&Vivian re/The Latest on Mike-penicillin

[Guest guest]

I am curious about penicillin. How do you address this to the doctor

and possibly justify it as a treatment med if the child's bloodwork

shows no cause for symptoms of excessive fatigue, joint pain, chronic

sore throats, and trouble regulating body temp (chilled or sweaty

unrelated to environment). additionally had severe and then

gradually declining obsessive and compulsive behaviors last year as

well, which turned into depression (retreated to room) over summer,

but now she is liking school alot more since ocd has subsided

significantly this year(yeahh!). She still has the above mentioned

physical symptoms which make PE very difficult for her, and the

anxious edginess, and up and down moods, asleep on top of her

homework every afternoon, but no panic/hysteria and so far her school

work is up to par (she usualy finishes homework after napping).

Overall she has improved, seems happier, but I would like to treat

these physical symptoms. I am thinking of leaving the pediatric

practice for her (she is 13 1/2) and finding an adult internist for

both of us (I have no regular doc myself since baby two yrs ago).

Maybe we should go the bloodwork route again?

Grace

> >

> >

> > Hi Vivian,

> > I now know why I decided I could only work

> > part-time. It is Wednesday and I finally got Mike's

> > RX for Penicillin today. I spent the day on the

> > phone Monday calling docs, waiting for calls,

> > writing letters, faxing things, etc. only to not

> > have accomplished anything by bedtime. Believe it

> > or not, it was our psychiatrist who called back

> > first, within the hour. I knew I liked her!! She

> > agreed with me that Penicillin was worth a shot and

> > referred me to the neurologist and NIMH. It took

> > the neurologist until 5pm to return my calls, and

> > then he passed me off to the pediatrician, with a

> > parting line of, " If you have trouble getting the

> > meds, have the ped, page me. " No call from peds.

> > Left messages Tues., his day off. So today, in

> > between seeing patients I got to call the ped. and

> > the neuro and finally everyone called me back at the

> > end of the day. Neuro called in the penicillin so

> > we started it tonite. Guess he got tired of me

> > calling everyday as he even put a refill on the

> > bottle....Then the ped who was skeptical about the

> > first round of penicillin thought if he responded

> > again that he would need some maintenence dose.

> > YEAH!! If he responds again, our team said we would

> > know forsure that it was the med. Then we will just

> > figure out what to do next. Everyone told me to

> > call NIMH to find out what their protocol is, and

> > since no one took up my offer of THEM doing it, I

> > guess I will!

> > And on top of the alien who moved back in last

> > week, I now have the alien with a bad cold, and

> > gosh, you would think this stuffy nose would kill

> > him. The only time he really ever is a weinie is

> > when his nose is stuffy.

> > As far as his IEP goes, the school

> > psychologist (IEP case manager) didn't return my

> > calls Monday or Tuesday, so I faxed him a letter

> > with the IEP that I wanted. I heard from him today,

> > of course. And it wasn't a short and sweet call, it

> > was lengthy and drawn out. He didn't think Mike

> > should have notes provided to him, it would make him

> > look different, etc. and their is already hostility

> > between his peers and him " because he gets special

> > treatment. " I reminded him that since I had to go

> > to Great Adventure in May with him, (only parent on

> > the trip because they were not comfortable with Mike

> > going without a parent-verydiscriminatory-I wrote to

> > the superintendent about that one-how much more

> > could they make a 13 year old stand out than require

> > a parent go with him?) and that the school could

> > make him look different to accomodate their comfort

> > level, I didn't care how different he looked as long

> > as his life and mine was easier. Whew!! So I did

> > agree to a compromise, all class notes would be sent

> > home for me to keep at home, and Mike would at least

> > try to take notes in class-I have told him to

> > pretend if he had to. They just didn't want him

> > sitting there, while everyone else was working hard

> > at notetaking, and Mike relaxing. In other words,

> > they didn't want him to have a free ride. Geez,

> > what a concept, an ocd kid relaxing!! Maybe it

> > would make his and our life better. Anyway, it will

> > be about 10 days before the alien leaves, if the

> > penicillin was the reason for the great turn around.

> > I am saying my prayers, crossing my fingers, etc.

> > Not only do I want it to work so bad again because

> > Mike's life will improve, but I want to make a point

> > with the skeptics.

> > Mike has not opened a book in almost a week.

> > I haven't pushed or dragged, almost feel guilty for

> > letting him keep getting behind, but I have to let

> > him go for a little bit. Guilt, guilt, guilt,

> > guilt....

> > On the positive side, Mike brought home two

> > paragraphs that he typed in his literature class,

> > for a essay he is working on. Miracles do happen.

> > In fact this teacher is very committed to having

> > Mike write something, and finish it, and feel

> > sucessful, rather than just have a bunch of

> > unfinished projects. So I am hopeful...

> > I think I am over tired tonite-I was thinking

> > tomorrow was Friday. So I will go raid the freezer

> > for some Ben and Jerry's and call it a nite. I

> > finally did realize that all this nitty phone

> > calling, haggling stuff is tiring!! I am only

> > working 1/2 day Thursday and then I off until Monday

> > (from my job that pays!!) Vivian, thanks for your

> > support and concern. I sure do appreciate it. I do

> > hope continues to do well. Those moments,

> > days are so wonderful. Hugs to you, in NJ

> > Hi ,

> > Thanks for the update on Mike. Sorry he is having

> > a

> > difficult time.

> > How did your calls to the DR.s go? Good for you to

> > take the day off.

> > I remember a few years ago, calling and calling

> > people

> > about our situation. It would take all afternoon

> > to

> > get a hold of some people and some would not be

> > available at all. Hope your contacts had some

> > ideas to

> > help Mike. You are right he DOESN'T want to be

> > this

> > way.

> > I usually find that when something is bothering

> >

> > his OCD gets worse. (or is it the other way

> > around?)

> > He lost out on some of his credits last year

> > because

> > he didn't have the voice to say what was bothering

> > him. He just stopped going to class, crashed, and

> > then

> > could not get back to 3 of his classes.I Found out

> > later he didn't like his lab partners in Biology,

> > found it hard to dissect sheep+'s brains, and felt

> > like he had personally offended the Biology

> > teacher who he really likes and respects. These

> > are

> > all attributed to his OCD. Add his depression in

> > and

> > you hit bottom. I do wish you some respite for

> > Mike.

> > Please let us know how he is doing. this

> > year

> > has been able to attend school and I am hoping he

> > will

> > continue to keep up so he can feel like it is

> > worth

> > going.

> > Take care,

> > Vivian in WA ST

> >

> >

> >

> >

> > __________________________________________________

> >