Other immune system disorders?

Posted on: Thu, 01/15/2004 - 1:10am
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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
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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
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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
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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
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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
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My daughter in addition to PA also has Juvenille Arthritis!

Posted on: Thu, 01/22/2004 - 6:35am
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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
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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
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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
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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
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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

Posted on: Fri, 01/23/2004 - 3:06am
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[url="http://www.primaryimmune.org/pubs/book_pats/e_ch04.pdf"]http://www.primaryimmune.org/pubs/book_pats/e_ch04.pdf[/url]
Here you go, sorry, i forgot to paste the link!
This link does say that allergies are more common in people with IgA deficiency.

Posted on: Fri, 01/23/2004 - 3:17am
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Sarah,Momma2boys
I am a little overwhelmed right now,but I want to thank you both for helping dd and her mom!!
I am trying to get a referal and a Immunologist to see dd.
I am getting a clearer picture of WHY she is so sick.If you call the 1-800-296-4433 for IDF-Immune Deficiency Foundation they are very helpful(Ms M thank you for your help!)
Ya REALY gota love this site!!!
Synthia
[This message has been edited by synthia (edited August 27, 2005).]

Posted on: Fri, 01/23/2004 - 4:31am
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I was diagnosed with Crohn's disease as a sophomore in high school. Had several flare-ups during college, and things have been quiet ever since. I'm having the fatigue and GI problems again, along with a batch of canker sores (which are basically ulcers at the very top of the GI tract), so it's very much in the back of my mind right now.
It can be fairly disabling at its worst, and our support system out here is almost non-existent. A flare-up is NOT on my list of fun things to do in my spare time...grumble, grumble, grumble.
-Sue

Posted on: Fri, 01/23/2004 - 5:26am
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My 9yr old PA son was diagnosed with Crohn's this past summer. My husband was diagnosed at 35yrs old. My son has PA, asthma,and Crohn's all of which I feel are linked. Crohn's is by FAR the hardest to deal with.

Posted on: Fri, 01/23/2004 - 11:33am
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Synthia, not a problem! We went through a lot of illness before they figured it out too. Only problem is there is nothing they can do. My allergist did say that sometimes there body just starts making IgA. So they will test him again and maybe it will be there.
I guess it could be worse things they could have. Hang in there.

Posted on: Fri, 01/23/2004 - 12:54pm
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I posted earlier in the other thread re: immunoglobulin deficiencies, but should probably post here too.
My 18 month old non-PA ds was IgA and IgG deficiencies. He was not tested because of the number of infections...we discovered it during our test for Celiac's. We have been seeing an immunologist. Surprisingly, he has been quite healthy re: his immune system. No ear infections, respiratory infections, or major viruses....not even a congested, nor runny nose. The immunologist is quite AMAZED!
He does have other problems...mainly developmental and speech (he has yet to say his first word) delays. He is receiving physical and occupational therapy and will probably start speech in the future. He has also been diagnosed with failure to thrive and suffers from chronic constipation.

Posted on: Fri, 01/23/2004 - 2:26pm
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My little brother had very low IgA levels when he was much younger. He is now 10 and the last time his immune function was checked (I think he was 7 or 8) his IgA levels were still a little on the low side but were considered "almost normal" whatever that means. He used to get very frequent sinus infections but they have gotten less frequent and less severe as he gets older. Synthia good luck with Little V
Allison

Posted on: Sat, 01/24/2004 - 3:21am
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For those of you dealing with Crohn's . . . were there any symptoms/indications at an earlier age, years prior to diagnosis?

Posted on: Sat, 01/24/2004 - 5:00am
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Yonit,
My son once in a great while would complain of a tummy ache and about once a month had the runs for a day (with no other symptoms). He got very ill last May and had blood with his poops. They at first thought he had a parasite, he had a culture done and it was neg. Because of my husband having Crohn's they didn't wait and watch him. He had a colonoscopy and an upper GI and an endoscopy all by July. Most kids have had a slow down in their growth due to the lack of absorbing nutrition,(as well as a lack of appetite) but we caught my sons Crohn's early. I would be happy to answer any questions you might have off-board if you would like.
Tami
Forgot to add that my husband had symptoms for about 10 years prior to diagnoses.
[This message has been edited by tamisly (edited January 24, 2004).]

