Monday, September 30, 2013

Our weekend at the Real Help Now Conference

My husband and I this past weekend attended the Real Help Now Conference that is put on by TACA. Even though I consider myself pretty knowledgeable (despite being pretty new to the diagnosis), I learned a lot of things. It was a lot to take in, but it helped us know we are on the right track. Also, go to the TACA website. I linked it above. They are a FANTASTIC resource. And, while you're at it - request a mentor. I have a great mentor, and in a year or so, I am going to be applying to be a mentor. Give TACA some love, because they really, really are awesome.

Plus, I got a chance to see a number of doctors speak that are pretty much rock stars in the autism world. That was pretty awesome.

After watching many presentations the first thing was that we need to see Dr. Frye, because he is the be-all end-all of pediatric neurologists - and not just that, but ones that study autism. So, in short, I have never really put to rest the idea of seizures in Buzzy, because I don't feel he got the proper care. The EEG wasn't long enough. The doctor might have brushed off anything abnormal. We don't know whether he has cerebral folate antibodies. Still so many questions, and I want the answers. I can't stop listening to my gut and my intuition, so for my peace of mind, this is something we need to do.

There is a 15 month wait list.

I plan on getting in before 6 months are up. It's just a personal goal of mine - and that was something they talked about at the conference - how to get one of those cancellations and get seen sooner.

I also found that we are definitely seeing the right "local" doctor. We are on the right path. And, with enough time, we will heal Buzzy.

I think even more important than what I learned, is what my husband was able to learn. He has mostly learned everything through me - what I read and then what I told him. This was a good way for him to see how everything fit together and that maybe his wife wasn't crazy for wanting to do all of this stuff and wanting to see these doctors.

Clearly, the proof is in how Buzzy is doing, and he is doing a lot better. But, it was still nice to hear these doctors present, and what they're presenting are essentially the things we're doing.

Tuesday, September 17, 2013

Recharging the Batteries

Yesterday I had an appointment with Buzzy's and the baby's doctor. For the last 8 months we have only seen her physician's assistant. And while that was all well and good, I am so glad we finally got a chance to see the doctor. It was a great appointment. I felt like everything we are doing is on the right track and we got some more ideas on where we need to go next. 

So, we are going to continue with the parasite killing. I have been very lax and unmotivated about getting my son dosed, and that ended last night. We are back on, and we are going to keep swinging. I am pulling in the reins on his diet as well. I haven't been very good about making sure he isn't eating foods that won't interfere with the parasite killing. That is stopping as of now. 

His speech is (obviously) still delayed. We decided to add in l-methylfolate. He was on it before, but i pulled it when we started the worm killing. It should help with his speech, hopefully. We will also increase the amount up to 10 mg, which should be interesting. 

We also had high markers on his follow-up OAT test for bacteria, even after all we're doing to address that. Not surprising. So, we are going to add Goldenseal to the mix, to hopefully kill the nasty bacteria.

We are also adding l-carnitine, and I can't remember why on that one. It addresses something he is still having issues with. 

Chlorella is also being added to added to mop up the toxins and other yuck that is floating around. 

We will also be doing a bunch of bloodwork. First off, we are going to get titers for a number of viruses (Epstein-Barr, CMV, measles, rubella, and HHV - there might be one more, but I'm not getting off my butt to look). We will also get a nagalase level measured to see if GcMAF is a treatment we need to pursue. All of those deal with viral issues in the body. If the nagalase level shows there are issues, we will start with a sublingual GcMAF to see if it's tolerated before we move into shots. 

We discussed iron levels and hemochromatosis. Both my husband and I are heterozygous for this, so there is a possibility Buzzy has it. There is a CBC and some other things as well. I am not looking forward to the blood draw (we will do it some time after October 1st, when the new year kicks in for our medical flex plan and we get to put more money on it), but I am looking forward to the information we will get from it. 

We also need to work on getting more veggies into the boy. I have been lax with that as well lately. So, it will be back to making smoothies so that someone's diet is a little more healthy. 

All in all, I am happy with Buzzy's progress, but (of course) I still want more. I want to get rid of the nasty bacteria he has and see his personality, not what the bacteria make him do. Apparently strep is the one that makes someone fixate and be obsessive and echolalic. (I had thought it was the clostridia.)

Monday, September 2, 2013

September Update

We had a busy summer here, but now it looks like summer is over. I love warm weather, so the impending winter is not something I am looking forward to.

Buzzy started his first remedy - it was for Flagyl. He got it last week. Healing reactions, I was told, for these first two remedies would be minimal, but I would see a reaction (if there was one to be seen) in about 7-10 days.

Well, the last few days have been something else. Buzzy spontaneously asked me the other day "I want to play with Mommy". That was a pretty awesome moment, but it is something they have been working with him during therapy, so while it was spontaneous, it kind of feels it wasn't. I know I need to get over that.

That being said, he has also been a little hard to handle. He has been biting his sister, hard. He has been taking things and throwing them on the floor. His favorite is tomatoes. He has been kind of all over the place. Before he had been more focused and was able to play with my girls and me more. Now is more like his old self - very obsessive with vacuum cleaners and more apt to get into things.

So, my hope is that this is a "healing crisis" and we will be seeing very good things (or at least a tiny bit better than where were before) very soon. He will start his next remedy in a week or two - depending on how I feel about how he is doing.

I also decided to start his baby sister and myself on Heilkunst homeopathy. I look forward to seeing positive changes for us as well.

We are keeping up (mostly) with the parasite deal. This weekend has been a little rough, as I mentioned before.

We don't have any new irons in fire so far. I have an intense desire to start mild hyperbaric oxygen treatment, but the bottom line is you need money (a lot of money) to do even one round of treatments. I would love to get a chamber, but that will have to wait. Maybe when we have the minivan paid off.

That's about all I have for now. Hopefully there are some great things on the horizon.