My son has not been diagnosed with anything but the more he has symptoms the more I am wondering if he has some type of auto-immune disorder. Three weeks ago he was playing basketball and knocked himself out on the gym floor. He was going for a lay-up shot and collided with another student in the air making him fall face first to the ground. He was unconsciouse for a few minutes. Three days later is when all these symptoms started: Extreme sensitivity to lights and sounds, chronic and severe pain in his stomach made worse by the lights, sounds and even vibrations. His throat has closed up on him twice since this has happened and at least partially closed more than a dozen times. His body is reacting as if he is having allergic reactions spontaneously when I know that is impossible. Now more recently in the last 24 hours he's been having these "mini convulsions" (as I describe them with no medical back ground) that are so violent that if he is holding anything in his hand he drops it and if anything is near him he knocks it over. They last about 3 seconds and come and go speratically over a 1 hour period, then seems to go away for a few hours and the cycle starts all over again. He was hosptialized at Toledo Childrens hospital for 7 straight days and they still couldn't help or diagnose him. As a matter of fact the morning he was release he had a pain crisis. I was told that it would just go away. It was been 2 weeks since he was released out of the hospital and his symptoms continue to get worse with more thing added to them. Now his throat is closing up more frequently, he's getting hives that raise about 2 inches off his body, literally. His skin has become extremely reactive with whelts for no apparent reason and his whole body will sometimes turn red. (He is a brown complected, african-american child). During these episodes he has loss of hearing where he describes it as "sounds coming in and out" colors changing in front of him and sometimes colors get so bright they seem to "explode". He has described the pain in his head as "high-pitched vibrations" during the convulsions and said they seem to be "pain resistant" because during these convulsions he can't feel the pain.
His hives are painful and itchy at the same time, the welts feel like "sharp razers" going across his back. He has pain in his chest and shortness of breath while doing something as simple as watching tv, or playing the video game. The pain in his stomach seems to be triggered by walking, but we really cant find a pattern to any of the symptoms. It is now day 22 of these symptoms and still no help in sight. We live in Toledo Ohio, but drove him to the cleveland childrens clinic hoping to find answers there. On the way down there is throat became tight and he became short of breath, but it only lasted about 20 mins. We saw a neurologist there and were still unable to find answers. He has a very high pain tolerance, so by the time he tells me he is in pain, it's pretty severe.
Other than this he has always been a pretty healthy child aside from his allergic reactions to processed cheese. He has never had a childhood disease, the flu or even a fever in his entire life. He just doesn't get sick, then suddenly one day all of these symptoms occure and they are not going away. The doctors we have seen seem to dismiss his symptoms because they can't figure out what's wrong. They say his symptoms don't fall into any catorgory, they are just random all over the board, so they dismiss it and say he will get better. After he left the hospital his doctor said he wouldn't be surprised if they went away in the next two days. But once again, it is now day 22 and he is getting worse.
I know how far fetched these symptoms sound but they are real!! Another big problem is that none of his doctors have ever seen him in pain because here in toledo the nurses have to wait 1 hour in the hospital before the page a doctor (because they give the tylenol, wait 30 mins then give the motrin and wait 30 more mins. Then the doctors takes about 30-45 mins to come) and his symptoms usually last 1 1/2 to 2 hours with pain meds. His school nurse and principal at his school have seen him in severe pain, the nurse even wrote up something describing what she observed all that week to take to the neurologist - hoping to get him help. It was still dismissed. We took him to the neurologist because we didn't know where else to turn. While he was in the hospital he had a ct and mri done of his brain, ct, x-ray and ultrasound of his abdomen, blood work,ect. The only clue they could find was that his liver and pancrease enzymes were elevated the day he was admitted, and he had fluid in is pelvis. None of which were high enough to cause any alerms they said. His liver and pancrease levels were back to normal by the next day. I am worried and concerned and all out of ideas. Please help me get help for my child - I can't continue to see him in pain every day knowing I can't help him.
Sincerely, Latoya taylor - Toledo Ohio
Were you aware that tylenol is toxic to the liver. You might want to look at the Paleo Diet. It has shown success with autoimmune diseases. Google Paleo diet and it basicly is eating mainly fruits and vegetables which give the body the nutrients it needs to repair itself. Healing comes from within the body and if you give the body what it needs it has a good chance of healing. The body needs the nutrients in these fruits and vegetables to be healthy.
Oh my goodness. I can't imagine how scary this must be for you and your son. I would wonder if the accident might have triggered an auto-immune syndrome. I hope you can find a doctor to take this seriously soon. Video tape him if you have to. You might also want to try the symptom checker here on MedHelp. At least it might help you in any research you are doing. My thoughts and prayers are with you.
I know this post comes late, but I happen to fall onto this web site and saw oyur post. I am also from Toledo oh.
Wondering if you have found any answers to your sons problems. Was wondering if you saw a autoimmune doctor.
Was also wondering if you have the means to get him to the Mayo Clinic, they are #1 in country for things like this, I personnaly know 2 people with rare conditons...one went to Cleveland and Michigan and 15 docs in between. The Mayo clinic diagnosed her in a day. Go to there web site and if you can do it GET THERE they are the best.
Please let me know if you are still battling this. My husband has a lot of health problems...I have a lot of resourses and live by you.
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