Behavior

[Guest guest]

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 )