18 Rouds of DMSA/ALA

It has been a while since I last wrote an update on this blog. For a while I didn't see much difference in Jonathan. And my current job is so incredibly demanding, that I rarely have any time lately to search the web or update this blog. However, I want to note some nice improvements so I can keep a record of them.

He starts a new school this year. It is a private school that will incorporate most of the therapies that he normally obtains privately in his daily routine. We are extremely excited about it and I know we are going to see great improvements this coming school year.

Here are some areas that I have seen major improvements and wanted to highlight:

• Haircut Mastered: Last weekend we took the kids to get a haircut. I have to note that for the first time EVER Jonathan did not move an inch. The lady cut his hair and when she used the clippers, he simply said "when you cut my hair behind the ears it tickles my back a little bit", but he didn't move. He was GREAT!!!!!! If you have followed this blog for the past 2 years, you'll know that this has been one of areas that I use to compare his sensory integration issues and recovery. Even with high yeast (his yeast is out of control) he did not move. Big plus here!
  
• Passed Swimming Test in Public Pool: This past weekend, we took the kids to the pool at his grandmother's community and the lifeguard told us that the kids could not go passed 3 feet by themselves unless they took a swimming test. At first I was worried. Jonathan has been taking swimming lessons since last October, but he repeated Level 2 and he is going to repeat Level 3 because unfortunately he is not very athletic and has trouble with the forms. Vanessa however is turning out to be a pretty athletic kid and she is going quite well in her swimming lessons. However, Jonathan decided on his own to take the test, and Vanessa decided not to do it. Jonathan had to go from one end of the pool in the deep area to the other end and back and then stand in the middle moving his legs without swimming for 30 seconds. I watched nervous that he was going to get tired in the middle of the pool and sink. But he didn't. My heart almost came out of my chest when the lifeguard told us that he passed the test. I was so worried that I didn't even record it. He was so proud of himself that he went to the deep side after that several times. I am very proud of him. This is a great great accomplishment.
• Coping Very Well with Summer Camps: We enrolled him in regular summer camps under the local community center. They have several types of classes. We selected mostly sports camps to help him lose weight and keep him moving. At the beginning of each week, I turn in all the forms. In one of the forms I disclose that the has Austim, but I don't tell the teachers the first day. By the end of the week, Jonathan is acquaintance with all the kids and first with 1 or 2, and with the teachers in his group. He has enjoyed all the camps. His favorite has been the Gym and Dance camp and wanted to be sent back there. They didn't offer any more sessions, but I will keep in mind for next year. Check out the video below. He is the only boy and loved it!!!
  

• Board Games: He started loving playing board games last year. He is either an electronics kind of kid or board games. He is not a "doll or monster or lego" kind of kid. His grandmother got him playing a couple of years ago and played with him every time she could. But all of a sudden, in the past few months, Jonathan developed a passion for Monopoly. He is learning the rules about money, property, trading, taking risks, etc., so well that he beats us. Sometimes he wins, sometimes he loses. And he takes each time very well. He loves to talk about it. He loves to beat us and laughs at us in a "ha, gotcha!" kind of way. Although it has turned into an obsession and we are unsuccessfully trying to get him to play other games, I do believe that this is a very positive because it shows him rules of life, engages him with a group, teaches him strategy, etc. His math skills are also improving dramatically.
  

I am sure there are other areas that I am missing, but these are the ones that come to my mind at the moment. He is having some trouble with the chelation because has produced a great deal of yeast. But overall, I am very very happy with the DMSA/ALA combination and I wish I had done it 4 years ago. Better late than never. It is opening a new door, cleaning up some residual stuff that prevents him from continuing to recover. I ordered a new probiotic and will test his liver functions to check if I can get him back on diflucan. He is ultra sensitive and whenever we tell him not to do something, he cried. That is typical of high yeast in him.

Overall, he is doing great!

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.

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.

28 Neurofeedback Sessions so Far

It has been a while since I wrote. My life is very hectic at the moment. And I don’t see the big gains anymore, so I am not as motivated. But it is very therapeutical for me, so I’ll try to get back into the routine.

