I have been collecting a bunch of bookmarked pages and emails with all sorts of information that I thought might be useful but didn’t have time to go through right then. I am finally getting to this project and wanted to share with you the fruits of my labors. 
No-Food Birthday Cakes at American Partnership for Eosinophillic Disorders
I was doing some reading on eosinophillic esophagitis (for me, not my son), and found this great article at about how to make birthday cakes fun for a kiddo who can’t or won’t eat cake.
There are some very clever ideas here, and I’m sure something will jump start your creativity for the next celebration. Luckily, I have a few months to think about this one, but I definitely want to do it for Michael’s next birthday party.
What to Ask of An Occupational Therapist at The Thinking Person’s Guide to Autism
Wow! This guest post by Dr. Boucher from TherExtras blew me away – how I wish I had something like this when I was getting started!
No matter, I’m sure I will use it many times in the future and adapt it to any professional I am seeing for my son. And I’m also thankful to have been introduced to another great blog with tons of helpful information.
Autism Risk & Safety Management
This is the site of Dennis Debbaudt, a leading advocate for autism training for first responders. With the increase in encounters between law enforcement and people with autism, this is a crucial area of need, and this site has a lot of information about keeping your child safe and reaching out to the community.
I know several members of our Autism Society chapter take gift baskets to the police stations locally on their Memorial Day (where they remember fallen officers) and also ask for the opportunity to speak with them about autism. It has always been very well received by the officers.
National Parks FREE Access Pass
Did you know that a person with a permanent disability can get a free lifetime pass that is good at federal recreation sites? It is available to people who are US citizens or permanent residents and would also cover the person’s caregivers. The site has full details of the eligibility requirements and how it works, although you do have to obtain it in person so they can verify residency and disability documents.
Now that Michael is interested in traveling to different places, I am definitely going to get one of these. It will be a big help to the vacation budget!
We got our results from the visit to the DAN! doc who we started seeing through Pfeiffer Treatment Center (I wrote about our first visit earlier). They were very interesting and supported the fact that there are a couple of areas out of balance.
THE RESULTS
First of all, his kryptopyrroles were quite high and his zinc levels were below the normal range, indicating the presence of pyroluria as suspected. His zinc/copper ratio and the amount of unbound copper were both somewhat high, and the amount of copper-binding protein was lower than normal.
A couple of things I wasn’t expecting to hear were that his vitamin D level is deficient and that his histamine level is elevated. He also had low ferritin, indicating that his iron stores are low, which isn’t so surprising given his diet.
The organic acids test showed insignificant amounts of yeast and normal bacteria, although he did have a somewhat high arabinose level. And finally, the X-ray showed mild to moderate fecal retention.
THE PLAN
So, we have started the compounded supplements along with a variety of other items that were recommended by the doctor. We haven’t gotten to the full plan yet, but most everything has been started. Here’s a breakdown of what we are giving:
With breakfast
- Compounded supplement including Vitamin C, B6, P5P, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Citrate and Vitamn D
- Inositol and Taurine (for calming and aggression)
- Zeolite (which we have been using for several months for detox)
- L-Carnitine (for motility)
- Probiotics
With supper
- Compounded supplement including Vitamin C, Vitamin E, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Picolinate, Iron Gluconate and Vitamn D
- Inositol and Taurine
- Zeolite
- L-Carnitine
- Probiotics
At bedtime:
We were using GABA for calming but the nurse had us discontinue it since we were seeing any changes. That is when we introduced the inositol and taurine. I can’t say that I have seen a difference, but they are both safe and helpful in other ways, so I’m going to give them some more time.
STILL TO BE ADDED
We still need to add cod liver oil to the regimen. My husband has actually been taking the CLO that I had. When I ordered more, I tried a different brand and he remarked on how much better it tasted. When I looked at the bottle, I realized that it was just fish oil with the essential fatty acids and no vitamin A or D, so that’s probably why it tastes so good! I need to order the regular CLO and then start giving that to Michael.
I also have a calcium/magnesium liquid that he is supposed to take, along with a third dose of L-carnitine, at bedtime, but he hates it due to the creamy texture. We are also supposed to do a bowel massage each night to help with motility.
The other thing that I did faithfully at the beginning and have slacked off on is applying Evening Primrose Oil to his skin at bedtime. This is an omega 6 which has been shown to be helpful in treating pyroluria, along with the high doses of B6 and zinc.
What a week! I received my son’s IEP on Tuesday (we met the previous Thursday) and unfortunately there are still some outstanding questions, at least on my end, that need to be resolved. So I had to send back the NOREP (written notice form) requesting another meeting.
Here are a few of the notable posts I found this week:
Decision Points at TherExtras – a fascinating and thought-provoking play by play of a therapy session from the therapist’s point of view
It’s Summer Camp Time Again…HELP! at Spirit of Autism – I can’t find a permalink to the post, but, if you scroll down, it is from April 17th and has a great list of questions to ask when evaluating a summer camp for your child with special needs
Turns out Autism IS associated with GI disorders at Adventures in Autism – results from an Autism Treatment Network study that were recently published
Happy Mother’s Day to all of you special moms out there!
I’ve been too busy with a psychiatric evaluation and an annual IEP meeting to keep up with email, let alone blog, but there have still been a number of great articles that caught my eye this week.
