New Member !!

[Guest guest]

OK Ursula I just could NOT let that one slide by ME SHY ????? NOT !!!!! Hi to

Debbie , Ursula, Gail , Autumn, and Dawn and I am not sure who else

knows me that is here !!! To everyone else let me introduce myself, my name is

Iredale and I live in Wakefield, Rhode Island !!!! I have a son , Mark ,

who is 20 and is suffering from CVID. I have been reading the PedPid emails

for awhile but have had a hard time finding time to write in !!! Things have

been kind of rough around here lately and from most of the messages I see Mark

and I are going to be the old timers of the group. Some of Mark's problems

include a lifetime history of asthma, chronic sinus and ear problems (

including two mastoid surgeries on the left ear which has left him almost deaf

in the left ear ) , a ton of GI problems including life threatening weight

loss , chronic neutropenia and a neutrophil defect ( he has neutrophils of

some sort but they don't migrate out to the tissue during infection ) , he has

moderate to severe osteoporosis, he also has dextrocardia and therefore there

is a question of a cilia dysfunction and the latest is we have just had 8

weeks of tpn via two picc lines . The first line only lasted 4 weeks because

he developed a REALLY STRANGE and serious infection at the site. His arm all

swelled up and the pustulets looked like a culture medium. Right now we are

trying to see if he is going to be able to maintain his own blood level and

his weight. He stands 6' 2 " and was down to 117 and I was able to get him to

125 which is where he was when tpn started. He now weights 151 which still is

way under what he should be given his height. He is in the process of rapidly

loosing weight again down to 147 today and I am just heartsick over it all. To

reflect on some of the questions in the group of late, we have done it all

guys, from the denial to the depression to the shrink to the home schooling to

letting him go back to public for college. However due to the seriousness of

his last escapade he is missing this semester. I have the husband that all of

you have been describing and it was not until recently when he had to GET

involved with hooking up the tpn and the doctor told him his son would die if

we did not do something did my husband FINALLY begin to see the picture. STILL

we are so different he is the practical one and I am the emotional one.

USUALLY on the verge of a breakdown mind you but then after dealing with this

mess for 20 years I think I have earned the right. YEAH we have had the

doctors who tried for years to tell us we were nuts and that Mark was nuts and

it was not until he was 16 and had to have two emergency ear surgeries within

4 days did they believe us !!! Finally at 16 a diagnosis of CVID was given and

then OH DID THEY EAT THEIR WORDS !!! We have travelled to Children's Hospital

in Boston , the National Jewish in Denver and was just about to go crazy when

we met up with our HERO Dr. Miles out of Houston Texas. He has been

our life saver !!! So there you have an introduction in a nutshell I could go

on for hours and hours about all we have been thru but then it would sound

alot like what most of us have done. So now you know that Iredale and

Mark are amongst the readers of the group !!!! See Ursula I REALLY am NOT SHY

now AM I ?? You see folks I know most of these wacked out women from the SCID

GROUP that we all belong to. I hope you all have a good night and I hope

tomorrow brings sunshine to all, I have to call Dr. Miles and it is NOT going

to be a good conversation casue he wants to put in a feed tube for Mark and

being 20 Mark is NOT a happy camper right now plus his blood work is all

screwed up but then what else is new. Have a good night all and thanks for

letting me read your stories how similar we all are !!!