Jonathan has completed 28 neurofeedback sessions. We started back on January 6th. I feel he has made some progress. His language is more complex, his thought process is more complex. He seems to think things through a bit more than before. For instance, this weekend we went to visit our friends and Jonathan started playing the Wii with his friend C. After while, they sat down to eat and when Jonathan was done, C asked Jonathan to go back and play one of the level by himself. Jonathan must have thought that it was odd because he turned and asked him “why?”. C. told him that it was because he wanted to see how he got past a bad guy while he finished his dinner. And Jonathan said “ah, ok. Sure”. In the past he would have just said sure instead of thinking about the reason behind the question. I find that to be positive.

He had the TOVA test done this past Saturday and the Dr. believes that his attention span has improved. His agility has slowed, and that is because he is now thinking things through more than doing things impulsively. She is going to concentrate on the frontal part of his brain to speed that up a bit.

We are looking into moving Jonathan from the public school into a private school that will give him all the therapies that he needs throughout the day. I am very excited about it. We are in the registration process. In the meantime, I need to find summer activities for him.

Improvements:

• Language (expressive): intonation is better, thought complexity, he can express his needs better.
• Comprehension: I believe this has improved since January.

Areas of concern (besides language):

• Language (expressive): there are words that he is having trouble pronouncing.
• Stims: He is still humming. He also walks in his tip-toes more frequently lately.
• Auditory Memory: Even though his attention seems to have improved, he is having a hard time responding to people when people ask him questions if his attention is not grabbed first. If I walk by and ask him to put his shoes on while he is watching TV or playing something, he completely ignores me. But once I call his name (sometimes loudly) and he turns to engage me, he can often do what I ask him to do with one or 2 prompts.
• Sensory: he still needs sensory input. He keeps moving. And he is very sensitive to haircuts again. I thought we had overcome that issue, but it is back.
• Lazy: I don’t know if it is laziness or low muscle tone, or other issues, but he doesn’t like to do things on his own. And when I confront him he tells me that he is tired (brushing teeth, changing clothes, biking, climbing). But as soon as I give him the ok to play the Wii, his energy is back.

Time to Rethink My Strategy

The time has come to re-evaluate my strategies. I have been easing off for the past 2 month. Part being overwhelmed with work and autism stuff. Part not feeling as much pressure on my shoulder because the doctors are giving us a good prognosis. However, I think that was a bad move. I see his language getting dramatically better, but his behavior is regressing.

This weekend he did something he had not done in a long time. He put music CDs in the DVD player to listen to music. But what was worse is that he realized that the PlayStation 3 can show images on the TV while the music plays (much like Microsoft Media Player) and wanted to do that for hours. What a set back. And today, he begged me to let him watch his favorite VHS from when he was a baby: Baby Einstein. He sat on the sofa, and hummed the music while he watched the images spin. Now, that is total regression.

I am getting all his supplements back into a regimen again this weekend. I am missing few, so I'll go to the apothecary and get some on Saturday. I am also thinking that the neurofeedback therapy must have triggered something in his brain. His language (vocabulary and sentence complexity) is really much better than the past 2 weeks. Something is working. But something is not also. I am not going to stop, but I need to find out what is going on. He is now very irritable and does not tolerate routine changes without putting on a fight. He was always pretty flexible unless he was really obsessed with something. He is now very defiant. I don't get it. Not aggressive physically. Just with words and language tone (high tone, almost screaming).

We went to see his DAN! last week. Vanessa came with us and he behaved very well. He seemed pretty neuro-typical to the doctor. But that is the problem. He is not always NT. His obsession with only playing with electronics and ZERO with other toys is really bothering me. He started getting interested on board games, but he quit them also. The Dr. gave me a couple of tests to do. I will do them this weekend. And start chelation again next week.

NeuroFeedback Therapy

It has been almost 2 months since I last wrote a post. I have to be very honest and say that I burned out.

Jonathan is doing well. But he has plateaued. I am burned out and don't want to deal with the supplements, the diet, the therapies, the endless nights reading about new findings, trying to put the 3000 piece-puzzle together. I needed a break. I still have not gotten a full grasp, but I did start something new and I want to track it.

