Sunday, April 27, 2008

Sensory Sensitivity Issues are Dissapearing

Between yesterday and today, I realized that Jonathan's high sensitivity to touch may be totally gone. It started to improve when we started biomedical interventions. And since last summer, he has been more willing to try more things. But this weekend was exceptional.

Yesterday, he played at a birthday party with other kids barefooted and in a bathing suit without a shirt, getting wet and walking and falling down on grass. Last summer, he had to wear swimming shoes to walk on grass. And he would not touch it. Yesterday, he did not have any issues walking barefooted on it. He did not have problems playing with a bunch of 6 and 7 year old kids (rough kids - Vanessa could not play for more than a few minutes without getting hurt). He was not overwhelmed about the number of kids and the types of games they were playing.







He was very curious about the piñata






But I test the level of tolerance based on his reaction when getting his hair cut.

Haircut Problems History

I have been posting about his improvements when getting a haircut. But today was by far the best ever!. I feel that he mastered it. Here is a recap.

When he was a baby (7 months), I cut his hair real short (Old Wives' Tale that if the head was shaved early in life, their hair would grow thicker and fuller). I used a hair clipper and shaved it all off. He had no signs of sensitivity problems. Actually, he was smiling.

When he was 18 months, I took him to Cartoon Cuts and they cut his hair and put it in a small bag labeled "my first haircut". He did not have any problems.

His hair was so fine, that I decided to just trim it once in a while instead of taking him to the hair cuttery. He was very good. I would sit him in his high chair, put a towel around his neck and he would be watching a cartoon while I cut his hair. No problems.

During the summer 2004 (he was 2y 4m), Daddy and I decided to take him back to Cartoon Cuts to get his hair cut really short because he sweats a lot and I could not get it really short with just scissors. I sat him on my lap and although he was a bit uncomfortable with the clipper, it wasn't bad.

Jonathan's sensitivity to sound, touch, light, and different tastes became exponentially out of control about a month after his second flu shot when he was 27 months.

We went back to get a haircut when he was 28 months, before we went to the beach, and the lady could not use the clipper, and had to use baby scissors because Jonathan would scream if she used bigger scissors. It was a horrible experience and I decided to cut his hair from then on. I would trim it in the bathtub. He was diagnosed when he turned 30 months.

We decided to try the hair cuttery again 2 years ago, when we turned 4. His touch sensitivity had diminished tremendously by addressing yeast. So we decided to give it a try. It was a horrible experience. It was so bad, that the lady even cut him a bit on his back neck because he could not stop moving and screaming. From that day, every time we went, we told them no clipper.

After we were done with the first 40 HBOT dives (summer 2007), we took him and he was able to tolerate it better. Just like the dentist, if he knew ahead of time what to expect by touching the device, he could control himself a bit. However, he had to hold my hand and would move uncontrollably. The neck clipper was always problematic.

The last time we went (I logged it in this blog), he was much better. The clipper would give him a tickle sensation in his back and that made him move, but at least he would not cry or scream or move uncontrollably.

However, today he totally mastered getting a haircut. The video is a bit long, and unless you have a child with autism with sensory integration problems and have lived the nightmare of getting him/her a haircut, this looks like a normal behavior. I wish I had taped him in the past, but it was so overwhelming to deal with this, that I never video taped his horrible behavior. So to us, this is actually a huge milestone in our recovery journey.

Friday, April 25, 2008

Energy and Endurance Keep Improving

I received the blood work for the mitochondrial disorder markers. I must admit that I was disappointed to see that they are normal because I continue to look for his missing link. The search continues...

This past week, Jonathan has shown to be more energetic and coordinated. In the past month, since I stopped the CCK, and a few herbs, his hunger has dropped. And as a consequence, he has lost 4 pounds. I think that he lost them because he is not pigging out like he used to and he is jumping on the trampoline more and doing more exercises both at school and through Tae Kwon Do. Don't get me wrong, he still eats like a champion. Just not all the junk food anymore. And I am going to continue to increase the amount of vegetables and fruits. Little by little.

