Sunday, January 3, 2010

Respen-A therapy in Autism

I mentioned on my blog before that we were interested in starting the new therapy called Respen A. Since we were actively fighting clostridia through the use of flagyl and also using diflucan to avoid a yeast flare as a result, I decided to wait for about a week until we were all done with flagyl and diflucan was going well and behavior was stabilized. We started on the first day of winter break, 2 weeks ago yesterday. I also wanted to try this over the break so that I could monitor any possible negative reactions instead of having him go through these at school/therapy/etc.

By day 2 we noticed increased affection and attention to members of our family.

By two weeks in, each day is filled with new concepts, new awareness and new emotions it seems. My son seems to be seeing things that literally have been right in front of his face for months (if not years) for the first time. He is reminding us about his supplements and even reminding us to mark things off on his daily chart of foods/supps/etc. Now mind you, we've done supplements and charting for years and never once has he reminded us about charting or dosing. My daughter was doing something funny and my husband and I were laughing about it yesterday, he came running from another part of the house to ask "what's so funny??". This was a first. A park outing last week with 6 kids (ages 3 - 12) was a good example as well. All 6 kids were playing "pirate" and running between a grassy area and the playground. There was my son right in the middle of things, playing along the whole time (about 2 hours). He wasn't wandering off, playing by himself or off talking to himself. I am anxious to hear what his teacher thinks when he goes back to school in a week. He was a child who really did compensate well socially given his challenges but these changes are huge. We have also seen less self talk. He will regularly ride bikes on our street with neighbors but even after they have walked/ridden away he would talk to them or himself. This has really diminished since starting Respen A.

What is Respen A? It is a little brown disc. It looks a lot like a pop dot if you are a crafter or a scrapbooker. It is round and raised, not flat like a smoker's patch and soft and mushy. It comes with pieces of paper stuck to both sides that you just peel off. Then you use medical tape to keep it in place in the middle of the back (or somewhere that they cannot get to to take it off). You put it on in the morning and give 2000 mg of calcium as it can deplete calcium. Then you take it off at bath/bedtime. Very simple, very easy. It is a homeopathic remedy but still requires a prescription. The pharmacy also cannot ship to AZ so you have to have someone else in another state (like CA) where they can ship to and then that person would have to ship it to you. But, in my estimation, well worth the effort!

So there is the update after 2 weeks. I hope to have even more to update in the future. Dr. Woeller says to try this therapy for at least 6 months. So far I am very happy with it and have not seen many side effects if any. The only possible side effect is trouble falling to sleep at night. We've reintroduced melatonin with very positive results. Other than that, we've not seen any negative behaviors.

14 comments:

Shari Goodman said...

Wow. I would love to try this out! I need to chat about this! Do you need a prescription?

Terri Burges Hirning said...

Yes, lets definitely chat. It does require a prescription, even though it is homeopathic. And as far as I know, only one pharmacy has it right now, it is one out of Washington and they do not ship here. We have to have it shipped to family in another state and then shipped to us from there. But it sure is working!

Anonymous said...

It isn't a homeopathic remedy, it is allopathic. As once the substance is stopped regression occurs. Homeopathic treatments are one off usually or for short periods of time.

It is sold as "homeopathic" because the "Resperedine" is diluted 4X.

Terri Burges Hirning said...

Anonymous, have you experienced regression with Respen-A personally? Given that all of the information on the product refers to it as a homeopathic remedy, that is how I will refer to it on my blog as well. I understand that this herb, resperidine, has been used for many years in the treatment of Autism, not in this diluted, disc form however.

Elaine said...

Terri,

I apologize for the inconvenience of the current pharmacy not being able to ship into Arizona, but they can only ship into states they are licensed in. I am currently working to get it so that it will be able to be shipped into all 50 states. I will let you know when I have accomplished this. I anticipate it will be by the end of January.
Elaine DeLack

FredStarrMD said...

Reading this makes me really happy. It is great to hear results like this.

Fred Starr

Angela said...

Hi, i just received the package of Respen-A for my son this morning. I is supposed to be refrigerated but it has been in transit in the mail to me since Thursday night from the pharmacy. They had to ship it to CO, then i had a family member ship it to me from there on Friday. Because of the holiday i didnt get it until this morning, Tuesday. Do you suppose it is ok to use? Its not extremely hot but they didnt put the gel pack to keep it cool? The pharmacy wont open for a few hours and i am really anxious to try this on my son. Please help if you can, not sure what to do.

Terri Burges Hirning said...

Hi Angela! I was told from the pharmacy that it would be OK if it was left at room temp for a few days. If you are asking what I would do, I would use it this morning and then call the pharmacy when they open. I hope that helps!! Both developers of Respen-A, Elaine DeLack and Dr. Fred Starr have commented. Maybe they will check back and comment further.

Jackie said...

Terri,

How is the Respen-A trial going with your son?

Has he returned to school yet?

Thanks for sharing your experiences on this, both positive and negative.

54585458 said...

Terri:
Here is the new website for
RESPEN-A which includes a login in for data collection for healthcare practitioners.
www.respen-a.com

Nancy Campbell

Elaine said...

Hello Terri, I just wanted to spread the word that we are now having webinars twice a month, the first and last Tuesday every month regarding Respen-A and other therapies and findings. The first Tuesday each month will be at 7:00 PM PST and the last Tuesday each month will be at 7:00 PM EST. Dr. Starr will be presenting at most of the webinars and will take your questions during the webinar. We also are encouraging parents who have experience with their child using Respen-A to participate and answer questions and give comments so that we can all learn possible ways to help the most.

If people are interested in attending the webinars, email a request for an invitation to elaine@edmsllc.com Thanks.

Elaine DeLack

Dr. Kurt Woeller said...

Terri,
Great information about your experience with Respen-A and other therapies. In my experience using Respen-A with good number of kids over the past 6 to 7 months I have to say that I am quite pleased. Kids seems to be more self-regulated with improved cognitive and social skills, as well as improved language too. There is an interesting connection between cholesterol deficits, oxytocin receptor function and respen. There is a lot to learn about these therapies, but the information Elaine DeLack has provided I feel is a major contribution to the field of biomedicine for autism.

Rachael Riveira said...

Terri,
I just wanted to spread the word that there is now a Respen-A facebook page being used for patients to chat about thier experience and share their questions and answers regarding the Respen-A. It is at http://www.facebook.com/home.php?#!/pages/Respen-A/123142187742874
I know you are very involved in the autism community and would love it if you could pass along this site to hopefully give others a site to chat about Respen-A as well as on your site.
Thanks so much! Hope all is well!
Rachael Riveira, RN
Respen-A

Rachael Riveira said...

Terri,
I just wanted to spread the word that there is now a Respen-A facebook page being used for patients to chat about thier experience and share their questions and answers regarding the Respen-A. It is at http://www.facebook.com/home.php?#!/pages/Respen-A/123142187742874
I know you are very involved in the autism community and would love it if you could pass along this site to hopefully give others a site to chat about Respen-A as well as on your site.
Thanks so much! Hope all is well!
Rachael Riveira, RN
Respen-A