We started neurofeedback therapy on January 6th., 2008. He has had 8 sessions. I don't see much improvement (any really) and I hope that we get reimbursed by the insurance because it is expensive. But he is off all supplements and that may be a reason why this is not showing the improvements I expected. Time will tell.

IEP Updated - Social Goal Added

It has been a while since I last updated this blog. I have to admit that I have been having a difficult time trying to deal with regression and with the new social issues that Jonathan has at school. But time mends things.

I did make mention I believe that I was going to start Jonathan on a homeopathic drop to address his intestinal strep. I started him on the San Strep a couple of weeks ago and to my surprise, his stools normalized. They are whiter than normal which is strange, but they have a good consistency. His OCD has not changed, but his sensitivities have. We took him this weekend to get a haircut and he did not move while the lady was using the clips. I also cut his toenails and he did not complain or moved. He had mastered this a few months ago, and then his gut got out of whack and he went back to being very sensitive. Now that his gut seems to be in better shape, he is back to not being so hypersensitive to touch anymore. To me this has always been yeast, but it could be leaky gut issues that are being addressed with the drops. Hard to tell.

We met with the school representatives a week and a half ago and updated his IEP. The speech therapist was nice and said that she was going to work on his tone (sometimes he screams to his classmates in class when they are not doing something right, sometimes he doesn’t understand social cues). She said that there were a couple of programs that could help him. In addition, he is going to be pulled twice week during lunch to sit with the school psychologist and a social group that she created and also with the special education teacher assigned to him (separate days). They did not say how they would report his progress. I am a bit tired of them lying to us by telling us that they would report weekly or monthly or via email and they never do. I want him to finish this year and if I don’t see improvements by March, we are thinking about private schools.

The past 2 weeks he has been playing lots of pretend with Vanessa with small toys, mostly animals. On the downside, he has been very intense, crying all the time if he doesn’t get what he wants, or being very pushy.

Social Problems Continue at School

Last week was a very frustrating week for me. I know that our lives with autism and dealing with school are going to be hard, but I am starting to feel what it is going to be like and I really don't like it. I am not sure what to do, how to react.

Jonathan is having a hard time socializing with the kids in his 1st grade section. I don't know if it would be better in a different section. I don't know if this teacher is better or worse than other 1st grade teachers. I don't have time to volunteer in his class to observe the dynamics. But I do know that Jonathan had mastered social skills in Kindergarten with the teacher he had (she was (is) awesome) and here they are going to add a new goal in his IEP this coming Thursday to handle social skills because he is not doing well.

Last Thursday, while he was in class, sitting at his desk doing his morning work, he felt someone push him very hard and since he wasn't expecting it, he couldn't control his movements. The top of his head hit the edge of his desk. He was taken to the school clinic and the nurse didn't see anything major. When he returned to class, he thew up a lot so they took him back to the clinic and called me. The nurse asked me if I could be there in 10 minutes because throwing up right after a head injury means concussion in their book. I told her that I was 20 minutes away, and she told me that they had to call 911. I told her to go ahead and ran out to the door. When I arrived, I spoke with the paramedics and the guy said that he believed he could have had a concussion and urged me to take him to his pediatrician. He asked Jonathan to again explained what happened and he showed us. He was very detailed. But he didn't know the names of the kids that were standing behind him. He still doesn't know everyone's names. The assistant principal was there and told me that she was going to investigate.

I took Jonathan to see his pediatrician and he told me that indeed he had had a concussion but it was mild and didn't need to have x-rays done unless he threw up again. He told me to keep him awake until the evening and to call him if anything changed. But I noticed that the had forgotten somethings like he forgot that he hadn't had breakfast that morning. I didn't make much of it, but it seemed strange because he has a very good memory.

The next day, I called the school and spoke to the assistant principal. I asked her if she had investigated the event, and she said that she had, and after asking the kids that Jonathan thought he had saw behind him and they all said that they didn't push Jonathan, the assistant principle asked Jonathan if he had done that to himself and he apparently said yes. That comment infuriated me, but I chose not to fight with her. Jonathan has NEVER self-injured and that was just something he would have not made up. But if you sound convincing, he might give into what you said and I feel (even if it was not the case) that he was manipulated to admitting that he did it to himself. The next day, his memory was not perfect and when I checked with the doctor he said it was normal. But he did not lie (he doesn't really know how to lie that well).

