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Vaccinations and ITP

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15 years 5 months ago #3430 by PaisleyRain
Vaccinations and ITP was created by PaisleyRain
Paisley had her first bout with ITP and was diagnosed with Evans Syndrome when she was 19 months old. Only a month after her 18mo vaccinations. She is a bleeder and was refractory to steroids and IVIG. She had a round of Rituximab and that brought her counts up for about 8 months before she dropped back down. Amazingly IVIG then worked for her and she got infusions every 4-6wks for a year. She has had no treatments and normal counts for almost a year.
Two months ago we were referred to see an Immunologist due to her always being sick. She was diagnosed with IgA and IgG Sub2 deficiencies. This Dr needed to test some things so he vaccinated her with DTAP, Pneumovax (Prevnar 23), and HiB. She had normal platelet counts at that time. Within 4 days I noticed her "circle" bruises all over her legs. Her platelet count had dropped to 70k. She was on steroids for 5 days for an infection and sure enough when they were stopped her count dropped to 18k in 2 days. Her Hemo put her back on steroids for 5 more weeks and luckily they returned to normal (and my little girl blew up!).

I had asked the Hemo about what to do with more vaccines as she is due for the MMR before Kindergarten. They said no more vacs, given that she has dropped like this 2 times after previous ones. I am happy with that decision.
On another note the Immunologist that was testing her pre-vac titers to post-vac titers... most people are to have a 2-4 fold increase in antibodies. Paisley's titers all DROPPED drastically in each area he tested. The Dr has never heard of this happening and he has no idea what it means, so I am waiting to hear what he finds out. My child is a rare one. :p
Just thought I would share our experience with the vaccinations. Our pediatrician does not think there is any relation to vacs and platelet drops, but I am sure glad our Hemo agrees and thinks so! ;)
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15 years 5 months ago #3461 by dots
Replied by dots on topic Re:Vaccinations and ITP
My son's count always tanks when he's vaccinated. He got a flu shot five winters ago, and afterward his count not only dropped, but the IVIG only worked for three weeks at a time and it didn't bring his count up as high as usual. This lasted for a year. The only vaccinations he's had since then are H1N1 (nasal version since he's now needle-phobic) and the MMR booster he'd missed previously, and he only got that one (a few months ago) because there was a measles outbreak in Brooklyn, where we live. He still hasn't gotten the chicken pox vaccine. He's had all the other childhood vaccinations, since he was diagnosed at 27 months and most of them are given before then.

I absolutely agree with you that vaccines can bring down platelet counts, especially live attenuated virus vaccines.
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15 years 5 months ago #3468 by jsmjboertlein
Replied by jsmjboertlein on topic Re:Vaccinations and ITP
Jonathan's hem told us not to get any seasonal vaccines because they will drop his count. Funny how different doctors have different answers. he's due for some boosters when he turns 5 and I'm terrified. He too is a needle phobe, but I'm more concerned about what's going to happen to him when he gets them. I am home schooling him, so maybe we will avoid them for a while, but i really hate to do that. Hopefull St. Jude will help us know what to do.
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15 years 5 months ago #3504 by jpoisson13
Replied by jpoisson13 on topic Re: Vaccinations and ITP
My hemo said Cassie could get vaxes if her counts were over 75k. She had the flu shot (was somewhere in the 100ks) and 4 days later she had some blood in her nose (not a full on nosebleed) and her count dropped to 90k - her lowest in about 10 months.

I got her titers tested, and only vaxed her for things she was not protected against. I think our hemo screwed up - he said if she tested for one component of the vaccine, she would be immune to all. So she was tested for an R of the MMR. But I found a study that said that of pregnant women who tested immune to ruebella, only 80% tested immune to measles. So she'll probably get that done in Dec.

I certainly would NOT get the MMR. ITP is a known side effect, occuring in 1:23,000 shots. However, it is almost always the 'acute' version, and studies have not shown that kid who is a recovered ITPer is more likely to be that one.

My ped was very pi**y when I chose not to get Cassie all her vaccines, despite the fact that I had her titers run.
My hemo was on board with whatever I wanted to do.
Good luck.
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