We've had a fairly significant change in Wesley so I thought it best to update via blog..
Wesley had some blood work done last week and we got a call earlier in the week that he has an IGA deficiency. IGA deficiency is a genetic immunodeficiency where he lacks immunoglobulin A, which is a type of antibody that protects against infection of the mucous membrane lining of the mouth, eyes, ears, airways, gastrointestinal tract, etc.
The body has a number of different groups of antibodies..when someone is lacking in more than one of those groups they are considered Immunocompromised .
On one front this answers SO many questions as to why he was one big constant ear infection for the first year of his life. We'd get stronger and stronger antibiotics and it would fix it for maybe a week, then we'd start all over again. It's explains why when he gets an Asthma attack it takes forever to get him over it. It explains why when he's sick it takes so long for him to feel better.
If you think about illnesses that affect the mouth, eyes, ears, respiratory tract and gastrointestinal tract we're talking about nearly -every- childhood illness. Flu, colds, stomach bugs, pink eye, runny nose, etc.
Basically he lacks the antibodies to fight these illnesses easily. They hit him longer and harder. I've always said sicknesses hit him harder but never really knew WHY until now. At age 4 Wesley is a fairly healthy child...I contribute a lot of that to our diet.. we try to limit processed foods, we eat -lots- of veggies and fruits, we use hand sanitizer and wash our hands often; but when he does get sick.. it's a fight.
On another front I am extremely worried.. How will this affect him once he's in school full time, around everyone's germs for 8 hours a day? How will this affect him as he ages? Will this affect any of the future surgeries he is to have?
At this point we don't know much about how this will affect him. We have an appointment with an immunologist in about a week and have an appt with a gastroenterologist in August.
This was probably the 2nd biggest blow to us as parents..first being when we found out he had a cleft lip and palate. I never ever imagined anything was wrong at such a genetic level. Since this is a genetic thing is it somehow related to his clefts? Or is this just two random happenings. My gut says no.
I hope to get answers to all these questions when we start seeing specialists.
3 comments:
My 4 year old is also IGA deficient. We saw Dr Lower at Hutch Clinic and she is FANTASTIC! They tested her response to her infant vaccinations and found she only has 4% protection vs the 75-80% she should have. We redid several of her vaccinations and retested and she is in the normal range now. Now that we've boosted her immune system she rarely gets sick. She has had pneumonia (3rd time, 1st since boosting) and a virus but that is HUGE progress compared to literally being sick every other week with ear infections, sinus infections, pneumonia, etc. There IS hope! Hopefully they'll be able to boost your son's system and combined with developing naturally as he ages he will live a normal and healthy life! Also, another possibility is that the lab compared is numbers to that of an adult. Because my daughter is so low and my son has also been sick a lot, our pediatrician wanted him tested as well. She called me a bit panicked because his levels were critically low. When we met with Dr Lower for him she reviewed his numbers and said he was borderline low, but not critical. The lab doesn't take age into consideration. They only compare the numbers to "normal" which is really normal for an adult, not a child. So she looked at his number and his age and determined he was doing fine. He did end up needing revaccinated because of low titers on Hib and has a vitamin D deficiency, but nowhere near critical like we first were told.
I hope that gives you a little bit of encouragement as you sit in the very long and stressful waiting period.
Thank you so much for your input!! Very interesting. It's good to meet another IGA deficient mom.
I did just post an update. :-) We saw Dr. Galicia as she was the first available. He is low on some vaccines but we will be redoing those and are hoping his levels will come up to normal.
This is all so new to me. I finally feel like I am beginning to grasp everything. I am slightly concerned about this winter and the threat of pneumonia but we'll take care of that if it should come.
He just got over one pretty serious sickness, since being diagnosed, unfortunately it was a Saturday (isn't that when ALL kids get sick. ha) and we had to do walk in care. I wasn't totally happy with who we saw as he made me feel a bit dumb for bringing him in for a fever..but in the end he listened to me that he was IGA deficient and gave him antibiotics for the sinus infection and he kicked that in a couple days, which was amazing.
I'm going to go out on a limb and guess you saw Dr. Thode. He's an absolute idiot with the personality of a dead fish, so don't feel dumb at ALL! I've actually made him give me my co-pay back and walked out before because he was such a moron. He tried to tell me I couldn't have a medication because I was breastfeeding even though I had cleared it with the lactation consult, pediatrician & my OBGYN (plus done my own research, of course). I flat out refuse to see him now.
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