A couple of months ago, he was in a situation with another boy who hit him intentionally in the lip breaking his lip and sending him to the clinic because the kid didn't like that Jonathan didn't want to do what he asked him to do. When I told Jonathan that it was probably and accident, he told me that it wasn't. The same situation happened here. He told me with details what happened, but his memory was blurry the next day and the school put it back on him because he cannot express himself perfectly. I feel betrayed by the school and the system. If this is happening now, when he is only 6, what should I expect when he is in middle and high school?

We have an IEP meeting this coming Thursday to discuss the new goal and I will challenge them about what happened. If I know of any new abuses, I will request that he is moved to another section.

Back on Gluten Free - Regression Stopped

Last week I decided to go back to the GF/CF diet. I had the feeling that Jonathan’s intestinal strep returned and he has tremendous leaky gut (his dad had strep throat 3 weeks ago). So I went cold turkey on him and just gave him gluten free foods. Boy I am glad, because on Thursday he was speaking very nicely and his pretend play returned. The fog lifted again. Not 100%, but enough to give me an idea that his gut is out of shape. On Friday, he had pizza, and he started making a strange sound with his throat which he does whenever he eats gluten and it affects him. So, back today on gluten free again. I did tell him that he needs to be on this diet, and he was mad that he couldn't eat pizza. So I promised him that I would go today to the grocery store and get him the special pizza. He was happy with that and promised not to eat anything that mommy didn't give him.

I decided to search my Yahoo groups for ideas and learned about a homeopathic drop called san-strep-drops. I read that it is very helpful with intestinal strep. I ordered them and I have not received them yet. I want to give that a try.

Also, since he is now taking pills (life is good!), I decided on Friday to add Phosphatydilcholine back to his diet. The pills are huge and they were hard to open. But he is taking them easily. I can’t say that I see lots of improvements with it yet, but I know he needs PC.

This week I ordered a number of supplements that I had not given to him in a while. I believe he is ready for them. His stools are better (I believe it is because now that he takes the pills, I don’t mix them in prunes). I am going to finish the EDTA and DMPS that I have in the refrigerator, and I am going to give that a break for a couple of months so I can see if the new supplements work. I also stopped the diflucan. I didn't see improvements and I know it hurts his liver. I ordered candex to help control his yeast.

I feel better this week. He has returned to how he was about a month ago (actually, I think he has improved) and I can talk to him and he can clearly understand me, and his language has gotten smoother. He is now self-sufficient (he dresses completely on his own - both pajamas and regular clothes, sweaters (if they are inside out, he will fix them before putting them on), jackets, shoes, etc.), he brushes his teeth on his own, he even wanted to shower on Saturday by himself, but I told him he needed to wait for me. We are doing more complex negotiations.

So I am ready for the next steps.

• I have put together a new nutritional supplementation plan that includes a number of supplements that Yasko recommends for his mutations, plus supplements for the Vitamin K protocol, the homeopathic drops for strep and the new glutathione patches. I should receive everything this week.
• I got him back on gluten free and casein free diet (except I give him yogurt). That I feel will help tremendously. He might have to be on this diet for a very long time. I thought we were good to go, but we are obviously not.
• We are also going to start on the home listening program again today. I bought it a couple of months ago, but when I attempted, he was so weird that he didn’t pay attention. He is ready now.
• And I need to find time to meet people in my neighborhood that he can play with. He needs to have more play-dates. I am going to give the top 3 items a chance to start working before I start putting a play-date plan together. I am also going to contact the RDI person that the Children's Hospital doctor recommended. She might be covered under my insurance.

Parent - Teacher Conference - 1st Grade

We are beginning to worry that Jonathan's minor regressions are sticking. He seems very absentminded, he is moving a lot again, his OCD has returned, and he seems in his own little world more than normal. I believe it has been 2 weeks since we noticed the regression.

