9 Rounds of DMSA/ALA

We completed 9 rounds of the DMSA/ALA quelation this past weekend. We all have the schedule down pretty well now (including Jonathan). He is reacting well. I do believe his candida has increased. But he has not regressed, nor has his OCD increased.

Observed improvements:

• Expressive language: His language has really improved in the past month. But I don't know if it is the left-over reaction from the neurofeedback or the chelation. His reading comprehension has improved. He gets what he reads much better.
  
• Memory: both his short-term memory and long-term memory of experiences he lives have improved dramatically. He is retaining experiences better and can remember them. He really does not recall much of anything that he lived the first 6.5 years of his life.
  
• Social interactions: His social skills are also improving. We went to a sports store this weekend to get him swimming goggles and he saw a ball he wanted to buy. After much convincing (I didn't want to buy it, but he begged), I gave him a $10 bill and he paid for it. He started a bit weird with the cashier telling him that he had "magic money" but the cashier was very nice and played along. After he paid, the cashier gave him the ball back and Jonathan said "thank you man!" and the guy responded "your welcome bro!". That was incredible. He is really starting to pick up on idiomatic expressions. That is very exciting to me. He also loves to order his own food at restaurants. He is even funny sometimes.
• Play skills: his pretend play is resuscitating. He is playing a lot with Vanessa lately. And he even likes to carry a dalmatian puppy stuffed animal with him around when Vanessa has hers.
  
• Empathy: he is more affectionate lately and when he hurts someone, he is now saying "I am sorry" and really meaning it. So I believe this area is improving too.
• Asking questions: he is asking a lot more questions lately. We went to the movies to see Night at the Museum and he asked a lot of questions. Then, when Roosevelt came up, he said "Mommy, when you were my age, who was the president of the United States"? Well, I could not answer that. I really don't know my American history that well, but I it impressed me that he asked me such question.
• Humming: he is humming 1/3 less the time that he used to. I am not sure what helped with this. But it is great. His humming drives me crazy.
  

Areas of concern:

• Strange movements: I did notice today that he was making strange hand movements, but nothing too annoying.
• Stims: besides the humming, he now talks to himself more than before. That is driving me crazy. And he is continuing to walk with the tip of his toes a lot.
  
• Weather Awareness: this question keeps coming up in assessments and I keep noticing that Jonathan does not get it. He does not pay attention to weather it is cold or hot to select the appropriate clothes to wear. He has swimming lessons on Sunday. I told him to change and he came back with his swimsuit and a long sleeve shirt.
• Language: this is still not age appropriate, but he is really making nice progress here.
• Voice: he is still loud. His voice is not as flat as it used to be, but it is still a bit flat and robotic.
• Too sentimental: he cries whenever I say no, or if I get upset for something, or if he doesn't get what he wants. And whenever something does not go his way, he is very dramatic and says "I will NEVER ..."
  
• Low muscle tone: I continue to struggle with his low muscle tone. He cannot sparrow at Tae Kwon Do (at all). He can't kick, punch, etc. He is a strong kid, but cannot control his muscles well. He can do the form very well, but cannot sparrow. He is having difficulties with riding the bike. The bigger he gets, the worse it is because he is heavier. One of the things that will help him is lose weight.
• Low metabolism: he is overweight, but he does not each lots of sweets. He eats lots, but not so much to be a good 10 lbs overweight. I enrolled him in 9 weeks of sports summer camps. I hope that helps him lose some weight and increase his metabolism. I am working on changing his diet a bit to decrease the carbs a bit and increase veggies, and fruits. He does well with protein and I don't need to increase that.
  

Last week I ran out of one of the homeopathic drops. I didn't buy it (forgot) and 3 days later, Jonathan's throat tic returned! It excites me to know which homeopathic drop is the one that is turning that off. I have run out of the other ones for a couple of days without the same reaction. It is the apo-INFEKT. It is supposed to help with the strep.

I like this new method of chelation. I believe it is working for Jonathan.