We got the report card for the 3rd period and he got a 4 out of 5 in all areas. That is what he needs to pass Kindergarten I believe. The teacher also made a comment that Jonathan has improved in this period and urged us to read with him more to help him understand what he is reading. That is the hardest part right now for him. It is called "hyperlexia". He reads very well, but does not understand what he is reading (pragmatics). He is getting better.

He had a rough day at school on Wednesday it seems. I didn't get details but got the log marked with half the square. Which means lots of prompting took place. However, there were no issues the other days. Perhaps a bad day (like we all have sometimes).

Here is a short video of him at Tae Kwon Do. Notice how he is paying close attention to the Master, he turns to read his body language, he starts quickly and with good balance (they did this for 15 minutes and by the end, all the kids were practically walking), and he works hard to tag the kid in front of him until he does. Notice his reaction when he does it. Very appropriate for a child his age.



Saturday, April 19, 2008

4 Weeks After HBOT

This week has been phenomenal. Jonathan has been doing very well at school, he has been very engaged at home, his language is much better, he is much better at reading body language and facial expressions, he is also much better transitioning from activities to different ones.

We went to a party yesterday, and he was happy and social with everyone. He is not the type to invent games, so he stuck to playing with my phone. But one of our friend's come over with his kid and Jonathan really likes playing with him. A. was great and flexible and played along with whatever Jonathan wanted to do.



Today we went to the amusement park, and I was truly amazed to see how well he did. He was a "normal" kid. Had so much fun, was so engaged with the other kids, played all the games, even asked us to get him a sword and played with it.

We had a very fun day with the kids. Here are some pictures.




Anxiously waiting for his turn. No pushing, no strange behaviors. Just stood and observed the ride until it was his turn. When the lady opened the gate, all the kids ran to the helicopter. He wanted that ride also, and noticed that there was another one, so as soon as he saw 2 kids started climbing into one of them, he ran to the other helicopter and when he got there, he turned and yelled at C. and N. to come join him. Another kid got in as well. He had excellent motor planning today.


He loves to drive cars. And C. was so excited to spend time with Jonathan, he wanted to get on all the rides with Jonathan. So they both drove this Jeep twice together.




He loved climbing these rocks and had pretty good balance, but I can tell that he needs to do it more often to gain more confidence.

While Jonathan was with Daddy at a ride that Vanessa cannot get onto (she is not tall enough), she decided to get her face painted.

Jonathan really liked it and decided to get it done also. He picked out the design he wanted.

Vanessa was very proud of her unicorn face :)

We had attempted in a couple of occasions in the past to get Jonathan to get his face painted. But due to his sensory integration problems, he could not tolerated it. Today he amazed us. He did not even move. He sat still and enjoyed every bit of the painting.



This is a great milestone that we have mastered. Sensory Integration dysfunction was the first thing that was diagnosed. No one could even touch this kid he was so sensitive. And now, he can get his face painted. Amazing!!!

He is turning out to be quite independent. He knows how to get his own tokens and will not let me do it. I give him the money, he gets his tokens, put them in his pants' pockets and goes to play. My baby is growing up.

He absolutely loves air hockey.

The improvements are truly amazing. In the 7 hours we were at the park, he did not complain once that he was tired. He actually was full of energy.

On the way home, he spoke to me for about 10 minutes about the solar system, the planets, the earth's core and crest, etc. These are topics that he has been reading in a book at school and he is very curious and likes this subject. After he was done, my husband and I discussed how we know that Jonathan will always be driven to those subjects, math, physics, etc. And I told him that my biggest concern is to get him to speak like a 6 year-old so that he can have a normal life. He will always have his intricacies and passions. But the important thing is that he is almost out of the trenches and we need to fine-tune him so that he has a decent life at school. 3rd grade is very scary to me. I have 2 years to fine-tune his language so that he can survive mainstreamed 3rd grade.

