Home  » Message Board Hotline 1-866-INFO-4-PI Search:  Welcome to the Message Board login join search moderated by Admin  Reply to Discussion | New Discussion next >>    Discussion Topic: Immune Deficient Toddler -- page: 1 2   03-03-2006 @ 3:30 PM                           reply edit   We just had my 2 year old son tested for an immune deficiency.  His first blood test showed the number of antibodies in his system registered in the normal range, but all of the antibodies tested are functioning abnormally.  Does anyone have any experience in interpreting this? Our allergist/immunologist gave our son the pneumonia vaccine as an additional test to see if his body can produce the proper antibodies to fight an infection.  We'll find out in four weeks if things are working right. My question is this--can the vaccine actually BOOST my son's immune system, or is it just a way of double-checking the accuracy of the first immunoglobulin test?   This is all very new and scary.  My son has been chronically sick since he was 3 months old--never in the hospital, but chronic ear infections, colds, etc. Just as an example: he tested positive for RSV at Christmas '05, the flu the first week in Jan '06, and the flu again in Feb '06.  All of these infections were clinically tested using the nasal swab method, so we're sure it was RSV or the flu and not just a cold or allergies.   Now my son has THRUSH, which according to the website, is somewhat unusual for children over 1 and sometimes indicative of Primary Immune Deficiency.  I know all kids are different, but I would like to hear if anyone has had similar problems and what the prognosis has been for you. Also, if my son is diagnosed with PID, how in the world would you give an IG IV to a fidgety toddler?!? Any ideas or suggestions are appreciated. Thanks!! Heather This message was updated on 3-8-06 @ 11:12 PM 03-10-2006 @ 12:57 PM                           reply edit   Heather - My son diagnosed with agammaglobulinenemia (XLA) at 4 months of age. Basically, my son cannot produce antibodies on this own. Luckily we have a family history so we knew that he had to be tested early. He has been receiving the IVIG ever since(he is now 20 months, and doing well (thank God). My answer is in reference to your question about the how to do the IVIG infusions on a toddler. I am not going to lie...it is difficult at times. The pre-medication that my son gets before infusions usually tires him out a bit(benadryl/tylenol). We watch his favorite movies while he sits and relaxes. The infusions last approx. 2 hours...so by the end my son wants to walk around and play with toys. We just sit with him and play + make sure he does not try to pull out the IV.  It is difficult at times...but just know that you are not alone. It is a treatment that my son must receive ...there is no way around it. Just try to keep things in perspective (though its hard at times).  Good Luck with everything. Kouri 03-11-2006 @ 12:39 PM                           reply edit   Dear Kouri, Thanks so much for your encouraging words.  I am hoping that the pneumonia vaccine will be enough to boost my son's immune system, but I have a sinking feeling that it won't. According to our allergist/immunologist, the initial blood test showed that my son has enough antibodies, but they are all functioning abnormally.   Your suggestions are helpful about giving Tylenol and Benedryl beforehand.  I cannot describe how active my son is--just getting him to sit on my lap for two minutes is difficult--twisting, turning and pushing to get down.  His behavior isn't really a problem at home or the park, but it makes doctors visits really difficult.  Colin is just always on the go--I wish I had his energy! I had another idea as I was reading your email--maybe we could bring in his carseat and do the infusions while he's seated in it.  That might sound a bit silly, but it is pretty padded and comfortable, and most importantly, he knows he has to stay seated while in it.  (It has been great for us on airplanes--as long as he's in his carseat, he's great!)  Like you said, we could watch his favorite shows as we're waiting--and maybe even plan the infusion around his nap time. Also, I have heard that the infusions are very expensive.  Is this something that insurance covers fairly routinely?  Fortunately, our insurance coverage is pretty good. Well, we'll get the follow-up bloodwork done in about two weeks.  At that point, we'll know for sure.  Kids just should not be as sick as my son has been.  I really wish my pediatrician would have tested sooner.  