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.
My 2 yr old son is very fussy. Of late, he is inconsolable for a couple hours straight ever afternoon. It can happen at other times too. It's reminicent of my...
... Sorry this is happening to your son, our daughter cried at night alot but was able to tell us her leg was hurting her. We talked to ped., then her ner. and...
All I can say is that my heart goes out to you and your little one. It's so incredibly frustrating and heartbreaking when this sort of thing happens. ...
Stacey, this is one of the many things Dasha did. Has he been worked up for EOS by a doc that what to look for and where, has been been worked up for...
oh yeah -Stacy - it's a HARD situation. Hold out some hope since it's kinda predicatble that we acan figureout the issue for your son. My son, now 8 still has...
Stacey, Kelly-Ann mentioned sensory issue's. Spinning would provide temp relief with Dasha....at times it was the short term releif that got us through. Teresa...
My daughter has gone through multiple periods of the same thing. It is sooo frustrating when they cannot tell you what is wrong! Here are a couple things...
My son had LOTS of these periods during the first 18 months. I used to drive him around in the car and he woudl still cry--for hours. He always did this much...
Is it possible we're talking about childhood biopolar with or without Asperger's here ?My sister was diagnosed with both,and both are associated with...
In my experience long term crying not relieved by Tylenol or Motrin is almost always belly pain or some other GI related issues... I have been through this...
My neuro also advised me against letting anybody put my son on anything for sleep or crying. He also felt getting to 'the issue' was better and I agree. --what...
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!...
WOW! Thank you for so many specific hints. It's bittersweet knowing others have similar experiences. *We do give him 1 tsp of milk of magnesia each day that...
This may sound wierd... but are you sure the episodes aren't some type of seizure? Just throwing that out there! ________________________________ From:...
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...
Jackson is also on neurontin for pain management it has helped a lot especially when he first went on it.. he does not have a history of seizures he just takes...
SCD is the specific carbohydrate diet it is based on the ideas of an over growth of yeast in the system as well as a persons inability to tolerate specific...
Joshua has had two time periods of this crying. His inconsolouble crying is usually associated with gas/constipation or fatigue. However, he is just...
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