Today was the big day: our first appt with Dr. Van Dyke, our DAN! physician.
I was very impressed with the Hyperbaric Center. Very impressed. When we went in to meet with the Dr, I was immediately at ease. He also has a child with autism, so he understood on a really personal level. His son was actually there getting HBOT treatment, so we met him. I really liked this Dr a lot. He talked to us like we were informed and aware, which we were!
We went through a big history. We talked about the progress we've already seen on GFCF. He said based on that, he though full to near full recovery was totally possible. I couldn't believe my ears. I'm trying not to get my hopes up, and of course he wasn't promising anything. But hearing him say that was a big deal for DH and I.
His recommendations:
1. Continue on GFCF. Also eliminate soy and corn (at separate times) to see if Riley shows improvement.
2. Methylation through Methyl B12. We'll be ordering this soon through a compounding pharmacy and will start giving him shots every three days. He thinks we'll see BIG improvement from this.
3. Supplements. Multivitamin, probiotics, cod liver oil, digestive enzymes, and two supplements to help with the methylation (DMG and Taurine)
4. Vision therapy (big maybe here) A lot of Riley's symptoms sounded like those written about by Melvin Kaplan.
5. Down the line, perhaps we'll run some labs. But for now, diet, MB12, and supplements.
It's overwhelming, though, because this treatment will cost hundreds of dollars that we don't have every month. We don't know how we're going to do it. My parents are helping us quite a bit, but it's frightening. And bullshit, I might add. It's worth it, and I try not to get too caught up in the money aspect of it. But how can I not? We struggled before autism hit us. Now, we're utterly screwed.
The amount of work we've put into this diet has been unbelievable, and frustrating. DH and I spend a lot of time hungry! And our grocery bills are out of control. Thinking about eliminating soy and corn as well is a lot to take on. We will, but again... it's overwhelming. One step at a time.
I'm also trying to not worry about all of the supplements, therapy, diet, shots, Dr visits, food diaries, poop watching. AHHHHH. It's just so much. It's a full time job. And now I'm having to work more to pay for it all, so I can't always be here to make sure it's all getting done correctly.
I'm getting myself all worked up! And to think we left the appt today with smiles on our faces. I guess it gave us great hope, but it's still going to be A LOT of work.
I feel lucky to have this resource only 25 min from where we live. We saw cars in the parking lot from all over the US. Though HBOT isn't something we've thought much about at this point, it's still great to know that if we wanted to, we could.
Okay biomed mamas. Remind me to take deep breaths. :)
5 comments:
Sounds like a good visit. Yes, it is ALL overwhelming!
I've been too big of a whimp to do the shots so I'm giving oral MB12...let me know if you see any big improvments from that. BTW, I heard when you start the shots you're not supposed to add any other supplements/meds so you can see if it has made a difference or not.
I'm also interested in the vision therapy...I need to research that. I asked M's eye doc about it and he said not to waste our money (it costs thousands) but maybe there is something to it and maybe it can help his cross eye.
From one biomed mama to another: I hear ya, and I'm HERE for ya:) Everything you wrote sounds like my earlier posts. Overwhelming, yes. But - I hope you're as glad to find us, as we are to have found you *hug*. Here's to Riley!
I'm glad you liked your DAN! It's so important to like the doctor. Sounds like he understands since his son has autism.
And yeah, it is bullshit. Why is everything so expensive? I really hate it. We always have gfcf food in the house, but never have 'us' food. It's just not fair, our kids need this stuff and I had to close my home business and declare bankruptcy to pay for this stuff.
All of the stuff you will be starting, Ruby is on right now. I can tell you we saw huge things right away after starting the injections. Not every kid responds that way, but according to Dr. Neubrander most kids will respond at different levels. For Ruby it was mostly her appearance. Her belly is flat now, her hair shines, her skin is smooth and she glows now. She doesn't look sick anymore.
Ruby has made so much progress on MB12 and we are only 8 weeks in. Cod liver oil has been great for us too, the taurine is sometimes needed with it for proper absorption.
Okay, man I can ramble hey?
Two families I used to work with started their kiddo's on the B12 injections, and saw AMAZING progress! One of the families did the gfcf, B12, other supplements, chelation (sp?), and theraputic listening, and their kiddo now is pretty much at "typical" development. He also had huge huge jumps with the theraputic listening, although it was a struggle because he would really regress right before a major leap, so it was hard to watch.Whatever you do for R, know that you are doing so much more than alot of mom's out there, and whatever you do decide to do as far as therapy/treatment/etc, has to fit in with your family too, or you'll fall apart. I'm proud of you!
Thank you guys so much for the comments. It is so nice to know we're not alone in this!!
Post a Comment