Tuesday, August 18, 2009

IS and Vaccines

Well, now that we are in the clear and Kylie's immune system is well back on track, we have to think about her being vaccinated, or not, or somewhere in between. I've read stories about kids with IS and how everything unfolded shortly after being vaccinated. In others, seizures had come and gone, only to have them reappear shortly after vaccinations. Of course this just frightens us, as we do not want to make the decision to get her back on track with her vaccinations and then find out our decision brought back her seizures... and robbing our baby of the life she could have.

It seems as though the DTaP is the one that has the most negative effects, and we have already decided to discontinue that one (she's already had two boosters), but what about the rest of them? It seems like so many have the potential, yet rare side effect of seizures, but isn't IS rare too?! Not vaccinating could cause her to get an illness that could have otherwise been prevented. So what does a parent do?

So this post is 1) to voice the decision we are currently faced with and 2) to get the input from IS families that have gone through this and how they made the decision.

So IS families only please, let us know what you have done, and how you reached your decision. We aren't looking for someone to make the decision for us, just wondering how you were able to weed through everything and make a decision.

Just over 2 wks old


baby trevor's mommy said...

This is such a tuffy. I was spared having to make the decision...because after 8 months...Trevy's IS relapsed. I know you know that already...but just to give perspective to any readers you have that don't understand how loooong this IS journey really is. ;)

I've heard it said by our Dr. Endocrynologist that it takes a solid 6-8 months for the effects of ACTH to fully dissipate. So I would definately wait at least that long.

Also...have you considered having your pedi write a lab slip for a titer check? It's a little blood draw that they can check to see if she's still carrying the benefits from previous vaccinations. Maybe she's already in a good place...and it would spare you from having to make the decision too!

Last thought...if you do move forward with vaccinations I would recommend trying to find a doctor/clinic that will seperate them out for you. MMR for instance...can be seperated and given one by one. Rather than lumped.

I am NOT anti vaccines. I lived in Africa...and saw children afflicted or die from diseases that could be prevented with a shot. However...when you have a child with a complicated diagnosis I don't think it should be rushed into. Or forced on the parents. Especially when the drs/scientists really can't tell us IF it would cause a relapse. And especially since many of the vaccines warn that it may induce seizures.

I know it's a heavy decision. Especially when you have a seizure freebie! I think that makes it weigh even more!

I know you'll do your research. And don't move forward until you're ready!



nchlsgdk said...

Thomas' 3rd DTaP (6 months of age) was given on 8/5/98; he started having spasms on 10/28/98-over 2 months later, so we felt there was no correlation between the two. He recieved the 3rd Hepatitis B on 11/4/98-the day after he was discharged from the hospital post-video EEG. Thomas also had a normal MRI. His spasms stopped with ACTH-he had the spasms for a little over 6 weeks total. We continued immunizations on schedule, with the exception of leaving out the pertussis component of the DTaP for the 15 month dose, and the 4 year booster. He began having seizures (epilepic spasms) again last November after almost 10 years seizure free. He's still uncontrolled. He actually got 2 immunizations today-the menningococcal and a Td. Our state just changed the requirements for 7th grade to include a Tdap instead of Td; had his seizures not returned, I probably would have had him get the Tdap, however, given the fact that he is not controlled at this point, we opted to still keep the pertussis out. His first immunizations post ACTH were given about 4 months after finishing ACTH.

MJStump said...

Thank you both for your responses about he vaccines.

We had Kylie's 9 months apptmt last week, and we are holding off on her vaccines right now...just don't feel comfortable just yet. Our pediatrician is great and is letting us lead the way, but is also giving his input too.

At the moment we are willing to continue vaccines, just not the pertussis, and want to take it slow...just don't know when we are ready to start back up again. I know we will just know when we are ready and when things feel right for us. Til then, we just keep on breathing :)

Thanks again ladies :)

Sophie's Story by Elaine said...

This is a tough decision. We decided not to give Sophie any more DTaP shots but to proceed further with the rest. She got only one shot per visit and there was at least a month between shots. It had no effect on her seizures. We delayed the MMR and chicken pox. But she is now completely up to date except for DTaP. Luckily, we did all of this before she was seizure free. It is a whole new ballpark now that she is seizure free. I am not sure how we will proceed. But we have some time to think about it.


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