Noah is struggling to get over this pink eye infection

His eyes are worse. If they still look bad on Thursday, I’m going to take him back to see Dr. Crosby, but I just wanted to let you know because this is not normal, even for Noah.

(He’s been on eye drops now since the day before he saw Dr. Butte, which is over a week ago now.)

This is definitely a warning, and I feel like it’s time to start Noah on a low dose of IVIg. We will never get the ‘evidence’ in his blood work — which is the same for me — because the problem isn’t abnormal Ig levels…the decision comes out of observation and instinct, and honestly things are getting worse for Noah. I don’t want to wait until Noah is really in the hospital with something really bad.

Plus, it will help with Noah’s weight. He’s severely underweight, and Ivig will help with that too…

(I have a home health nurse who had a patient who did 5 grams every month, just because she swore it helped her. She had a normal immune system, she did 5 grams because she did it gave her more energy. Since IVIg is very expensive, I was thinking 5-10 grams a month, until Noah gains a few pounds, then we can revisit it.)

We’ll talk about it next time, I just wanted to give you the heads up about Noah’s eyes. This is not normal, even for him.

(Maybe because his white cell blood count is so low?)

Thanks again for everything.


(The infection started in one eye, then it moved into the other eye (Dr. Crosby saw it more in the left eye, and she also noted Noah had some drainage at the back of his nose as well. Now Noah’s eyes look even worse. He’s had pink eye so many times over the years. (At least 50 times). Maybe this infection is something resistant, which is why it’s not responding to treatment like they normally do? I’m hoping it’s going to go away soon…)

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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