6 Rounds and Well

We started his 6th round of the low dose high frequency DMSA/ALA chelation this weekend. Jonathan has actually shown some nice progress in the past couple of weeks, mostly in comprehension and memory. But it is hard to say if it is due to the Neurofeedback sessions he had (he completed 40 sessions and we stopped 2 weeks ago), the new homeopathic drops (which miraculously stopped his throat tic) and the DMSA/ALA chelation. Or a combination of all.

The DMSA/ALA seem to aggravate this leaky gut. His stools are well formed but they have small white dots only during the weekend while he is taking the pills. But I don't see any sulfur related issues. I was worried to give him DMSA with ALA because of his nutrigenomics genetic mutations. But, aside from the extra yeast, he is doing quite well. We (my dad, my husband and I) have been incredibly disciplined to give him the pill every 3 hours. We have not missed a dose yet.

I am planning to try a new probiotic that was recommended by one of the autism groups that I belong to. It is called In-Liven.

Jonathan's motor skills are concerning me. He is having a hard time with physical activities: riding a bike, skating, climbing, even running. He gets tired very quickly. But the other issue is that any activity that requires him to use his arms to help him, he simply quits on. Climbing is such an issue. He has a terrible time pulling himself up. He doesn't seem to have strength in his upper body. I believe part of the issue is that he is too heavy. He is 7 and weighs 75 lbs. But he likes to eat (and not junk precisely) and changing the diet to low carbs would be very hard. It is better to get him to become more active. For the summer, we enrolled him in sports camps. I need to find a solution to this problem. The new school he is going to attend in the fall will have tons of physical activities which I hope will help him build his strength.

Muffins for Mom

Today was pretty special. Last night, while I was giving Jonathan a shower, he told me that I needed to come to his school today for a mother's day event. I was shocked because his teacher had not sent a note home (as far as I knew). As we conversed about it, he told me that he had done a card for me and a book and a flower and that he had picked out a muffin for me and that I had to come. At first I said that I couldn't because I had a meeting (thinking that he was making it up or saying something out of context), but then he looked at me with tears in his eyes and asked me to please go. Of course I said yes. When I put him to bed, he again made me promise that I was going to his school. I said yes.

In the morning, he came to our bed and as I was getting ready to go downstairs to fix breakfast, he asked me if I remembered that today was Muffins for Mom's day and if I was coming. I told him yes. At 8am, I called the school and they confirmed that it was an event for first graders and for his class it was at 9:30am. I took him to school and on our way, he spoke out the schedule, by this making sure that between taking him to school and going to work, I was going to his school first.

I showed up at 9:15am to sign in. When the teacher saw me, she was very happy. She expressed that she was very worried that I had not RSVPed to her note. I told her that I did not see the note and apologized. I am very glad that Jonathan told me the night before, because 25 out of 26 moms went and the kid whose mom did not go was very sad. I know how traumatic these things can be.

He was so excited to see me. He showed me to his desk and gave me all the things he made for me. And hugged me and kissed me. He was genuingly happy to see me. That made me very happy. The event was only for 45 minutes. The kids had to take their mom's breakfast order (1 of 3 choices of muffins and a juice) and the kids picked it up and brought it back to them. It was funny to them balance the huge muffin on one hand and the juice on the other, but they did it. We ate and talked to our kids and looked over their journals and other working books. It was truly special and I am very happy I did that. Jonathan appreciated it too. When he went to bed tonight and I kissed him, he told me that he was very happy that I went to his school today and that he loved me very much.

Round 2 - Very Sentimental

We did a second round of the DMSA/ALA this past weekend. Same small dosage (1/4 DMSA and 1/8 ALA) every 3 hours. It went well. I did notice that Jonathan was more emotional than normal. On Sunday, he had a meltdown because he wanted to show his friend C. his new Nintendo DSi; and when I told him that he had to wait until later in the weekend, he could not regulate that. I bent the rules and let him show his friend for about 15 minutes. We were at a park. After that, he was happy again. He is normally pretty good about regulating his feelings. So this is definitely a detox reaction.

Homeopathy

In the past week, he has hardly scratched/cleared his throat. I heard him twice. And he claimed it was food stuck just after he ate. After he cleared his throat, I didn't hear him clear his throat again. I am starting to believe that homeopathy might be a good intervention after all.

He is on 20 drops of all 4 homeopathic supplements plus the pill. He is taking them well.

Neurofeedback

This intervention has been very good for Jonathan. He has one more session left to complete 40 sessions. When he started, his reading comprehension was very poor. If he read a book, he could not tell me what he read unless he read it at least twice more. Now, he does much better. Although he may not comprehend everything in the story, he is able to articulate what happened and even ask wh questions.

His language has really improved too. Even though the topics he chooses to talk about are not exactly age appropriate at times (lots of talk about the video games he plays and he loses people half the time), he won't stop talking. He is getting better at using common idiomatic expressions and pronunciations like "didn't", "don't". He used to say "I did not ..." or "I do not...". He is using more complex thinking like "mommy, can you take the Nintendo DS back home after you take me to school and before you to go work? Do you promise?".

Unfortunately, we need to stop the sessions because my insurance will only cover 40 sessions since this is an out of network therapy. Too bad, because I really think that this has been very helpful.

Miracles Do Happen

Today I received a phone call from a good friend with a severely affected child. Her son is a non-verbal teenager with seizures. He is very sweet. I met her about a year ago and have helped her to the best of my time and ability with new things she wanted to try for her child. I told her about HBOT, Yasko, Tomatis and Neurofeedback. She attempted all those interventions. Today she called me to thank me for introducing her to Jonathan's Neurofeedback Dr. He started Neurofeedback at another organization a while ago and saw no results. She switched to Jonathan's Dr. about 3 months ago. The Dr. learned, through her initial assessment, where to concentrate to help him. Her assessment seemed to have been right. The sessions have helped with his seizures. He has not had seizures in 3 months. And today, he spoke for the first time. She took him for a walk since it was a nice day. After a bit, he told her "go home". He said it 3 times. This news made me cry. We fight so hard to find these puzzle pieces and when we find one, we claim victory.

She is going to continue with neurofeedback for a while needless to say, as she continues to try other biomedical approaches. I told her about the Zyto energy and homeopathic therapy and she is interested in that. It might give her other clues that can help her son continue to improve.

Never give up! That is today's message. Never give up!

3 Days with no Throat Scratch

This is truly remarkable, so I need to log it. It has been 3 days since we heard Jonathan scratch his throat. He would do it every few minutes, sometimes seconds. He'd make a noise like something is stuck in his throat and he needed to clear it. He has been doing that since he was 3, but lately it got really bad. I got so worried, that this year I spoke with his DAN! and pediatrician about having an ENT do a full exam, including an X-ray. He is old enough and has overcome his sensitivity issues and can be examined by an ENT with no problems. This was driving me crazy.

His pediatrician, during his well visit 3 weeks ago, told me that it was probably a tic and there was nothing to do but try to bring it to his attention often enough so he could control it himself. Believe me we have, and it has not made any difference. I always thought is was an allergic reaction to gluten or spring/fall allergies because it seemed seasonal. And it is hard to control an allergic reaction.

During the Zyto reading (energy reading via the hand) last week, the practitioner told me that normally the throat scratching noise is due to a tic that comes from strep in the brain. Actually, he told me that it is typical of PANDAS syndrome. I have not had Jonathan go through a formal PANDAS diagnosis, but I might. Nonetheless, I thought it was interesting; even more so because he was the only person that possibly knew what it was, and that confirmed that it was not a physical problem with the child's throat.

I started him back on all the Yasko supplements (my poor baby, back to over 50 pills a day, but he is a champion and takes them without making any complaints), but I doubt that the pills have done much with respect to the throat noise because he has taken them before for over 2 years with little effect on the throat issue. Same with the probiotic.

The new things are a very low dose of DMSA/ALA chelation and the homeopathic drops. I discard the chelation pills because I have been chelating Jonathan with other chelators for the past 4 years and they have not had this type of effect. So it must be the homeopathic drops. I started them last Friday. On Sunday, I heard him do it once. Nothing yesterday, nothing today. My dad has also paid attention since he spends the afternoons with him, and he too told me that he has not heard him make a noise. And today, the neurofeedback Dr. noticed it as well on her own. Since I started them together, I have no idea which one caused this reaction.

I'll keep logging my observations. This is very cool.