Kaleb Update

So we got the results of all Kaleb's tests and found out he has IgA Deficiency, which means his body doesn't produce an anti-body called Immunoglobulin A. This is a separate issue than Celiac although people who are IgA deficient are 15x's more likely to have Celiac Disease than people who don't. Unfortunately people who are IgA deficient are unable to be tested for Celiac through a blood test because that is the anti-body they look for in the blood test. So now the only way to get a positive diagnosis for Celiac is to do an endoscopy and biopsy of his small intestine. What worries me is that people with IgA deficiency are at a much higher risk of infection due to their lack of antibodies and I am concerned that the biopsy could lead to an infection. Additionally they would need to put him under general anesthesia to do the procedure, which carries it's own set of risks. Since Kaleb has so many signs of Celiac (and we have recently discovered a family history of the disease) AND he has IgA Deficiency which puts him in a high risk category for Celiac, we decided to just go ahead and put him on gluten free diet for the next 6 months and see how he responds. If he starts gaining weight and showing significant improvement, then that is enough proof for us and we can just skip the endoscopy and the risks it carries. Happily, we started him on a gluten free diet several days ago and has already gained 4 ounces!! We have been monitoring his weight very closely over the last 6 weeks and even on a high calorie diet he previously had not gained an ounce and never weighed more than 24.4 oz. and as of this morning is now 24.8 oz! So we are seeing results already and I'm hoping that this continues as we keep him off gluten.

Separately, I have been researching IgA defiency and realized it is a much more serious condition than I realized. IgA is an antibody that protects against infections of the mucous membranes; lining the mouth, airways, and digestive tract. People with this disorder can suffer with a lifetime of infections and ironically one of the things used to treat this disorder is human breast milk. Human milk is very high in IgA and when consumed by someone with IgA deficiency, increases their own IgA levels. Most children don't get diagnosed with having IgA deficiency until after they are weaned and then start getting lots of illnesses and infections. We just stumbled upon Kaleb having this while I am still nursing him only because we were testing for something else. I have unknowingly been keeping him healthy through my milk. If I had weaned him earlier, we most likely would have had a very sick child and still not known what was wrong with him because we probably would have chalked up his lack of growth to his illnesses. This is all so scary and overwhelming but I also am SO glad I haven't weaned him yet. The thing is, what am I supposed to do? Nurse him forever? The good news is people can outgrow IgA deficiency so there is a chance that if I keep nursing him, he will eventually start producing his own IgA and will never have to deal with the recurring illnesses and infections that most people with this disorder suffer with. I'm making an appt. with an Immunologist next week to go in and talk about his long term care.

The other issue we have been incredibly lucky with is vaccinations. Kaleb has not had any vaccines yet because Kobe had an adverse reaction to his second set of vaccines and I started researching vaccinations and decided not to vaccinate him till he was 2 in order to let the blood-brain barrier fully form. Anyhow, since he has an immune deficiency there is a very high chance he would have had an adverse reaction to vaccinations and could have even contracted the disease itself from live-virus vaccines like MMR and Chickenpox. So my decision to not vaccinate him has also saved him from some very nasty potential illnesses. Whew. I can't tell you how glad I am that I decided to nurse him and not vaccinate yet. I feel like we just dodged 2 bullets! I didn't know at the time but those decisions are what has kept him as healthy as he has been. We could have been dealing with a very sick child all this time had I made different decisions.

So I am going to the Immunologist to talk about long term care for his IgA deficiency and also am taking him to an endocrinologist (per the recommendation of the gastroenterologist) to get him tested for a possible HGH (human growth hormone) deficiency so we can rule that out or deal with it, as the case may be. Some people have multiple issues, i.e. Celiac AND HGH deficiency so it's important we test everything so we can treat and/or rule out what the issues are.

This is all very new territory for me, all my children have been exceptionally healthy and rarely even go to the doctor so all these specialists and testing is a bit overwhelming and stressful. I'm just so, so grateful that we are catching it early, while I am still nursing and am able to keep him healthy and from suffering from the recurring illness and infection most people with this disorder deal with. I also feel positive about the results we are already seeing with the gluten free diet and am glad we are catching it early enough that it will not have a long-term impact on his growth. In addition to the weight gain, I am also seeing positive changes in his temperament and behavior so I'm very confident that we are doing the right thing with this gluten-free diet.

So I think that is everything....for now we are just taking it one day at a time and praying that the future brings positive growth and healing. I think given the conditions he has, we have been very lucky and he is doing extremely well.