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RAST testing came up weak positive for wheat, soy, peanuts and corn. The skin prick test just had a tiny red dot at each of those spots, the nurse said it was a negative reaction. Although now that i think about it....a couple tree pollens that came up small dots were retested by injection and he ended getting hives from those.
Went to allergist. My son was tested for food and environmental allergies. Enviromental testing came back he's allergic to grass, most tree pollen, cats, dogs, ragweed, etc. The foods tested - corn, wheat, soy and peanuts came back negative. Does that mean he is definitely not gluten intolerant? He also went in for an ultrasound on his GI tract and everything came back normal.
He still has stomach pain and is taking miralax daily. Could he still be glutant intolerant even though test after test has been negative? Anyone have these same results and went on a glutant free diet anyway and felt better?
My next step is glutant free diet and see what happens.......
Update: after colon clean out my son had two good weeks. One week was school break in which he was tutored and the next week he actually went to school. Now he's back to feeling crappy again and stuck at home. Hydrogen breath test came back negative. Still waiting to see allergist on April 1st. In the meantime we are working with the social worker at the hospital and adolescent medicine to keep the peace with the school and to help My son cope with his pain. For a while the school called me almost daily to remind me that my son is illegally excused from school. Like i needed to be reminded. Not getting much help from pediatrician, there's a big surprise. I remain hopeful that in a couple weeks we will get some answers, my son will be on the mend and we can put this all behind us.
It is very frustrating at the least. I just wish doctors would just listen to what us parents have to say. We know our children better than anyone. Do the tests we ask for, and if we are wrong then proceed on what they think should be done. It would eliminate months of seeing specialists that are not needed. We are in our third month of bouncing around from one doctor to another and the very doctor that my friend recommended for my Son in the very beginning is the one we are seeing April 1st. It just makes me so angry! We could have avoided all this.......my son could have been tested and back to school already. Instead he has missed 40 school days. He has been keeping up with most of his work and some he has been exempted from. The teachers have been very helpful theses past few months, I just wish I could say the same for the principal, nurse and school counselor. I would have thought the nurse would be more sympathetic since she has a child with celiacs.
Hopefully this next doctor will get to the bottom of all that's ailing my son and not give up until he does. I want my son to be able to go back to being a kid again and not have to worry about what's wrong with him and wonder why many don't believe him that he really is medically sick.
Good luck with your daughter, I hope you get the answers you need to help her. Thank you for replying to my post. It's therapeutic talking to people with the same frustrations.
Scheduled allergist appointment for my son. Unfortunately they could not get him in until April 1st. We are willing to wait because I've heard alot of good things about this doctor. He goes to bat for the patient and won't give up until he finds out what is making them sick. The doctor is an immunologist. The other amazing thing is that this doctors wife is my mothers cancer doctor.
Lots has happened in the past week. Here's an overview:
Results back from baseline bloodwork - negative
Referred to GI doctor and scheduled appointment
Met with counselor (2nd and last visit) - son doesn't like her. Doesn't say anything to help him.
Met with school - Threatened to call CPS. Bring it on we have nothing to hide, he is sick.
Met with GI doctor - ran more blood work and did an X-ray. Scheduled a hydrogen breath test for 3/11.
Met with pediatrician finally - thought that since she has never actually seen my son throughout (just diagnosing him) it was a good idea to Make her own diagnosis. Really? Anyway, she was pushing "adolescent medicine" therapy and medicine. We took the referral and prescription for the medicine. My husband thought it was best to be compliant at this point. That way they can't say we were uncompliant just in case they are right.
GI doctor called with results - his X-ray showed that his intestines were full with stool. Some of the bloodwork came back and showed my son was positive for having a wheat, corn, soy and peanut allergy. Plus a slightly elevated thyroid. Mothers intuition was right!
Went to pharmacist picked up medication to clean him out. Started on Thursday. He has already lost 10 lbs.
Sent the school an email of the results of the GI visit. It felt so good!
Pediatrician called with a referral for an allergist and adolescent medicine.
Adolescent medicine appointment scheduled for March 1st. Will cancel if goes back to school after break.
Will schedule appointment with allergist on Monday. They closed at 1:15 on Friday so I was unable to get appointment.
I feel so happy that we are finally getting to the bottom of his illness. A weight has been lifted off my shoulders. I'm starting to feel happy again. It takes such a toll on us parents as well as the kids. Thank you everyone who responded to my posts. I appreciate your advice and kind words. I will reply after my son has had his breathe test and allergist appointment. Thank you again!
Took my son for bloodwork today. The pediatrician wasn't familiar with the blood testing for celiacs so she consulted with another doctor and they told her that a baseline was sufficient for first testing. He also said that our insurance would probably not cover the full panel without an elevated /positive on baseline tests. I guess we will have to wait til Monday for results.
My husband asked to have written correspondence faxed to us between the school and the doctors office. The doctor wrote.....specific diagnosis: fatigue and joint pain of unknown etiology. Currently evaluating for anxiety as the cause. My husband has tried several times to speak with the principals at the school but they will not return his call. He is going to the school board and/or supervisor tomorrow.
Called doctors office today and ordered celiacs bloodwork to be done. Received paperwork via fax. How long should I wait before I have the bloodwork done? My son was gluten free for a little over a week but now back on gluten.
My son received tutoring at the school for 2 hrs per day for one week. Then he tried to go back to school half days (the first three periods) but the nurse messed that up for him by not letting him call home to be picked up when not feeling well. Then Starting last friday he started tutoring again, at least that is what i was told by the nurse, but this time he is being bused to an on campus tutoring center. Which is full of high and middle school kids in OSS. Which is not one on one.
Unfortunately, at the beginning of every school year the school sends out letters to parents to have them sign off allowing the school to speak with doctors, picture rights, etc. Which of course I did.
Getting a copy of my sons records is a great idea. I will try and get out there this week. Thank you!
The counselor only works on Fridays and Saturday's.
This is all a nightmare. I just hope we find out whats wrong with my son.
I will look into Homebound student. Homeschool/cyber school sounds like a good option but not sure if this would even work for my family. My husband and I both work full time. Thank you for the information.
The nurse called and told us that my son should see a counselor. I spoke with the school nurse and she said that the doctor implied it was psychological. The doctor said she didn't exactly say that. Regardless that is how everyone is treating this. To top it all off I just found out from my daughter that my son isn't really seeing a tutor. He is actually in OSS (out of school suspension). Apparently the school is mad that my son has missed so much school so this is how he is being treated. My daughter was told this by the bus driver. He actually showed her the letter passed down from the school to not let my son ride the bus, even if he wanted to try and come back, because he is in OSS. I am so furious about this. Oh yeah one more thing....the school nurse called on Friday and spoke with my husband and told him that it is our responsibility to get our son to school even if we have to physically bring him in kicking and screaming. Isn't that nice. I'm sure the teachers would appreciate that. What a mess.......
Good to know about the Lymes diisease testing. Our dog actually had a deer tick on him a few weeks before my son got really sick. As far as all the testing, the doctor never showed us the results. The nurse told us the results over the phone and all she said was that all the tests came back negative. I will ask that question when I call for a referral on Monday for a specialist.
The counselor seemed like she believed my son and understood our concerns. He sees her again on Saturday.
Thanks for your input.
I probably should have him tested for celiacs instead of just going gluten free without a diagnosis. If I don't he will always be labeled by the pediatrician and school as psychological. I don't want that for him. Thank you for your input.