Posted on: Sun, 01/25/2004 - 2:05am
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My son was initially only complaining of intermittent then more frequent stomachaches. They became so frequent that we took him to the doctor. The doc told us that it was probably gastritis but did a blood test. Two days later he called with some bad news. It appeared that our son may possibly have Crohn's. The doc scheduled us with an appt. with a gastroenterologist a week later, but our son's condition with stomachaches and then spitting up in the days after required us to take him to the hospital where he remained for a few days with an i.v. until he recv'd a colonoscopy that confirmed the diagnosis of Crohn's. In retrospect, we now realize that his extreme thinness and lack of good measurable growth over a period of about two years were probably signs of Crohn's. He made an almost instantaneous recovery once he was diagnosed and started on prednisone. He now takes only Colazol for Crohn's (the usual medication Asacol has lactose and he's allergic to milk!) Since his diagnosis he has gained about 30 lbs. (he is still slender to medium build but looks good)and grown over 3 inches. He has multiple food allergies and mild asthma. So if you're dealing with only food allergies and asthma, be thankful!!Tamisley, if you want to talk, I guess we would have a lot in common!

Posted on: Sun, 01/25/2004 - 2:54am
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Mott,
If you would like to talk off board I will put my e-mail address on my profile. I look forward to hearing from you.
Tami

Posted on: Sun, 01/25/2004 - 2:57am
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Mott,
I can't seem to add my e-mail. If you would like to add yours I will contact you.
Tami
[This message has been edited by tamisly (edited January 25, 2004).]
[This message has been edited by tamisly (edited January 25, 2004).]

Posted on: Sun, 01/25/2004 - 5:39am
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Hi Tamisly, My e-mail address is now made available in my profile. Please send me your e-mail address and we can talk. I could also get my children to set me up with instant messenging as well.

Posted on: Sun, 01/25/2004 - 10:02am
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Allison,Thank you
On another Note dd had a contact reaction on fri,that is what started this whole mess with the infection,not to mention that her IgA level is below 5.Breathing treatments started on mon,and she started to wheeze again on sun.I am soooo tired.
I'll try to post more next week if I find out anything.
Thanks everyone!!!!
Love this site
Synthia [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
[This message has been edited by synthia (edited February 13, 2005).]

Posted on: Sun, 01/25/2004 - 10:17am
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Quote:Originally posted by synthia:
[b]Ya REALY gota love this site!!!
[/b]
absolutely. (this thread is a perfect example of what a PA support site is all about, IMPHO.) I believe in well rounded support. Boolean support, even. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Posted on: Thu, 03/18/2004 - 7:30am
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Just bringing this back to the top!
Tests are being done, we will know in about 3 weeks!
Love this site
Synthia

Posted on: Thu, 03/18/2004 - 10:00am
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My husband's nephew was diagnosed with Crohn's recently. A friend gave me an article about scientists discovering a bacteria prominent in milk that may be the cause of Crohn's. The article recommended drinking organic milk because it is ultrapasturized and kills the bacteria, preventing more from getting into your system. Regular milk is not ultrapasturized and it contains the bacteria. My husband read something that recommended that you drink the ultrapasturized milk and eat priobotics or something- I guess cultures found in yogurts. There's probably a lot of info out there on it now. Good Luck.

