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immune testing: help interpreting results?


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My daughter also tested low in IgM...please PM me if you can if you find anything out...she tested this summer and both of her doctors said it was nothing...but, I have never been able to believe that. She is still dealing with lingering ocd...throat and gut issues as well.

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My son also had a Primary Immune Deficiency, specifically low Pneumicoccal titers. Even after the Vax to boost it. Always has something he is sick with, mostly sinus, uri, gut issues. His is called Functional Antibody Deficiency. He fails to respond to the polysaccharide, immunizations, another name is Specific Antibody Deficiency. I think typical treatment is abx, but my son was becom

ing Inmune to abx I've the years

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Over the years, so I pushed for IVIG. Truly life changing for him! After 3.5 yrs, we very rarely get admitted into hospital, unless its GI, cuz of dehydration. If its multiple things missing, I felice the term is CVID. Check out the IDF website, great site! Have your PANDAS doc contact Dr B, I believe I read he is an Immuno, and Agressive PANDAS!! Praying for you!!

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My son also had a Primary Immune Deficiency, specifically low Pneumicoccal titers. Even after the Vax to boost it. Always has something he is sick with, mostly sinus, uri, gut issues. His is called Functional Antibody Deficiency. He fails to respond to the polysaccharide, immunizations, another name is Specific Antibody Deficiency. I think typical treatment is abx, but my son was becom

ing Inmune to abx I've the years

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NO PANDAS doc at ALL in this half of the country. CANNOT afford to travel. Finances desperate (may lost house). AZ is a AD state to be in if your child has PANDAS or autism. Only Autism (not PDD0 get ANYTHING. And schools are TERRIVBE. WE have no direction. Yes, I am going to a new immunologist Tuesday but I've been through ths so many times; i don't expect much. I KNOW he does not knwo about PANDAS. YES about immunodeficiencies, but NO all across the board here with docs not realizing the implications of "sub-normal results" you woudl DIE as I am, knowing how "off" his labs are, and being blown off, not listened to, and never offered a consult. Local children's hospital a BIG NO!! No PANDAs, no supoprt, no knowledge, I even need to change PEDS now I've had ENOUGH!!! after 4 long years of banging my head "against the wall" trying to get someone to listen. Faxed resutls to me with an initital or two and even Iif I call oh they are "normal." I am at my end here. Now I have a son who is barely functioning wiht NO medical support and NO school support. None.

 

Oh BTW PANDAS onset 4 yrs 10 months, now 8. Sad. Heartbreaking. Yes! Many resp infections, still gets croup at his age.

 

I hear your pain and frustration. Has he seen ENT or infectious disease specialist? Any child that has recurrent anything should be referred to specialist. Peds should not keep handling it. Because, obviously they don't have the answer/treatment plan if it continues to be recurrent. A child that is getting recurrent strep while on antibiotics needs work up beyond the scope of peds. Also, croup at his age, is nearly unheard of. Sounds like a misdiagnosis. Croup is common from 6 months to 3 years while airways are small. Perhaps, a bit older in small child,or, if there are enlarged tonsils etc. Usually symptoms brought on by a viral illness- stridor and constricting of upper airways/inflammation of vocal cords. Self limiting, due to body size, airway structure, predisposition. Once children are larger- their airways are larger and they don't suffer from croup.

 

Had a friend that kept telling me her son was getting Croup at age 9! I told her that croup is not typically diagnosed or seen at that age. She got 2nd opinion and came away with a diagnosis more consistent with Reactive Airway Disease/Asthma with illness/colds. Started treating her child appropriately for THAT and wala, no more croup! It would be worth seeing Pulmonary, Asthma, Allery specialist if no answers obtained from ENT or infectious disease. Chronic cough and/or excerice induced cough may be the only sign of RAD/Asthma.Often missed as sign if really the only one by unsuspecting providers. Barking cough may sound like croup- can still be RAD. Sound caused by bronchospasms- not vocal cord inflammation like in croup.

 

My older son is not Asthmatic but I nearly killed him every Christmas from age 3 to 6 by having "real tree" in the house. Child was never sick but did nothing but cough the entire holiday season for those 3 years. Would get miraculously beter in Jan. I finally figured out that the tree was the culprit. Got a fake tree and he has never had the cough since. He was later allergy tested and has severe pine allergy. He had highly reactive airway to Christmas tree!! He never had wheezing like with Asthma- he just coughed.

 

I hope appt with Immunologist in enlightening and helpful (finally). If not, hope maybe some of the other suggestions for specialists will prove useful if he has not already been that route. Not that going to one more doc is anything you desire as you have been struggling all these years:(

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thank you for this!

 

I hear your pain and frustration. Has he seen ENT or infectious disease specialist? Any child that has recurrent anything should be referred to specialist. Peds should not keep handling it. Because, obviously they don't have the answer/treatment plan if it continues to be recurrent. A child that is getting recurrent strep while on antibiotics needs work up beyond the scope of peds. Also, croup at his age, is nearly unheard of. Sounds like a misdiagnosis. Croup is common from 6 months to 3 years while airways are small. Perhaps, a bit older in small child,or, if there are enlarged tonsils etc. Usually symptoms brought on by a viral illness- stridor and constricting of upper airways/inflammation of vocal cords. Self limiting, due to body size, airway structure, predisposition. Once children are larger- their airways are larger and they don't suffer from croup.

 

Had a friend that kept telling me her son was getting Croup at age 9! I told her that croup is not typically diagnosed or seen at that age. She got 2nd opinion and came away with a diagnosis more consistent with Reactive Airway Disease/Asthma with illness/colds. Started treating her child appropriately for THAT and wala, no more croup! It would be worth seeing Pulmonary, Asthma, Allery specialist if no answers obtained from ENT or infectious disease. Chronic cough and/or excerice induced cough may be the only sign of RAD/Asthma.Often missed as sign if really the only one by unsuspecting providers. Barking cough may sound like croup- can still be RAD. Sound caused by bronchospasms- not vocal cord inflammation like in croup.

 

My older son is not Asthmatic but I nearly killed him every Christmas from age 3 to 6 by having "real tree" in the house. Child was never sick but did nothing but cough the entire holiday season for those 3 years. Would get miraculously beter in Jan. I finally figured out that the tree was the culprit. Got a fake tree and he has never had the cough since. He was later allergy tested and has severe pine allergy. He had highly reactive airway to Christmas tree!! He never had wheezing like with Asthma- he just coughed.

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