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So conflicted, I don't even know which board to post in!

post #1 of 6
Thread Starter 

And it is not helped by the fact that we moved country as the advice changes. 

 

My little boy has a rare, autoimmune brain condition caused by a virus he had as a newborn (as a newborn, before vaccinated). It has left him relapsing with several bouts of meningitis and encephalitis and he was a in a coma and vegetative state for weeks, had to re-learn everything he knew when he was four. He now is eight and healthy, but the advice the doctors give about vaccinations is so conflicting! 

 

German pediatrician said: do them, but inpatient and spaced out. German neuro-ped said: wait until he has had two years of no neurological events and only do Measles and Pertussis and Chickenpox as the other illnesses aren't around at the moment. Hope and pray that your child will not get infected by anyone. British pediatrician said: do them all on schedule, it is fine, as the illness is worse than the risks of relapse due to vaccination. But can't get CP vaccine in the UK, which would be the most important one for him? British GP said: Dunno. And shrugged.

 

What do I DO? 

post #2 of 6
Well, I'm not a doctor, so I can't really tell you which doctor is right or wrong. But I don't think there's a right or wrong answer to how much risk you feel comfortable taking.

I think if I were a mother in your situation, the advice of the German pediatrician would sound the most convincing to me. If my child had autoimmune issues, I'd want to vaccinate slowly in order to test for reactions.

The German neurologist may have a fair point about just doing vaccines for the endemic diseases. Then, if you travel somewhere and need different vaccines, you could revisit the issue then. The neurologist may be the best qualified to speak on the topic, if she/he knows the most about your child's rare condition.

Personally, I'm not the type to follow the British doctor's advice, as it seems a little reckless, given the child's unique medical history. But again, it's very personal. We're all different in which risks and benefits we feel right about accepting.

I don't know if you'll be able to make your decision based on science because none of these doctors can agree on the science! So you may have to use your intuition instead.

Are you living in Britain now? I know that British children aren't routinely vaccinated for chicken pox, but are you saying the vaccine isn't even available there? It was originally invented for high-risk, immuno-compromised children, so it surprises me that NHS wouldn't have it available at least for your child.

By the way, I'm in the U.S., and speaking from personal experience only, doctors like your German doctors are extremely rare here. Good luck with your decision!
post #3 of 6

Why chickenpox, I mean what is the special danger it poses to your son? Apart from that, I'd trust the neurologist the most. A pediatrician usually knows little about chronically ill kids and such - I have heard them so often just say do them all on schedule while the experts said oh my God noooooo.

As for vaccines, you can get measles only in Europe, rubella too but mumps was discontinued. You could opt for measles only and do MMR later before puberty to ease the burden on your child.

Are you in Britain now? I know little about their health system but if it is like in Germany get a referral to a pediatric neurologist to further discuss the plan of action. Someone who has experience with your son's condition. And with his history, I'd strongly suggest titer testing instead of following a schedule - e.g. run measles titers before vaccinating again. Most people have good titers after one dose.

A word about the chickenpox vax: it didn't work for me. I have received it over and over and nada. I never had CP as a kid.

post #4 of 6
Thread Starter 

Chickenpox especially, because the UK doesn't vaccinate for it, so it is more prevalent. My son is not immunocompromised, but he does have oligoclonal bands and a blood-brain-barrier instability, which makes his brain more vulnerable to any virus. 

 

So basically, he CAN and DOES fight infections and is getting better and better with each one, but the ones that can cause encephalitis, well, we have to be more careful with them.,

 

Thanks for the advice, I tend to trust the German neuro-ped most, too, as he was the one who spent hours and hours reviewing his MRIs and EEGs, sending them to specialists all over the world and diagnosed the condition. That, and he is very fond my of my DS and very, very thorough. 

 

Viruses that can cause encephalitis are mumps, measles, rubella, flu, chickenpox,  EBV, CMV and HIV.

 

post #5 of 6

hmmm in that case yes, I'd double check with a British ped neuro, and then might as well go for mmr. But do go for titers... My DS had one mmr and we did titers a couple of months later and they are perfect. We did it because of spending 2 months in Germany and we were going to cities with measles cases.

I hope the chickenpox vaccine will work for your DS. Worst case you can get it in Germany still, but I'm sure if you pay out of pocket the Brits will hand it out too.

As for flu... I don't have a reason to vaccinate for it, but the injected version isn't terribly effective. The mist is more so. But you'll have an infant in the house, the US docs say no issue, but the insert clearly states a shedding risk (2-3%, which is not negligible).


Edited by nia82 - 10/23/13 at 10:05am
post #6 of 6
Thread Starter 

Titers! Headdesk, I hadn't even THOUGHT of them! Will do exactly that, the wee man has no problems with needles anyway. 

 

I have always been one to follow doctor's advice, and that has been the wisest thing to do for my family. So now that they contradict each other, I am offered choices and am, quite frankly, overwhelmed and  a bit disturbed by that fact. I am not the one who studied and practiced this and Dr Google spits out anything, depending on what you type in and which stand you take. 

 

Thanks very much for the help :)

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