My Crystal Ball and My Checkmark Chart at Welcome to Normal – My last token economy system for home had kind of fallen by the wayside with the recent difficulties in school, especially since I wasn’t letting him play the Wii or computer if he was aggressive that day. It kind of makes it hard to earn privileges at home when you aren’t allowed to redeem them.
But after reading this and seeing how Caitlin is converting the checkmarks to money, I thought that might work for Michael at this point in time. I am making them equal to a dime, which is the same amount he gets at school (although theirs go towards school dollars and not real ones, of course!). Michael has been highly motivated by it for the last few days, so hopefully that will continue.
Interview With Taylor Morris — An Exceptional Teenage Girl with Aspergers at Hartley’s Life with 3 Boys – A fascinating interview with a young lady who shares about her experiences with sensory processing disorder and Aspergers.
In Honor of Dr. Stanley Greenspan at 5 Minutes for Special Needs – Dr. Greenspan, who among many other things started the D.I.R./Floortime therapy, died on April 27th following a stroke. He will be greatly missed.
Eating for Autism at autism community – This is a review of a book by Elizabeth Strickland regarding the GFCF Diet and having a healthier diet overall. I’m wondering if any of you have read or used this book at all and whether you like it. One of the things I need to focus on with Michael is improving the quality of his diet, which has been difficult due to his sensory issues and the number of different foods and textures that he avoids.
Well, that’s is for this week. I’m clearing out the GReader and starting fresh in the morning!
I last posted about my son’s biomedical treatment last October, when I was fed up with the DAN! doctor we were trying to see and decided to cancel our follow-up appointment (that had been rescheduled more than once due to testing delays).
Well, since then, we were able to go to the outreach clinic held by Pfeiffer Treatment Center, which is a non-profit center specializing in treating biochemical imbalances. They are located in Warrenville, IL, but hold an outreach clinic twice a year in Annapolis, MD.
I took Michael down there on March 9th, the day after his first chair-throwing incident and the day before his 8th birthday, and I was very impressed with the whole operation. They basically take over a floor of a hotel and you see the nurse and the doctor, who is a DAN! doctor by the way, and also give a urine sample there. The blood draw was done at a LabCorp literally two blocks away.
The doctor told us that he suspected pyroluria based on Michael’s symptoms, but that we would know more once the testing was done. He gave me a starter supplement and a short list of other supplements to use until we heard back from them. He also had us do an OAT (organic acid test) to check for yeast or bacteria and get a X-ray to check for fecal retention.
Here are the supplements we started/continued after the first visit:
- Pfeiffer starter supplement (includes Vitamin C, Vitamin E, B6, Magnesium and Zinc)
- Evening Primrose Oil (we did transdermal, this oil is an Omega 6 and recommended with pyroluria)
- GABA for calming (we didn’t really see any effect from this one)
- Continue the Zeolite
- Continue probiotics once the OAT sample collected
- Continue melatonin for going to sleep
- We added L-Carnitine after the Xray showed mild to moderate fecal retention as it is supposed to help with motility
I started very slowly with the supplements, just juice at first and then mixing in a little bit at a time until I got to the dosage. He has been surprisingly compliant, for which I am very thankful. Hopefully that will continue as we start his customized plan. I’ll post more about his results later.
I shared recently about how I had decided to start taking Michael to see a psychologist and promised an update on how it’s been going.
One of the original things that motivated me to take him was a concern over his levels of anxiety and his self-esteem. Whenever he would get frustrated about something or be sent for a timeout, he was constantly saying things like, “Everybody thinks I’m stupid” and “Nobody likes me,” usually at the top of his voice as he stormed off to his room.
After the psychologist met with me and then talked with Michael for a while, she felt that his feelings of low self-esteem weren’t pervasive and that it was more a function of him just coming out with something drastic when he was extremely frustrated, since he didn’t really know how to handle that much emotion. And, sure enough, within a month of so, he switched from yelling about how horrible he was to how horrible WE were, as is “I hate you” and “You are the worst parent ever!”
(At this point, I am ignoring the yelling as long as he is actually on his way to his room for some alone time – which is sometimes a mom-ordered timeout and sometimes a self-imposed break.)
I took him to meet with psychologist weekly for a while, and then she suggested having him join one of her playgroups, which each have up to 4 or 5 kids all close in age/functioning level. He started going to the Kindergarten-2nd grade group and enjoyed it at first – partly because he had started being aware that he was different from the other kids at school and wanted to meet these other kids I said were out there who “thought like him.”
After a while, though, the group was ready to move into a more free-form time, where the kids would negotiate what games or activities they would do together. Michael and one of the other children were having trouble with this and still needed to focus on the challenges of actually playing together, especially with non-preferred activities. So she split the group into two and continued providing a more structured environment for the one Michael now attends.
Over the past year, he has definitely shown some progress in his ability to control his whining, continue playing a game even when he thinks he might lose (in group and at school, that is, God forbid anyone should beat him in MarioKart Wii!) and allow another child to contribute to his imaginary play. The psychologist is actually talking now about having him go back to the other group once in a while and see how he does with it.
I still occasionally make individual appointments with her to discuss specific concerns I may have and for her to work with him one-on-one. Overall, it has been an extremely rewarding experience!
