My son's immuno-deficieny & our journey in more detail

This last week I was moved to share with my private women’s health and wellness community on FB more details about the journey I’ve been on over my son’s immune-deficiency (and now I want to share it with you). My hope is that it will help somebody else out there who is dealing with a long term chronic issue to NOT. GIVE. UP.

It's been a long haul. Many of you know this is a newer thing we've been dealing with. Symptoms only started popping up about 1-2 years ago. He was getting sick more than normal, and then it would last a lot longer than normal. Slowly it started to get worse: mostly his body is hit hard by terrible joint pain, chills, and horrible sore throats--always viral (sometimes it's something else but it seems to manifest in him this way most of the time). We weren't sure why. I took him to his pediatrician and to our lovely naturopath (shout out to Christa Hinchcliffe) and we were all a bit baffled. Often the poor boy was prodded and poked. I can't tell you how many times something was shoved down his throat or up his nose and down snaking into his throat. I had nutritional testing done, and then did a specific genetic test to see if he had the MTHFR variant. 

Turns out he doesn't, but he does a variant that effects dopamine in his body--very interesting info and we can do something about this. However, around 50% of the population does have MTHFR so I encourage people to learn about it. There's so much you can do to help yourself it's amazing. Epigenetics is absolutely fascinating and important because we CAN help ourselves-manage it. 

Finally, after so much searching and not getting answers, Dr. Christa Hinchcliffe and I decided it was time to go to Children's Immunology. Once we did that, a simple blood test immediately showed this immuno-deficiency. It's called Selective IgA Deficiency. 1 in 500 people have this (mostly caucasians) so it's very common. But, only 30% of these people get symptoms. That's our situation.

The thing is, this can be inherited or it can be spontaneous. We don't know which he has, but I'm betting on it being spontaneous. This happens due to something underlying--could be an infection, or auto-immune, or something else, like toxic mold, for instance. You can BET I haven't rested and I'm still carving away at this. 

So here's where we are now:

1. I've been lucky enough to work with specialists and hire two functional MD's (one who specializes in Genetics and one who's helping me with IgA - adding nutritional supplementation, and getting more tests done-specifically auto-immune testing). I continue working with our naturopath who has been a wonderful resource as well and helping me figure out what testing we can do to keep digging!

(Side note, the immunologist didn't mention anything about supplementation, hidden ANYthing and didn't give us much hope. His prescription was to wash hands a lot and neti pot--while this is happening, I'm doing all of the above as well.)

2. We're doing a trial run in a sunny, warm climate to see if being outside more helps him feel better and catch less bugs (the theory here is that we're not enclosed all fall/winter where these bugs get trapped so he may catch less).  If you missed my first post about other things we’ve been doing, be sure to catch up here.

In truth, Roan's sick right now. He caught something last week. We made it only a couple of weeks here before he got a virus. But we're still hopeful and he's quite happy overall. He loves the weather, likes his new school, and he's feeling optimistic. So we'll stay and stick this through to June and keep strengthening him with all mentioned above.

No matter what it's a good reset for his system. And, it's certainly a resilience builder. New community, new middle school, finding new friends. Wow, right? He amazes me, this boy. He's my hero--his courage is immense. 

And finally:
I hope this helps somebody here. I know that sharing his immune deficiency story has already helped one person I know to figure out why she's had such horrible health problems for almost 15 years now. Her doctors hadn't thought to do this immune test and she recently had it done and sure enough, this is a big part of her health issue. And now she can begin to heal. To walk down the right path. 

So here's to sharing and being open and helping each other.