is 14 and takes Periactin. We are just starting to talk about taking him off of it because he is so tired all the time and doctors think the Periactin could be part of that. Other than that we haven't seen any bad side effects. The Periactin helped a lot with his episodes and abdominal pain. We can't use Amitriptyline because he has LQTS and amitriptyline can lengthen the QT. We will restart Periactin if episodes get worse or functional abdominal pain returns.
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Maevesmom

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Reply with quote  #4 
Thank you, this is really helpful. I almost think they want to switch her just because they have read that kids don't typically stay on it past age 5. So it's really encouraging to hear that others have been on it at a much older age. I will definitely have a much more in-depth conversation with them. 
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carol mcmurrich
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ginny

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Reply with quote  #5 
I recall age four being the cut off age where Ami starts to be more effective than periactin.  But if she is doing well then maybe she will be one of the kids who continues to do well on the periactin.

She might also be a child who does well on the supplements and maybe eventually can be weaned from prescription meds to just the supplements.

I don't think I would want to chance a change if something is working well.  

I recall parents on the message board discussing their kids with LQTS.  I have not heard about this recently so good that the topic is being brought up again.  



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