I am often asked why I chose to seek treatment for Sarah. Her language skills are advanced and her social skills are appropriate for her age. She appears to be a typically developing child. For the most part, that is true. However, there are things that have worried me for quite some time. And, there are some new symptoms that showed up recently which I fear might signal a regression.
Since she was a baby, Sarah has had chronic digestive problems, trouble sleeping, difficulty with transitions and massive (usually unprovoked) meltdowns. These issues are all common in autism, but can appear in typical children as well. Since we have autism in the family, I felt we needed to explore biomedical treatment for her just as we are for her brother.
In the last couple of months, Sarah has shown an increase in new symptoms. Initially, I thought I was just being paranoid. She has reached the age that Jake was when he regressed and of course, I am watching her very closely. People often suggest that Sarah might have picked up some autistic behaviors just by spending time with her brother. That's a logical assumption, but her symptoms are different from Jake's.
Here are some of the new symptoms that I noticed:
Overuse of peripheral vision
Spinning
Toe walking
Scripting/Echolalia (this is minimal and always used appropriately)
Lining up toys
Decrease in imaginative play
Long periods of time spent laying on the floor staring at toys, shoes, etc
Reduced interest in potty training
Sensory seeking behaviors (pressing hard against people and mouthing objects)
At our first DAN! appointment, the doctor initially said she did not see the symptoms in Sarah. But, after spending some time with her, she witnessed a few of the things I mentioned as well as some stereotypical facial expressions and perserverative behavior. The initial assessment showed that Sarah 'very likely' had PDD-NOS. In other words, she has some, but not all, of the symptoms of autism. Though I agree with this conclusion and appreciated having my concerns validated, it was awful to hear.
After the first appointment, I had planned to go through with ADOS testing to finalize the diagnosis, but recently decided not to pursue it. In the weeks that passed since the first assessment, I have increased my one-on-one time with Sarah and am implementing my home version of floortime therapy. I've noticed that as long as I can keep her engaged, she doesn't have the tendency to 'zone out'. She has also resumed imaginative play, which is very encouraging. The other symptoms are still there, but I feel like we can move her off the spectrum with biomedical and home interventions. At this point, a diagnosis would not be useful for her as she would not benefit from being in a special education preschool and requires no speech, occupational or physical therapies.
I was anxious to get the results of Sarah's labs so that we could begin to treat the underlying medical issues. I am still awaiting the results of the nutritional analysis which will reveal any vitamin or mineral deficiencies, but I do have a few things to begin working on now.
She has no true food allergies, but has a mild sensitivity to soy and high level of intolerance for citrus. I find this especially interesting because she has been drinking a lot of orange juice lately. In fact, she began a big increase in consumption of citrus right around the same time her 'regression' started. Needless to say, citrus is gone from her diet and I have noticed a decrease in many of her symptoms since removing the offending food.
Sarah has a significant disruption in the blood-brain barrier. This tends to occur in individuals with autism or cerebral palsy and is considered a sign of brain injury (vaccines, anyone?). If I understand correctly, this barrier helps keep toxins out of the brain. Fortunately, she is already on a 'crap-free' diet which minimizes toxins. I am so grateful that we started the GFCF diet when she was a baby. I can't help but wonder what her symptoms would be like now if she had been exposed to more junk in her life. Our doctor is considering a short course of steroids to help with this condition. We'll decide on that after the rest of the labs come back.
I will have a phone consult with the doctor in a couple of weeks to firm up Sarah's treatment plan. For now, this is what we're doing:
Feed the brain - lots of essential fatty acids, fish oil, flax seed, egg yolks
Multivitamin/mineral - I'm using Kirman's Spectrum Complete
Floortime therapy at home to maintain symbolic play and increase social content of play
Remove citrus from diet (Already free of gluten, casein and soy)
No more vaccines for
at least the next couple of years.
Stay tuned for further updates on the other patient at Chrissy's Clinic.
