Prevnar & IVIG

[Guest guest]

Hi ,

I just wanted to say sorry about your day with the IVIG. It sounds like

they're going to have to make some adjustments to keep Blake safe. I have

had anaphylaxis many times, and I have a very healthy respect for it. Hives

anywhere on the head are a dangerous sign--not to mention the trouble

breathing. I hope there is a safer way of giving him the IVIG.

Hang in there.

Sandi, 's Mom

[Guest guest]

Hi All!

Yesterday was a very FUN filled day for Blake and myself. Blake went

to get his IVIG. It lasted a whooping 12 hrs. They had to give him

whatever was available in the Pharmacy, due to there suddenly being a

shortage of IVIG. He received POLYGAM 10%. There was no picnic

taking place for us. Blake had difficulty breathing(even more

pronounced than what we are experiencing with the sinus infection)

and bad headaches. They had to give him Benadryl 3 different times(4

hrs. apart). He had a problem with hives. What bothered them was the

fact that the hives occurred around his mouth,head and neck area. As

well as the rest of his body. He usually only gets them on his trunck

and limbs.

I wanted to mention what we were told about the Prevnar Vaccine with

Blake. Blake has to see the Specialist at the Cancer and Blood

Disorder Center for Children in Columbia SC. I asked about Blake

getting the Pneumacoccal Vaccine as well as the Prevnar Vaccine.

When given they are supposed to be given 1 month apart.

I was worried because I know that Blake has a rare blood disorder.

His liver does NOT produce heparin. He makes blood clots instead of

free flowing blood. Therefore we have to give him Lovenox(Low

molecular heparine)shots 2 times a day. The info for the shots said

to check with the Dr. before giving to people with blood related

problems.

Well, this Dr. had a fit because We were going to give Blake these

shots. I told him that the Infectious Disease Dr. ordered them. He,

(Hemotologist/Oncologist) then called the ID Dr. while I was present.

He told the ID that it was not wise to give Blake either shot. The

reason is because he recieves IVIG. He told him that because the

IVIG Blake is getting are NOT his own antibodies. Therefore it makes

the medicines in the shots null. What he expalined is that The IVIG

is giving Blake antibodies. That Blake's own antibodes were not

working therefore the meds. do not attach themselves to Blake's

antibodies instead they attach to the antibodies from the IVIG. When

the child goes to the bathroom he loses the IgG through the poop,

thus the vaccines are exited this way. Sooooo, he said that as long

Blake receives IVIG he was not to receive any vaccines. All of this

sounds wierd to me. But they are the experts not me. When I asked

the Immunologist about this he agreed with the Oncologist. Now it is

on the outside of Blake's chat that he is to receive NO vaccines

unless the Oncologist or Immunologist is contacted.

Thanks for listening. (mom to Blake)

[Guest guest]

- the Hem/Oc is pretty much right on the money. Usually children with

IVIG therapy only get Prevnar/pneumovax

when they're IVIG is being held for 3 months and the doctors want to test

whether or not they can mount antibodies to

this vaccination. IVIG provides antibodies from thousands of plasma donors and

so patients are covered pretty well.

Macey's varicella (chicken pox) level after 2 yrs on IVIG was in the 300's.

Normal is anything over 15. And she had

never gotten the vaccination so we know it was from the IVIG. While on IVIG she

never received vaccinations and had an

exemption filed with the school system because the IVIG covered her. Live

vaccinations can actually sometimes harm a

PID patient. Just think of it as a holiday from at least some IM shots in his

life.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net