>> Tuesday, July 2, 2013
We checked in at 10:00, were called to registration at 10:05 and were in the room at 10:25am.
I should add a few impressive things:
Second: They got an accurate blood pressure. That's because while he was sitting in the weigh-in chair, she wrapped the BP cuff around his leg. Within moments, the machine beeped and we had his, rather high, blood pressure.
Third: They measured his height in less than 10 minutes. In fact, it took less than 15 seconds. Their height measuring stick is digital. DIGITAL.
His total check in time was a little over two minutes and it was all accurate. Cool.
So, we went to The Room. For 5 hours. For....5....hours. Of course, we would have waited 5 days but still...it was a new record. If it had been in the ER it would have been a new record as well: Shortest time to treatment but we weren't in the ER.
In that time, we talked with Keira, and two dietitians, who decided he probably needed a calcium supplement, if it didn't cause him great constipation. They also decided he was exceptional in his eating habits. I had brought what medical records we had for him, and they made copies.
We heard children crying, we heard parents singing and we heard Bug humming and chirping while he played.
After 5 hours, the Doctor came in. We exchanged pleasantries and he asked about Bug's history. Now, he had his records so we didn't have to talk too much, just about what mattered to the Doc the most.
Then, he said: I don't suppose you did a follow up LP.
To which I responded: Yes we did (BIG SMILE).
Two months ago and I STILL am waiting to hear the results.
He said: That seems a little excessive.
Tell me about it.
We all agreed that having those results was important so I called Bug's pediatrician's office. True to form, they came through. They pulled up his results and faxed them over.
If only it was that simple.
What was faxed, did not have the values, it was only the paper that stated the test had been performed.
So I called back. 20 minutes later the results were being faxed. Only they didn't receive them. So I called back and THEN we had them.
The good news: His 5-MTHF level went from 27 (range is 36-100) to 73! Oh hooray!
Doc then brought in a Neurologist. While talking, he mentioned:
So he hasn't had the antibody test.
I smiled: Yes he has.
I fetched the results on my phone and handed it over. His response did not shock me and it made me smile. He said:
Wow! That's the highest I've seen. His blocking number is very high.
He has the double whammy. Blocking is really high and binding is about medium but...has he had any IvIG?
Not just no but I've asked and they looked at me like I was asking them to split an atom with a spoon.
So, Doc wrote up a protocol for PCMC for IvIG and also wanted to do some mitochondrial testing. He asked if any of his mito testing had been performed after fasting. Nope. And has he had any other autoantibody testing, because with ONE autoantibody there is more. Nope.
So we left with two tests and one protocol.
We went to have pizza, Bug seized at the table :( and Kiera called.
She said: We were brainstorming after you left. How would you feel about US doing his initial IvIG? It's a 5 day course, are you OK with that?
We arranged for him to get his fasting blood work tomorrow and then be admitted for an EEG and IvIG. Cool.
But wait...there's more.
We got another call. This time they asked us if Bug could participate in yet another research study (when we got into the room we signed a release for his info to be used in a study). This time, they would draw more blood tomorrow and we will collect first morning urine. Good freaking luck with that, Daddy...that's all on you big guy.
So, not only did we get the testing I wanted but we are also getting first level treatment! Excited is not the word, especially since he has had yet another seizure in the hotel room. This sucks, but hopefully, it won't suck for much longer. Fingers, toes, eyes, arms and legs crossed.
What a day.