Apraxia Awareness Day 2014

This year, the second annual Apraxia Awareness Day is on Wednesday, May 14th and May is Better Speech and Hearing Month.

Awareness-Day-Logo-3

April marked Autism Awareness Month and based on the things I read online, it seems to be the consensus that there is now plenty of *awareness,* but not enough *action.* In other words, many moms felt that it was pointless for a person to post an awareness picture on their Facebook page and then go about their happy day.

Their frustration was … What are we as a country and as citizens doing to improve the autism epidemic? We’ve got to do more than “Light It Up Blue.”

I know apraxia of speech is not at this stage in the game yet. I still run into plenty of people who have never heard of apraxia. We are still in the murky waters of awareness … figuring out where we are and yelling for help. Yes, we as parents of autistic and apraxic kids alike, are taking action the best way we know how, but it needs to be a community-wide effort … citizens, teachers, government, speech therapists, and doctors all working together.

How long will it take to get there?

The first Autism Awareness Day was in 2007, so these parents are a few years in. I would assume that everyone in this country has heard of autism and I agree that we need to transform out of awareness and move into action. After all, the latest CDC statistics show that 1 in 68 children have autism and for boys, the numbers are even greater … 1 in 42.

What are the current apraxia of speech stats?

We have a sketchy number – 1 or 2 children per 1,000 – but nothing definitive. Is the CDC questioning parents about apraxia? Not that I’m aware of. I’m assuming it is a supply and demand problem. Too many kids with problems and not enough time or resources to help them. After all, does the CDC have time to report on apraxia when we have epidemic autism stats and ADHD weighing in at 11 percent?

I suppose us apraxia folks are clumped into the “developmental disabilities” statistic and the CDC last reported those stats in 2006 – 2008. Six to eight years ago. And the stats then were 1 in 6 kids have a developmental disability. What are the stats now in 2014? I’m assuming this number has also compounded and become more prevalent among today’s children.

There is a problem.

What are we doing as a nation to lower these frightening statistics that continue to increase year after year? What can we do to ensure that apraxia parents don’t feel like the autism parents do seven years after the founding of our awareness day?

I certainly don’t have all the answers, but I do have a few small steps to get us moving in the right direction.

First, have you registered your apraxic child on the CASANA research registry? This is something simple that every parent can do and it is something that SLPs can recommend to parents. Our cases need to be documented. The CDC and the government is not doing it. It is up to us as parents to submit our information so that a few years from now, CASANA (if they choose) will have the ability to draw some conclusions.

Second, visit CASANA’s page for ideas on ways you can pay it forward on Apraxia Awareness Day.

Last, I have a personal project that I would like to get started.

There are a handful of parents who have tested their apraxic child for nutritional deficiencies. This type of testing is typically done by a holistic/integrative medical doctor. A diet and supplement plan is created based on vitamin, mineral, and amino acid deficiencies, food allergies, sensitivities, and/or gut issues.

If you have explored this route with your child, please contact me via email at tstarmom5@yahoo.com. Or, if you are part of an apraxia or biomedical Facebook group, I’d greatly appreciate it if you shared this request. I have a brief survey that I’d like for you to fill out. I do not want any personal information from you. I don’t want your child’s name, birthday, or where you live. If you have explored this route and have seen no results, I still want you to contact me.

I feel that this has been a big part of Jake’s accelerated progress, but I’m curious if other children have experienced the same results. No one is documenting this piece of the puzzle. I want to provide unbiased information in my blog posts and I’d like to compare a group of these children receiving this type of treatment.

I have lots of good material lined up for the month of May and I will be posting a few times a week. You can expect my usual posts, other parent perspectives, an expert opinion, and a giveaway or two. If you are not a subscriber already, now would be a great time to sign up to receive these posts in your inbox.  

Supplements

This month I have documented Jake’s journey with biomedical treatment. As I said last time, this is a three-part process and one component to the program is adding supplements to his daily routine. These are the supplements that Jake is currently on …

Supplements Jake is Currently Taking

Powder vitamin B from compounding pharmacy (B1, B2, B5, B6, B12, FA). Powder Coenzyme Q10 from compounding pharmacy. Glutagenics by Metagenics – main ingredient glutamine, an amino acid. Garden & Orchard Blend Juice Plus. Springboard FloraBoost Probiotic for Kids. L’il Critters Gummy Vites Complete.

