Re: BehaviorAutumn

December 18, 2002

Opps sorry I didn't sign that post.....LOLOL!!!! Okay I'm a little

preoccupied getting ready for Christmas!!!

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

-- Behavior

HI Barbie,

I am a former member of this group who recently rejoined. I just read your

email with the information from Rainbow Babies. I know Tonya Palermo very

well, my son Mark saw her years ago and we have remained in touch on and off

over the years. Tonya has done a lot of research with PID children and the

affects of chronic illness. There was a paper published by Rainbow Babies I

think in 1999, but I am not certain on the year. It was done by the head of

psychology at RB & C. The physcian's name is Dr. Drohter (although, I think I

have the spelling wrong on that). Dr. Drohter saw my son Mark in 1998

during the time of his research. The paper compared children with PID's,

asthma, diabetes and I think epilepsy and the effects of living with a

chronic illness. The results showed that children with PID's had a much

poorer quality of life with a greater depression level. If I can find the

paper (I have a copy here) I will let you know.

Another interesting paper was published by Sara Lebien (she wrote a book for

children for the IDF " Our Immune System " which I am sure you have heard of).

Sara's other area of work primarily talks about the stages of life in a

male with PID and how it affects them. Many males with PID are short in

stature and do not develop as quickly as there peers. This is not to say

that this is the case with all males, but I can tell you that with my son

Mark, he is 4 years delayed in ALL areas of puberty and growth. He is going

to be 13 and is the size of an 8 year old and the weight of a 7 year old. I

believe that Sara's research can be located on the IPOPI website. Sara has

done a lot of research in this area and is highly regarded by the IDF and

IPOPI.

I hope that this information will be of some help to you and others in the

group.

Warm Regards,

Autumn (Mark Cd5-Cd19 PID and )

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