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Re type 1 and IgA deficiency

Discussion in 'Parents of Children with Type 1' started by irishmom, Jan 21, 2012.

  1. irishmom

    irishmom Approved members

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    Hello...I have not been on here in quite awhile...my son Patrick was diagnosed a lil over a year and half ago with t1 at a routine sports physical.....since then many things have changed ..like so many others....they did test Patrick for celiacs disease...which came out inconclusive ...as he now also has IgA deficiency.....and now also has no antibody to group A strep....he has had 23 bacterial infections....and strep 11 times in the past year( his tonsils were removed when he was 5) we now have started a every 28 day shot of penicillin....though that only protects him from group A strep....he has missed almost 30 days of school and being a freshman in high school that is challenging to catch up..we have been to countless doctors who all are at a loss of what to do....as no cure for either is available....we were in the hospital getting three bags of fluids..zofran...sugars around 500....and then had to get potassium after 3 bags and ten units and 4 hours..his bs got down to 290.....and the vomiting stopped but the upper respitatory infection plus the other virus got a hold of him....I'm trying to see if anyone out there knows of someone that has both of these...or has any suggestions...I have been told I'm sorry by so many doctors...that I'm hoping posting here will help....
    Thanks,.
    Marcia
    Mom of 8

    Patrick diagnosed 7-28-2010
     
  2. Kaylas mom

    Kaylas mom Approved members

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    Kayla, Noah and I are all IgA def. Nick has CVID, which varies for people but for him is IgG and IgM def... oddly enough he makes enough IgA. Kayla doesn't make antibodies to diphtheria and Nick doesn't make antibodies to any polysaccharide vaccines.
     
  3. azdrews

    azdrews Approved members

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    My 5 year old was also just found to be IgA deficient too. And honestly, I have no idea what that means, except that he may be more susceptible to illnesses. His endo didn't seem too concerned about it since Adam is fairly healthy, but now I wonder if I should worry (as if I need more to worry about, LOL!)
     
  4. CassiesMama

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    We found out Cassidy has an IgA deficiency as well and I asked her primary doc about it who said it would only be an issue if she was getting sick alot. Then she would get referred to an immunologist.
     
  5. Kaylas mom

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    It is the most common immune deficiency disorder.
     
  6. Colleen

    Colleen Approved members

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    Selective IgA deficiency is common. You have to have celiac test by biopsy because the IgA deficiency can give a false negative. I have CVID and have low IgA, IgM and IgA. My youngest has low counts on all 3 as well. We both had to be reimmunized on some of the vaccines. That is common. You need to find an immunologist who specializes in it. There is no cure for any of the forms of it. Being proactive in good handwashing and avoiding sick people is a start. Need to be in contact with immunologist when sick as well for antibiotics.
    I have antibodies to IgA. This can happen if you are IgA deficient. This just means I am allergic to blood. I can receive a blood transfusion, but have to be premedicated and the blood has to be washed. I still had a reaction to it but they were able to treat with iv steroids.
    I am in Illinois as well. I see an immunologist Dr. Tobin at Rush University and had a recent consult with an immunologist in Hinsdale Dr. Wendall Richmond. I developed a rare skin disease and needed a second opinion. If you need a number to either let me know.
     
  7. mmgirls

    mmgirls Approved members

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    Question?

    My nephew is IgA defiecient and missing some liver enzymes. Would you advocate for T1D testing, knowing that a 1st cousin is T1D?

    Just wondering. But you know how highdsight is 20/20.
     
  8. irishmom

    irishmom Approved members

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    Patrick has had the biopsy for celiac...and have learned that IgA deficiency is very common and typically non symptomatic....except when another diseases present....he has been sick continuously...over the past year...which then turns into a viscous cycle of sugars...illness..asthma...he has good IgG...which is good...except any respiratory illness or any virus he has nothing to fight...the only "cure" is to treat the symptoms...w have seen an immunologist ...and since his is IgA defcieny...he cannot get any treatment....it is so tiring.and when he got sick a few weeks ago we had to go back on steroids which was just a rough week...I thank you for the responses...I knew I could get some help and support here....
    Thanks...
    Marcia
    Mom to 8
    Patrick diagnosed 07-28-2010
     

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