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.

Round 1 - Reacted Well

We started the DMSA/ALA low dose high frequency chelation on Friday 4/10/2009 at 12noon. We also started the homepathic drops. 5 drops of each twice a day. The tablets are on back-order.

I thought it was going to be really hard to wake up twice in the middle of the night to give him the pills, but it wasn't so bad. I did 3 hours both during the day and at the night. The protocol allows for 4 hours at night, but from what I read, it is better to keep it at 3 hours to prevent metal redistribution in the body.

Each weekend is considered a round. From what I have been reading, Jonathan will need about 100 rounds (over 2 years) of the DMSA/ALA combination to see the improvements we wish to see. Some kids may need up to 300 rounds. I hope that 100 rounds are enough :) Time will tell.

I didn't see any bad reactions this weekend. On the contrary, there were a couple of positive observations this weekend.

• Expressive language was better. He articulated more complex sentences. But I am not sure it is related to the chelation or homeopathy. Nonetheless, it is important to note.
• Non-verbal language much much better. On Saturday night, we went to a restaurant with friends. After his food arrived, and looked at him and he must have felt that I was looking because he looked right back at my eyes. I signaled with my finger to him to eat his chicken and he used his hand to signal me to wait and then pointed at the french fries and ate one and I nodded okay with my head. Then I realized that I had just had a perfectly normal non-verbal conversation with my autistic son. That was an AWESOME feeling. Progress!!!! I am not sure it is related to the chelation or homeopathy. Nonetheless, it is important to note.
• Throat tic was vastly improved. On Saturday he scratched his throat less than normal, but today, he only did it one time in the morning. That is pretty freaky. After years and years of this, it was weird to realize that he had not scratched his throat for an entire day. I credit that to the homeopathic drops. I was told that 2 of them would help with bacteria and strep. I am ready for more!
• He is having better bowel movements. They are not as stinky (the past month, his stools were intolerable) and he did not have accidents this weekend for the first time in weeks. The stools are still softer than they used to be, but better somehow. I re-introduced Klaire Labs Detoxifying probiotics on thursday night. Perhaps the probiotics helped with his stools. Or perhaps the homeopathic drops have. That is hard to tell.
  

Still Mercury - Change of Protocols

It has been a while since I last wrote a post. For the past few months I felt very lost with regards to Jonathan's recovery program. He reached a plateau a few months ago and I was sad and frustrated because I, for the first time in 4 years, didn't have a plan. I was hanging on a thing threat with respect to the neurofeedback and I wholeheartedly think that it has helped him, but it is not enough. It is not the "missing link(s)". That somehow has changed in the past week, so I am back on.

Last week, we ran his urine porphyrin again, and it came back with a high mercury toxicity read. It frustrates me that after 4 years of biomed, the mercury toxicity still shows so high.

The first urine porphyrin showed very high levels of mercury, aluminum and lead. We then implemented the Yasko protocol and the levels dropped down to half. It was very encouraging. However, the protocol required additional detox and we could not afford the metals program along with the HBOT. So we chose HBOT and the Yasko supplements, but used suppositories instead to chelate rather then Yasko's metal program. 1.5 years later, the level of toxicity has minimally dropped. That is frustrating. What a waste of time.

Last month, I learned about an energy reader device called Zyto. I decided to have Jonathan do the hand test, and it showed that he has a lot of mercury, that he is a vaccine injured child as his body reacted very badly to the Hepatitis-B vaccine (which I have been saying for the past 4.5 year), the rubella, varicella and flu shots. Vaccine is the major cause of his autism. It infuriated me, but I already knew that. So life goes on. It showed huge amounts of candida as well as strep. Although I thought I had eradicated his gut strep, it seems like he has strep in other areas of his body, including his middle ear and brain. I finally learned that the annoying throat scratch sound he makes is a throat clearing tic from strep in his brain. He seems to have a slight low dopamine issue which we knew from Yasko's mutations and a pituitary problem.

