39 replies to this topic

[frieze]

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 wi th 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.

just because you signed that it was ok for the school to talk to the doc, doesnt make it ok that the doc shared with them things he/she hadn't shared with you!!!!!! ...and I am betting you won't sign that again!

[Sunflower23]

just because you signed that it was ok for the school to talk to the doc, doesnt make it ok that the doc shared with them things he/she hadn't shared with you!!!!!! ...and I am betting you won't sign that again!

Exactly, I thought the same thing and you are right i won't fill them out next year.

[Sunflower23]

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.

[mushroom]

If he is back on gluten and was off for only a week, I believe I would do it right away. Often a week is not long enough for the antibodies to retreat altogether. If the blood tests do come up negative (and by the way, make sure they do the full panel listed below):

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

insist on the endoscopy with biopsy, because that will often be positive when the blood work is negative. And even then, keep him on gluten with a homeschooling program until you can have him retested after six weeks at least back on gluten.

Let us know what the school board has to say. And I agree with the pp's - no more signing of blanket forms like that. Get your specific permission and I would want to be present, personally or on conference call, if this is the kind of stuff that is going on.

[frieze]

Exactly, I thought the same thing and you are right i won't fill them out next year.

I would wonder if you can't revoke them now?? or would that potentially cause a "red flag", don't need to get CPS involved.

[Sunflower23]

If he is back on gluten and was off for only a week, I believe I would do it right away. Often a week is not long enough for the antibodies to retreat altogether. If the blood tests do come up negative (and by the way, make sure they do the full panel listed below):

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

insist on the endoscopy with biopsy, because that will often be positive when the blood work is negative. And even then, keep him on gluten with a homeschooling program until you can have him retested after six weeks at least back on gluten.

Let us know what the school board has to say. And I agree with the pp's - no more signing of blanket forms like that. Get your specific permission and I would want to be present, personally or on conference call, if this is the kind of stuff that is going on.

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.

[mushroom]

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.

By baseline, I take it they mean tTG and total serum IgA? I am aware there are often insurance restrictions on what will be covered. Sometimes.... if finances permit.... it pays to go off insurance to get some things. I am aware this may not be an option so don't let it upset you. I have been fortunate during the times I have had HMO insurance that I was able to go independently and pay for what I felt I needed rather than a faceless bureaucrat in an HMO office. Interestingly enough, one of the big honcho faceless HMO bureaucrats now has a face for me. When I looked up what happened to her (funny little side story here). She was the bane of my existence when I was trying to figure out my GI symptoms. I was stuck with her for five years because no other primary cares were taking new patients in my group. She told me my symptoms were all in my head, that it was perfectly normal to have explosive diarrhea five times a day , etc., etc., etc. And she was my gatekeeper to other medical professionals. The only referral she was willing to make was to a shrink So she eventually ended up losing the thriving practice she had purchased after it dwindled to nothing, got hired by Kaiser Permanente on the basis of her Stanford medical degree (hubs, cynical as ever, said she slept her way through med school - good-looking woman!), apparently didn't hack it there either, and is now, as noted before, one of the chief honchos still, in deciding who should get what treatment when in the HMO hierarchy. Okay, end of story.

So wait and see what they did do, what the results were, come back and telll us, and we'll go from there

[Birdie19]

Good Lord, what is wrong with these people?! Out of curosity how old is your son? I am guessing what the doctor is hinting at is a conversion disorder. So I would be very clear about what exactly the complaints are....right them down, for example, on Feb 2 at 9am: stated "left knee hurt, pain was a 8 on a scale of one to ten, was wincing, holding the knee and unwilling to move, regardless of the excitement to play with his friends that were over". You need to include WHERE it hurts, HOW MUCH it hurts, and the psychosocial pieces surrounding it. I am sure they are thinking this is a get out of school free card. If you can track this stuff and show it happens at home and else where when it is really something he wants to do that will help. Maybe what you need to do is persue the celiac diagnosis pathway and then just to get the school to calm down do a psych eval with an independent group. If they deem him not needing help them he will be in the clear with the school.

As for the insurance piece. The doctor knows NOTHING about how they will reimburse. There are 1000s of types of insurance, he/she is hardly an expert on it. Do NOT listen to them. They are trying to discourage you from doing this. My daughter is a celiac, we went to a GI and he was so rude to me. He bascially said my child didn't have the disease (even with high labs and a family history) and I pushed to hard to get an appt because their are children who are sicker and he was pissed that they put me on the calendar. Well you still accepted the appt so I deserve to be treated that way? You are the parent, NO ONE, I mean NO ONE knows your child better than you. It doesn't matter what these professionals have read in books or have experienced with other patient's you are the expert on your child's care. Keep persuing it, you are on the right track I bet.

If you have done the labs, trial a gluten-free diet this weekend. Why wait? Would you not do the diet if the labs are normal? Just give it a try. It's a diet, it can all be undone.

Good Luck, keep updating us.

