Tuesday, March 26, 2013

More Progress

Buzzy's speech evaluation from a few weeks ago went okay. I had the distinct feeling that the woman felt like I was wasting her time. She said he didn't need as much therapy as I was interested in getting and even asked if I still wanted to do the evaluation. After dragging my kids there and walking across their huge parking lot (and it was freezing outside) and walking up a flight of stairs and through their gym (like, sweaty people exercising kind if gym) to get to the speech room, I was NOT going to say no.

Needless to say, I was annoyed.

But at the end, I got his results. And once I came home, I calculated some things. So, I will just paste my "findings" here.

In October, I calculated him to have a 68% delay in expressive speech and a 64% delay in receptive. Today he has a 20% delay in receptive and a 10% delay in receptive. He wouldn't even qualify for EI with those numbers - they need to be 30%. That's if the tests are accurate. I suppose they are. I am happy to see such great progress.

I wrote that to a friend. And I am still excited to see how much better he is doing.

As for his allergies, I spoke with the PA. She said to cut out everything that was a 2 or 3 on the IgG list. Anything that was a 1 was okay to leave in. After some finagling, I was able to find a substitute for his beloved fish oil that didn't have salmon. It doesn't have as many omegas in it, but it doesn't have salmon and I am able to still mix his Super Nu-Thera in it without him having a fit, so it's all good.

We are still waiting on the urine test results. The doctor should get them this week. Which means maybe I will get them next week.

The baby and I will be able to get established as new patients in mid-May. I just made that appointment today. I guess I was dumb for thinking that we would be able to get in over Spring Break (which is next week). When I heard the scheduler flipping through pages for about a minute I knew it wasn't going to be good. Sigh.

We have also been making progress on the potty training front - as long as he is naked from the waist down (socks are okay). He has been doing great on the potty with both poop and pee - and even more significant - telling us he needs to go.

So, we have added to his elimination diet and we are continuing his supplements and continuing to make progress. He is sometimes using 4 word sentences without prompting. His speech is getting clearer - especially if we help him practice words. I am happy with the progress he is making.

Now if it would just warm up here, we could go outside once in a while!

Tuesday, March 12, 2013

Long time, no write

I haven't felt the muse speaking to me until today, so I let it go. But, I am back with some things to talk about. So, here we go!

Last week, I had to take Buzzy off of all his vitamins and shots. Everything. I needed to collect a urine sample from him that was all Buzzy and no good stuff. For 4 days. I figured while I was doing that to do the pyroluria testing on him as well. I stopped all his vitamins last Saturday. And aimed to collect his urine on Tuesday. I needed a first morning sample and then a sufficient one later in the day.

By Monday the Buzz was getting a little squirrelly. By Tuesday I could see his focus was definitely not as good as usual. By Wednesday (incidentally a snow day for my husband and girls) things were deteriorating rapidly. And I missed his first morning urine because he woke up earlier than usual. I was definitely not happy. I did manage to get barely enough sample to send off for his pyroluria testing, though. I called them and they offered that the bare minimum they needed was 8 ml. Well, I gave them that.

Buzzy can use the potty if he is naked during a 2 hour period with zero to one accident(s). So, that's how I got that sample. I did have to grab the potty right away before he dumped it, though.

Anyhow, I devised a plan to get his first morning urine. I would wake him up 6 or so hours after he went to sleep and have him sit on the potty and pray he would have something in there. Then, I would put a urine collection bag on him and catch that and combine the samples (which was okay with the testing company).

So, when the baby woke to eat (at around 3:30 in the morning), I grabbed Buzzy and he went to the potty. (Not as easy as it sounds.) And I had enough to use for testing, but I bagged him and combined it anyhow.

I already knew that going off his diet was bad news, from what we saw in December. I didn't really think all of the supplements would have an effect. Or such a dramatic effect. But, they did.

By Wednesday he was drooling. He was toe walking. He was throwing tantrums. He lost focus. He was back to his "old" self. Which wasn't good. He started waking earlier and earlier each day. He will sleep in anywhere from 8:00 to 9:00 in the morning, regardless of when he goes to bed. (We don't usually get him to bed till 9:00). He woke Tuesday at around 7:30 am. Then Wednesday, 7:00 am. By Thursday, he was up at 6:30. I was exhausted. And he was all go, go, go from the moment he woke up. As soon as he got up Thursday (and his samples were done with), I started him on his supplements. And that night, he got his B-12 shot.

During that time his poop went from mostly solid to mostly pure liquid with caustic butt-burning properties. He was a mess. And I guess I now have another answer: he needs the special diet. And he needs his supplements. I was starting to wonder if they were all worth it. Ha ha!

Today, I had to wake him up at 9:00, he was in deep sleep. He was a little wired today, but no tantrums. And he's had his first solid poop since he went off his supplements.

He also got his allergy test results back. I have a consult tomorrow with his doctor to go over. I couldn't wait till we got the urine test results back, because he tested positive for a lot of things. And I want to know how to handle it. He had quite a few IgG positives (almond, oats, gluten, wheat, yeast, mustard, cow's milk, coconut, salmon, etc). I won't name them all here. He also tested IgE positive for two things: peanuts and wheat. Based on my reading only the IgE ones are considered true allergies. So, I will talk with the doctor tomorrow and see what the plan is. In all my research, I have really just confused myself. So, we are waiting and not really modifying his diet at the moment (except to avoid peanuts and wheat - which we were already doing with the wheat).

We will have the pyroluria tests back tomorrow - all of them except the baby's. There is no way I could get a sample from her at the moment, so I am just hanging on to her test kit. My oldest was at the lowest end of abnormal possible - so I am treating her with some zinc lozenges and having her take b6. I am comfortable giving her what I am since they are for kids and Buzzy takes them.

So, for now we wait on urine test results.

I also have a speech evaluation scheduled with a different therapy place nearby. That's set for tomorrow morning. I haven't been able to make much progress with getting his speech switched over to his ABA providers. We are at the point where I gave my service coordinator their information, and she is supposed to call them. I'm not holding my breath.

On an annoying note - our service coordinator switched over billing for speech services to my insurance company back in January. Which I DID NOT give her permission to do. We talked about it, and I told her to "hold off for now". Of course, we could have been getting more therapy for him all along since then, because we were/are no longer subjected to EI's constraints. So, I am super irritated (even more than usual) with EI. And I am going to have to deal with them again with the baby? Oh, goody.

Well, that's all for now. As usual - waiting on test results. And I have started "brushing" Buzzy, too. Of ocurse, I just saw I've been doing it incorrectly. I will talk about that more next time. I will try any wacky thing I see on the internet - as long as it is pretty innocuous  And what can be more innocuous than taking a soft brush and brushing your kid? Well, it can't hurt. Let's see if it helps!

T-t-t-t-hat's all folks!