My son, Joshua, is 3 ½ years old. He has been diagnosed with PDD-NOS and is on the autism spectrum. I had a normal pregnancy with no complications besides a sinus infection. Josh was induced at 39 weeks, born a healthy 7 lbs., 15 oz. and handsome with his dark hair and dark eyes! He hit all his milestones the first year, but most on the late side. We struggled with food allergies, wheezing, eczema and sleep apnea during his first year. I was able to control the severity by altering my diet while nursing him and after he was 7 months, he was doing pretty well. During his second year, he started to have ear infections and viruses. Around 18 months, he started to lose his language, eye contact and responsiveness. His frustration level was growing and head-banging, self-injury and severe tantrums ensued. His digestion became irregular and he became chronically constipated. We assumed his self-injury was due to frustrations in language delay and called ECI for a speech assessment. We started speech services at 21 months. A few months later, Josh had another round of ear infections and while on the antibiotics, he went crazy. He cried almost non-stop for days and hit his head severely into the floor and walls. It was terribly upsetting and my pediatrician and I agreed we needed to stop the antibiotics immediately. As the next few months went by, the differences between Josh and his peers at daycare grew. Sensory issues started to develop. Several times a day, Josh would scream, cover his eyes with his hands and run to the corner of the room. We could not drive over speed bumps or railroad tracks without screaming and I avoided driving by loud vehicles as much as I could for him. Josh woke several times a night and seemed to be in pain. Our concerns continued to mount.
At 27 months old, Josh and his big sister welcomed their baby sister to the family. At her 1 week doctor appointment, we spoke with our pediatrician about Josh’s head banging getting worse as well as his lack of sleep. She encouraged us to do metabolic testing, as she had seen many kids with behavioral and sensory issues improve with custom vitamin blends. We performed the lab work and waited weeks for the results. Before they were back, Autism Week received a lot of coverage on television. My husband did some additional reading and shared his concerns that we needed to have Josh evaluated for autism. I made an appointment with our pediatrician and prepared a list of concerns to discuss with her:
- Head banging
- Severe tantrums
- Unexplained breakdowns
- Closing his eyes to shut out what is happening around him
- Fascination with things that spin: fans, clocks, helicopters, wheels
- Attachment to blanket and balls
- Resistant to change: food, TV shows, books, riding in a new car
- Toe walking
- Picky eating: never eats rice, pasta, eggs and phases of eliminating meat or dairy
- Speech delay
- Sensitive to loud noises
- W-sitting
Our lab work was available when we went in to address developmental issues with our pediatrician. It showed many abnormalities in his metabolic cycles as well as severe nutrient deficiencies. To this day, I am thankful that our pediatrician put us on the biomedical route for addressing developmental issues in our son rather than pushing us to a diagnosis and working from that angle. We ordered our custom vitamin blend for Josh and researched all we could so we could jump into a plan of action to help him. We started by removing casein from his diet. Josh turned into a monster. My husband described his behaviors as similar to an addict going through detoxification. It was a very rough 10 days, but we turned a corner. Josh began to sleep a little bit better and his head banging was starting to reduce in frequency. It was still frequent, but any improvement was a huge win for us. We followed up next by removing gluten. It wasn’t as marked of a difference as removing casein, but as months went by, we continued to see behavioral improvements. We started occupational, speech and physical therapies every week and ended up enrolling Josh in an ABA therapy program.
A year has passed since we started making dietary changes. We have been so blessed to work with some of the best nutritionists and doctors for our son. They have helped us to get a full evaluation of Josh’s internal health. My 7-year-old can tell me her throat hurts or that she has a headache, but watching my son suffer and not be able to tell me anything about how he feels or where it hurts has been extremely frustrating. We have spent many nights up with him, feeling hopeless as he is visibly uncomfortable, itchy and sometimes in pain. Yeast and bacterial overgrowth in his digestive system have been our biggest battle. We were able to initially control them through medications, but the yeast, in particular, continued to return. With the advice of our DAN doctor, we started Josh on the Specific Carbohydrate Diet 5 months ago to control yeast overgrowth. We work closely with our nutritionist to incrementally add easily digested foods one at a time to watch for food sensitivities and allergies. We had a rough start, but the results have been amazing. After 1 ½ years of abnormal bowel movements, we finally have regular and formed stools! Josh sleeps through the night about 75% of the time and head-banging is a rare occurrence. He has progressed exponentially in his behavior, social, speech, gross motor and fine motor skills. As a family, we are functional again. We can go to the grocery store together. We can go to the museum or a park. He initiates conversations with us and wants to communicate and socialize. Currently, he is developmentally equivalent to a 2 to 2 ½ year old in most areas, and we are so grateful for those strides. We still have a long road ahead of us, but we see great things in store for our son.
The dietary changes we made for Josh have helped our entire family. We are all healthier and have a higher importance on what we eat after seeing what an improvement the foods we eat can make on our bodies. My youngest child is now 15 months old. I was able to detect food intolerances very easily with her while nursing because of all we learned through Josh. By 2 months, I realized she did not tolerate milk either. Once I removed it from my diet, all signs of eczema and wheezing were gone. Of my three children, she is the only to make it through her first year without an ear infection or antibiotics and she’s still going strong. I saw improvements in my digestion and overall health by removing casein from my diet as well as being mostly gluten-free with my son. I lost 65 pounds without a lot of effort. My blood work this year came back better than ever in all areas.
Our priorities have been realigned. We enjoy a lot more of the simple things in life: watching our kids play together, hearing Josh sing a song for the first time, and hearing the coveted “I love you.” We have learned to find happiness and joy in each small milestone. We see parenting in a more selfless way and have such respect for all so many parents are going through to help their kids. Our children are blessings to us and the autism path we are on has changed our lives forever. We will do all we can for our son to reach his potential and are grateful to Faye for her guidance and encouragement along the way. She was quite a light for us at the beginning of our journey and we know she shares in our joy as our family continues to continue recovering Joshua’s health.
