NIH -- Budget cuts ??

[Guest guest]

Has anyone heard about the NIH's major budget cuts and downsizing a lot of

their protocols including the one on Periodic Fever Syndromes?

I am not trying to cause anyone undue stress, but I just heard privately

from two other parents whose children are part of the PFS protocol and they

tell me that they were informed by the NIH that they are downsizing the

protocol. Both mothers told me that the NIH will no longer give their

children the medications they need. The one mother's insurance won't cover

the costs of the medication and she can't afford to pay for the meds. The

one child has been part of the protocol for a couple years now.

I decided to email Beverly Barham today to get answers about these budget

cuts and to find out if they ever got my son's last genetic test results

back from October 2006 ... Beverly won't email me back. This is the 3rd or

4th time I've either emailed her or called her and she won't get back to me.

I know she is reading my emails because I get a " read receipt " for when she

opens the email.

I am very upset about all this. My son started going to the NIH last May

and he was seen twice last year. The second time they deemed him as having

HIDS; however, recently his leg and foot pain intensified so I contacted the

NIH's Dr. Song and she told me to get him in with a local Rheumatologist and

to get x-rays. The Rheumatologist found out that my son's legs hurt so

badly because he has a very rare condition called CRMO " chronic recurrent

multifocal osteomyelitis " which means his bones become inflamed and it eats

away the insides of his bones! In addition, the Rheumatologist believes my

son may have an inflammatory bowel disease such as Crohn's disease or

ulcerative colitis because many symptoms of PFS (periodic fevers, ulcers,

diarrhea, joint pain, eye pain and redness, foot pain, etc) can also happen

in a child with an IBD. The last two weeks has been incredibly stressful

for my family. But fortunately our Rheumatologist is up on the latest

research the NIH is doing and so he wants them to test Mason's Card 15 gene

which is one gene they've been able to isolate which causes Crohn's disease.

And the NIH is the only facility in our country which can do this test ...

and now we don't hear back from them. This is just not right.

I plan on trying to call Dr. Song tomorrow since she atleast seems concerned

about my son's well-being and had emailed me back about a week ago before I

knew anything about the budget cuts. I am very upset that Beverly isn't

calling me back for so long now as it has been months. Dr. Kastner had told

us last October that he wanted to see Mason by January ... and yet Beverly

only emailed me once saying that her more " sickly patients " were getting in

during that month so Mason had to wait. Those weren't her exact words, but

that is what she meant.

Also, for those of you out there that are being told your child has

without having genetic testing done ... you must push for these tests and

don't stop pushing until your child gets the best treatment possible. We

had actually come to accept that Mason probably had HIDS even though the

last test wasn't back yet because the NIH felt so strongly about this being

his diagnosis ... until his leg pain intensified and then we found this

stuff about CRMO in his x-rays. We were also told that Mason's one leg

stopped growing at some point in time, then started again, then stopped

again, then started again ... on and off for who knows how long because he

has ridges in his ankle bones. The Radiologist told us that this can happen

when a child fevers too often and isn't getting the nutrition he needs as

Mason has always fought to gain weight. Please keep in mind that our son

has possible IBD and not a periodic fever syndrome. But please don't let

doctors make you believe you don't know your child and that the child must

just live with the pain or the fevers ... you have to fight sometimes.

We've been fighting for almost 6 years now to get a firm diagnosis for our

son. Its been very rough, but he, like all our children, is soooo worth the

fight!

Fran -- If you read this -- Have you heard anything about these budget cuts?

I am very disheartened to think that our country would cut the budgets at

the NIH which helps so many sick kids in the USA and all over the world ...

yet they spend millions foolishly on every cause out there that doesn't help

to sustain human life.

Heidi

Mommy of Mason, 6 1/2 years old (post sigmoid volvulus, 4 colon surgeries,

GERD, asthma, " failure to thrive " , CRMO, and now possible IBD) my tiny 38

pound boy who is larger than life!

, 13 years old

Amber, 10 years old, asthma, anaphylaxis and hearing loss

and happily married to

burg, Pennsylvania