[Sunflower23]

By baseline, I take it they mean tTG and total serum IgA? I am aware there are often insurance restrictions on what will be covered. Sometimes.... if finances permit.... it pays to go off insurance to get some things. I am aware this may not be an option so don't let it upset you. I have been fortunate during the times I have had HMO insurance that I was able to go independently and pay for what I felt I needed rather than a faceless bureaucrat in an HMO office. Interestingly enough, one of the big honcho faceless HMO bureaucrats now has a face for me. When I looked up what happened to her (funny little side story here). She was the bane of my existence when I was trying to figure out my GI symptoms. I was stuck with her for five years because no other primary cares were taking new patients in my group. She told me my symptoms were all in my head, that it was perfectly normal to have explosive diarrhea five times a day , etc., etc., etc. And she was my gatekeeper to other medical professionals. The only referral she was willing to make was to a shrink So she eventually ended up losing the thriving practice she had purchased after it dwindled to nothing, got hired by Kaiser Permanente on the basis of her Stanford medical degree (hubs, cynical as ever, said she slept her way through med school - good-looking woman!), apparently didn't hack it there either, and is now, as noted before, one of the chief honchos still, in deciding who should get what treatment when in the HMO hierarchy. Okay, end of story.

So wait and see what they did do, what the results were, come back and telll us, and we'll go from there

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!

[6pennies]

Way to go Momma! I have been through a similar battle with my daughter. She has gone years with health problems; lost her hair at 4 diagnosed with alopesia, broke out in weird blisters, hundreds of them at 5, nothing helped. All the time I was taking her to pediatricians, and dermatologists. Terrible headaches were almost constant. Then at seven she broke out in severe excema all over her body, doctors said, some kids just get excema try eliminating things. We went a year without dairy, with no difference. Since then her headaches, bellyaches would send her screaming and itching and sleepless. I took her to the emergency room and demanded they test for evrything. Results were all negative and I don't think they tested for celiac. She missed a lot of school and although I spoke with them and kept them up to date most people thought it was psychological. I withdrew her from public school and did homeschool and then a new pediatrician suggested we try going without gluten. After two weeks her skin was almost totally clear, her headaches gone, her stomach aches gone and her sleep improved. She still has some excema but it is so much better. Unfortunately we didn't get her tested. I will never put her back on gluten. Our other daughter has been off gluten also to make it easier. The other day I let her have valentine candy and treats with her class and her eyes swelled shut. This freaks me out. Poor kids. Its so scary and worrisome and draining to be a parent when people all around you suspect you are making things up, that its in your childs head, that you are not feeding them a healthy diet when you really are more careful than most parents. It feels so good to be right. I hope everything works out. We moved all of our children to a charter school and I am so extremely happy to not have to deal with the public school district any longer!

[frieze]

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!

I was afraid they might try the CPS card with you. Good luck.

[Sunflower23]

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!

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.

[pricklypear1971]

Exactly, I thought the same thing and you are right i won't fill them out next year.

Revoke it. Now. In writing. Hand copies to all pertinent parties - principal, nurse, doctors. I'd also write a letter to all saying child is not allowed to speak to any of them regarding this matter without a parent present.

And quite frankly, I'd get an attorney. I know it sounds a bit much but some of these school districts are nightmares - too busy trying to cya which means they generally refuse to do what is right, in favor if what is by the book (and usually it's a bad book).

An attorney experienced dealing with delinquency issues and/or that district could make all of this go away.

At a minimum I'd start keeping detailed records of who/what/where regarding doctors and school. I'd even record meetings/convos with your handy cell phone. Just don't tell anyone you're doing it - may or may not be legal in your state (1 party consent).

[Juliebove]

I can't really address the tutoring or home schooling.  Daughter wants to home school like mad but I think it's a bad idea for her.  I can address the psychological aspect though.  I took her to the walk in clinic.  I can't remember all of what was wrong with her but I do remember her complaining of severe ear pain.  Dr. didn't look in her ears but said since she didn't feel up to going to school or dance class she was obviously depressed and needed counseling.  She was going to put in for a referral for her.  We both just sat there dumbfounded!  In fact the Dr. same into the room looking and sounding depressed.  She was literally dressed in all beige from head to toe.  Had a hangdog look on her face and sounded very sad as she talked to us.

 

Two or three days later, I took daughter back to the walk in clinic because by now she was literally in tears from the pain.  And she's not normally a crier.  Saw a different Dr. who freaked when she looked in her ears.  She said they were both raging with infection.  Wanted to know the name of the Dr. that daughter saw.  When I told her, she said that she didn't know where this woman came from.  She was not one of the regular Drs. there and thought that they brought her in from some other location.  To disregard what the other Dr. said and she would cancel our referral because she didn't think daughter was depressed at all.

 

But our frustration?  She keeps getting sick.  Her dad and my mom both think she is faking illnesses to get out of school.  I do not think so.  She certainly isn't enjoying her time here at home.  Either sleeping the day away with a fever or spending most of her time on the toilet or hunched over a bowl.  The Drs. keep telling us that is a virus.  And it is true that when she stays home and is not in contact with others like she is at the school or the dance studio, she tends not to pick things up that make her sick. 

