I started him back on the supplements on Sunday and Jonathan didn't seem to have any problems.
Sunday was a very special day because Jonathan did something that was out of the ordinary. He spent almost 4 hours with 5 other kids playing on the backyard of a friend's house. This friend lives in a nice and secluded neighborhood and his house backs to some woods and a small pond. The kids walked around, and played with rocks and sticks and played games, talked to neighbors, etc. Jonathan stayed with them and not only did he follow other kids directions but gave some ideas about the things they could do. For the first time, I didn't feel fearful that something was going to happen to him that he couldn't handle. He walked on big rocks, and fell down on the grass. When he got his feet wet, he was a bit disturbed and came to me. I took his shoes off and about 30 minutes later he was out, wearing just socks, went back to playing again. It was awesome.
This week, the teacher sent a note saying that Jonathan is doing well at school. No additional prompting to complete his work is needed. That is encouraging. But I admit that he still needs extra help doing his homework. He is better than before, but he still gets distracted easily.
His conversational language keeps improving. And he is now describing things to us. He does what he can to describe items or situations with his broken English, but he is doing it better than ever before, to the point that we now understand what he means.
Someone left a comment asking me to expand on the neurofeedback information. I don't think that regular neurologists do this therapy. You need to find a specialist. Neurofeedback is a type of neurotherapy - a type of alternative therapy. It uses technology that trains the patient to regulate brainwave frequency by rewarding the beneficial brainwaves and inhibiting the less desirable ones. After a few sessions, the patient learns to gain the ability to self-assess and self-regulate. It has been shown to improve motor and mental planning and sequencing as well as processing speed, organization, and focus.
High level overview from what I understand, a digital EEG amplifier reads brainwaves signals from electrodes placed on the person's head. Brain frequency patterns are then transmitted to a computer operated by the therapist (brain mapping). The patient then learns how to play a video game in which the action can be started and maintained by the correct brain frequencies (no hands, just brain frequencies). After several sessions with the video game, the patient will have developed the ability to recognize and alter particular brain waves. Practice sessions allow clients to sustain brain control in everyday life.
After speaking with several parents that have tried this therapy, it seems that it works best on the high functioning kids. The lower functioning kids do not respond as well, or don't respond at all to this type of stimulus.
You can learn more about neurofeedback from this website - http://www.crossroadsinstitute.org/ - , but I don't know how you can go about finding a local therapist. Check with your neurologist.
Regarding the MAP test through Amy, I have not done one in a while. I need to re-run it. But last time I did it, she emphasized on more ATP, more CoQ10 and Acetyl Carnitine, along with many other supplements including the Mood D and Mood S, and Clostridia support. I have been giving him those plus the other supplements she suggested in his GAR, but I think I needed to increase the ATP. I called her office (because she even wrote it in one of the urine metal tests), and they suggested increasing it to 1.5 pills form the .5 I was giving him. Then, just last week, our DAN! Dr. recommended increasing the CoQ10 to 100mg (from 50mg that I was giving him) and the Acetyl L-Carnitine to 1000mg (from the 250mg I was giving him). I did that this week, and he is less tired, actually he is more active, always looking for something to do. So that seems to help. I don't have the blood results, so right now it is just anecdotal.
Regarding clostridia, even though his MAP showed that the marker was a bit high, after I did a full round of Flagyl, I honestly did not see any changes. Now that I have completed 120 dives of pure Oxygen through Hyperbarics Oxygen Therapy (which I was told kills clostridia), I am going to run the MAP test again to see if the markers have improved.
Dr. Amy believes that Jonathan has the ACAT mutation, but since I haven't ran the latest SNPs, I don't know. I added some of the ACAT supplements and I honestly did not see much improvement with them. When I run the test again and find out what other SNPs he has, I will add the necessary supplements. Until then, I am following the Vitamin K2 protocol to lower his oxalates and that actually seems to have worked better than the ACAT supplements. I don't think that there is a problem with the ACAT supplements. But I believe it has to do with the dosages. I give him 5mg of Vitamin K2 instead of 1mg for instance. But there are more supplements in the ACAT list than the Vit K2. I cannot give this child more supplements than what he already takes. It is crazy.
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