[tri-med] Re: trisomy 13

----- Original Message ----- 
From: "Carolyn Cockburn"
> Karen, can you expand on this please as I've never come across any info
> related to the chicken pox virus and T18?

Its not official per sa, just an anedotal thing, that has some validity in 
the science. To make it official there would need to be more research and 
given the number of surviving children with T-18 and then the incidence of 
chicken pox, especially with a vaccine now available, its not likely to 
happen soon.

Anyway to expand - a number of children with T-18 who have contracted 
varicella (chicken pox) have had it go very quickly to encephalitis (while 
it seems to be more than the average population we dont know for sure and 
equally many don't so please dont panic). Because of their other medical 
problems encaphilitis in our kids is usually fatal.

This is probably related (again not proven) to the fact that our kids seem 
to have a "different" blood brain barrier. In simplified terms there is 
"barrier" between the brain and the rest of the body that prevents a lot of 
things getting to the brain, drugs are what we usually relate it to, but it 
also makes it more difficult for a lot of viruses to get into the brain. In 
our kids it seems to be "different", as seen by their unusual reactions to 
fairly common drugs at times. By no means is this universal, but its 
something that has been "noted".

I have also noted that for some of our kids the vaccine's don't "take". Alex 
is one. I am absolutely paranoid about chicken pox, always have been because 
unfortunately three of the families that I came in contact with early on all 
had children who died of complications related to chicken pox. I have seen 
kids with encephalitis and I would not wish that on anyone!!! My own 
daughter had meningitis at 10 months from measles and that was bad enough. 
And I got chicken pox (severely) as an adult (well 17) - no way would I wish 
chicken pox on anyone. Australia also did not use the varicella vaccine for 
many years, I simply could not get it.

As soon as it came out Alex was vaccinated and I mean as soon as it came 
out - it was approved on the Tuesday and he was vaccinated on the Wednesday 
morning. Some time later we had a horrific epidemic of chicken pox at school 
and I was still scared because Alex is also IgA deficient, so Alex's doctor 
suggested that we run titres - a check to see how good his immunity was to 
all his vaccines. Everyone was surprised because very few of his vaccines 
have "taken". He has had ALL of his vaccines, including whooping cough which 
he had an adverse reaction to as a baby, but despite this he has almost no 
immunity, especially to whooping cough and chicken pox. He had some immunity 
to diptheria etc but not as high as you would expect.

Checking immunisations and checking IgA levels are not something that you 
would normally do. Alex's IgA levels were checked by his immunologist when 
he was little and suffering from repeated ear infections and also because it 
was at the time a noted problem with chromosome 18 disorders. The IgA 
deficiency has nothing to do with ear infections, usually its related to 
chest infections. Fortunately Alex hasnt, however because we know that he is 
susceptible we make extra sure that he is kept away from people who have 
colds, especially if the colds are due to micro-organisms. Thats also why I 
get frustrated with using gloves, hand washing is much better than using 
gloves. Its also important to know about the IgA for the master if he ever 
needs a transfusion or other blood products.

Again you would not normally check titre levels unless an immunised child 
developed the disease they had been immunised against, but because Alex was 
tested and we got the unexpected findings I have paid attention and found 
over the years a few kids that have had a similar problem.

With the vaccines there was some concern that the whooping cough vaccine 
(pertussis) could cause seizure disorders in our kids (18, 13 and others) 
because of pre-exisiting neurological problems. Again this hasn't been 
proven, in fact most of our kids have no reaction to their vaccines. However 
some kids, like Alex have an adverse reaction to pertussis - this however 
also happens in the regular population. They spike a very high temperature 
after the vaccination which can cause a febrile convulsion. This reaction 
has become less common in everyone since they started using the acellular 
pertusis vaccine. Alex's reaction was to the regular pertussis vaccine - he 
had absolutely no reaction to the acellular vaccine, but he was also 5 years 
old when he got it.

So while there is no hard and fast rule about chicken pox, or even vaccines, 
these are things to be cautious about. I personally like the suggestion that 
for our kids we do the vaccinations based on weight not age, but once the 
vaccination process is started its important to keep it on the time 
schedule.

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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