Javier and I are a bit down this week after having the parent-teacher conference with his 1st grade teacher and also seeing that he is regressing. Academically, the teacher said that he is doing really well. He is even a bit more advanced in writing and math. She told the OT, ST and special ed teacher that she didn't understand why he has an IEP when he is a very good student and they told her to make sure to tell us because they know how far Jonathan has come these years and they fully credit it to our hard work and dedication. But the area that the teacher is very concerned about is his social skills. He has no friends. He doesn't hang out with anyone. Had not identified himself with any of the little groups already formed. He is a loner. During recess he is always by himself. His social interaction is so isolated, or better yet non-existent, that the Special Ed teacher and the 1st grade teacher suggested that a short-term and long-term goal are added to his IEP asap. In addition, they suggested the he starts participating in a social program that the school psychologist has. They are going to speak to the psychologist and let us know when he can start.

In kindergarten, he seemed to have more friends than now. But even though it hurts me dearly, it is no surprise. I have been trying to tell everyone at school that he has a social problem and they removed the goal from his IEP while he was still at kindergarten. But his 1st grade teacher spoke to the Special Ed teacher because she has seen hundreds of 1st graders and Jonathan's lack of friends and social involvement in the classroom worries her. She also witnessed a situation that raised a red flag in her head immediately. There was a child this past Tuesday in recess that fought with another child and was by himself. The teacher noticed that Jonathan was alone in a corner walking around and approached him. She asked Jonathan if he could play with the child because he was a great friend and Jonathan, after seeming like he was thinking about it for a few seconds, turned to his teacher and said "my brain is very big". The teacher could not say much and told Jonathan that that was great. She didn't tell us whether Jonathan did play with the kid or not, but I didn't care to hear anymore about it either.

Minor Regression / Started Swallowing Pills

It has been a few days since I last posted any observations. He seemed to exhibit some minor expressive language improvements, but nothing very dramatic. Last week, we all got home at home. I had a bad cold and his dad had strep throat. On Saturday 10/18/2008, he seemed to exhibit some signs of a cold. But the next day, all symptoms were gone. He has progressively since last Saturday regressed behaviorally. Not too much to be too disruptive, but enough for my husband and I to notice and worry. But what is bothering me is that he is not responding to his name when we talk to him unless we get in his face.

Yesterday he had 2 slides of pizza and his eyes simply looked totally drugged. That is so scary to me because I thought he was over with his insensitivity to gluten, but he is not. In fact, there is something really wrong with his gut. His stools are a mess, the diflucan is not helping and now gluten is affecting him again. Also, the past week he has been overly obsessive about watching a movie (Madagascar) like in the old days. 3 or 4 times a day and melts down if we say no. That to me is strep. He has viruses and bacteria in his body again.

On a positive note, this week he started swallowing pills. I was so worried for years to have him do it (lots of kids start as early as 4 years, but I was not ready to teach him), but lately he could not take the mesh that we make every day with all his pills (we open them into prune baby food). His taste is getting better and with that comes rejecting really nasty stuff. Today he swallowed all but the Vit. C which is very very big. That one we opened into the baby food.

Very Active Weekend

This weekend we decided to take the kids to an amusement park with several friends since it was a beautiful weekend. There were 15 of us (8 kids, 7 adults). Jonathan was very excited. He loves this park. When we met the other folks, Jonathan immediately joined the other 3 boys in play. They got on most of the rides together. We later broke into separate groups because some wanted to do rides that Jonathan doesn’t like. We went on a 3D ride. Later that evening, we went to a restaurant to have dinner, and Jonathan was playing with his Dad’s iPhone, when one of the boys took it and started playing. Jonathan did not say anything and just watched him. Another other boy came and started talking with the boy that took the iPhone and pushed Jonathan to the side and told him that they didn’t want him to play with them. Jonathan was heartbroken. He cried and I took him to the bathroom when he told me what happened. He asked me “why mommy, why don’t they want to play with me?” I told him that I thought it was probably a mistake, but it wasn’t. These are the types of problems that Jonathan is going to face now. Since he doesn’t quite know the unwritten rules of society yet, he gets pushed to the side. The other 2 boys have ADD and are having trouble at school with their academics and memory. I was talking to their moms before that happened. They are so worried about how to get them to pay attention, learn and complete their work. I, on the other hand, have no trouble with academics or memory. Jonathan is advanced in those areas. But he evidently still has social problems that will become more prominent in the future. The other 2 boys are very social. Funny how these things work.

