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I am so glad I found this forum. I hope someone can help me with my quiestions. My 7 yrs old son has tics. They started as blinking when he was in kindergarden. Then they stoped for a while and came back when he started school. We hoped they would go away again, but the opposite happened. He now has other tics. He opens his mouth a lot, nearly all of the time. He rises his eye-brown, does someting with his head/neck and he makes an r-sound. We are trying to be gluten and milk-free, not using artificial colouring etc. He takes vitamines, specially magnesium etc. It doesen`t seem to help. Not so far. We are waiting for appointment with a doctor. But these last weeks he has been complaining about pain in his mouth, neck and upper back. This pain is really troubling him. I ask him if it`s real pain or if it`s just that he feels uncomfortable. He says it`s pain. It makes him angry and easily irritated. We have almost stopped doing homework because it`s to hard for him. It may be he find it hard to explain exactly what he is feeling. But is it normal to have pain because of tics? Is pain normal for people with Tourette? I wil be thankfull for any advice and answere to my question. Anne Linn
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Just wondering if anyone here has dealt with a condition known as Chronic Functional Abdominal Pain (CFAP) in their kids? And if so, do you have any research, resources or experiences you could share? A good friend of mine's 10-year-old DD was just diagnosed with this and, never having heard of it before, I looked it up. Not unlike PANDAS/PANs and a number of other "clinical" diagnoses, this seems to be a "diagnosis of exclusion," i.e., there's nothing structural or biome-wise causing chronic pain in the gut? Then, here, take this anti-depressant, try meditation, and call me in a week and let me know how it's going. I can't find anything that suggests an auto-immune genesis or component to this condition, but when my friend told me about it, alarm bells went off for me. Incidentally, the DD's latest "event" was on the heels of having contracted two viruses that went around her school and her family, neither of which did anything other than lay her siblings and parents low for a few days, but she wound up in the hospital because of the pain that followed. Poor kid's missed 6 weeks of school, is completely incapacitated, and her parents are about to lose it, as well, with the stress of it all. Any information or suggestions gladly received! You guys are the bomb when it comes to these "medical mysteries." Thanks!
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I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic acid and antibodies in Cunningham test panel were high. I have complained to an immunologist about my son's high pain levels. Our cardiologist has tried several different pain medications but nothing at this time seems to take the edge off except 800mg of moltrin. However, moltrin this high causes a sleepy effect, so that's not too helpful when trying to get school work done. However, not much school work was acomplished today. I have tried a lower 400-600 dosage every 4 hours but I cannot tell a difference and neither can my ds. BTW my ds is 5'10' and weighs 190lbs. His pain levels range from an 8 and can go all the way to 10. When levels get this high, he wants a dark room with no noise. We have been to the hospital when pain levels were high and he was given morphine. It took the edge off for awhile but not for long. I have also read about Low Dose Naltrexone for inflammation. Does this help anyone? If you have have the antibodies in the brain in a high range, is this normal to expect high levels of pain? Is this what causes the pain problems in your kids? I have also been reading up on the Kynurenic acid and understand that it causes the nerve pain with the presence of CaM Kinese. I guess I'm really trying to make sense of where my son's pain is coming from. I know it's not all from anxiety. He washes his hair every two weeks because he has very oily skin. But when he does it makes his headache and scalp pain worse. His vocal tics also start up but settle down about an hour later. He shampoo yesterday and today has been awful with incresed pain levels. I have been using the moltrin yesterday and today. But I want some pain relief for my son. Do you have any suggestions on some natural supplements? I am concerned keeping my son on moltin for a long period of time. But what would be considered a long period of time to be on moltrin? Just feeling frustrated. Sorry for the long post. Rachel
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My 9 year old son woke up complaining of serious neck pain. Within a few hours he developed a neck tick followed by eye roll.. He has suffered from various tics for years. Has had neck tics in the past. I'm wondering if the neck pain triggered the recent neck tic or the tics triggered the neck pain. I'm hoping when pain subsides the tics will wane.
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For the past 2 months my tonsils and throat have been a wreck. Backtracking a bit, it started after my trial on valtrex (went very badly). Pain in ears, then nose, then tonsils. They concluded my tonsils were infected b/c of their size (different sizes too), pus, and very inflamed. I was put on azith for a few weeks which helped for 3 days, then omnicef which gave me c-diff, uti, and yeast infection (still battling c-diff, still on flagyl). Anyways, my throat, mainly vocal chords, are in horrendous pain. I can't sing. And that is really messing me up. Hard to talk, to do anything and I've never had it this bad in my entire life. I am a singer-songwriter, so not being able to do the one thing that can stop the ocd and brings joy has been heartbreaking and I fear the worse. The doctor I saw wants to take out tonsils b/c they are so inflamed BUT he said first we'll try acid reflex treatment. I've been on prilosec for a few weeks, 2x's a day, and I am getting side effects from it plus has not helped. It increases benzodiazepines in blood stream and I've been a complete zombie stuck on the couch. We tried nasal spray for constant post nasal drip (it's an antihistamine) and over time it was drugging me really badly as well so I had to quit. I am insanely sensitive to everything medicinal or supplemental, it most certainly must be a clue as to what is wrong with me, I can't tolerate much of anything. Other things tried: manuka honey, gargling salt water.......... Nothing is helping and the post nasal drip seems to be getting worse along with my throat. Still scheduled for tonsillectomy if things don't improve. I'm only worried about getting my singing voice back. Some mornings I wake up and can't speak. Very hoarse. Any thoughts?? P.S. Last night the diarrhea returned and it looks like c-diff so I'm back on flagyl and started probiotics that were recommended here on this forum. I don't know what is going on with my body.