Thursday, April 25, 2013

Genetics Results and Other Odds and Ends

I can't believe the last time I wrote, I forgot to mention we received the results of all of his genetic testing.

And those results? Everything was "normal". So, there is nothing obvious in his DNA to explain anything.

Which I interpret to mean: his autism can be reversed.

I am still antsy for this homeopathy appointment. I have been reading both of the books that were suggested. One is really esoteric, and I couldn't recommend it to anyone and still sleep at night. The other one is called Impossible Cure by Amy Lansky. I am not very far in it yet, but it is definitely more readable than the other one and I am enjoying it so far.

The camel milk is going okay. Buzzy was all over the place yesterday. His speech is certainly more clear and he isn't dropping as many ends of words as he was a week or two ago, so that's great. But, his poop is an unholy mess and he was really antsy yesterday and all over the place. He did sleep a little later today, which was good. I am just hoping his digestive system gets the memo to not be stupid. I am tired of the mess. So, we will keep it up. I am emailing another mom who is doing camel milk and I've also asked the FB group about how long it will be like this. I really, really hope not much longer.

That's really about all I've got.

Sunday, April 21, 2013

Changing things up

Things have been pretty stable here lately with Buzzy, for the most part. Yes, we changed speech therapists. And we are now driving him to his therapies twice a week instead of them coming into our home. But, his supplements and diet has remained pretty much the same.

I decided to try to re-introduce some of the forbidden foods. I don't really know if he ate any of my attempts at re-introducing brown rice. We tried to get him to eat some pasta, but he wasn't too willing. I did give him some Leapin' Lemurs (peanut butter being the forbidden food), but I didn't note anything too different. However, I did add one huge thing this week. So, I think any reactions are now automatically suspect, because I am not sure what to blame it on.

Wednesday night the camel milk arrived. It was nice and frozen solid. I kept out one pint to thaw. We started him with 2 oz on Thursday morning. I didn't notice anything out of the ordinary with him behavior-wise. Maybe he was a little more cranky and little more likely to tantrum.

Friday he was definitely throwing more fits, being more disagreeable, and having more tantrums. His poop turned nasty. I know that the camel milk might cause some die-off, so I wasn't too worried. But, I hate nasty poop. He also napped - just laid down on the floor and fell asleep. Which is not like him at all. I really think it was the camel milk.

Saturday was pretty much the same - more tantrums than usual and another nap. And nasty poop.

Today, he woke up with a poopy diaper, but it was really solid. Like (here comes some TMI) pebbles solid. Which is so rare for him. His mood seems to have stabilized, but the jury is still out on whether he is going to take a nap or not. He is lying on the floor here looking really close to napping, but he's not there yet. We will keep it up and see where it takes us. One of the women who started the camel milk FB group messaged me and wants to talk to me about her child's experience with camel milk, and I am excited to talk to her - which I will do Monday. I had posted to the group concerned about the poop issue and I was worried that he might be allergic. I feel so grateful that I am "meeting" all of these amazing people who are so willing to give their time and expertise and answer my questions and help me along. I don't know where my son would be without the internet, but it wouldn't be good. I have received so much help from many people (and many of them in the last 2 days!). I try as often as I can to give back a little of it. I hope to (when I am a little further into my journey) become a TACA mentor.

I also decided to go forward with homeopathy. We have a good window here where we aren't changing any supplements (since we don't see his doctor till mid-May) and I keep reading so many awesome things and so much awesome progress with it. I heard good things about The Center for Holistic Healing, so we are all set for an appointment on the 29th. I am looking forward to getting started with it. I think this, together with the biomedical interventions (and the actual therapies) will really get Buzzy moving in the right direction.

As for my interest in Dr. Goldberg, I've found some comments from parents that make me think this isn't the right path for us at this time. Perhaps if we aren't seeing any changes in Buzzy with what we are doing for him I will revisit a trip to Dr. Goldberg. For now we will stay the course, especially since he is making such great progress.

And that nap? Despite everyone and their sister coming in to talk to me, Buzzy has continued to sleep. It's amazing.

Monday, April 15, 2013

Busy - but not this month

It's time to get caught up on posts!

A week or so ago, we finally got the long-awaited urine test results. I know, I know. It's really a sad commentary on your life when you look forward to something like that so much.

There was a lot of information. And most of it, I have no clue about. He showed a high need for all tested antioxidants: vitamins A, C, E, coenzyme-q 10, and alpha lipoic acid. And high need for vitamins B1, B2, and B7. The rest of the Bs were borderline. He also tested borderline for Zn, Mn, and Mg. 

