In December 2014, my daughter (10 at the time) was no longer able to swallow food. Prior to that there were issues with anxiety and sensory things but the inability to swallow was what started the nightmare.
Just a month before that she was diagnosed with ADHD though she had been a stellar student until that year. The journey to find someone to help her swallowing issues wasn’t easy. Most medical professionals believed it was an eating disorder and/or anxiety. Thankfully we found a STELLAR Occupational Therapist who immediately knew what was wrong with my daughter and we received the diagnosis of Sensory Processing Disorder. There was no question she had sensory issues. From a very young age we noticed that she hated socks and loud noises etc.
She did intensive therapy to learn how to swallow again followed by 1.5 years of food therapy where she learned to enjoy eating food again. During that time she really started to decline neurologically. We noticed some abnormalities in her movements and coordination and we uncovered how disorganized her brain was in terms of gross motor movement. At that point she was also diagnosed with Dyspraxia.
School became increasingly more difficult. She was having issues with memory and focus. She was also having issues with her vision and she was diagnosed with Visual Processing Disorder. Soon after we noticed that her hearing was NOT what it should be and that we were constantly repeating ourselves. We took her to be tested and sure enough she was diagnosed with Central Auditory Processing Disorder. Her hearing test revealed that she had better than average hearing but her brain was scrambling the audio. She scored only 40% comprehension in one ear and 65% in the other and was fitted for assisted listening devices
Again one more piece to the puzzle – and yet I was now starting to realize that she didn’t have ALL these things wrong with her!! No way! They were the symptoms of something bigger. So I began to research and understand SPD and Autism. Lo and behold it is very poorly understood and when you really break it down it made sense that all of her sensory systems were struggling. I became somewhat content that we had peeled back the onion as far as it could go and that anything that was still “unresolved” by the diagnosis of SPD was just unexplained as of yet.
Then, in June 2016, she was struck by Vertigo and started having mobility issues, numbness in her extremities and difficulty with balance. By now we were seeing a Neurologist – in a quick period of time her condition deteriorated to the point that was avoiding using stairs, swimming or standing for any period of time. She was chronically fatigued and SPD didn’t explain why. Or why it was getting worse. We began to suspect a rare type of CP, MS and a host of other scary illnesses. The brain fog and confusion that she drifted in and out of made her un-teachable. She had days with great clarity and then days that she was unable to answer 5-6 word questions. “Do you want chicken or pizza for dinner?” had to be broken down and explained further. We were confused all over again.
The Neurologist performed numerous tests but ultimately determined that from a Neurological perspective that there was NOTHING wrong with her. He said that what she is reporting as her symptoms are neurologically impossible. Nor do they correlate with any degenerative diseases. That what she was experiencing was the result of being gifted AND having one or more brain based disorders (she was now officially diagnosed with MANY) and on a whim he ordered blood work to check for B12 levels and Iron. And they came back as deficient. We immediately began B12 injections and Iron supplements and noticed a slight improvement in her energy.
So in total she was diagnosed with (in order): Chronic constipation, anxiety, insomnia, ADHD, Dysphagia (swallowing) SPD, OCD tendencies, Dyspraxia, Visual Processing Disorder, Central Auditory Processing Disorder, Gifted, Vertigo, Low B12 and low Iron.
At one point there were no more tests we could run, no stones left unturned. I had dedicated 2.5 years to bringing my daughter back to the girl she used to be and I was faced with the reality that I now had to stop trying and start to create a new normal. There was no cure, no medicine, and no surgery to help her. She would have to learn coping skills and strategies as she aged to compensate for her issues. Her education was modified. Some of her issues are considered invisible disabilities and we successfully applied to have her recognized as disabled and as such she shares the same legal rights and protections of all disabled persons.
In Sept 2016, she started grade 7 in a new school and initially it was overwhelming but promising. The B12 and Iron supplements were helping with her energy and she was making so many new friends. It felt like – this will be OK. We can make this work. But four months later I no longer accepted it. Just like before the fatigue crept up slowly and insidiously. If she went to a sleepover on a Sat night she was bedridden for 3 full days as a result. She was so confused at the new school that she needed to be assisted to get to classes as she couldn’t remember where anything was. Her condition was declining once again. By December 2016 she was no longer engaged in daily life. She missed exorbitant amounts of school and the fatigue stole her from us when she was home.
I remember sitting in an IEP meeting where they discussed the “new plan” to modify her entire education so that she could “keep up”. They were going to strip back almost everything to make it manageable for her. I was so grateful and so angry all at the same time. She was tested as reading at a University level and was so bright but it was so unreliable and lately she was confused about basic daily living. I knew that something was slowly stealing my daughter and that I had to stop it. I also knew there was no one that was going to help me so I decided to have one more kick at the can and try the ONE thing that I had wanted to try for years but was unable to because of her eating issues. I decided to feed her 100% Gluten Free.