Posted on: Thu, 03/18/2004 - 7:59pm
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Wow, there is a lot of Crohn's sufferers here. My PA daughter and I both suffer from the closely related Ulcerative Colitis. (Same disease, but lower down). I was diagnosed when I was 15 and she was only 6 when she was diagnosed! I always said I wouldn't wish this (literally) crappy disease on my worst enemy, and I ended up passing it on genetically to my own daughter! There's some guilt there!
Anyway, I have been to a Ulcerative Colitis support chat site and almost everyone there has certain foods that will make them bleed and have diarrhea attacks within hours. The food that makes most of them sick the most often is milk! With me it's wheat. Also, most of the doctors will tell us that there is no connection between foods and flare-ups, but anyone with this disease knows that's not true!!
So, I think there is a connection between food allergies and Crohn's/Ulcerative Colitis and the reaction is happening inside the digestive tract.
-Kay

Posted on: Thu, 03/18/2004 - 11:38pm
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Anyone out here with arthritis? My 3 year old was dioagosed with JRA 10 months after her PA diagnosis. I want to find out if there is a connection.

Posted on: Fri, 03/19/2004 - 4:10am
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O.K. now you all have me wondering if dd could possibly be suffering from an immune deficiency? Here is why I think it could be a good possibility after reading the posts here.
She has had problems with respiratory infections since she was a baby. First wheezed at about a year, sinus infections- at least five or six in her four short years, a couple of ear infections maybe two, had RSV and pneumonia at 22 months, diagnosed with Reactive Airway Disease at the same time, pneumonia again at 3 years, pneumonia last March-3 1/2 yrs, croup in October, sinus infection right after croup, pneumonia in November, anaphylactic reaction to pistachio in December and diagnosed PA/TNA right after via skin tests, diagnosed with Asthma at the same time, croup in February and pneumonia in February, still on nocturnal oxygen for the pneumonia. She has never had any blood work up done, no RSAT testing either.
Now after reading the above, anyone have any opinions or thoughts as to what you have read and a possible immune deficiency? Not looking for medical advice, just some thoughts! Am I right in my thinking, or am I making something out of nothing?
I have placed a call to her pediatrician to discuss the possibility and I am waiting for him to return my call.

Posted on: Fri, 03/19/2004 - 4:55am
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We are cking dd for RA and Sub-classes of IgG and IgA,IgM as well as othersand Lupus
Love this site
Synthia
update no RA,or Lupus
[This message has been edited by synthia (edited February 13, 2005).]

Posted on: Fri, 03/19/2004 - 4:57am
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oops double post!
[This message has been edited by synthia (edited March 19, 2004).]

Posted on: Fri, 03/19/2004 - 8:40am
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Synthia, Let us know what happens with all of little V's testing.
I spoke with dd pediatrician and he agreed that now would be a good time to test her for any immune deficiencies, with taking into consideration her past history and the fact that things seem to be esculating.
He is faxing the orders for the testing to the lab, she will go in on Monday morning and he said we should have the results in about 48-72 hours.
Thanks to all who posted thier experiences here. I would have never thought about something such as this without you all.
------------------
Alicia, mom to:
Edward-21 years-EA,dog, cat,sulfa drugs
Cody-8 years- EA,dog,cat,mosquito
Shaylyn-4 years-PA/TNA,all legumes,peas,dog,cat,Amoxicillian,Zithromax,Asthma

Posted on: Fri, 03/19/2004 - 9:58am
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Shaylynsmom,
I sure will!!
Love this site
Synthia

Posted on: Tue, 04/06/2004 - 2:38am
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I don't have the report in my hands [b] yet[/b] but will soon!
I have spoke with her doc on the test results.
DD IgA is below 6,needless to say she has a IgA deficiency.
I have more info but have to find the time to post it.Feel free to ask me any ?'s.
Shaylynsmon, Any news on your end?
Love this site
Synthia

