Re: Re: [Mito} A whine and a GRRR!/Dawn

[Guest guest]

Hi Dawn,

Actually my little one, Asher who is suspected to have mito or a metabolic disorder or a congenital myopathy, doesn't have a primary immunodeficiency (shocking, huh?). I have one and my older son has one, but not Asher. I asked one of the mito gurus about this and he thought that mine and Sam's primary immune deficiencies are not connected with Asher's mito/metabolic/myopathy and that we'd only managed to win the rare disease lottery twice. Kinda stinks, huh? I still wonder if they are connected in our family.... Anyhow, so, yes, we do wait in the waiting room.

Well, I still don't know what the criterion is for a "too short" mic-key button, but my son is much more comfortable now that it's been changed. So, I think my ruling is that it was too short... Regardless, I'm glad he's more comfy now.

Anne R

[Guest guest]

Hi Dawn,

I don't think what you said is dumb at all. My older son has IgA def. and IgG2 subclass deficiency and he gets a lot of sinus infections and strep. As far as I can tell, he has had no mito symptoms at all. No dysautonomia, no muscle weakness, no eye problems, no neurological problems. I'd never heard of mito or myopathies until my 2nd was born. Sam (my first) is treated aggressively with antibiotics when he gets an infection and the functioning of his IgG subclasses is measured every 6 months. Right now, Sam's other IgG subclasses are functioning well and compensating for the deficiencies in IgG2. The docs have discussed intravaneous gammaglobulin but we're hoping we don't have to get to that point. He's been less sick this year than all of his previous years so we're hoping he will be able to keep compensating for the deficiencies.

I am on gammaglobulin but I get it subcutaneously (which is SO much easier for me). I have an IgA deficiency and an antibody deficiency. I don't have a lot of mito symptoms but I do wonder about my level of fatigue. I need a lot of sleep (9+ hours) to feel good and I nap almost every day. I don't know how much of my fatigue is having 2 kids and also exercising (I run or rollerblade every day for about an hour). Also, when I get fatigued, my eyes particularly get tired. I know that, if Asher does have a mitochondrial disorder (hopefully will know soon!), I will be looking closer into my own symptoms, esp. given the fact that my mom has atypical lupus (which I know can be mito and that it's maternally linked).

Wow, that was a long answer. How did they find out about your immune deficiency?

Anne R