Re: New member

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In a message dated 10/8/00 5:21:30 PM Pacific Daylight Time, HugQ2h@...

writes:

,

Has tried Clindomycin before?

Yes he has. It didn't do much for him. Actually the only thing that has

helped is the IVIG.

<< For now we resort

to the more traditional ways Motrin,ice and sleep. It at least will lessen

the pain after waking and Cameron can tolerate it than.

We have been seeing a nuero at Stanford Childrens Hospital for 4 years now.

has had two mris of the brain because the severity of his headaches

before we went on IVIG. Thankfully there was nothing wrong They are

blaming the headaches on the sinus and migranes. We did Peractin last year

with marked improvement!! He did gain weight from the peractin. 10 lbs.

Our Dr told us they also give this drug to cancer patients to help with their

appetite.

We took off the Periactin. To see how he would do. The headaches slowly

began coming back. And we began giving Motrin. He was taking it daily.

Three months ago our nuero asked us to only give Motrin 3 times a week

for one month. That would have to chose if the headache were bad

enough. But that it could only be given three times in a week. He explained

how your body will induce a headache looking for the motrin, (addiction)

If after a month his headaches were still bad than we would go back on

Peractin.

Well, I must admit the first two weeks were hell!! I felt so bad not giving

him anything for the pain. e mailed his Dr. and told him what he

thought of this plan. The Dr. encouraged and asked him to hang in there

it would get better. We didn't believe him but decided to stick with the

plan.

Well Im happy to say that broke thu the pain. His headaches have

decreased! He still gets them but there managable now. He gets a real bad

one about once a week and he will take motrin for it. But we have gone from

daily to once a week. And he feels better. So it worked for us.

.. You mentioned the long trip to get the

infusions, have you ever thought about a home infusion nurse? That way,

could still enjoy the comfort of his own surroundings and get the IVIG at

the

same time. I know some health insurance's won't pay for it, but definitely

worth looking into. >>

Stanford has always been so good to us! They cater to kids and that has

really helped thru these last 4 years. But now its getting a little

harder for to juggle school too. So we are looking into home health BUT

we have not had many positive things about it in this area. We meet with our

ped in Nov to see what he thinks.

Well sorry this is so long.

le

10 Selective Antibody Def., Syringomyelia

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