primary immune deficiency

Jennifer - posted on 04/21/2012 ( 3 moms have responded )

6

6

0

2.5

consistent ear infections

second set of tubes

recurrent psuenomonas

constant fevers

IgM and IgG and IgA show problems

titers show several immunizations never occurred, but did.

Any advice? anyone have this going on?

Ive got other kids at home and going to school, bringing home germs. What else can we do? Does it get easier or better?

Jenn

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

3 Comments

View replies by

Kimberly - posted on 11/07/2012

1

0

0

My 4 children all have some form of pid in the igg, a, m antibodies, my three oldest 10, 8, 6yrs of age all had to had pneumococcol vaccine given again bces it was like they never received them. Their titers were non exsistant. Now after having another round of vaccines they are up within normal range for now. They are still low Igg i give one of my babies hizentra infusions every week since 10 months old shes now going on 4, and just found out my 6 yr old has the exact same thing. Please feel free to contact me by email because it seems we are going thru the exact same thing!!! Keep strong its a long road. Kayzee1313@gmail.com ( forgot email)

Veronica - posted on 10/23/2012

17

1

2

Gets easier as they grow and learn how to take emdication, how to take care of themselves, what to eat what to wear... we take Vit E almost all the time, soya milk etc, very attentive at food he eats. He know he should not jump or run too much, and always has extra clothes in case it gets wondy or if it rains. Always has his Salbutamol with him and 6-8 month a year taking Flixotide. Family is very supportive - really helps.

Iridescent - posted on 04/21/2012

4,519

272

1080

It's familiar. The IgG and IgM, if they're just low, might be secondary to IgA being too low and having gut reactions to foods --> malabsorption --> low antibodies in other areas besides the prime. When we went to elemental formula and finally he started getting enough of it to maintain nutrition at least somewhat, the rest of the antibodies picked up although IgA won't.

Lost immunizations happen with this. It's up to you whether it's worth redoing or not. I think no for us, and we avoid most live vaccines, but do get the flu shot because the flu mist exposure can cause illness with immunocompromised people even after 30 days of someone getting it (ex: a classmate can make your child sick that much later).

Keep rechecking things. GI is our most important resource, along with Immunology. Second to that is Pulmonology then asthma and allergy dr. We're also working with neurology and genetics now to try to find some answers.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms