Ursula

[Guest guest]

<So who is liable when the patient dies? There must be a law somewhere to

protect this form of blackmail. BARBIE>

Barbie - I made the point to them that a leukemia patient would be hard

pressed to use them as a lab. Our mistake was using the pediatricians

office for such specialized testing instead of a medical center. We were

trying to save a screaming session in the hospital lab. One good thing did

come out of this which was the pediatrician (who was our most skeptical

person in regards to another port) finally saw (and heard) her nurses and

lab technicians having difficulty finding and accessing a vein for a lab

draw. She stated on Thursday that if ivig was to restart then another port

would be needed. We (infusion nurses, immunologist and mom/dad) just

couldn't seem to convince her that Macey was such a hard stick. The ped

thought it was technique or macey crying that was the problem. HEEEHHEE we

showed her otherwise. Macey used all her imaging skills and breathing

techniques. They tried to stick her when there wasn't any screaming or

crying just alot of heavy breathing. Also it took 3 different nurses/lab

people of the peds own staff to finally get a measily 3 cc's of blood before

it blew for the 6th time. after that they gave up.

Ursula Holleman

Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

[Guest guest]

Hi Ursula,

Sorry that I did not respond to your question sooner. Things have been so

hectic lately. In regard to your question about crohn's disease. Mark's

inflammation was in various parts of the small and large intestine. Some

was mild and some was moderate but all of it was chronic. I am uncertain as

to whether or not the area means how severe the disease will be that is a

question for a GI or colon and rectal doctor to answer. I have heard of

dentists diagnosing crohn's disease. Crohns can occur in any part of the

digestive system (including the mouth).

Methotrexate is a treatment for crohn's disease so I assume that it is

helping Mark. Vasculitis can also affect the GI tract and to date, it is

suspected that it has played a role as well. There is a new blood test that

can determine if crohns disease is a factor. It is an antibody test, so it

would not be useful in a PID patient that is on IVIG. Hope this has helped

answer your question.

I hope that the girls enjoy the rest of their summer vacation before school

starts.

By the way, Mark had his cardiac work-up today. He has a holter monitor on

and we were sent home with another monitor for a month. They are not

certain as to what is causing the cardiac problems. They did tell me that

the weight loss was not a factor. They did not feel that it was from

anxiety either. Vasculitis or the IVIG is suspected but not confirmed.

We'll see.

Autumn (Mom to Mark Cd5-Cd19 PID and )