On Sunday I took the kids to the museum. Jonathan started to show lots of interest a couple of weeks ago to things that he never cared about before. So my new therapeutic strategy is to expose him to as many experiences as possible. Less TV and video games during free time and more nature and other activities. He was very excited in the museum. We went to the insects exhibit and he loved having insects in his hand. We entered a room full of butterflies and that was great. He was so gentle yet started matching all the live ones to a cheat sheet they gave us. He was amazed to see one eat. We saw dinosaurs, and whales. We went into a store (Vanessa wanted to buy a stuffed whale) and he bought a necklace with a blue whales . He sleeps with it he loves it so much. He prefers live animals to museum skeletons. I am going to make a schedule of activities that will include going to see live animals (zoo, aquarium, horseback riding, etc.)

Since Monday was a holiday, I took the day off and took the kids to a park that is by a river and has lots of rock to climb. We made a barbecue and Jonathan was very curious. First he reacted like the teachers are teaching him at school “mom, fire, smoke. You have to dock if you see smoke”. And he did. I told him that it was a BBQ and that was the way to start it and it was not going to get to anyone. So he relax and watched his grandfather set the BBQ with charcoal and a match. Then he watch me put the full on the grill and was curious how the food was going to cook if the fire was gone. And I showed him that the charcoal was very hot and that is how the food cooks. He later played ball with Vanessa, and collected leaves that fell off the trees. Then they played climbing on the rocks. It was a fun day and full of new experiences.

This morning, he woke up and thought that he had his field trip to the pumpkin patch. I couldn’t find the note, but he remembered that something was due on the 14th and that he had to wear long pants and long sleeves. So he changed back and when I found the note, I learned that what was due today was the authorization note with the payment. So he is remembering things. So he changed back to shorts.

I changed his probiotics on Friday to Klaire Labs Detox formula. I was giving him VSL#3. That is the only change and on Sunday his stools were finally firm. He has had very soft stools for the past 4 to 5 months. It could have been the very strong VSL#3 formula. I’ll keep monitoring.

(HBOT 160) - First Fight at School

Today was the last day of HBOT. We completed 160 hours. Amazing. I need a break. Over two months of getting home at 9pm was getting old. He did well during all the dives. I noticed some subtle improvements, but I expect some more a few weeks after the sessions are over.

Today he had his first fight with another kid at school. It wasn't his fault and the teacher was extremely apologetic. But it was a new experience. He decided to join a couple of classmates during recess for play. The game was about super heros and one of the kids told Jonathan to be the bad guy. Jonathan refused and the kid got mad at him and hit him in the mouth with his head. Jonathan was taken to the school clinic and treated while the other kid was taken to the principal's office and his mom was called in. School called me too to let me know that he was in the clinic but I didn't get any more details. Jonathan was upset about it when he got home. During the HBOT he told me what happened and I told him that it was probably an accident and he said "no mommy, it was not an accident, the boy really wanted to hit me". When I got home, I read a note from the teacher and called her at her house. She explained what happened and apologized. I feel bad for Jonathan that this happened, but it is all normal stuff and that made me very happy. Kids fight all the time. Although I don't agree with the boy's tactics, I love the fact that Jonathan went to play, did not agree with the rules and expressed himself. Perhaps next time he will defend himself.

(HBOT 156) - Hungry for More Independence

On Tuesday, when I checked Jonathan's backpack and the "Tuesday folder" (public schools send information home for parents to review in a special folder every Tuesdays) I found October's school lunch schedule and Jonathan was very interested in reading what the cafeteria had to offer every day. He told me which days he wanted to eat at school "like other kids" and what days he wanted me to pack his lunch.

He has been buying lunch on Fridays since he started. And he likes doing what other kids do. But he is a picky eater, so he won't eat quesadillas if that is all they are selling. But he really likes using his own lunch money. He knows his "lunch money" number and feels like the other kids. So he picked more days he wanted to use his own lunch money and order himself.

