I am going to try to condense a lot of information in this post. It is by no means a complete picture of all that we tried but rather an overview. I know if you are dealing with an autoimmune disease it can be like navigating a muddy river in the dark.
So Thomas' platelets stayed normal and he resumed all his normal little boy activities by mid June. Late Fall, seemingly over night his baby teeth started falling apart. We were referred to a pediatric dentist who advised us to have 10 crowns put on his teeth. In order to do this, he would have to be put under at the hospital. His surgery was scheduled for February 2011. We were terrified to have the surgery but we were at a loss to know what to do about his rapidly decaying teeth. Everything went well with the surgery but we were left with questions as to why this happened to him. Of course the Dentist's approach was that we must have give him to much juice or sugar yet our other 3 other children did not have cavities....
At this point we didn't really think there was much correlation between the ITP the previous year and this but we were frustrated not to have reasons for why.
Fast forward about a year to the spring of 2012 and several round spots of his hair fell out. This is called Alopecia Areata and it is yet another autoimmune disease with no known cause. Basically the body decides to attack the hair follicles causing the hair to fall out in circle shapes. Eventually over the summer his hair grew back as it does in many Alopecia Areata cases.
The following year in May 2013, Thomas developed yet another autoimmune condition; this time Vitiligo. Vitiligo causes the body to attack its pigment leaving white patches on the skin. We first noticed it on Thomas' chin, then his knees, followed by his back, tummy, feet and hands.
After reading lots of literature on autoimmune conditions, we decided to have Thomas go Gluten Free and very limited dairy beginning July 29, 2013. In August, he began complaining of muscle pain/cramps in his calves. He also developed headaches especially when reading. The eye doctor suggested very weak prescription reading glasses which did not help really. We also removed MSG from our dies. MSG is actually hidden by a multitude of names and is in virtually every packaged product you buy at the grocery store. Visit www.truthinlabeling.org to learn for about it. It is also worthy to note that our doctor ran various blood tests throughout to monitor him including ANA tests. This test is indicative of autoimmune issues. His levels were barely elevated. We did have a consult with a Pediatric Rheumatologist who did not feel that he had rheumatoid arthritis or Lupus at that time. His vitamin d levels were also very low and our doctor increased his dosage to 2000 IU a day. Our doctor thought the low d levels might be causing the muscle pain. Month after month went by and the vitamin D levels stayed below normal. We also started him on a magnesium drink.
After many hours of research by my thorough husband, we made a large investment in a home purification system by IQ Air.
January 2014 he underwent extensive food sensitivity testing followed by an elimination diet. Up to this point, Thomas had the worst smelling gas you can imagine. He could evacuate any room within seconds and it was a constant thing with him. He became known as the "smelly kid" at our house. He was also diagnosed with systemic candida (yeast) overgrowth.
Beginning in February, we tried the candida diet with him which is absolutely no sugar not even fruit. It was a HORRIBLE experience for our whole family. Thomas became very depressed and anxious. After 90 days (May 2014( of th
The addition of vitamins required a lot of research as so many forms the body cannot process and then the supplement is worthless. We found that George's Aloe was one supplement that brought relief. It greatly helped his stomach aches. Caprylic Acid (Pure Encapsulations_ which is derived from coconuts is supposed to be good for getting rid of yeast overgrowth but it caused my son extreme stomach distress even in small doses.
Around July 2014, we began using a product call Cat's Claw; we started with 1 drop in his OJ and worked up to 3 drops by October. We saw no results so we stopped using it. He also took oregano oil diluted in orange juice around this time too. Oregano oil is an anti-fungal to help with the candida.
Meanwhile the headaches and muscle pain continued as a daily symptom with no relief. In August we revisited the eye doctor only to be told that he no longer required even the weak reading lenses and yet the headaches continued and grew worse during reading and other close up activities. Around this time we also noticed another spot of missing hair (Alopecia Areata) on the side of his head. It regrew by October but then he developed strange marks on his chest and back.
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| Strange skin condition picture taken April 9, 2015 |
Our family doctor thought it was a condition called Pityriasis Rosea and it should clear up on its own even thought we were passed the standard time it took to clear up when we had our appointment.
December 20, 2014 after reading more about sugar consumption, we cut back again. Children his age should have between 12-20 grams of sugar a day according to various studies and online sites. A TBSP of our organic Ketchup has 4 grams of sugar, so you can imagine how easy it is to get too much sugar. A half a cup of ice cream is well over the daily limit. We let him have unlimited fruit. We noticed increased tummy aches and headaches when he would go over the 20 grams of sugar.
In January of 2015, his alopecia began spreading on the back of his head and as of right now it is in multiple spots.
In February, we began making our own very simple shampoo that actually works very well; 1 cup water (we use reverse osmosis water) and 1 TBSP baking soda. For conditioner we use one cup water and 2 TBSP raw apple cider vinegar. We also switched our hand soap to 2 TBSP. Castille soap and then fill the bottle with water. It's runny but does the trick without all the other harmful chemicals that you find in commercial soaps.
Then on March 7th, during his last hockey game of the season, he collided hard with another player. At another time I thought I saw him slide head first into the boards but he got back up both times and kept skating. However, his skating got progressively worse (weaving back and forth) and the coaches pulled him from the game thinking possible concussion. He passed the concussion screeening but wasn't allowed to go to his team rollerskating party following the game. He was extremely upset. I took him to Meijer to let him pick a Lego set and he had to hold on to the cart during the whole trip. He said he was very dizzy, tired and his head hurt badly. All day on the 8th, he was very dizzy; needing assistance to walk around the house. We took him to our chiropractor twice that week for adjustments which seemed to help at least temporarily. The dizziness went completely away after a week. His headache was completely gone for a whole day as well. He even said his leg pain lessened considerably.
We went to the dermatologist on March 18. She was not convinced that his skin condition was Pityraisis Rosea. She thought it could be Discoid Lupus or Lichen Schlerosis. She wouldn't be able to tell without doing a skin biopsy. We opted not to the biopsy at this time and she was fine with us waiting a few months to see what happens with the condition. With the hair loss, if the condition is Lupus, then the hair loss may be permanent. She did approve a cream for his head.
He is currently taking 1-3 ounces of George's aloe per day, 8 oz. of the Elyte mixture and 2 Colostrum pills and using a hair cream called Bald Spot Treatment made mainly of herbs and oils.
Thomas began having hockey camps in the evenings in April and his leg pain grew worse. The dizziness started again on April 23 and he missed his hockey that night because he was too dizzy to skate. His headaches were back full force too. He has been so looking forward to trying out for the travel hockey team like his big brother and it was starting to look like that was not going to be possible.
All in God's timing; multiple things came together with the help from my brother getting us Zyto Compass Scans this past Friday night and a friend connecting is with an extremely knowledgeable woman who has a company that helps people find healing and relief. More on all of this in the next post as we get started on this new adventure toward healing.
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