I wondered how to write this post and I thought I'd start by saying that I can't stress enough how this particular plan is very particular to Mae. Autism is a spectrum and while there are similarities among people on the spectrum just as there are similarities among neuro-typical people and among all people, there are also differences. What helps Mae might be detrimental to someone else.
I read a study this last week where a group of doctors said that they found four subtypes of health problems among people with autism. One involved gastrointestinal problems and that seems to be where our little ray of sunshine falls because of the tummy troubles that she has (and then I spent an hour trying not to have any panic attacks that they said that those problems are strongly associated with a risk for seizures).
Mae's gluten free casein free diet is the foundation for the supplements and without it the supplements are almost pointless, since gluten and casein cause so much pain for her that pretty much everything else is pointless. A steady routine and therapy also are part of our schedule now and we've found that if any one of these parts of our day is taken away pandemonium follows.
And so here is what we do to help our little Mae be her happy, healthy self:
- Her diet is gluten and casein free and natural.
- She has ABA therapy six days a week in our home. When the local autism center opens she'll start speech and occupational therapy. The occupational therapy is what we're the most excited about because she's such a sensory seeker.
- She does daily therapy with me as I'm being trained in a study at the local university.
- Every night I make up a special bath for her with 1 cup epsom salts, 1/4 cup baking soda and a few drops of lavender oil. She loves these baths and they really help her relax before bed. After her baths and in the morning I apply "Boomer's" lotion*. Mae has realized that her skin feels much better when we put the lotion on and sings "rub, rub, rub" while it's being applied.
And then there are the supplements. They are definitely helpful, but they're also my least favorite part of our routine because it's a struggle to get them all in. After months of slowly adding in supplements to Mae's day, we're finally getting to the point where almost everything has been added in (in the list below we haven't yet added in Dimethylglycine and we're starting Glutathione cream this week and Saccaromyces Boulardii when it finally gets here). In case you're wondering, some people with autism seem to have a harder time absorbing vitamins and that's why there are so many of them in this plan.
And while below is my schedule for the day it certainly does have a tendency to get mixed up a bit as I have to get creative to convince her to take this many vitamins over the course of a day, all while remembering which supplements can't be taken together.
|All of the crushing and|
dicing of pills still feels weird.
Since this picture was taken
I bought a little pill slicer/crusher
to make things easier.
Cod Liver Oil
Taurine- 1/2 tablet
Vitamins C and D
Grapefruit Seed Extract
Colostrum (Ora Mune Liquid Gold Colostrum which is gluten and casein free)
Saccaromyces Boulardii (a probiotic)
Digestive Enzyme (1/3 capsule)
Probiotic (lactobaccilus acidophilus)
The changes we saw early on with the supplements (especially taurine and cod liver oil, oddly enough), were enough to propel me along to keep following the suggestions in Doctor Sears' book.
And that is our keeping Mae happy and healthy strategy at the moment. It's pretty flexible as we learn what works and what doesn't, what helps and what doesn't.
Now I just need to count the days until going outside and playing in the sunshine becomes a part of our routine again too!
*"Boomer's" lotion is 1 part vaseline to 1 part crisco with an ounce of cortisone (enough to fill the rest of the large sized vaseline container) mixed in.
What a routine! I know it's tough, to figure this all out and keep at it. Just some more food for thought: (and possibly more supplements? OH NO! :-) We have had very good success with gastro problems for my elderly mother (had a left side stroke so has some gastro problems due to paralysis - no walking, paralysis of left side abdominal muscles inside and out). She had at times not only constipation but also diarrhea. Last time the diarrhea was very severe, and was diagnosed as some kind of "infection" in her colon, for which she got anti-biotics (Zithromax) and so after that was done we began a long course to restore her bowel. We used a good probiotic (Dr. Ohira's), virgin unrefined coconut oil (in capsule form, 1000 mcg 4 per day, (we also heard coconut "milk" is a good gastrointestinal aid) (also helps with mental acuity) and 1/2 oz aloe vera (brand name: George's Aloe Vera, refined, distilled and filtered- no scent, no taste) added to 1/2 cup yogurt. After a month we saw good changes, more solid bowel. After a year her bowel was again normal; in fact, no constipation or diarrhea. We still keep this up because we want to maintain her gastro absorption and function.ReplyDelete
I also wanted to comment on the $400 anti-fungal you mentioned for Boomer on your Facebook page (I'm not on Facebook so can't comment there.) We have the anti-fungal Nystatin Triamcinolone Acetonide cream prescribed for my mom because of incontinence issues, and need to stave of the inevitable skin irritations (the diaper rash issues of infancy) that often occur. A few years ago a tube of 60 mg was about $11.00. All of a sudden, the cost went up to $160, then $240 and now stands at $360 PER TUBE (a tube the size of a hydro-cortisone cream). It is astounding! My mom has Medicare Part D, and so with her insurance we pay a small co-pay, but still, no one can answer why this stuff is so darn expensive.
All the pharmacist could tell us is that some of these generic very cheap medications are skyrocketing because most pharmaceutical companies stopped making them because they just weren't cost effective. So now only one or two companies are making these anti-fungals, and so they raised the price 300%. (Taro Pharmaceuticals is one. Their stock price has also skyrocketed.) Now, I don't know if that is the real reason, but it is astounding something that was so cheap all of a sudden costs like gold. It's been like this for about 3 years.
I hope once you find what works for Mae you can keep it up easily, and keep researching for other supplements that might be helpful. I'm sure she feels much better too! Thank you Mommy!!
God Bless ~ Bonnie
I forgot to mention in my previous post - for diaper rash my mom said back when we were babies she would use a diaper (cloth) soaked in heavy cream overnight (with plastic pants over it?) to cure really bad diaper rash. Don't know if it works, but thought I would float it out there.ReplyDelete
And by the way, do you find any "natural" remedies out there for severe diaper rash? I know White Tea is an anti-fungal, and so is Mustard ESSENTIAL Oil. Don't know if this stuff would help.
Also, if you are going to try to get the anti-fungal cream ($500!!!!) if you have a Costco or Sam's Club, or Walmart nearby, call around and see if they can give it to you a little cheaper. God Bless. ~ Bonnie
I was so curious about OTC and home remedies for fungal infections, I was looking things up on www.thepeoplespharmacy.com. There were a myriad of suggested treatments for different fungal skin infections, but the one I found most astounding was vodka! I guess you dilute it 1:1 with water and can add some nice scent, like orange oil, and wipe or spray it on. Have no idea if it works, but thought I'd pass it on.ReplyDelete
Also worth trying: witch hazel, cornmeal paste (let soak 1/2 hour before applying), or OTC creams like miconazole, terbinafine, clotrinazole (but I would wonder if these are safe for a baby's skin).
Will say a prayer this goes away FAST! God Bless. ~ Bonnie
I just wanted to share this info with you just incase you had not heard about the GAPS diet for recovering from Autism naturally.
Here is the link: http://articles.mercola.com/sites/articles/archive/2011/07/31/dr-natasha-campbell-mcbride-on-gaps-nutritional-program.aspx
After reading this and researching further it has really helped our family learn a lot. We eat organic now and my 15 mo. daughter has been taking daily probiotics since she was 3 months when I first learned. The health of our gut flora is so important and I am thankful to have discovered all of this great information sooner than later. Hope you like it too. :)