Same thing applies to snack time. I know that for snack they can get ice cream, so I asked him if he was going to also buy snack, and he said "mommy, on Thursdays they only have orange ice cream. Yikes." He was so cute.

He has been reading a lot this week on his own. Particularly a couple of books that he brought home from his school's library and from his own book collection. He is reading fast lately. But I have been paying attention to his eyesight when he reads and he tends to move his eyesight. The lady that wrote to me a couple of days ago about the vision problem might have hit a good point. What I thought could be dyslexia can actually be a vision problem. I am going to look into that. Thanks Tammy.

Another note for this blog is that he has not had a single bowel movement accident since he started diflucan again. His stools are not yet in the consistency they used to be, but he is able to control his BM. That is a big relief.

(HBOT 153) - Summary of Outstanding Issues

I am over Jonathan's DAN! Doctor's observations and prognosis, and back to my "looking for a cure" mode. For the past 4 years I have been focusing on sensory/OCD/stims/anxiety/language problems. And he has overcome many many obstacles. But he still shows ASD symptoms besides language. So this week I observed him very closely to try to pin-point those areas:

• Stims: he hums constantly. He cannot help it. I tell him and a second later, he is humming again.
  
• Odd behaviors: they are subtle, but they exist. For instance, yesterday when we arrived at the rec center for swimming lessons, he went to the front desk, got really close to the clerk and just stared at her with his eyes exaggeratedly opened and a big smile. He didn't say hi and he looked weird. So I immediately intervened and told him to say hi. He does this behavior with strangers all the time. He also likes to get very close to people's faces, particularly other kids or people very close to him like parents and grandparents.
  
• Play skills: even though he has shown to be able to do some pretend, it does not come naturally for him. Vanessa yesterday sat on the floor at my cousins house with 7 princesses dolls and played making up stories and having each doll talk to each other. Jonathan on the other hand was bored. He doesn't know how to entertain himself unless it is with video games or playing with other kids (particularly when it is tag or hide and seek). I keep getting small toys, but he looks at them and then puts them down and moves on.
  
• Empathy: Jonathan shows some type of empathy, but lacks in my opinion the ability to put himself in someone else's shoes. If he hurts Vanessa, he is not concerned about how Vanessa feels but that he did something wrong and I am going to say something to him so he apologizes to me instead of Vanessa. When someone cries around him, he points it out but doesn't really go to the person and hugs the person. Vanessa, who is only 4, will do that. When Vanessa is watching a movie and something bad is going to happen, she covers her eyes as she can put herself in that actor's shoes. Jonathan just watches what is going on, and may get scared, but does not put himself in the actor's shoes. Or if someone is sleeping, he doesn't care to wake them up. Vanessa on the other hand is very gentle.
  
• Dyslexia: as part of 1st grade, Jonathan has to read for 15 minutes every day. We read at night and I noticed the past week that he skips words, reverses words and puts words where they don't belong. I need to put my finger on each word so he can concentrate.
• Eye contact: his eye contact is odd. His eye contact is best when he is listening to instructions or comments, but he has very poor eye contact when he speaks. I keep forcing the issue and tell him "look at me" every time I remember to. It is hard for him. Facial expression looks a bit weird when he does engage in "forced" eye contact. It is like his eyes are looking at me, but his sight is lost somewhere. But because he has fairly good eye contact when he is listening (his expression is normal), most Drs. make a note on this behavior as "good eye contact".

I will continue with the therapies that I have in place, and will continue to look for new and innovative ideas. I am not sure how much actual brain damage there is and how much of that damage can be "reversed" as Yasko puts it. But I guess that is my quest.

New observations:
I started him on diflucan last week and his stools are getting better. I am also waiting for the Listening Therapy home program which should arrive sometime soon. I am considering, after HBOT is over, to do a few neurofeedback sessions at 7am so he doesn't miss school. That may help with some of those brain connections. I am also considering re-doing Yasko's nutrigenomic test since there are a few new mutations that I don't know about. Always looking for new alternatives.