Other immune system disorders?

Posted on: Thu, 01/15/2004 - 1:10am
Sarahfran's picture
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So we've been dealing for four years now with my DD's peanut allergy. My husband has a bunch of environmental allergies as well as a genetic problem that causes him to be susceptible to autoimmune disorders (which fortunately he hasn't had to deal with, but he's susceptible). And this week we found out that my son, who has been chronically ill with various infections his whole life, has something called X-linked Hyper IgM Syndrome. Unlike the *overreaction* of allergies and autoimmune problems, his disorder means that his immune system isn't capable of making IgG antibodies, the ones that respond effectively and specifically to viruses and vaccines and create the memory your immune system has so that you don't get the same disease twice. Fortunately, he can receive IV gammaglobulin monthly and he should then be immune to many things--all the scary ones that you get vaccinated for as well as a lot of common viruses running around.

The immunologist assures me that this has NOTHING to do with my DD's peanut allergy, and that in fact her allergies seem to come from DH's side of the family, while the Hyper IgM syndrome is carried on the X chromosome, meaning that I'm the carrier and only my sons can get it. I just think it's really weird that both of my children have very serious and very different health problems that are related to the immune system.

A couple of things I'm learning, though: A)My kids are doomed--they either get an overreactive immune system from DH or an underreactive one from me; B)I thought PA was bad, but it's nothing compared to having no effective immune system; C)PA is much easier to explain to relatives, school personnel, etc. since it's limited and concrete, but going through that experience prepared me well for my son's problems; D)I know way too much about how the immune system works for someone with no aptitude for science!

But my question is--how many others are dealing not only with PA but also with other immune system problems of various sorts? I know the immunologist says that these problems my kids have aren't related, but it seems too coincidental to me.

Sarah

Posted on: Thu, 01/15/2004 - 1:16am
momma2boys's picture
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Joined: 03/14/2003 - 09:00

Sarah, my 7 year old non PA ds has and IGA deficiency. I got a call from my allergist about bloodwork he had run on my ds. He said he had tested his IGA level and the normal range is from 41-368. The lowest level the test can detect is 14. My ds was below 14. Which means it is either under 14 or non existent.
This explains alot of things about his medical history and apparently has a big involvement with allergies, food allergies, and asthma.
Unfortunately he cant get injections of IGA. We just have to hope at some point his body starts to make it.
Neither my dh or myself have any known immune system problems. Never been tested either though.
[This message has been edited by momma2boys (edited January 15, 2004).]

Posted on: Thu, 01/15/2004 - 3:04pm
momjd's picture
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Joined: 02/24/2002 - 09:00

My son has some disorder that impairs his ability to digest most (maybe all foods) even thought the test negative to IgE testing. He has several IgE positives as well. We are pretty sure that he has a food induced eosinophilic condition. The eosinophils weren't present to confirm diagnosis when he was tested b/c he had been on an elemental formula that cleared him up. So we don't know for sure if he has the condition or not.

Posted on: Wed, 01/21/2004 - 5:43am
mistey's picture
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Joined: 01/18/2004 - 09:00

Sara- how did you find out about your son having this? What were the symptoms that prompted testing? I have been diagnosed with Lupus and my son is allergic to MANY things. He is 2 and is also sick all the time with allergies, asthma or some type of virus or infection. He rarely goes over 2 weeks without seeing a doctor for something or another.

