XLA signs

[Guest guest]

Hi There,

Unfortunately I don't read this sight every day to keep up with everyone.

Life just gets too busy. Someone asked a few days ago what signs the doctor at

National Jewish looked for when diagnosing 's XLA. (XLA as most of you

know is genetic. Since was adopted we had no clue. It is also a PID

that he will never outgrow.) The first fairly obvious sign is that he has no

tonsils or lymph nodes. He actually asked if he'd had his tonsils removed or if

any doctor had every commented about the fact there were none there. I actually

kind of liked my pediatrician until then. This had never been mentioned to me

before. Of course I felt pretty stupid not knowing something as basic as that.

('s medical chart was huge by then as I'm sure all of your kiddos are).

He noticed several pneumonias, a couple of sets of ear tubes & 54 doctor visits

in the previous 2 years. He then ordered blood work. 's personality and

energy level has changed so dramatically since IVIG. It's been a miracle for

him and for us!

I've actually tried to contact bio mom through social services to let her

know she is a carrier but I've had no luck. She was only 15 when was

born so I'm rather certain she probably has more kiddos by now. I just pray

that they are healthy.

Janet, mom to , age 8 XLA (also mom to 5 others)