Tuesday, July 14, 2009


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.

Wednesday, July 8, 2009

Did I Really Do That?

So, I go to Kohls to buy a shower curtain. Of course, the one I like I cannot find on the shelf. When I asked an employee about it, she said she would go see if they had any in stock. So I wait, and wait, and wait. No kidding.....for 25 minutes!!!! Finally, I saw another employee, told him about the disappearing lady, so he goes to see if he can find her and the shower curtain. He comes back....no luck finding the lady and no luck finding the shower curtain. So he says, "wanna just buy the display?" I say, "Sure". So he takes it down and I take it to the register.

A friend of mine asked me later if I asked for an extra discount since it was a display. Nope, I don't ever think that fast. I take the curtain home. A couple days later I go to put the hooks in to hang it up. Oh, first I have to work 20 minutes just getting a display tag off the shower curtain. Why 20 minutes you ask? Because of what the curtain is made of, it's fragile. If I were just to rip off the tag, it would have ripped a big hole in the curtain. Okay, then I go to put the hooks on. I'm putting it on with the liner. All of a sudden, I run out of shower curtain, but I don't run out of liner! The display is a partial shower curtain!!!! Okay, some of you would probably have been smart enough to notice that at the store before you decided to say, "Sure". I, however, did not. I just knew I wanted THAT shower curtain.

Embarrassingly, I had to take it back. Lucky for the me, the clerk didn't mention anything about how I didn't notice. She only said, "They sold it to you that way? You should have asked for a discount".

You will be glad to know that they had the actual shower curtain the day I went back.

Wednesday, July 1, 2009

Know What I Wish?

I was thinking the other day about how I wish that I could meet all of you! How great it would be for us all to be able to meet in one place (I'd opt for anyone living in Australia).

I got a call the other day from someone who's son was recently diagnosed with Fragile X. She got my name through a friend of hers who knows my sister, and therefore knows about my situation. As I talked to her, I found myself wanting to just talk and talk and talk. I'm not sure I was even much help to her, but it all reminded me of when we got our first news. All the emotions, uncertainties, questions, etc. I told her one of the most important things to me was getting in touch with others who were going through the same thing. That's how I got questions answered, resources, and just knowing that the feelings I was feeling were okay and normal. I felt like I truly ached for her. I found myself praying for her marriage and family, knowing what a toll it can take on couples.

Anyhoo, then I started wishing this wish....especially as I got responses from those of you I requested information from via email. I've loved having you all rejoice with me in the little things and feel compassion for me in the not-so-good things. And I've loved feeling a part of each of your lives as well. So, thank you! And who knows, maybe one day........