Posted on: Wed, 01/21/2004 - 6:53am
Sarahfran's picture
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In Connor's case, it was just the frequency and severity of his infections that prompted one of our pediatricians to request immune system testing. At that point he was not quite a year old and had so many infections (mostly ear, but also sinus, skin, eyes, etc. as well as a nasty case of pneumonia that took two months to clear up entirely) that it was pretty evident that SOMETHING was wrong. He also wasn't responding well to antibiotics--he'd get an ear infection, start on antibiotics, but need two or three courses of different antibiotics to clear up the infection.
I say "pretty evident" but really it wasn't. What he was getting were common childhood infections, he just was getting them way more frequently than usual. Many doctors don't think beyond the symptoms at hand, so it's easy to just keep treating the infections and ignore the larger problem. We had one doctor in the pediatric practice we went to who told us "oh, it's normal for a child to have so many infections. He'll grow out of them." This was AFTER he had ear tubes put in and was still getting one infection after another and AFTER initial immune system testing had showed a deficiency of one Ig subclass. What was frustrating is that at that point, Connor had testing that indicated a serious deficit of two Ig classes (IgA and IgG) and an abnormally high level of IgM but NO ONE, not even the immunologist, paid attention to these results. We had nearly given up and were just going along as best we could when we finally decided to go back to the immunologist, desperate for any answer. Oddly enough, we accidentally made the appointment with the wrong doctor--not the one we saw previously, but another one in the same practice (one of the best in the world, BTW. This was the Johns Hopkins Department of Pediatric Allergy and Immunology, so it's not like it was a bunch of ignorant quacks) and HE was the one who really looked at the test results, ordered the tests again just to be sure, and started Connor with gammaglobulin treatment.
Sorry to go on so long, but really what it comes down to was a pediatrician who looked at the total picture and realized something was up and started the ball rolling, and then DH and I getting frustrated enough to pursue testing over nearly two years.
There are many internet resources for primary immune deficiencies. This one: [url="http://www.pedpid.com/"]http://www.pedpid.com/[/url] is a good place to start and also has a "10 warning signs" list that is helpful. This one: [url="http://www.primaryimmune.org/"]http://www.primaryimmune.org/[/url] has more scientific information and a very good patient and family handbook.
Interestingly, one of my biggest supports during the past two years was a woman at work who has lupus and who has a son who has also gone through a lot of the same thing my son did--allergies and asthma, frequent infections, so many illnesses that one year he was going to be held back in school simply because of the number of days he missed, etc. He's now in fourth or fifth grade and DID actually outgrow many of his problems. He's still sicker than most kids, but hasn't been hospitalized in the past year and a half and is generally doing well. Like me, though, his mother learned that you really do have to just keep pushing things and don't let up. If you just know in your gut that something may be wrong, it's best to pursue it and try to get some answers.
Good luck!
Sarah

Posted on: Wed, 01/21/2004 - 7:19am
gerilynn's picture
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Joined: 09/17/2003 - 09:00

My daughter in addition to PA also has Juvenille Arthritis!

Posted on: Thu, 01/22/2004 - 6:35am
MOT's picture
MOT
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Joined: 01/22/2004 - 09:00

We found out last year that our now 12 year old multiple-food allergic son has Crohn's disease. Interestingly, I know two adult individuals who have peanut/food allergies and each has a sibling with Crohn's. Perhaps no connection but interesting nonetheless.

Posted on: Thu, 01/22/2004 - 8:58am
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

Interesting. Several years ago there was a boy in my elder son's (non-PA) class who had both PA and Crohn's. Hmmm....
Amy

Posted on: Thu, 01/22/2004 - 9:00am
synthia's picture
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Joined: 10/05/2002 - 09:00

momma2boys
I just found out today allergiest that she has less then (5) on her IgA.
Did you doctor say what the IgA does for the body?
DD allergiest said it had something to do with the nose and keeping the germs from getting in to the respatory(sp?).
Love this site
Synthia
[This message has been edited by synthia (edited February 13, 2005).]

Posted on: Thu, 01/22/2004 - 9:48am
momma2boys's picture
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Joined: 03/14/2003 - 09:00

Synthia, here is a link that describes it better for you but basically you get more infections in ears, sinus, lungs, etc. and may need longer courses of antibiotics. The MOST important thing is if she ever needs a blood transfusion you have to make sure you tell them she is IgA deficient. They then have to remove the IgA from the blood or her body will attack it and cause a very bad reaction.
If you have anymore questions feel free to ask me.

Posted on: Fri, 01/23/2004 - 2:41am
Sarahfran's picture
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Joined: 06/08/2000 - 09:00

Mamma2boys--where's that link? I'd like to see it.
From what the immunologist told us, IgA is the antibody in mucous secretions and so works against bacteria/viruses, etc. as they enter the body. Connor is getting gammaglobulin which increases his IgG level, but there's no way to increase a person's IgA level, so he'll still be susceptible to sinus and respiratory infections.
I can't help but think that there must be a link between autoimmune problems (like Crohn's, juvenile arthritis, etc.) and allergies, which essentially are another version of the immune system overreacting.
Sarah

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