Sunday, December 12, 2010

A Bit of Regression

Jonathan is definitely a kid that needs supplements to maintain a higher level of functionality. I have been a bit lazy the past few weeks and have not been good about giving him his supplements.  In addition, I tried going to a new nutritionist that told me that all the supplements I was giving were not good and made me change what I was giving Jonathan, but I don't that her new approach works for us.  So he has been missing the multi-vitamins and other pills I used to give him.

This week he has been very absent-minded and his dad even got very upset with him on Friday as he could not follow directions at all.  Daddy asked me to please give him his pills again because the difference is so noticeable that it is actually frustrating.

Thursday, December 9, 2010

Celebrating that Daddy Finished his Master's

Daddy finished his last class of his master's degree yesterday after 2.5 years of taking classes in the evening.  So we decided to go to a restaurant today to celebrate.  We went to a japanese restaurant.  We had taken Jonathan to this restaurant before and he had always been very affraid of the fire the chefs make when cooking at our table. But tonight he was really excited.  He couldn't wait. He loved the wonton soup. I was shocked.  And when the chef came, he engaged with him from the beginning.  If only had he been a bit less loud, it would have been perfect.  He cannot regulate his tone of voice very well. He kept asking the chef what he was doing, he loved the fire and asked for more and he was very happy.

Tuesday, December 7, 2010

Summer and Fall 2010 Recap

Sorry that I have been absent for so long.  It turns out that I got sick.  I had been suffering from intense stomach pain for quite some time and on July 26 I was diagnosed with Gastritis and Barrett's Esophagus (a pre-cancerous condition), which forced me to take a break from Jonathan's recovery and focus on mine.

After 4 months of changing my diet, adding a lot of supplements, medication, exercise, etc., the second endoscopy does not show traces of Barrett's.  It is strange as this is a non-reversible disease.  So I don't know if one the lab gave a false positive result or if what I had was so microscopic that all the aggressive interventions helped my body regenerate.  In any case, I feel better, healthier and I want to go back to Jonathan.  With my new lifestyle, I should be okay.  They will do another endoscopy on 2 years.  However, I do feel a side effect of the acid-reflux medicine.  I feel more depressed than normal. I don't normally suffer from depression, so I am concerned about this because it is interfering with my daily tasks.  But after researching I believe that malnutrition that can come from these medications can lower serotonin and dopamine levels.  I checked with my nutritionist and she gave a few supplements to take to help me with these.  We'll see.

With regards to Jonathan, not much has changed since July.  Jonathan had a nice summer break.  He attended various summer camps with his sister and learned a lot of new things. He is now in 3rd grade. He is back to the private school he attended last year.  He is doing very well academically, but he is having some social issues with some of the kids there.  He is now fairly conversational and he tells me about it.  He is unhappy because he gets annoyed and either gets pushed around or yelled at or he does it to the kid that is annoying him.  It is a lose-lose situation.  I speak to him every night and he cries sometimes because he feels that he cannot control his emotions sometimes.  He also has accidents and hits other kids by mistake and those kids get very upset with him and either yell at him or call him names.  And he is really bad about defending himself, so he screams back and cries.  This recovery mountain never ends!

To summarize the last few months:
  • CHELATION: Jonathan completed 67 cycles of DMSA/ALA and finished on 7/19/2010.  The dose was 45mg of each chelator every 3 hours for a total of 22 times between Friday afternoons and Monday mornings.  For 1.5 years, we didn't sleep more than 3 hours straight hours every weekend.  That was rough but necessary.
  • NUTRITION: I found a new nutritionist who did a new hair analysis and told me that his copper was extremely high.  Apparently copper can be the reason for him walking around.  Although he is not hyperactive, he cannot stop moving or walking in circles at times and she indicated that that is the copper. The best way to get rid of it is by adding zinc and eliminating fructose. The latter has been extremely hard.  Everything has fructose.
  • NEUROFEEDBACK: He started neurofeedback again late August.  He has completed 22 sessions and on session 20, the Dr. did another TOVA test.  She indicated that he no longer has any traces of ADD/ADHD per TOVA.  But there is still a gap of more than 5 points between the 4 indicators, so she recommends that we keep going. It is just really expensive and we are running low in our savings.  So I am going to finish the next 20 and take a break.
Response Time Variability888695
Response Time1067887
Difference b/t lowest and highest193520

Normal range is 85 to 115. Scores above 115 are better than average, and scores below 85 are less than average.
  • SUPPLEMENTS:  I removed a number of supplements that Yasko recommended per the nutritionists recommendation. But she wanted me to change his diet, add different foods, remove other foods and start giving him green grass mixed up with chocolate milk.  Needless to say that given my condition, I didn't do that.  And I believe that the lack of some of the multivitamins I was giving him is causing his serotonin and dopamine levels to drop. In addition, his mood is very volatile.  He cries a lot for very small reasons.  I am confused about what to do here.  I don't have time or energy for what is needed with regards to the nutritional changes.  I need to figure this one out soon.
I will start logging if not daily, at a minimum twice a week as I am seeing some subtle changes and school related issues that I want to track.  In addition, we have not visited his DAN! Dr. in a while. I am going to make an appointment soon as I feel I need to go back to what I had been doing all these years. We are very close and I got side-tracked.