I am CONFUSED

[Guest guest]

i had not had a chance to post since I got info from my ex husband on   Friday.

He said that he had taken my son into the Immunologist on Tuesday and he had

mentioned that he would like to try a trial off period from his Gamma Globulin.

WELL I freaked. For those of you that know my story. Lucas was started on IV Ig

at age 3, and was on that until the summer that I moved here to OKlahoma at age

9.  This same doctor trialed him off that summer. He was sick the entire summer

on one antibiotic after the other. We got to Tulsa and drew his titers after

waiting the 100 days and they all came back low or non existent. So the

Immunologist here said we need to get him on right away. His first infusion was

within a week of the testing. He has been on Sub ! since then and has had  only

a couple of infections and pneumonia once. Continues with some GI issues and

sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has

been a trial. We are

finally getting to a point that he is accepting the infusions after several

years of him fighting me HORRIBLy even to the point of hospitalization and

calling the police because he was violent and refusing them. I finally was able

to figure out with him that he did not want me to do them because " moms are

suppose to love their kids not hurt them " So we started going into the Drs

office and starting them there. So this summer he lost his insurance here in OK

so I had to send him to WA to spend the summer with his dad until I can sell my

house and move. Acreedo was suppose to do his infusions but bailed on us after a

few weeks because they were not honest with me about not having a nurse

available in our town. They wanted the business and thought they could get a

nurse up there so told me they had one. So anyway they came 3 times and then

said they would teach someone else> my daughter agreed (19yo) and began to do

them. He did pretty well. Now she has

moved to Idaho and so my ex is trying to do them. So far so good with some

issues along the way. LOTS and LOTS of counseling and we hope the compliance

will continue with maturity. SO.... here we are with the doctor talking about

taking him off again. I have called and left him a message but he will not be in

until next week. I am 2000 miles away and I am trying to figure out what to do.

Why would he want to trial him off again. I was told that he thought he was

doing very well and may not need it any longer. NOTHING has changed except that

he has been on Sub Q and he is doing well. His levels are in the 1100 range . He

was at the 1300 range and we reduced his dose last January., For him

historically when he goes under 900 he gets sick. So have any of you had a

doctor want to retest after only 3 years ???? I am really upset. Secondly why

would he talk about this with FLU season coming AND in the middle of the

winter??? My experience has been when this

guy gets his mind made up he does want he wants which will be to withhold his

gamma globlulin. I could take him to Seattle to get a second opinion which is

what I think I am going to do anyway. Any suggestions on how to approach this???

One of the things I believe is that he is upset that he lost so much revenue

with this kid. He use to do his infusions in his office but now we are doing

them at home. All of his patients still do them IV and there is a good deal of

revenue that comes from those cases. I was the one that insisted we try the Sub

Q when we moved to Ok. He really did not give me a choice the last time even

though I knew I was moving and was concerned about doing it over such a

stressful summer.

BARBIE