Sunday, January 22, 2017

fireworks and sunshine

We met with Rainbow's new(ish) immunologist a few weeks ago. I've been processing the news we got since then (it's not bad).

Rainbow is immune deficient, specifically over the past roughly three years his immunogobulin (antibody) levels have steadily declined. Immunoglobulins are sort of like your soldiers. When you hear about your immune system having a memory these are a large part of that, they do A LOT of important things. You can find some info about immunoglobulins here or here in case you'd like to learn more.

A year ago the three immunogobulins we monitor IgG, IgM, and IgA all declined below normal ranges (A & M were really really low). As a result we switched from prophylactic antibiotics to manage his deficiency to IgG infusions. Thus, while we do monitor his IgG levels they aren't really telling us anything about his native immunity. His IgM and IgA might give us a little bit of insight, however.

Fast forward to two weeks ago.

For the first time in a year his IgM and IgA have both inched up above the lowest "normal" cut off (by about a millimeter). This could be pointing to something positive. The thing is these numbers fluctuate like crazy and if we just caught him on an upswing and they are normally low this doesn't help him. Continue to monitor...

Also, our immuno points out: Just because they are present doesn't mean they are functional.


We hadn't even thought to confront that possibility... ugh.

But, what I thought was a really scary indication that his immune system (including his supplemented IgGs) isn't functioning well turns out to be the opposite.

Lately every three weeks or so little bit has woken in the middle of the night with a fever (102ish). We fight it and have terror stomach aches all night. Each time (except for the most recent when he had very obvious symptoms) he wakes the next morning with absolutely no symptoms and no signs of what went on the night before.

My fear was that his body was only intermittently detecting some pathogen then sort of "losing" it because one of the primary functions of Igs is to mark pathogens for destruction. Turns out his immunologist thinks this is actually a sign that Rainbow is picking something up then his (+ his supplemented Igs) system is kicking its ass. Wait, what? Really? This is one of the big things I've been processing. I really like the new immuno and he knows his stuff (bonus points because he has a PhD ;)) but this is still something I'm working to accept.

So, the take home from our most recent visit is: Dr is cautiously optimistic and wants to allow Rainbow to "grow out of" his current IgG supplement. Typically the dose is titrated up as a child gains weight. By allowing him to grow without titrating up we will get a slow and cautious clue as to whether or not he is producing Igs on his own. Dr also wants to vaccinate Rainbow against the specific pathogen that killed his brother and see if his body mounts a specific defense (this will again be a vague hint because of his supplemented IgGs). Dr cautions that there are roughly 485028496 things that could go wrong with the immune system and anytime Rainbow gets a fever he has to be seen by a doctor, every time. I'm down with that and now I have a mandate. So, slow and steady, keep testing, keep watching, and keep hoping.

Ok, finally to the big news... the thing I'm constantly turning over and over and over in my head.

Rainbow's immunologist thinks him starting Tuesday/Thursday school next year is a good idea. He's not pushy about it and is completely on board with us never putting Rainbow in school if that's what determine is best for him but... a good idea.

I'm a part of a few support groups for parents of kids with immunedeficiencies and the most common comment/complaint I see is: my kid is always sick/my kid was in the hospital again. These are statements from parents whose zebras are in school.

We've really never even considered him being in a group childcare situation because daycare is a petridish for every single childhood illness (one of my twitter acquaintances refers to it as "daycare pestilence). I used to be all about the "it makes their immune systems stronger." Then my child died of an infection and my mind changed to oh hell no!

But here's the thing. Rainbow is one of the most social human beings I've ever met. He aches for friends. You'd think, because he's been so guarded his whole life, that he would be introverted but he's not. He is fireworks and sunshine. He loves people.

He has spent so much of his life with adults I feel like we are keeping something beautiful from him. Children are magic. He deserves that magic.

So, we have a choice to make. A choice that keeps me awake at night with longing and with fear. What is best for him?

Hubby isn't even in a place where he can talk about it yet. If he doesn't get there by pre-school sign up time it will be a moo point (friends reference). If we aren't both ready to consider it then it doesn't get considered. So we will have to see...

Until next time...

No comments:

Post a Comment