In the past several weeks, many people have asked about what we are doing for treatment. Let me first state that I am not any sort of doctor. I am, however, a concerned mother who would do absolutely anything to get her child back. I have aften heard that with those qualifications, I must do better investigative work than the FBI. That may or may not be true, but I have not stopped reading and researching since we were able to pinpoint a diagnosis.
*That being said, please consult your doctor before beginning any form of treatment. Yes, this is my obligatory disclaimer.*
Specific Carbohydrate Diet
As mentioned in previous posts, we began the Specific Carbohydrate Diet when we first received a diagnosis. This diet eliminated all grains, all starchy vegetables, corn, soy, and sugar. We had been gluten free for quite some time, so the transition wasn’t as difficult as it might have been for others, but it still took some adjusting. For the first three days on the diet, he had a fever and slept most of the day. We suspect this was caused by a significant die-off of pathogens. As a side note, most PANDAS kids not only suffer from a strep infection, but multiple co-infections as well. We don’t know what was dying off during that time, but this alone took his symptoms from a 10 to about a 7.5 in only a few days.
We suspected some major gut issues with Tyler and as a result, we knew we had to support his system as much as possible. We ordered a probiotic (www.customprobiotics.com) free of the strep strain and placed it in his applesauce or a fresh 100% juice twice a day.
Fish oils provide excellent brain support. We reasoned that because the PANDAS was causing brain inflammation, some high dose fish oils couldn’t hurt. If anything, they would help regulate mood and support his brain throughout the healing process. We noticed a difference with the oils and probiotics though its difficult to say which one was more helpful as we administered them both at the same time.
I began with lavender on my son’s pillow at night as he had extreme difficulty settling down. He had always enjoyed finding lavender when out and about and rubbing it on his wrists, so this was very easy to implement. Next, I found a local apothecary with a blend of oils specifically meant to bring about calm. It contains frankincense, lavender, and bergamot and is properly diluted to place directly on the skin. I either place a drop on the bottoms of his feet or behind his ears. Lastly, I added some oil of oregano, a strong anti-bacterial, to assist in killing off pathogens. He hates the smell and has great difficulty with strong smells, so I place this on his feet at night (with a carrier oil) or slip a drop or two into his foot baths.
Magnesium Salt Foot Baths
I try to do this daily, but on busy days, sometimes it doesn’t happen. If we had a bathtub, I would have him take a bath, but alas, a foot bath will have to do. I usually do this while he’s eating a meal and let him watch television. I add magnesium salts and a few drops of essential oils. Geranium is a comforting oil, lavender is calming, oregano is anti-biotic, orange is brightening, and frankincense assists with lowering anger/aggression. I use a combination of any of these based upon his particular mood for the day. These help him with magnesium intake and help him regulate and become peaceful.
After about a month using the above protocols, we consulted homeopathic doctor Alan Freestone (alanfreestone.com) in the U.K. Alan came highly recommended by a friend who had utilized him for her own son’s recovery. We had used some homeopathy for small aches, pains and ailments previously, but our experience was rather limited. Alan recommended two remedies which we implemented as soon as possible. The first day of the remedies, the three of us left for a family outing for the first time in months. His anxiety would only allow him to be out for about two hours, however he was able to calmly recognize when he needed to head home. At this writing, we are three weeks into the remedies and Tyler has gone from about a 7 to about a 4. His anger/aggression appears only when his resources are depleted (hungry, tired, etc.), his lowered anxiety level has allowed him to leave the house for short stints, his tics are greatly reduced, and his obsessions are able to be calmly rationalized and redirected. His physical symptoms are still present currently, though his dark circles are beginning to fade.
I did not include chiropractic in my original post as my husband is a chiropractor and Tyler has been getting adjusted since birth. Since it wasn’t something we added, I didn’t address it. I had to reconsider this however, because we do notice a significant difference in Tyler when he gets an adjustment. This is because adjusting the upper cervical spine allows for autonomic nervous system regulation and results in lessened OCD symptoms and tics. I don’t know if it is because Tyler’s chiropractor is his dad or if his sensory issues make adjustments difficult, but when his symptoms were at a 10, adjustments were rare (and not for lack of trying). Now that symptoms have lessened, he has been adjusted more often (about 2-3 times a week). Progress.
We have a follow-up scheduled with Alan in another week and I am hopeful his symptoms will continue to fade with time. We may need to change and/or add some remedies and I know that I will need to implement some healing for myself as well. It is common in homeopathy to treat the whole family and because I believe I have the same patterns as Tyler, I am certain that my patterns will need to be healed in order to bring about full healing for Tyler.
We will also be doing genetic testing. This will not change our approach necessarily however, in order to avoid future or further infection, we feel it is important to recognize a limitation within Tyler’s body, should it exist.
The greatest news is that Tyler has gone from about a 10 to going between a 4 and a 6. Some days are better than others.
Each milestone brings us renewed hope that one day soon, we will see the light in our child’s eyes return. And yet, we have miles to go before I sleep…
Hugs and Healing,