Posted on: Fri, 04/09/2004 - 1:00pm
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Synthia,
Yes, the results are back and dd level's are all normal! The pediatrician's theory once again is that she is just a very sickly child and will one day hopefully grow out of it.
I am thrilled with the diagnosis but am very upset that there is nothing I can do to prevent her from getting ill all the time, aside of putting her in a plastic bubble? Wouldn't that be a sight? [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
I am so sorry to here that the news is not as good on your end. I will be praying for all of you. Keep me updated on the progress.
------------------
Alicia, mom to:
Edward-21 years-EA,dog, cat,sulfa drugs
Cody-8 years- EA,dog,cat,mosquito
Shaylyn-4 years-PA/TNA,all legumes,peas,dog,cat,Amoxicillian,Zithromax,Asthma

Posted on: Fri, 04/09/2004 - 1:41pm
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Synthia, I'm very interested in hearing what you found out, since my son has an IgA def. as well. My allergist or ped. didnt seem to think he needed a specialist. So depending on what they told you, I may rethink.

Posted on: Sat, 02/12/2005 - 10:29pm
synthia's picture
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momma2boy,
No RA or Lupus!!!
momma2boys should we link the other threads togeather?
------------------
Love this site
Synthia
[This message has been edited by synthia (edited February 13, 2005).]edited to change 3 to 2,my eyes are going!!
[This message has been edited by synthia (edited February 13, 2005).]

Posted on: Sun, 02/13/2005 - 12:39pm
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Wow...this is so interesting. I have always felt a piece of the puzzle was missing when it came to my children. My DD has juvenile arthritis (diagnosed as age 5), my DS had frequent ear infections and was later diagnosed is an immune deficiency because he was always sick when he as little and his baby vaccinations did not work the first time, my youngest DS has asthma and pa. Doctors have never linked this altogher, but I also have a sister with lupus.
I am just amazed that all of this could be related. Think I will be doing more research on this subject. Thanks for the great posts!
Donna

Posted on: Sat, 02/19/2005 - 6:52am
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My son was diagnosed with type 1 diabetes when he was 26 months old (March '04) and then had a severe contact reaction to peanut butter the next month (April '04). I know our allergist mentioned that his immune system seemed to be going haywire. He also had a unexplained reaction in June'04 which may have been to eggs though he tested only mildly allergic to them (but was eating a lot - he wasn't tested for eggs until after that reaction though!).
I was cautious in introducing new foods to him after that although since it has almost been a year we go back to trying new things. He is too young to limit his diet that much I guess. I am hopeful that he might outgrow the peanut allergy if his immune system was just over-reacting to stuff last Spring. But we are very cautious.

Posted on: Sun, 02/20/2005 - 1:30pm
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My sister has Crohn's, Anklyosing Spondylitis (a type of auto-immune arthritis), and Becet's Disease. I carry the genetic markers for the AS, but only have mild symptoms that several rheumatologists have said are probably a milder, non-diagnosable form. Interesting how it all may relate together with the food allergies/immuno system mis-regulation. DD also had horrible eczema for her first 2 years, but it literally disappeared over a 3 week span when she turned 2.
------------------
Lori Jo,
Rose, 7-31-02, PA
Beatrice & Georgia, 8-14-99

Posted on: Wed, 03/15/2006 - 10:52pm
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reraising to compliment another thread.

Posted on: Sun, 06/25/2006 - 12:33am
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Interesting:
[url="http://members.jorsm.com/~binstock/ebv-mosq.htm"]http://members.jorsm.com/~binstock/ebv-mosq.htm[/url]
[url="http://members.jorsm.com/~binstock/chronic1.htm"]http://members.jorsm.com/~binstock/chronic1.htm[/url]
I've tested a high positive for anti-nuclear antibodies, and three times positive for [i]mono[/i]. My oldest tested positive for mono at age 9. (He's currently dealing with some very swollen glands off and on, and general malaise, so I'm back to the doctors office for the umpteenth time this year. Last Mono Spot was negative......)
General Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, currentness, content, or applicability of the links in this post.

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According to the U.S. National Library of Medicine, Salmonella enterocolitis...

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The more things are repeated, the more likely they will become part of what we call “common knowledge,” or things that most people know.

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