Hi from Dale

[Guest guest]

from Dale, Mom to Katy, CVID, age 18

Welcome to Lynne and and any others I've missed.

, I know what you mean about dreading IVIG. I had read just enough

to scare me to death! I was actually afraid that they would put the IV in and

she would just die. Crazy now that I look back on it -- but we were so

stressed over the long procedure of getting her diagnosed and the doctors had

shared only the negative posibilities of IVIG.

What they didn't tell me is that my precious little 13 year old who was so

fatigued she could hardly walk across the room, had excruciating leg pain, had

chronic headaches and chronic bloody diarrhea, had very painful infections in

both ears and a big toe infection -- would start returning to normal. It took

almost a year before we were absolutely sure that she was back in the land of

the living -- but let me tell you a little about her now.

She's still got sinus crud and so they are going to up her dose of IVIG next

month -- hopefully, that will take care of it. She is leaving for college on

August 25th. Her PE last year was cardio kickboxing. She's buff! She very

seldome complains of a headache (no more frequently than most teenaged

girls). She's learned to take care of occasional intestinal upsets by

regulating her diet according to her " tummy's " needs. She's never home --

always out with friends. She's not isolated in ANY WAY!!!! She gets her IVIG

every 28 days with a home health care and she's back to being a normal, moody,

drive-you-up-the walls know-it-all young adult! And I couldn't be

happier!

So, make sure you balance your fears with the awareness of what IVIG does for

these kids.

This is an awesome group of ladies who will help you share knowledge and

become well-educated. But what you can't see are the hundreds of Moms (and

Dads) that this group has helped get diagnosed, start treatment, and then drop

the list -- because their kids got too involved in scouts and gymnastics and

swimming and wrestling, etc. That's why Ursula started it.

Okay, you want to know that negative possibilities:

IVIG is a blood product. Many, many years ago we didn't know about HIV and so

blood products were given to people and it was contaminated. Because of that

the IVIG is so pure it is incredible. But there is a chance that there may be

some unknown virus lurking out there that no one has ever heard of. We think

the IVIG manufacturing process is so pure it can't slip by -- but no one can

give you 100% guarantee. You may also get struck by lightning -- there's

probably a greater chance of that!

If a patient has NO IgA. There is a possibility (not always) that his/her

body has built up antibodies against IgA. That would cause a reaction in the

patient because IVIG contains trace amounts of IgA as well. So, if there's NO

IGA they will try to administer the best possible IVIG that contains the

least. But having no IgA will increase your chances of having a rejection

response and could even lead to anaphalactic reactions that would need to be

treated very QUICKLY in an ER. But if the patient has even a little IgA

there's no danger of that kind of reaction. (That's the reaction I had read

about and was certain that my daughter was going to drop dead -- no one told

me not to worry about it since she has IgA!)

Then, there's all kinds of reaction that are to be expected. Katy feels

flu-like for about 48 hours. But it's less severe if she's got plans for the

evening or a hot date! The reason this is a common reaction is that all those

good antibodies are now attacking whatever infections are in the body.

With those flu-like symptoms are headaches, chills, fevers, body aches, muscle

aches, etc. As Ursula pointed out -- if the patient does that on a regular

basis -- they'll just start pre-medicating with something like Benadryl to

keep it from happening. Katy can't take Benadryl, so we just use Tylenol and

she's fine.

Then there are reactions called aseptic menengitis. No one totally knows what

causes this -- it's a severe neural headache, stiff neck, sensitivity to

light, sound, motion, like the worst migraine imaginable. Katy had that a

couple of times post IVIG and we were told to try changing brands of IVIG --

it worked! She's not done that again.

Most of the other possibilities -- like blood pressure dropping, headahces,

chills, etc. is caused by infusing the IVIG too fast.

Since they've told you it's a two day infusion -- sounds like they plan to

take it really, really slowly. That's good to start out that way -- then

they'll know exactly what the response is going to be. Each time they infuse

-- they'll speed it up a little until they determine what's best for the

patient's body. Everyone is different.

Then there are patients that have the above headaches, muscle aches, rejection

response, etc. so severely that they just can't take IVIG no matter what they

premedicate with. Some of those find relief by a slow infusion method called

subcutenous administration. But those people are very, very rare -- and you

won't know until you've given it a try.

Would I choose to do IVIG all over again -- a 1000 times yes!!!!! It has

given my daughter a normal life. I just wish we could have started it when

she first started getting sick instead of going through 3 years of waiting to

get answers.

I hope that this long-winded explanation has helped some of you with that

decision. If you have ANY QUESTIONS -- throw them out here to the group and

let others chime in.

In His service,

Dale