Wednesday, April 16, 2008

Continues to Do Well at School


I started him back on the supplements on Sunday and Jonathan didn't seem to have any problems.

Sunday was a very special day because Jonathan did something that was out of the ordinary. He spent almost 4 hours with 5 other kids playing on the backyard of a friend's house. This friend lives in a nice and secluded neighborhood and his house backs to some woods and a small pond. The kids walked around, and played with rocks and sticks and played games, talked to neighbors, etc. Jonathan stayed with them and not only did he follow other kids directions but gave some ideas about the things they could do. For the first time, I didn't feel fearful that something was going to happen to him that he couldn't handle. He walked on big rocks, and fell down on the grass. When he got his feet wet, he was a bit disturbed and came to me. I took his shoes off and about 30 minutes later he was out, wearing just socks, went back to playing again. It was awesome.

This week, the teacher sent a note saying that Jonathan is doing well at school. No additional prompting to complete his work is needed. That is encouraging. But I admit that he still needs extra help doing his homework. He is better than before, but he still gets distracted easily.

His conversational language keeps improving. And he is now describing things to us. He does what he can to describe items or situations with his broken English, but he is doing it better than ever before, to the point that we now understand what he means.

Someone left a comment asking me to expand on the neurofeedback information. I don't think that regular neurologists do this therapy. You need to find a specialist. Neurofeedback is a type of neurotherapy - a type of alternative therapy. It uses technology that trains the patient to regulate brainwave frequency by rewarding the beneficial brainwaves and inhibiting the less desirable ones. After a few sessions, the patient learns to gain the ability to self-assess and self-regulate. It has been shown to improve motor and mental planning and sequencing as well as processing speed, organization, and focus.

High level overview from what I understand, a digital EEG amplifier reads brainwaves signals from electrodes placed on the person's head. Brain frequency patterns are then transmitted to a computer operated by the therapist (brain mapping). The patient then learns how to play a video game in which the action can be started and maintained by the correct brain frequencies (no hands, just brain frequencies). After several sessions with the video game, the patient will have developed the ability to recognize and alter particular brain waves. Practice sessions allow clients to sustain brain control in everyday life.

After speaking with several parents that have tried this therapy, it seems that it works best on the high functioning kids. The lower functioning kids do not respond as well, or don't respond at all to this type of stimulus.

You can learn more about neurofeedback from this website - http://www.crossroadsinstitute.org/ - , but I don't know how you can go about finding a local therapist. Check with your neurologist.

Regarding the MAP test through Amy, I have not done one in a while. I need to re-run it. But last time I did it, she emphasized on more ATP, more CoQ10 and Acetyl Carnitine, along with many other supplements including the Mood D and Mood S, and Clostridia support. I have been giving him those plus the other supplements she suggested in his GAR, but I think I needed to increase the ATP. I called her office (because she even wrote it in one of the urine metal tests), and they suggested increasing it to 1.5 pills form the .5 I was giving him. Then, just last week, our DAN! Dr. recommended increasing the CoQ10 to 100mg (from 50mg that I was giving him) and the Acetyl L-Carnitine to 1000mg (from the 250mg I was giving him). I did that this week, and he is less tired, actually he is more active, always looking for something to do. So that seems to help. I don't have the blood results, so right now it is just anecdotal.

Regarding clostridia, even though his MAP showed that the marker was a bit high, after I did a full round of Flagyl, I honestly did not see any changes. Now that I have completed 120 dives of pure Oxygen through Hyperbarics Oxygen Therapy (which I was told kills clostridia), I am going to run the MAP test again to see if the markers have improved.