So in an effort to shake things up a bit, I made the decision to do homeopathy along with the Yasko supplements to bypass his methylation mutations and the low dose high frequency chelation protocol from Andy Cutler using DMSA and ALA. Even though Jonathan has a +/- CBS upregulation problem (which causes high levels of ammonia and some intolerance to sulfur), since he doesn't have the SOUX mutation, I have decide to give the Andy Cutler protocol a try. It is pretty much one of the only popular chelation protocols I have not tried. And I am trying to leave IV chelation as a last resort.

I know nothing, absolutely nothing, about how homeopathy works. But many people swear by it and from my conversation with the Zyto practitioner, he indicated that there are certain areas in the body that only homeopathy has a good change of reaching to. There is nothing I can lose and much I can gain. So I am going to give it a shot.

I will log the homeopathy and Andy Cutler rounds weekly and include anecdotes on improvements and regressions so I can keep a log.

Homeopathy

5 products:

Pekana
- Pk - AILGENO (oral drops)
- Pk - apo-INFEKT (oral drops)
- Pk - NEU-regen (oral drops)
Syntrion
- St - SyAllgen (tablets)
- St - SyDetox Complex (oral drops)

The protocol is as follows:

• Day one:
  Pk - AILGENO - 5 drops twice a day
  Pk - apo-INFEKT - 5 drops twice a day
  Pk - NEU-regen - 5 drops twice a day
  St - SyAllgen - one subligual tablet (on back-order) once a day
  St - SyDetox Complex - 5 drops twice a day

• Day three:
  Pk - AILGENO - 10 drops twice a day
  Pk - apo-INFEKT - 5 drops twice a day
  Pk - NEU-regen - 10 drops twice a day
  St - SyAllgen - one subligual tablet once a day
  St - SyDetox Complex - 10 drops twice a day

• Day Seven:
  Pk - AILGENO - 20 drops twice a day
  Pk - apo-INFEKT - 5 drops twice a day
  Pk - NEU-regen - 20 drops twice a day
  St - SyAllgen - one subligual tablet once a day
  St - SyDetox Complex - 20 drops twice a day

• On day 35, we will do the Zyto test again

Andy Cutler's Chelation Procotol:

Chelation agent(s): DMSA + ALA

Dose frequency: DMSA + ALA (together): every 3 hours, including at night.

Dosage:

• DMSA (alone or in combination with ALA): 1/8 to 1/2 mg of DMSA per pound of body weight, per dose
• ALA (alone or in combination with DMSA): 1/8 to 1/2 mg of ALA per pound of body weight, per dose
  

Ratio of DMSA to ALA (if using both): A 2:1 ratio for the first 4 weeks. 1:1 ratio after.

Length of cycles: 3 days on, 4 days off.

• Friday after school until Monday morning = 2.6 days.

Supplements:

• B complex, C and magnesium should be given 4 times a day. The B and C are not effective if not given 4 times a day due to their pharmacokinetics.
• Zinc, E, carotenes, etc. at least daily.
• Yasko supplements for body support, mitochondrial cocktail and methylation mutaiton by-pass.
  

Jonathans' weight: 71 lbs

Chelator	Date	Dosage	Dosage Per interval	# of Dosages
DMSA Dosage	4/10-4/13	1/4	18 mg	22 (1 every 3 hours)
ALA Dosage	4/10-4/13	1/8	9 mg	22 (1 every 3 hours)
DMSA Dosage	4/17-4/20	1/4	18 mg	22 (1 every 3 hours)
ALA Dosage	4/17-4/20	1/8	9 mg	22 (1 every 3 hours)
DMSA Dosage	4/24-4/27	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	4/24-4/27	1/4	18 mg	22 (1 every 3 hours)
DMSA Dosage	5/1-5/3	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	5/1-5/3	1/4	18 mg	22 (1 every 3 hours)
DMSA Dosage	5/8 - on	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	5/8 - on	1/2	36 mg	22 (1 every 3 hours)

After 5/8/2009, same dosage for 6 months and I will do another urine porphyrin test to check progress.