Wednesday, January 20, 2010

5 weeks of Respen-A therapy for Autism



I am so behind in blogging. Here is the "chart" that M has daily to keep him on task and focusing (and basically going with the flow) at school. If he earns all of his stickers at the end of the day he gets to pick a treasure out of the treasure box at school. And a week's worth of all of his stickers gets him a prize at home to keep him motivated. So anyways, on January 11th he went back to school after being off for 3 weeks. The chart you see above is from his 1st day back!! Note the teacher's comments at the bottom. I couldn't ask for a better way to start back at school. There was no regression, no issues, and good listening which is always a good thing.

And last Friday I was able to speak with Elaine DeLack, the nurse who helped develop the product Respen-A. Wow, my head was spinning after talking to her. But she did say to think about reducing some of M's supplements while on Respen-A. I posted this information on Autism Action Plan and checked with Dr. Woeller to make sure he was in agreement. What we have removed is:

Turmeric
Epsom salt baths
Antioxidants (especially vitamin A, but are keeping 500 mg of vitamin C going)
Essential Fatty Acids (cod liver oil)
We may want to think about removing Gaba as well (tried this early on and had more meltdowns so we added it back in)

We are also doing calcium and magnesium at a 5:1 ratio, 2000 mg calcium to 400 mg magnesium.

So far things continue to go well. Here are some gains we've seen:

* Last week while mixing my son's supplements, I told him to come here and take them, he tells me "Coming mom" and came right over to me, totally new.
* That same day as he got out of the car for school I said the same thing I say everyday "I love you son, have a great day" and he turned and said "You too mom". Not only was it reciprocal speech but a new awareness that, hey, mom goes off and has her own day too. Big cognitive gain I thought in addition to speech.
* Just yesterday my son asked my husband "Daddy, do you know why I love you? Because you are the best dad in the whole wide world!". Spontaneous "I love you's" are very common, as is a kiss for his sister when he gets out of the car for school (which actually shocked me the first time that happened!).
* He has also been a lot more outgoing with people we meet at stores, etc. He talks to them, answers them and is very appropriate is speech and behavior.

Elaine DeLack was explaining how this product can provide mito support by the conversion of serotonin to its active form. I cannot explain it in any way shape or form like she did so I will not try.

Oh another tip, ditch the medical tape they send in favor of 2 round bandaids. It seems to work best when fully covered and in my experience, 1 round bandaid just doesn't cover it enough to stay "stuck". So, I overlap 2 rounds and it works great. She did also say that Dr. Fred Starr, the other developer, is currently workign with a child who has been on it for 15 months and has still not plateued so....this would appear to be more of a long term therapy thank I originally thought. But hey, it is easy to administer, I have yet to see any side effects (we are off melatonin as a matter of fact) and the progress keeps coming. So there it is, 5 weeks in. Still seeing progress and I am glad we did this therapy. I plan to continue for as long as we continue to see gains. I will keep posting more as we go!

5 comments:

Anonymous said...

Hello! I was fortunate enough to stumble onto this brilliant blog. My 8 year old daughter was diagnosed with autism at the age of 3. My husband and I have tried various therapies over the years but usually have to bail on them because we can't afford them. We even had a consultation 3 years ago with Dr. Woeller in Temecula, CA - but we couldn't afford him either. I'm really liking what you're experiencing with this Respen-A therapy. Was wondering if you are still using B-12 shots, Syndion, Aloe Vera juice, & Curcumin while doing the Respen-A? Have you ever tried clay baths? We're at the point now where the desperation to make our daughter well is at an all time high. She'll be 9 years old in April and we fear what her future will be like. Maybe we could discuss this further outside of this comment forum. Thank you for your time ! Peg S.

Unknown said...
This comment has been removed by a blog administrator.
Terri Burges Hirning said...
This comment has been removed by the author.
Terri Burges Hirning said...

Peg, first off, thanks so much for your wonderful compliment. It was always my wish to help other families going through the same things we are! I am glad you are getting something from this blog. I would love to talk with you more. Just shoot me an email with your contact info or we can converse via email back and forth. But in short, we are still doing B-12 shots, Syndion and aloe vera juice. But, we have stopped Curcumin since speaking with one of the developers, Elaine DeLack. She suggested we stop that, epsom salt baths, high antioxidants and possibly Gaba. I have not tried clay baths although wo do Far IR sauna therapy for my son. Do you know about Dr. Woeller's site, Autism Action Plan? It is very reasonable ($37 per month) and you get access to him 24/7. You can post questions, access his video and audio blogs, read about protocols, etc. There is a link on my blog page, right under my headline if you want to check it out. I love it. He is very prompt at responses, even on weekends and holidays. We have situations where I had a concern and it couldn't wait until Monday (supplement changes, reactions, etc). It was so awesome to have that. Just a thought.....

Anonymous said...

Hi- I am the mom of a 7 yo with Aspergers- we see dr. Rossignol in Melbourne Fl-- and I just spoke with Elaine this evening about Respen-A. It's really heartening to hear of positive results. I am really hoping for improved social behavior and lessened sensory issues. I am considering relocating to Tuscon and was told that I have to live in the Foothills school district. I was hoping you might know something about the schools in this area? Also, Syndion is not on my list of "suppies", what is it? Thanks!
Terri