Friday, April 6, 2012
Recovering from Sensory Processing Disorder – Skylar’s Story
This blog has been mainly about my first daughter, Marley. She has autism. However, there is another story here. My second daughter, Skylar, born three years later, was diagnosed with sensory processing disorder at fifteen months old.
In stark contrast to my first child’s birth, my second daughter came into this world flawlessly. I was on bed rest for four weeks to control contractions, but she came at 39 weeks and was a beautiful, healthy baby. She nursed well. She slept well. She was a content and connected baby. I breathed a sigh of relief and thought to myself…this is what it is supposed to be like.
Being very suspicious of vaccines now, I put my new baby girl on a spread out vaccination schedule. At 4 months old, she received her first shots...both HIB and Polio. The next month, she received her first DTaP. This was also the time that we started her on solid foods. She still was doing well. She ate with no problems. However, I started noticing problems around 8-10 months old when I tried giving her any food other than purees. She would cry and scream when any texture other than a soft puree touched her mouth. I also noticed that she would flap her hands when she got excited. But she was VERY social and very connected and babbling.
As more time passed, her eating got worse and I started noticing things like she didn’t like to get her hands dirty or messy. She couldn’t stand to put her feet in the grass or on sand. These things would lead to meltdowns. I finally got her to eat a few cheerios…something not pureed, so I felt I was making progress. I should have noticed more but I was dealing with a non-verbal three year old with severe autism. My attention was mostly focused on my oldest during this time.
That all changed when things came to a head the winter of 2006. Skylar was about to turn one and she had had an ear infection for over a month. We went back to the doctor and it still had not cleared. They told me I needed to make an appointment with the ENT and they would try a fourth antibiotic to clear it up. I came home distressed and frustrated. I had a sick child and the meds couldn’t seem to heal her. That is when I realized that everything I was doing for my child with autism, could likely help my second child with these sensory issues. I did NOT fill the Rx that day. I immediately took her off dairy. Within a week, the ear infection was gone.
So now healthy, my one year old was due for her third DTaP shot according to my own schedule I had set up for her. So against my better judgment, I took her in to get the shot. Then the walls started to crumble. She screamed and cried inconsolably for about 2 days. Then she would not eat the cheerios we had worked so hard to get her to eat. She stopped babbling. She was going over the cliff right in front of my eyes. I was scared to death. I knew what I had to do. It was time to get my second child the same kind of help my first daughter was getting. My oldest was starting to get better using biomedical interventions. I was sure it could help my youngest as well. We stopped all vaccinations.
She started OT at 15 months old. The evaluation revealed she had sensory integration disorder and motor planning difficulties. (She was a late walker—about 14 months old.) She had difficulties with loud noises. She could not tolerate bright lights. She always wore sunglasses outside. She had difficulties with where her body was in space. She was an avoider, where my other daughter was a seeker. That was another reason I didn’t pick it up right away. Where my first child had put EVERYTHING in her mouth, Skylar never put ANYTHING in her mouth.
Once we started brushing therapy, she finally started to talk. She said her first word at 15 ½ months. She said “Hi”. But her language was still significantly delayed. So we made an appointment for Marley’s DAN! (Defeat Autism Now!) doctor in New York to see Skylar as well.
Dr. Ken Bock…one of my favorite people on this earth…was very glad we brought Skylar in. He considers kids with severe sensory problems to be on the autism spectrum. His office did tons of testing including stool samples and blood work. He tested her metabolic system to be sure she was excreting toxins properly. He tested her thyroid function. He tested all her vitamin and mineral levels. He tested her for yeast in the gut.
I asked him why kids have sensory problems. He told me there are many reasons, but the top four are: problems with sulfation in the body, B6 deficiency, candida or fungal overgrowth in the gut and heavy metal toxicity. I told him how Skylar’s problems got worse with her third DTaP vaccination.
A few weeks later, the test results were in. Her lab work showed low fatty acids (Omega 3’s), Low GLA (Omega 6), Low Vit E, Low Iron, Low Zinc, low selenium (which makes glutathione, the body’s largest antioxidant), and low chromium. So it’s no wonder that her language started to really take off once I started supplementing her with Cod Liver Oil and Vit E.
Her stool sample showed she had a bacterial infection in her tummy for which she needed antibiotics to clear up. It also showed yeast overgrowth for which he prescribed a mild antifungal. Thirdly, it showed she was not making any “good” bacteria” in her tummy which accounted for her numerous and loose daily stools. We put her on a strong probiotic twice per day. An IgE blood test revealed she had an allergy to eggs. And she was already off dairy.
Now, armed with all this information and a plan, I was sure that she would get better. And she did. But not all at once. By age two, she was very verbal but she still required weekly OT. Especially for the eating. When she reached age two, and still would not eat anything but 100% pureed baby food, the OT begged me to take her off the baby food. I was scared to death that she would starve. But slowly, we made progress. I caved and let her eat dairy again just so I could get her to eat something.
Fast forward to four years later. Skylar had learned to eat a turkey sandwich, macaroni and cheese, raw red peppers and cucumbers along with many crunchy foods. She was age 5 now, and going to kindergarten in the fall. Her sensory integration dysfunction was almost unnoticeable except for her eating difficulties. She loved to swing now. She would roll down a mound of mulch not afraid of getting dirty. She could go outside without sunglasses. She could sit in a movie theater without covering her ears. She graduated from OT just in time for kindergarten!
However, she was getting constant headaches. At age 5, she was getting about one headache a week. And she suffered from chronic constipation. She also told me how her tummy hurt at bedtime. And she still suffered from night terrors and had since she was about 2 years old. So, in October 2011, I ran an IgG test on her. It tested her for food sensitivities. It showed she had leaky gut and a severe sensitivity to gluten, dairy and turkey, a moderate sensitivity to chicken, cantaloupe, peanuts, and malt and a few other mild sensitivities.
There it was….right in front of me. I had been busy healing my oldest daughter’s GI tract with diet and supplements and Skylar had the same problems. Possibly even worse. So, we were back to square one. I had finally gotten her to eat a turkey and cheese sandwich and she could no longer have it. We removed all offending foods from her diet and started her on digestive enzymes to heal her GI tract. Then something wonderful happened. The headaches stopped. The night terrors stopped. And yes…get this…her eating actually improved! Once we got over the hump of finding alternative foods and explained to her how the old foods made her sick, she began to eat new foods. It is not as easy as with a typical child. And she still requires lots of prompting to eat but it is a lot easier than it once was.
So here we are. She is now age 6. And she is virtually indistinguishable from her peers except for the diet she is allowed to eat. In addition to no offending foods, we also do LOW sugar, no hydrogenated oil and no food colorings or flavors. I consider her almost healed. My hope is that once we get her GI tract healed (and it will take years), she will be able to eat normally again.
The lessons I learned from healing my daughter with autism helped me heal my daughter with sensory processing disorder. I hope you learn from them too.