1. Probiotic – FloraBoost is an excellent probiotic that Jake cannot live without. Last week I was out of it for four days and was going to wait until my follow-up appointment this week to pick up more. After just a couple of days without it, the eczema on his foot started to come back in the predictable places. I called my husband and told him to go pick up some on his lunch break asap! There are many probiotics out there, but quality really is essential. A good probiotic will have at least 5 billion units with 4-5 strains.

2. Glutagenics – According to the label, “Glutagenics features three key ingredients – glutamine, deglycyrrhizinized licorice (DGL), and aloe – that are designed to support the integrity and healthy function of the gastrointestinal lining.” According to Prescription for Natural Healing,”because glutamine can readily pass the blood-brain barrier, it is known as brain fuel. In the brain, glutamine is converted into glutamic acid – which is essential for cerebral function. It also increases the amount of GABA, which is needed to sustain proper brain function and mental activity.”

3. B vitamins – This is a prescription from the compounding pharmacy that is specially mixed to meet Jake’s nutritional needs. B vitamins are beneficial for the health of nerves, brain function, skin, eyes, hair, liver, mouth, and for maintaining healthy muscle tone in the GI tract.

4. Coenzyme Q10 – Another prescription from the compounding pharmacy. CoQ10 as it is commonly called, is an antioxidant that is necessary for the proper function of many organs and chemical reactions in the body.

5. Multi-Vitamin – From September through mid-November, I gave Jake Flintstones gummy vitamins. This was a problem. These vitamins have gluten in them and also gelatin. Jake cannot have either one. (Some gelatin is made from crushed pork bones and he is allergic to pork.) I was recommended L’il Critters from the GFCF Facebook group that I am a member of. Jake loves them and they are a great allergy-friendly product.

6. Juice Plus – Jake started taking Juice Plus in May of 2011 when he was 2.8 years old. I initially put him on it because he had been so sick with ear infections, fevers, colds, and asthma. I am proud (and a little surprised) to report that this coming up May will be two years since he has had a problem with any of these things. He got a stomach bug last January, but that is it! Zero doctor visits.

7. Epsom salt baths – According to Dr. Martha Herbert in the book The Autism Revolution, “Epsom salts, which are absorbed through the skin during a bath, are made of magnesium and sulfate, two substances very important to cell and detoxification biology. Many parents swear by them for helping their child calm down and sleep better, and for helping erase the dark circles under a youngster’s eyes.” I couldn’t wait to try it and while we have not been able to do it on a consistent basis because of his skin problems, our doctor has recommended that Jake take two of these baths per week. His skin is now beautifully perfect and I’m excited to add it to our routine.

When I first put all of these supplements on my countertop back in September, I remember thinking, ‘Wow! That’s a lot!’ Now, it doesn’t seem like a big deal. The first week or two was the most challenging. Books that I had read prior to starting this process said that at first kids put up a fight, but then they end up loving their vitamins. That first week when I had him pinned down in the living room, with my eight-year-old watching in amazement, I had my doubts. Now, however, he too, loves his vitamins and will not let me forget about them.

The glutamine and probiotic goes into his applesauce each morning at breakfast. I mix the B and CoQ10 into about two tablespoons of apple juice when he is done with breakfast; taking them with a big meal has decreased the crazed energy surge he was having. (I was giving him these at 10:00 a.m. with a snack and he’d be running around, energized and unfocused for about an hour). I give him the multi-vitamins and Juice Plus at lunch and dinner.

I have tried Nature’s Plus Animal Parade Kid Zinc Lozenges made with echinacea, olive leaf, and slippery elm, which he loved, but I stopped for allergy reasons. We have also tried vitamin E, but the pure form that we were using had almond oil in it and he is allergic to almonds. We had to stop taking it because of wheezing, runny nose, and red eyes. Jake has not been able to take omega-3 fish oil because of his fish allergy, but I’m about to start giving him “Fish-Free Omega Plant-Based Oils” omega 3,6,9 supplement by Nature’s Secret.

Sources:

  • “Prescription for Nutritional Healing” – Fourth Edition, by Phyllis A. Balch, CNC.
  • “The Autism Revolution,” by Dr. Martha Herbert, Harvard Health Publications, 2012.

Disclaimer: All data and information provided on this site is for informational purposes only. Supplement statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure, or prevent any disease or disorder. This supplement program was designed to meet my child’s specific nutritional deficiencies. Always consult with a doctor before beginning any diet or supplement program.