No sooner did I start researching Gluten Free when I stumbled across the top symptoms of Celiac and read about my daughter: Constipation (or Diarrhea), Severe Fatigue, Brain Fog, Deficient in B12 and Iron, Stomach Pain, Headaches, Numbness in hands and feet, ADHD, Learning Disabilities, Lack of Coordination. More importantly I learned about a condition called Gluten Ataxia.
What is gluten ataxia?
Well…ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with persistent ataxia may have damage in the part of the brain that controls muscle coordination – the cerebellum. (Source: Medical News Today).
Gluten ataxia occurs when the antibodies that are produced in response to the ingestion of gluten attack the cerebellum. Left untreated, the condition progresses, causing irreversible brain damage
In March we put Sara on a GF/DF diet (and some supplements – Probiotic, Inulin, Omega 3 and Magnesium) and that the difference was literally unbelievable! Within no time her issues just melted away and she no longer had severe sensory issues or chronic fatigue. It was like she just woke up. She was a new person. When I put her on the diet I was hoping to resolve some digestive issues and maybe alleviate some fatigue etc. So I was SHOCKED when the most noticeable improvement was that she could hear EVERYTHING! Her hearing was restored 100%.
Then boom one day a few weeks in I noticed some sensory stuff happening again and it appeared that she was not always hearing me anymore. The next day things were worse and then it snowballed. We eventually lost EVERY success – without warning, or explanation.
I was GUTTED -and very confused. I knew that we had begun to allow her to “cheat” a bit with dairy so I got strict again and took it all away. Sat and waited for the improvements to come back but nothing. In fact as the days passed she got worse. Naturally I assumed that she must also be intolerant of other foods and I needed to figure out what they were.
Out of desperation I went to a Naturopath who suggested a Paleo diet and explained that a Paleo diet contained no inflammatory foods and that once we got her sorted back we could consider adding things back in and see how she reacted. She also asked about what the supplements were that we were giving her and made some minor adjustments. She told us to stop giving the Inulin and added in Vitamin E8. Off we went full of hope and expecting things to improve.
And there was a VERY slight improvement over the next few days. But slight. Her energy did seem to improve but it was NOTHING like the almost 100% recovery we had already seen. But we figured she just needed time to heal so we waited it out. And we waited. And waited. Then it went from bad to worse. Within 2-3 weeks Sara was back to being bedridden, sensory issues through the roof. Severe stomach pains etc. THEN she got vertigo again! It was awful. She was basically non-functioning again. But worse her hearing was the worst we had ever seen. She heard nothing any one said anymore.
We went to the Dr. for the vertigo (my suspicion was that she had an inner ear infection based on some things that I noticed) the Dr. looked in and confirmed that she did. She said Sara had fluid in one ear but that it was not bad enough to warrant antibiotics. Instead she prescribed a steroid nose spray. She said the steroid would reduce the inflammation and allow her ear canals to shrink back and let the fluid drain out of her ear.
Off we went.
So now I start researching. I begin to wonder if maybe it isn’t something she is EATING – but rather something that I am GIVING her?? I know that her body (her ear anyway) was inflamed but that she was on a diet free of anything that causes inflammation?? I knew that every day she is getting worse, that her stomach is in agony. I start to think that it is stomach related – and constipation was the first issue that she ever had. I discovered SIBO and soon after found Dr. Nemechek’s blog.
As I read through the protocol I realized that in fact when I “cured” Sara I was in fact following his protocol and just did not know!!! The naturopath told me to drop the inulin when we met! But I also was giving her a very high quality probiotic which I think spun the entire thing into chaos.
So now we are following the protocol to a T and finally starting to see the same results again! I don’t think my daughters results are typical – I don’t think most kids will recover in the short amount of time that my daughter did – but I am telling you IT WORKS!
Update #2: Sept 2017. We are now 4 months into the Nemechek Protocol and seeing AMAZING results. Sara no longer has SPD (there are still some food related sensitivities but she would not even slightly meet the criteria for SPD. Her CAPD is no longer an issue – she can hear me from anywhere in the house with any number of appliances running. She no longer suffers from chronic fatigue, brain fog, processing issues. I could go on and on but it is probably easiest to tell you what remains – like I said she is still picky about food but I am now seeing that she is normal “kid picky”. Her chronic constipation was also VERY slow to resolve. That was a stubborn issue but I am happy to say that we have been over a month with no digestive complaints. As well, now that she is back in school she is commenting on continued difficult with seeing what is on the board and close up reading – which indicates to me that she may still have some visual processing issues.