At least we now know what has been wrong.  I have to keep reminding myself how fortunate we are to have treatments for immune deficiency.   Thanks again for your kind words.  Your positive outlook is very inspiring. Good luck to you, :)Heather 03-14-2006 @ 7:52 PM                           reply edit   Heather - I am glad that my email helped. The pre-medications(tylenol & benadryl) are given to most patients before each infusion (or at least that is my impression)in case of reaction. My son sounds just as energetic as your son(he is 20 months). We have been doing my son's infusions at home (with a nurse) for 5 months now and that is going well. Before that we had to go to Childrens Hospital once a month for them. The carseat is a good idea. We usually sit my son in his highchair so he is somewhat restricted(he is quite strong) when they are trying to put the IV in. Our insurance covers most costs (the immune globulin is VERY expensive). Well....good luck with everything. My email is kourwright@yahoo.com if you have any further questions. Kouri 09-27-2007 @ 10:05 PM                           reply edit   Hello I'm Jessica I'm now 12 years old. I have Common Variable Immune Defincency too. I have been getting IVS since I was age 5. Don't worry about your son he should be feeling better soon. I dont enjoy getting the IV but I feel alot better and I'm not sick every week. I will be getting my medications for the rest of my life.  Any Comments please email me back. Jessica 10-16-2007 @ 4:35 PM                           reply edit   Hi. My son turned 2 Sept. 17 and we found out about his immune deficieny in Nov. 2006. He had been in the hospital at 3 weeks, 3 months, and we were life flighted to St. Francis at 1 year where we spent 11 days and had 2 surgeries due to pneumonia. We have to give him a weekly IVIG treatment which is kind of tricky to hold a 2 year old down for an hour as you very well know. I have learned that I can get him stuck and put him in the stroller to go for a walk and he stays pretty content. If you would like to chat more about my experience please email me back. April 10-29-2007 @ 7:24 PM                           reply edit   My grandson was 7months old when he past away. He had sever combined immundefency. There are 5 known types. The type he had only affects boys. If he had been diginoist at birth or up to 3.5 months old, he could have had a bonemorrow transplant and had 95% chance servial. Landon had infections one after the other,until he got thrush and had been treated for it up to about 3 months and still had it when he past away. I hope you and your doctors have tested for this deise. The sooner your child is dignost the sooner you can get proper treatment. 11-05-2007 @ 9:08 AM                           reply edit   Heather, What was your outcome if you don't mind sharing. 02-06-2009 @ 6:24 PM                           reply edit   This is for the unknown Grandma with the Grandson that past away? I am soooooo sorry to hear about your great loss.Also your words to try and help others is wonderful! Was the PID he had "Wiskott Aldrich Syndrome? I am asking because my Grandson has been Diagnosed with this rare PID that only stricks 1 in 4 Million boys. He is going to have a BMT in about 1 1/2 to 2 months if everything works out. I surely wood love to talk to anyone that has gone through or will be going through what my Sweet Grandbaby is going through! Thank you, Pam 01-25-2010 @ 8:17 PM                           reply edit   OMG, I could have written this post!  My son is almost 3 & we just found out that he had NO s. pneumo antibodies!  He was re-vaccinated & will be re-tested in 4-6 weeks to see if he is producing antibodies.  All of his other titers were normal.  He has had the rest of his immune system tested & it has always been low normal to normal (his IGA was less than 16 once, but 40 when re-tested 1 yr later). He has been diagnosed with chronic cough & nasal congestion w/ chronic reoccuring infections of unknown etilogy.  He has had 2 EIs, 2 pneumonia, 5 bronchitis, 5 sinus infections & 5 significant viral URIs since 10 months old.  His nose is always running & he is always coughing.  It is a very mucosy cough that causes him to choke.  He has been tested for CF & had multiple scopes.  He had his adnoids removed in September, w/ no change.  He is currently taking Singulair, Symbicort, Veramyst & Zyrtec w/ no improvement in symptoms or infections. I am so curious to know what happens when he is re-tested next month! 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