The only thing he was high in was molybedenum. I don't know if it was an "okay" high, or "too high". The "x" was all the way to the right. 

He was tested for mitocondrial dysfunction - he was in the middle. Need for methylation - none. His score was all the way to the left. Perhaps he's an over-methylator? I don't know.
He showed a need for glutathione.

Then there was a huge picture of the Krebs cycle. He had a bunch of abnormal numbers on the right side of the process. Things like iso-citric acid.

Then there was the final page going over metabolic stuff, where many areas were abnormal, like high markers for bacterial dysbiosis. That wasn't too surprising.

So, overall - over 7 pages of things, only the rudiments of which I understood.

We have our appointment in a month. Yes, that was the earliest available. Ugh.

I still haven't heard from the geneticist about his first test results. 

We just started today with his new schedule and new speech therapist. (She had the flu last week.) I hate the two hours I have to spend in the car driving him to and from the therapy, but I am trying to do what's best for him. The baby isn't too excited about the whole deal, though. I can't say I blame her. We will be doing the same thing tomorrow, except worse. He will have 4 different therapies tomorrow, starting at 9:45. I hope he does well. 

I signed up to attend the Autism One Conference in Chicago last night. I don't think I will be there every day, but there are a lot of different talks I want to attend. I am pretty excited for it. It's being held at the end of May.

I have been doing a lot of reading about how beneficial camel milk is for kids with messed up guts. I placed an order on Friday for 10 pints. It should be here Wednesday. I am excited to start this, as well. I have high expectations. There is actually a lot of scientific research on this, too. I know it sounds crazy, believe me.

We have been having more tantrums around here lately. I am not sure why. He has been pitching a fit because I won't let him open and close and open and close (etc.) the garage doors. It's been kind of getting old. I had to manhandle him into the car today to get to his therapy and I had to manhandle him into the house after we got home from his therapy. It's not exactly an easy task with the baby to handle, too. 

Buzzy has started to answer "yes" to questions. Not all questions, but some. He has "no" mastered, but I would love to ask him a question like "Are you hungry?" and have him answer "Yes!" when he is. We are getting close, I think. 

I am also looking into homeopathy to help him out. Not now, but it's something I am keeping in my back pocket for when we are waiting for appointments and I need to "do something NOW" as I am wont to feel. 

Well, the Buzz thinks it's time to help me post an entry. I guess I have to cut this one short!

Thursday, April 4, 2013

The chasm widens

I have been doing a lot of thinking about the baby. She is delayed in a few areas. And such small things she would have to do to catch up! All she needs to do RIGHT NOW is say two words with meaning and she would fall right in line with her peers. It sounds so easy. And yet, she can't. And I really don't see that changing any time soon. She is able to lift her shirt to look for her bellybutton, but she can't look at me when she's asked "where's mama?" And with every passing day, I fear the chasm between her abilities and her peers' abilities widens.

Then there's Buzzy. The list of things he needs to be able to do to catch up with his peers is a lot longer. And while the chasm isn't as big as it was at one time, it's still there. And some days it's unfathomable how he will - we will - cross it.

Buzzy saw the geneticist on Friday. They took his height and his weight and his head circumference. They worked up a family tree with genetic history of extended family on it. Then we talked about how much testing would cost. (Answer: if we had NO insurance, it would be great and FREE. Because have insurance, we will pay more than the $1500 per test, to help pay for those without. And we're getting two different tests.) The we met the doctor. We liked him. He was very personable and knowledgeable about autism. He was familiar with a few studies that I had just read about the day before. We both liked him. He examined Buzzy's hands and looked him over, but didn't take any formal measurements. We again talked about testing, and decided to go with an autism panel test (a series of metabolic and other biochemical tests) and the CGH (microarray).

We finally got around to getting his blood taken for these tests yesterday. He also had to give a urine sample, and he did great on the potty and gave a nice big sample. The biochemical tests will have results in 7-10 days. The microarray will yield results in 3 weeks. Tick tock.

We are still waiting on the urine test results.

We have finally gotten more speech for Buzzy. Now every Monday and Tuesday, I will drop him off at Skill Sprout and he will have 2 hours of ABA and one hour of speech therapy. It will be a pain to drive there and drop him off, but it will be good for him to have a different environment and get more therapy. I still need to inform his former speech therapist, since I suspect my services coordinator failed to do so. (In other words, he had speech from her this week after I was told she had been released.) The rest of the week will have the same schedule.

It's been warmer here, so we have been able to get outside more often, so that's good.

That's all I've got. Still desperately looking forward to the summer and to more answers.