6 months - 30 DMSA/ALA rounds

It has been 6 months since we started the Andy Cutler chelation protocol. Jonathan had a rough start, particularly with the intestinal yeast. But he has really adapted to it. I eliminated the intestinal yeast with a product called In-Liven. He has perfectly formed stools now and he has no other adverse reaction.

Sick for the first time in almost 2 years

For the first time in almost 2 years, Jonathan got very sick. Vanessa caught a virus from school on Monday and came home with a fever. This turned into a very high fever with a dry cough that evening and all day Tuesday. Jonathan seemed fine. I took Vanessa to the Dr's worrying that it could be H1N1, but the Dr. said that she was fine. Just a virus and that I had to keep her fever down. He expected her fever to last 24 to 32 hours. On Wednesday she was all recovered. But Jonathan came down with the same virus. It hit Jonathan harder than Vanessa. He developed an extremely high fever of 103.9 almost the entire night. I took him to the Dr's on Thursday and he came to the same conclusion. A virus and I needed to keep his fever down which proved to be challenging. Jonathan had very had fever the second night and the second day. We all got pretty scared at some point when it reached 104.5 and the Motrin was not working. I was at work and my dad bathed him with cool water and put some ice on his head. I don't recall Jonathan having such high fever since he was a baby when he had pneumonia. After 48 hours, his fever started to go down. But it was very scary. He also had a bad cough that stated to get better after 48 hours.

New School

Jonathan started in a new private school this year. This school was built for kids with certain types of learning challenges such as anxiety, ADD, and high functioning autism to mention a few. The children-teacher ratio is small so that the teachers can focus on the children. They also offer a number of therapies that we did with Jonathan via private sessions, so we don't have to do them after hours any more. We love it. Jonathan loves this new school, he is doing great and he is learning a lot.

General Observations

In the past few months, Jonathan has continued to improve. I sometimes sit back and reflect on things that he says or behaviors and realize how far he has come. The combination of the neurofeedback, the Andy Cutler chelation protocol and the new school has made a huge impact in his progress the past 6 months.

His brain continues to "wake up". And I don't notice it so much any more because it is second nature now. But I notice it more when other people point it out. When I took him to the Dr's office yesterday, his former pediatrician saw him. Jonathan doesn't like him as much as his regular Dr. because he is a bit rougher. Vanessa doesn't like him much either. The nurse took us in and asked what was going on. I explained and Jonathan added some comments and then he asked which Dr. was going to see him. The nurse told him that is was Dr. M. Jonathan's eyes opened up and he turned to me and said in low voice "I don't like Dr. M Mom. He is rough. Is he going to do the stick in the mouth?" and I said that I knew he didn't like him, but he needed to be brave. He stared at me and I said "be good and do what the Dr. tells you so it doesn't hurt. It hurts when you fight him". And he said "ok mom". When the Dr. came in the room and asked Jonathan what happened (since we had been there 2 days before with Vanessa), Jonathan had a fairly normal conversation with the Dr., explaining that he was sick and that at 2am he had 103 fever and he missed school because he was sick, etc. The Dr. checked him thoroughly and when done, Jonathan turned to me and said "I did it mom. I was brave". And I cheered him and explained to the Dr. that he didn't like the stick and that I had asked him to be brave. The Dr. asked him a few other questions and told Jonathan that he had a "big brain" like his mom, and Jonathan said "yeap, I know. Humongous". The Dr. laughed, turned and said to me "Mom, you made my day. It has been a rough day, but witnessing such miraculous progress made my day. You have done a great job with him. This is fantastic. You made my day. This is just a virus like the one Vanessa had. He'll be fine by Friday. Happy Halloween". My eyes got tearful and I thanked him. I see that there is still so much work to do, but I really appreciate outside feedback to keep me going.

He continues to be obsessed with electronics, now into listening to music and creating contacts in my iPod and sending emails to friends, family and even his school principal. We are working on a reward system so he starts earning electronic playing time because it is becoming uncontrollable.

Despite the electronics obsessions, I am very happy that he finally has gotten into Lego's. I always, since he was a baby, wanted him to play with Lego's and he never liked it. But something changed in the past few weeks. He likes the Lego's with the books so he can follow instructions. He does a very nice job completing them. It is now turning into an expensive hobby.

My concerns continue to be:

• Expressive Language: he still says things that are off, or not socially correct and sounds flat sometimes. He is also very loud. He simply does not speak like other neurotypical kids his age. There are times when he sounds neurotypical, but not 100% of the time. My personal goal is to see his verbal IQ reach 95 by the time he goes to college. With a non-verbal IQ of a genius, he needs to be able to articulate better as he grows up so he can be part of society and become independent by the time he goes to college. But I now realize how hard reaching this goal is. Just before Kindergarden, his verbal IQ was 77. Before first grade, it was 79. And before second grade it was 80. And it is shocking to me because the overall improvements each year have been dramatically, but his expressive language continues to improve slowly compared to other areas of his autism. And his expressive language continues to be my main focus.
• Social Adaptability: he has a serious trouble fitting in with other children his age. If the situation does not involve electronics, he does not play well. Sometimes he becomes preoccupied and rigid and tells the kids not to break rules. If the game is fun, he will play for a while until something makes him get upset and then he turns away. This is another one of the areas I am worried about. As he grows older, he needs to learn to adapt more.
• Playing Skills: Jonathan simply won't play with toys other kids his age like to play with. He doesn't have the initiative to imagine situations and play with action figures, cars, dinosaurs, etc. Despite all the play therapies he has gone through, despite Vanessa's attempts, he simply cannot on his own pick up a toy and play with it. If he doesn't have an electronic toy, or a board game to play with, or Vanessa to guide him, he will simply lay on the couch and suck his thumb. Because he is not able to do this, it affects his playing skills with other kids, which affects his social adaptability.

Overall I am very pleased with the accomplishments. He is more engaged and more social these days. He is doing very well at school, so that part I don't have to worry about. And he is a really good kid, very sweet and with great intentions.

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.