Dr. Amy believes that Jonathan has the ACAT mutation, but since I haven't ran the latest SNPs, I don't know. I added some of the ACAT supplements and I honestly did not see much improvement with them. When I run the test again and find out what other SNPs he has, I will add the necessary supplements. Until then, I am following the Vitamin K2 protocol to lower his oxalates and that actually seems to have worked better than the ACAT supplements. I don't think that there is a problem with the ACAT supplements. But I believe it has to do with the dosages. I give him 5mg of Vitamin K2 instead of 1mg for instance. But there are more supplements in the ACAT list than the Vit K2. I cannot give this child more supplements than what he already takes. It is crazy.

Saturday, April 12, 2008

My Son Gave Me Flowers

I took Jonathan this morning to the lab to get the blood work done for mitochondrial disorder markers. Jonathan behaved incredibly well. The people were extremely nice. And since I put the anesthetic cream on his arms an hour prior to appointment, he did not feel any pain. Making the process very smooth. They took 6 tubes full with blood. The tests are for Lactate, Pyruvate, Ammonia, Carnitine (free and total) and Creatine Kinase. I assume we will have the results next week and adjust the mitochondrial cocktail according to these results until we see the specialist on June 19th.

After that, we went home to get Vanessa and headed over to a very good friend of mine's house. We spent the day with her, her husband and her 2 kids (one is almost 3 and the other one is almost 1). We first went to eat lunch and then to the playground. At lunch, Jonathan was very well behaved and ate all his chicken with no issues.

On our way to the playground, Jonathan realized that there were daisies all over. He picked one out and came towards me and told me that he loved daisies. They are beautiful flowers and make him happy. Then he gave it to me and said "for you mommy. I love you". I totally melted. He had never given me flowers like that. A few times in the past, Daddy would get one and tell him to give it to me, but he would just give it to me without words and turn around. The action didn't mean anything to him. But today, it did. And it was totally spontaneous

When we arrived at the playground, he played with Vanessa and E. (the 3 year-old boy) for almost 3 hours. He complaint at some point of having a stomachache, but for the most part, he did very well and had a lot of stamina. He went to a little garner nearby were flowers were just starting to bloom and brought me another one.

He also wanted to plant trees. He found a big dead branch, and he insisted he wanted to plant it. I tried to explain to him that it was dead, but he insisted that if we planted it, it would grow again. So I helped him plant the tree.

At my friends house, Jonathan played beautifully with E. and Vanessa. He realizes that E. is little and had a lot of patience with him. E. liked to push him, and jump on him and Jonathan tolerated it well. Towards the end of the day (we spent 6 hours with them), Jonathan was tired and asked me to go home.

Again, I do not notice regression of any kind yet. I have not given him supplements since Tuesday morning. I am going to start back tomorrow and see what happens.

Without the supplements this week, he has been waking up with more energy and earlier than normal all by himself. I wonder why.

Kids playing at the playground.

Jonathan enjoyed climbing on all the different figures

The kids played running down the hill for a while. Jonathan got tired after about 5 times. Vanessa and E. kept going for about 5 more rounds.

It is hard to tell unless you click on the picture to enlarge it, but here is the dead branch that Jonathan planted. He was very proud of it.

A picture of E. and Vanessa.

Jonathan walked around the park on his own and found this. He pretended it was a coconut. He was very protective of it (both Vanessa and E. wanted it) because he was the one that found it.

My beautiful flowers!!!!

Friday, April 11, 2008

A Week with No Supplements

This week has been particularly interesting. As I finished reading the book from Dr. Bryan Jepson, quite a few theories came to my mind. But the one that I decided to investigate more deeply was "mitochondrial disorder". His low muscle tone and excessive tiredness is sending me towards that path. For the past 2 years, Dr. Yasko has kept pointing out that I need to focus on the mitochondrial cocktail. And whenever I give him CoQ10 or Carnitine in higher dosages, his energy level gets better. So I contacted his DAN! doctor and he told me to run some blood work this week along with making an appointment with a specialist. I got the appointment and I am going tomorrow to Quest to get the blood work done.

In order to get a good baseline from his blood work, I stopped giving him all supplements, shots, chelation, probiotics, everything, on Tuesday.

