We also tried Neurontin with Kayla and it has worked well. We still use ativan sometimes also. It makes it hard when they can't tell us what is wrong, but I knew with Kayla when she would scream for hours that she had to be in some sort of pain and I knew many mito kids that had success with neurontin. We spoke with her Dr. and decided it couldn't hurt to try it since we didn't know where the pain was coming from.
As some people have already said, I think the unstoppable crying just makes things worse because they get so tired out from it, it then becomes an endless cycle.
-----Original Message-----
From: Thats2seven@...
To: Mito@yahoogroups.com
Sent: Tue, Jul 7, 2009 10:59 am
Subject: [Mito] Re:Inconsolable spells of crying/pain
Hi...
I throw in my experience...
Our oldest son, Andrew once cried and screamed nonstop for four days...he was 6 and still couldn't tell us what would fix it! He did have some dementia which is sometimes seen in end stage mito (as was the case). Hospice tried Atavan and other similar things and nothing would work, or even make him go to sleep so we could all rest. They did increase his neurontin and carnitor at the same time and that helped although he never acknowleged pain, per say. I think neurontin is a good thing to try and many mito kids have had a very good experience with it....a few do not. If your child is not on the cocktail yet, that's also something to consider. Carnitor in particular might be most helpful for pain or nerve issues. He's probably exhausting himself, too, which is only going to make things worse.
I'm so sorry...I know its frustrating! Take a walk when you can leave him with someone else for a few minutes, just to clear your head and try to find some peace to come back and tackle it all again. I hope you find a quick solution!
deborah...super-blessed mom to four adopted, special kiddos...(Boston suburbia)...
Andrew, who taught us how "to love beyond what we can see" (07.04.96-05.26.03) from Mitochondrial Disease and Leukodystrophy...
Gaige, age 10, who keeps us on our toes with High Functioning Autism...
Bliss, age 8, our miracle and future metabolic specialist...
...and True, who keeps us laughing and smiling at age 4! He's dxd with Mitochondrial Disease, Gastroparesis, EGID, severe, multiple food allergies, asthma, hypopnea/apnea and dysautonomia, just to name a few...
married to Fred for 16 years, who is one swell guy.
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