Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 Joanne, My daughter has been thriugh every test imaginable for her stomach pain, all negative. yet she doubles over in pain..she clearly is in pain as her hair on her arms stands on end and she gets goosebumps all over. It is so sad. she hurts off and on at various times and we have tried different foods different textures, no milk, diets..etc... One doc thought perhaps abdominal seizures.....cant prove that one one way or the other.... I do know her legs go numb...and she has alot of headaches. thanks for the info...can you tell me when do your daughters get the pain? what does it feel like to them? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 Hi , This is exactly what both of my daughters had....severe, intermittent abdominal pain with NO explanation. (We treated the issues that could be explained and the pain persisted). A very astute critical care attending suspected neuropathic abdominal pain and discussed the thought with Dr. Cohen (who verified that many patients with mitochondrial disease have neuropathic abdominal pain). Together they felt it would be worth a trial of Neurontin, as Dr. Cohen had noticed a really good clinical response in his patients. We tried it out of desperation and it was like a miracle cure. When we saw Dr. Cohen several months later, he indicated that Neurontin seems to help for patients with neuropathic abdominal pain and abdominal migraines. He couldn't differentiate the two, but from his perspective it was worth trying the drug (minimal to no side effects in most patients) and see if things improved. In my girls the improvement was dramatic. Plus, when similar pain started again, and didn't respond to other comfort measures, our critical care attending has adjusted the Neurontin dose with marked improvement within 1-3 days each time. Several other physicians have commented on the " big dose " . I asked Dr. Cohen about that too. He felt we could safely go up to 3000 mg TID, if necessary, without difficulty. So we still have a large window of opportunity if the need is there. I have since discussed this with our local neurologists as well. He felt that Dr. Rice and Dr. Cohen are correct in their assessment/treatment. The mutual feeling had been that the patients who don't seem to respond are those who's physicians prescribe a dose that is way too small. Example: A friends son was recently diagnosed with metabolic disease. Pain clinic docs ordered Neurontin but only prescribed 300 mg two times/day. The teen is not small. The drug didn't seem to help. After comparing notes and learned the dose used by my girls was significantly greater, his mom asked for a dose adjustment. With a dose adjustment, there was marked improvement within 3 days. --- MitomomX3@... wrote: > Joanne > what is neuropathic abdominal pain? > how do you know if you have it? > My daughter has horrible stomach problems and after > years they cant find any > answers. > she has neuropathy and I wonder if this is related > > > > [Non-text portions of this message have been > removed] > > Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 My son had these from very early in life and became less of a problem as he entered his mid-20s. They were thought to be either an adominal migraine or seizure. He had both. Once he started on an anticonvulsant for his migraines, they almost stopped. He had them almost daily, so it was hard to determine triggers. I think stress was a factor at times. When he was trying to cognitively over-ride his sensory sensitiveities, he seemed to get them. They were very real, as he would turn ghost white and his pulse was usually hard to find and slow. I use to have him give the secretary at school a mother's day card as she use to have him in the office almost every day and tried so hard to make him more comfortable. laurie > Joanne, > My daughter has been thriugh every test imaginable for her stomach pain, all > negative. yet she doubles over in pain..she clearly is in pain as her hair > on her arms stands on end and she gets goosebumps all over. It is so sad. she > hurts off and on at various times and we have tried different foods > different textures, no milk, diets..etc... > One doc thought perhaps abdominal seizures.....cant prove that one one way > or the other.... > I do know her legs go numb...and she has alot of headaches. > thanks for the info...can you tell me when do your daughters get the pain? > what does it feel like to them? > thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 Hi , They both said, " It's really bad pain, kind of all over midabdomen. Hurts to sit, walk and/or lay down. " We could identify NO relationship ro food, beverages, activity, stress, etc. My girls also have alot of headaches, but not all associated with abdominal pain. THe only thing I am sertain of is that the Neurontin really helped even though no definitive cause could be identified. If she could handle the drug initiation/titration phase it woiuld be worht a trail to see if things improve. Also, Dr. Whiteman increased their riboflavin to 200 mg QID. That has made some difference in the number of headaches. They still have some breakthrough but no where near as bad as the headaches had been. When their riboflavin dose was initially increased, it did seem to help headaches but not the abdominal pain. what does it feel like to them? Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 My son takes 1200 mg three times daily. It has helped a little with the headaches but has not helped the stomach pain. He has lower abdominal pain. If you ask where the pain is, he'll point to the middle of his abdomen. But if you put him on an examination table and feel his tummy he complains of lower quadrant pain, left worse than right. He's having a bout of it right now---is not really eating once again. We're thinking about adding some benedryl to his meds to see if that helps. He has some extra eosinophils in his gut. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 GI doctors are at a loss for the pain? I found that even mild constipation made my lower back pain *MUCH* worse, and lactulose would help with that. I find it interesting that some seem to have mainly neuropathy in the arms and legs, and others have a lot of problems with the abdomen. Or do many people have neuropathy all over? I seem to have it mainly in my left leg and arm, sometimes in my face. Has anyone tried large amounts of acidophilus for abdominal pain? My son will not eat (at all) when he is constipated, and it could be as little as 12 hours from his last stool, yet sometimes he is fine to go every two days or so. Once he stops eating, it still could be 12 more hours to a bm. Some of the worse pain I ever had was when I had shingles, and neurontin is used to treat that type of pain, which until it was available was essentially untreatable. Has anyone tried massage or a chiropractor or acupuncture (basically trying to minimize any other issues that might compound the pain)? I wonder if a pain management clinic might help (kind of doubt it from other people's posts). I'm sorry to hear so many of us and our loved ones are suffering from this, it reminds me of a bout of gall bladder problems and food poisoning I had where the pain was unbearable (I'd pass out and wake up and pass out and wake up, yuck!). Take care, RH > My son takes 1200 mg three times daily. It has helped > a little with the headaches but has not helped the > stomach pain. He has lower abdominal pain. If you ask > where the pain is, he'll point to the middle of his > abdomen. But if you put him on an examination table > and feel his tummy he complains of lower quadrant > pain, left worse than right. > > He's having a bout of it right now---is not really > eating once again. > > We're thinking about adding some benedryl to his meds > to see if that helps. He has some extra eosinophils in > his gut. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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