Nobody can help my baby boy!
 

My 17 month old son has been seen by just about every doctor in our town, Knoxville, TN, and he has had biopsy's sent to Havard, the Mayo clinic, and other places, he's been to Vanderbilt and nobody can help him or has ever seen anything like it. It all started when he got knots on his head at about 3 months old and doctors kept telling me he'd grow out of it. One came up on his stomache and I took him to the ER and they sent him to surgeon to take one of the knots out of his head and the one on his stomache and biopsy it. They found it was comprised of eosinophilic cells but they didn't know what it was. Then he got what looked liked a spider bite on his hand I took him to his pediatrician and she tried to pop it thinking puss would come out but blood just came out. She didnt know anything and was no help. These rashes have kept coming back they'll be on his hands, wrists, feet, ankles, neck, stomache, thighs, upper arms. Right now it's really bad his left thigh and both upper arms are completely swollen. They cause him a LOT of pain and itch. They start out like a bubble like a spider bite and then they scab over and dry up and then peels off and sometimes leaves his skin discolored. It's really hard to describe what these look like it's undescribably really. I have to keep them wrapped up in gauze and tape but puss or something keeps going through it. I have to change his bandages sometimes twice a day but at least once every day. It henders him from crawling and playing a lot. I feel so helpless my baby is in so much pain and just screams and screams and throws his body at night from where he can't sleep from hurting so much and there's nothing i can give him to help. They gave me a steriod cream to put on it and I give him baby ibeprofin and a liquid steriod. We've tried benadryl and tylanol and liquid steriods and nothing is working. I don't know what else to do I just want to take his pain away or for somebody to help my baby! On top of all that he has RTA ( a kidney disease) and is on 2 medicines for that (PolyCytra and Levocarnitine) and also has asthema. He's been hospitalized for his asthema 4 times already in the last 6 or 7 months. I dont know if all these are related but the doctors have looked at it, but nobody can diagnose him. It just keeps getting worse and worse and everytime he breaks out it gets bigger and more swollen and it just is getting worse. Please help him because I don't know what else I can do...

Sounds really frustrating. I feel so sorry for both of you going thru this.

Was he checked for porphyria? Does sunlight bring the blisters on?

The rash almost sounds like a form of shingles (Herpes-Zoster). I'm not sure if children can get this or not. Has he been vaccinated for Chicken Pox?

just a thought is he allergic to milk wheat etc can cause lots of problems

eosinophils
 

The eosinphils are a type of white blood cell, the infection fighters of the body. It may be some sort of autoimmune disorder. Keep trying to get a diagnosis, someone has got to know what this is. Have you been to a children's hospital? University or teaching hospital? Yes, well go to another one. If not then go.

http://search.aol.com/aol/image?q=dermatitis herpetiformis&flv=1
anything here look familiar?

I have to say it sounds an awful lot like he has a food allergy, intolerance or sensitivity. This could also be the underlying cause for his other illnesses. Our immune systems are based primarily out of our gastrointestinal tract. When we eat a food our bodies do not agree with, our bodies either trigger a direct immune response to the food or an indirect immune response. This will determine the severity of the reaction and can sometimes be a reason for a delayed reaction by up to 72 hours. Either way, the immune system becomes overloaded, especially if the problem food is continually consumed. Over time this can lead to auto immune disorders and compromised function of systems. The kidneys are one of our bodies detoxifying organs, as this is how we get rid of waste. The liver is another key detoxifier. You mentioned he has a kidney disease so it does fit the scenario.

I'd suggest getting a food allergy test and a food sensitivity blood test (yes they are different tests). I think the food sensitivity blood test will be where you find your answer though, since food allergies are usually apparent immediately after the irritant is consumed. Usually the sensitivity tests are available through homeopathic doctors, which are usually listed as chiropractors in their listings (phonebook or internet). Please let me know if you have any questions. I've recently gone through the experience of learning about food reactions and have been on a recovery plan. Good luck.

How are you doing???
 

Is there any update on your situation. I would be looking at scleroderma. Best of luck.

reply
 

I am SO sorry you and your son are going through this. It is just heartbreaking when something is wrong with a child. I would say much as the rest, check out food allergies and even your clothes detergents and other chemicals around the house. I had a horrible rash on my arms for years and the doctors couldn't figure out what was going on. One day I saw some new detergents on sale and purchased a "clear" no dyes and no perfume detergent to wash clothes. From that time on I didn't have the problem.

I wouldn't give up -- keep checking with various doctors and doing online searches. I have daily searches set up in Google on various medical conditions and I get a daily email with posts matching my searches.