Re: Sub Q question - New one

[Guest guest]

I'm sure this was discussed already, and i've been going back through postings,

but if someone could tell me breifly, what is Sub Q. My son is 8 now with

CVID and has been getting IVIG for 3 years. Is this new? Is it a trial? Do

you do it yourself? Do you need a port? Is it a needle injection? Is it as

effective at IVIG?

I don't mean to sound stupid, but everyone seems to be talking about it and i

have no idea what it is.

Also, to anyone with a CVID diagnosis, have you ever had a sibling develop it as

well. My daughter is 5 and was always healthy. Seems to be getting sick a

awful lot. (Strep 3 times, antibiotics 5 times in 2 months) Seems to have

quieted down now, but I can't help but wonder??? and worry.

Thanks

Kim (Mom to (8) - CVID, Nick (10) and (5)

Re: Sub Q question

> le,

>

> My daughter uses Baygam for subq infusions 2 times per week.

>

> Rose

> Mom to Stefanie-scids, epilepsy, asthma

>

>

>

[Guest guest]

The doctor wants to test Ashton's little sister to see if she has CVID also.

She had more of the symptoms when she was an infant. She seems healthier than

Ash now. She can get rid of her infections with a round of antibiotics where

it takes Ashton a few rounds, if it goes away then. The pediatrician is really

pushing the testing. I don't know what the immunologist will say. She too has

problems with allergies and asthma.

L

Mom to Ashton CVID, Asthma, Dyslexia & Marina Asthma both lactose

intolerant and numerous allergies

[Guest guest]

Kim,

I am sure that someone else will have a better description of subQ, we are new

to the CVID dx and have only had one infusion and it was subQ. I don't think

that subQ is new but it is newer to the US than in Europe. Sub Q stands for

subcutenous which means under the skin. So there is no IV and no port. It is a

needle, maybe two depending on how big the child or adult is, it goes into the

skin at a fatty part of the body, thigh or stomach. gets his in his

thigh, they will switch thighs every other week. Since you cannot put as much

under the skin as you can into a vein the subQ has to be done more frequently

than IVIG thru a vein. I am sure that it is just effective or they wouldn't be

doing it, and it is reported to have less side effects.

As far as sibling.. I don't have an answer for that one yet either. The rest of

the family is to be tested for it since I have Graves Disease, sinus problems

and a constant sore throat. My husband has sinus problems and our middle child

has recurrent ear and throat infections.

I hope that helps some.

Amy mom to

19 months, CVID, GERD, MSPI and asthma

Re: Sub Q question

> le,

>

> My daughter uses Baygam for subq infusions 2 times per week.

>

> Rose

> Mom to Stefanie-scids, epilepsy, asthma

>

>

>

[Guest guest]

,

Last year 's sister was coming down with infections that were hard to beat.

The were mild compared to what went through before he was diagnosed, but

nontheless she was afraid that she had what had/has. A teacher over heard

her tell a freind that she thought she had what her brother had and that she was

going to die. She was 9 at the time.

The next visit to the PED, shared how she was worried she had what

had. Our Ped told her that she did not have the same symptoms her brother had

(she did not) but that if she wanted to make sure he would order the blood work.

We then reminded her that meant a needle, she thought long and hard and than

said she wanted it. You know it hard to be weighing heavy onher to say yes to a

neddle

The PED and I agreed privatley that it was worth it for her peace of mind so he

ordered the test.

When the results came in she did not have CVID, she was so relieved and is

rarley sick!

So, there is no harm in testing for us it put a little girls mind at ease.

le

IGIV 7 years now every three week looking into sub q

[Guest guest]

,

Last year 's sister was coming down with infections that were hard to beat.

The were mild compared to what went through before he was diagnosed, but

nontheless she was afraid that she had what had/has. A teacher over heard

her tell a freind that she thought she had what her brother had and that she was

going to die. She was 9 at the time.

The next visit to the PED, shared how she was worried she had what

had. Our Ped told her that she did not have the same symptoms her brother had

(she did not) but that if she wanted to make sure he would order the blood work.

We then reminded her that meant a needle, she thought long and hard and than

said she wanted it. You know it hard to be weighing heavy onher to say yes to a

neddle

The PED and I agreed privatley that it was worth it for her peace of mind so he

ordered the test.

When the results came in she did not have CVID, she was so relieved and is

rarley sick!

So, there is no harm in testing for us it put a little girls mind at ease.

le

IGIV 7 years now every three week looking into sub q