New To Group - Subcutaneous IVIG or SCIG

[Guest guest]

Hello and thanks for approving me to the group. I’m glad to find a

resource for my son and husband. My husband 35yo, I believe would be

classified as Common Variable Immune Deficient. He has IGA deficiency,

1 IGG Subclass deficiency, and doesn’t respond to most vaccinations. We

waited to have children because of his health issues; while he learned

to live with it, he knew he could pass it on. We have 2 children and

the IGA deficiency was passed on to our son 5yo. My son also has 2 IGG

subclass deficiencies and doesn’t respond to his vaccinations. So far

our daughter 3yo is fine. Both kids see an Allergy Immunologist at

Hershey Medical Center in Pennsylvania.

DS 5yo had a pretty good run of things, first only the IGA def

registered. When he was 2 ½ and they tested for the subclasses he had 1

IGG subclass def. His titers showed borderline response. 3 winters ago

he was on antibiotics with sinus and ear infections all the time. Then

the following spring he had his tonsils and adenoids out and tubes in

his ears. Then following he went on bactrium antibiotic therapy and has

been since. He developed Asthma too takes inhalers. Unfortunately, the

bactrium didn’t hold out and here we were on antibiotics constantly

again this winter. After being on 10 doses of antibiotics and 2 serious

asthma issues since September the Immunologist said it’s time for IVIG.

I was heartbroken to say the least. My husband has been getting IVIG

for the last 3 winters, but we didn’t think we’d be facing it for my son

at 5.

We did our first IVIG the Friday before Christmas that lasted 6 ½ hours.

Since it went well he switched over to Sub Q IG; he’s had 2. We are

having some issues with it as my son is skinny. I’ve got lots of

questions on it. Does anyone here use it for young small children?

What sites do you use? Do you find it goes into muscle? We are using

an inserter pen so we don’t have to insert our selves, but find it’s

hard to take off, tape and pull out the needle with the soft serters.

He’s getting 13 ml every Friday with a 6mm soft serter needle set over

an hour. We’ve done the top to the outside of the thigh per the nurse

who is training us.

Did anyone doing Sub Q find that their sinus issues cleared up? Have

you stayed on the prophylactic antibiotic too?

Lots of questions, I guess we just lived with what my husband had and

dealt with it, we were happy when our son didn’t have too many

issues…..now I’m entering a whole new world.

Thanks in advance,

Michele K W/2 In PA