Immune function questions - Mothering Forums

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#1 of 7 Old 07-27-2011, 07:37 AM - Thread Starter
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I need ideas for ways to increase immune function.  Connor, 4 years old now, has a diagnosis of Velocardiofacial Syndrome/DiGeorge Syndrome/22q Deletion (take your pick on names!)  He has a mild t-cell deficit, suspected b-cell dysfunction, nothing all that alarming on lab work.  However, natural illness history suggests that his immune deficiency is much worse, he is repeatedly sick from the same viruses and bacteria, and shows no immunities in titers. 


For example, he keeps getting severe ear infections.  We have done all we can surgically.  The real root of the infections is his palate, but so far it's not correctable.  We recently did a canaloplasty on his left ear, drilled out his ear canal to widen it, stretched his ear drum, cleaned out his middle ear and mastoid bone.  Despite that, less than 2 months after surgery, and he's infected again :(  He has tubes, we have his reflux under control (did another scope in April to be sure, there is NO signs of reflux, no irritation of his esophagus, no eosinophils)  He's off most dairy, we supplement with Vit D and Vit C, he eats well, he has no signs of aspirating anymore. 


His ENT is at a loss, if the canaloplasty won't control the infections, then his hands are tied.  His immunologist is at a loss, Connor's blood work doesn't look that bad.  A light deficiency, normally not a big deal.  In addition to the ear infections, he continues to get many upper respiratory infections, a couple pneumonias, and other various fevers with rashes and other signs of unknown viral illnesses.  He's had hand foot and mouth, roseola, and many others we couldn't identify.  Most of his ear infections are caused by haemophilus influenzae, non-typeable strain.  Sometimes there's some staph thrown in there too.  Sometimes beta lactamase negative, sometimes positive.  We culture his infections, we alternate his antibiotics, we don't know what else to do. 


Any ideas??  What are we missing?  I have spoken to other parents on the syndrome support boards, a couple have tried IVIg infusions with very good results, but currently Connor's Ig levels are not low.  Except his IgM which is slightly low for some unknown reason, not enough to diagnose a selective IgM deficiency, but we're still confused by it. 

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#2 of 7 Old 09-10-2015, 12:29 PM
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I'm going through similar things with my daughter
I sent you a message. I hope you see this.
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#3 of 7 Old 10-22-2015, 04:09 AM
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Same here- our daughter got arthritis at the age of 18 months after her 2nd dose of DTPolio. She is now 3 and still suffering from her arthritis. She is on methotrexate injections. No doc here believes that it started because of the vaccination, but for us it is clear that the two are related.
Of course- many people have no problems with vaccinations, but our daughter unfortunately had.

Because of the methotrexate we needed the MMR vac as well, which happened to be a lot easier on her. No swelling, no pain whatsoever.
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#4 of 7 Old 10-23-2015, 08:30 AM
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It might be worth talking to a naturopath doctor. I know someone who's had a lot of success with it for herself and her kids, and she had a lot of health problems.
I don't think insurance covers it and I don't know the cost, but if modern medicine is at a loss- there's no harm in giving naturopathy a try.

Good luck, very sorry your baby is going through that.
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#5 of 7 Old 12-11-2015, 10:48 PM
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Have they looked at his IgG subclass numbers or for complement defects? Have they actually tested the B cells to see if they are functional rather then just looking at cell counts? I was under the impression that IVIG was standard treatment for DiGeorge kids, at least thats what I was told by another family who's infant had it and was on IVIG, my child was on it for PIDD so our paths crossed. You could always ask for a 6 month trial and see if illness rates drop. IgG levels are just the tip of the ice burg and having a normal level doesn't mean much. I would seek out another opinion.

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#6 of 7 Old 12-12-2015, 03:47 AM
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Dairy allergy?

My daughter had ear infections and had unusual amount of ear wax and her ear drum got busted once.

My naturopath at that time had another kid with ear problem and had figured it was the dairy that caused it and asked us to go off dairy for my daughter. It took almost a ear to even see her ear drum and the wax slowly reduced. 6 yrs later, we still haven't got a ear infection again.

Dairy also triggers a lot of respiratory illnesses.

You might want to look into this.
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#7 of 7 Old 12-12-2015, 02:40 PM
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I know nothing about your boy's condition, but I do know medicine. If you haven't done so already, and you can scrape together the resources, I hope you can get a second opinion. If medical pieces aren't making sense, and it sounds like your son's are not, just having a new set of eyes look at somebody can be helpful. Good docs with decent self confidence should not feel threatened if you do that, and you don't have to look at it as giving up on the docs you have. In the online groups, do any parents have an idea of anybody nationally who has a special interest in this syndrome?
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