 

She has been to the gastroenterologist twice.  He thinks it is a food allergy or intolerance.  And it could be.  She has multiple food intolerances.  She was tested for food allergies but only to those foods that we knew she was intolerant to.  Nothing else and those tests showed nothing.  Gluten and wheat used to be issues for her but they seem not to be now.  We just don't know what the culprit is.  And of course since I bought the new notebook to start another food diary, she hasn't been sick at all.

 

There is another girl of her age at her dance studio who is home schooled.  Perhaps not so much because of her illnesses but because she dances and assists in various classes far more than my daughter does.  But...  She does have stomach issues almost all the time.  She was told at first that it was a dairy allergy and then told it was not.  She wound up going to my daughter's same gastro and he told her she was depressed and needed to be on a med for that.  I don't think this girl is depressed.  But she is very frustrated and tired of not feeling well.

 

My daughter and this other girl are 14.  Unfortunately once they reach about age 12 and up, some Drs. will just try to pass symptoms off as physchological and specifically depression.  That to me is greatly annoying.  I even had a teacher send home a note to me telling me that she thought my daughter was depressed,  What really was going on there was that my daughter was angry and frustrated again and again by this teacher who kept trying to reward her with foods she couldn't eat.  And forcing her to touch foods that she shouldn't, like Twizzlers or pizza for some sort of math thing they were doing.  I really thought this teacher would get it because she told me that she had a dairy allergy.  She also added that it was fine because she could have goat's milk and cheese.  I told her that my daughter and I could not even have these.  She just sort of shrugged.  I can not tell you how many times I have spoken to or written to teaches and told them things like...  Please do not give her food.  Please do not make her touch dairy, or wheat, or eggs, or...the whole rest of the list of things she is intolerant to.  But the still make her do it and tell her they will fail her if she doesn't.

 

I hope you can get your son's problems sorted out.  We're still working on ours.

[Sunflower23]

I can't really address the tutoring or home schooling.  Daughter wants to home school like mad but I think it's a bad idea for her.  I can address the psychological aspect though.  I took her to the walk in clinic.  I can't remember all of what was wrong with her but I do remember her complaining of severe ear pain.  Dr. didn't look in her ears but said since she didn't feel up to going to school or dance class she was obviously depressed and needed counseling.  She was going to put in for a referral for her.  We both just sat there dumbfounded!  In fact the Dr. same into the room looking and sounding depressed.  She was literally dressed in all beige from head to toe.  Had a hangdog look on her face and sounded very sad as she talked to us.
 
Two or three days later, I took daughter back to the walk in clinic because by now she was literally in tears from the pain.  And she's not normally a crier.  Saw a different Dr. who freaked when she looked in her ears.  She said they were both raging with infection.  Wanted to know the name of the Dr. that daughter saw.  When I told her, she said that she didn't know where this woman came from.  She was not one of the regular Drs. there and thought that they brought her in from some other location.  To disregard what the other Dr. said and she would cancel our referral because she didn't think daughter was depressed at all.
 
But our frustration?  She keeps getting sick.  Her dad and my mom both think she is faking illnesses to get out of school.  I do not think so.  She certainly isn't enjoying her time here at home.  Either sleeping the day away with a fever or spending most of her time on the toilet or hunched over a bowl.  The Drs. keep telling us that is a virus.  And it is true that when she stays home and is not in contact with others like she is at the school or the dance studio, she tends not to pick things up that make her sick. 
 
She has been to the gastroenterologist twice.  He thinks it is a food allergy or intolerance.  And it could be.  She has multiple food intolerances.  She was tested for food allergies but only to those foods that we knew she was intolerant to.  Nothing else and those tests showed nothing.  Gluten and wheat used to be issues for her but they seem not to be now.  We just don't know what the culprit is.  And of course since I bought the new notebook to start another food diary, she hasn't been sick at all.
 
There is another girl of her age at her dance studio who is home schooled.  Perhaps not so much because of her illnesses but because she dances and assists in various classes far more than my daughter does.  But...  She does have stomach issues almost all the time.  She was told at first that it was a dairy allergy and then told it was not.  She wound up going to my daughter's same gastro and he told her she was depressed and needed to be on a med for that.  I don't think this girl is depressed.  But she is very frustrated and tired of not feeling well.
 
My daughter and this other girl are 14.  Unfortunately once they reach about age 12 and up, some Drs. will just try to pass symptoms off as physchological and specifically depression.  That to me is greatly annoying.  I even had a teacher send home a note to me telling me that she thought my daughter was depressed,  What really was going on there was that my daughter was angry and frustrated again and again by this teacher who kept trying to reward her with foods she couldn't eat.  And forcing her to touch foods that she shouldn't, like Twizzlers or pizza for some sort of math thing they were doing.  I really thought this teacher would get it because she told me that she had a dairy allergy.  She also added that it was fine because she could have goat's milk and cheese.  I told her that my daughter and I could not even have these.  She just sort of shrugged.  I can not tell you how many times I have spoken to or written to teaches and told them things like...  Please do not give her food.  Please do not make her touch dairy, or wheat, or eggs, or...the whole rest of the list of things she is intolerant to.  But the still make her do it and tell her they will fail her if she doesn't.
 
I hope you can get your son's problems sorted out.  We're still working on ours.

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.