Tuesday, July 14, 2009

UH-UH!

Well, we're having a little difficulty 'enlightening' our neurologist on the folic acid therapy. We faxed him all the info. from the Hagerman research we found, hoping we could all be on the same page. Previous to the appointment and after 'reading' the info. he did prescribe a low dose of the folic acid over the phone for us.

We get to the appointment and tell him we want to move Ian on up to 10 mg, incramentally, like we had been doing so far. He was quite hesitant, left the room, came back, and proceeded to tell us what folic acid was (like we didn't know). Against what he would have wanted to do, he went ahead with the prescription, working our way up.

Then came the battle with the pharmacist. Basically he wanted to talk to the doctor because he was concerned about the dosage and wanted to be sure the doctor was in his right mind when he wrote the prescription out. Don't get me wrong, I am grateful there are people out there watching for any weird stuff from doctors. However, not when it inconveniences me - ha ha. So, long story short, the doctor would not override the pharmacist, so I'm stuck with a prescription of 2 mg. He had already worked himself up to 6 mg a day. That would be a step back. Whatever.

So I went to get the prescription, deciding that we would continue with what we've been doing and when that bottle was gone, we would get the higher dosage pills from a doctor friend who does more holistic stuff. When I get to the pharmacy they said insurance (medicaid because he's on SSI) isn't going to cover because it hasn't been 30 days since his last prescription. I just paid for it myself - it was cheap. Then I went to the vitamin store, bought a bottle of 800 mcg and am giving Ian a total of 8 capsules (emptied into his juice) a day (about 6mg). We were giving him 8mg, but then started noticing some behavior issues. So, I dropped back down to 6mg. I'll up it back up just to be able to decide if it's that or was just an off-week for him.

So, then I email NFXF for references for a new pediatrician and neurologist in our area that are familiar with FX. They sent back one pediatrician and one neurologist. Never heard of the pediatrician. The neurologist?......Yep, the same one we're using! Ugh! I figure we'll be a good source for him when other FX parents ask about folic acid therapy! :)

Sometimes ya gotta laugh just so ya don't scream.

5 comments:

Sarah said...

Wow! How frustrating. I feel really lucky we got the prescription from Hagerman and the pharmacist didn't blink an eye. We're not using it at the moment, but are thinking about starting it again.

SB said...

you're the TRAILBLAZER for families who will follow. I had one doc once refuse to see my son, Jonathan, because his case was too complicated. Seriously....
St least your doc will learn a lot from you and your family :)

Jen said...

Crazy...

Umma said...

Wow, I had no idea how lucky we were!

We asked Monkey's pediatrician to prescribe it and gave her some printouts from the National Fragile X Foundation website on the topic and we had a prescription in hand.

The pharmacy not only didn't question the dosage but special ordered the necessary ingredients to do a custom compound for us even before we showed up with the prescription.

The only person who has ever even mentioned the high dose of Folic Acid was a pediatrician we saw who was filling in for the normal ped. when Monkey had conjunctivitis and even she only mentioned it in passing as she read his file.

Kristiem10 said...

That is frustrating.