Surprisingly, he has done quite well this week with no supplements. He did very well at school. No negative comments all week. The only problem I saw is that he immediately got constipated.

On Wednesday, he had his Tae Kwon Do Yellow Belt test and did very well. See the video. I am so very proud of him.


video

Today, we went to see a neurologist who ran an EEG and an attention test to see how Jonathan's brain is doing. She does neurofeedback therapy. I have to admit that I was totally shocked with the results. His attention test shows some attention problems, but what really made me drop my mouth was that his brain activity is extremely high. All around his brain, but particularly in the back right side of the brain, which should be the calmest during a relaxed test. He has so much activity going on that the doctor feels that he is tired because his brain is working too much all the time. Our brains normally use 20 to 25% of energy during a typical day, but Jonathan's brain, if it is the way it was today at 9am, it looks like it needs about 50% to 60% of energy. No wonder why he is tired, she said. He takes everything in. His brain is doing little filtering. However, he has learned very well to control it. She said that she was impressed that given his current brain activity, he was able to do the attention test and get the scores he did. He was below the median, but right within the standard deviation.

So perhaps a combination of both mitochondrial and high brain activity. She told me that he would greatly benefit from the neurofeedback to get even more control of his brain and improve his attention and focus. And she told me to continue with biomed because it is imperative that we get the metals out. The more the merrier.

We went to the movies today to see "Nim's Island", which is a rated G movie, not a cartoon, and he was totally engaged until the last 7 minutes when he didn't see much action going on.

He has been talking a lot this week. Very engaging. Lots of humming. Less toe walking.

Sunday, April 6, 2008

2 Weeks after HBOT

This past week has been encouraging. I have a love-hate feeling towards HBOT. Jonathan starts well, then he regresses, then he gets better, then he regresses even more. But he normally starts to show some nice improvements about 3 to 4 weeks after we are done. That has been the experience in the past 2 sets of dives. This time, he regressed tremendously the first week after we were done (which worried me very much), but started to show good improvements the second week.

He had 2 very good days at school this past week. The teacher sent a couple of nice notes. On Thursday, he didn't even need any prompting to do his work. He has been doing very well at Tae Kwon Do as well. He is ready for next week's yellow belt exam.

On Friday, we went to visit our friends and Jonathan played with the kids Nintendo Wii and then other games and they all got along very well.

Jonathan's receptive language and attention has gotten better in the past week. For instance, today we were in the car and Jonathan was playing with the GPS, when Vanessa asked "Mommy, when we get home, can I play with the number one?". She meant the Nintendo Wii remote control number 1, which is the one that controls the games. She was not talking to Jonathan, and Jonathan was mining his own business. But Jonathan immediately responded (before I did): "yes Vanessa, you can have number one" as he continued to play with his GPS. His is doing this a lot. He is paying attention to our conversations now also, which means that we need to start watching more closely what we say.

He made a few comments today that made Javier and I stop and think that his language has improved in the past week. I can't really write any examples, but both expressive and receptive language have improved this week. It seemed easier to speak to him this week.

He also seems more social. We went to his pediatrician's office to get his allergy shot, when he noticed someone walk into the office and write his name down and looked at me and asked me if I knew him. When I said no, he went to him and asked him what his name was. It was weird and not appropriate, but I look at it as a sign of more curiosity.

I am still concerned about some of his behaviors. He has been walking on his tip-toes more than ever. He is also humming more than ever before. And he is walking without really paying much attention, more than ever before. However, he is rocking less.

Javier and I met with a director of a new school last week. It is a private school. Their mission is exactly what I would want for Jonathan, but we cannot afford it. However, it was good to go and hear about some of the challenges that Jonathan might be facing in the near future (3rd grade in particular). And besides the social relationships and the bullying he will need to deal with, it is the entire "pragmatic language" problem that he and all the children with autism have that might make his educational years more challenging. We are not really addressing that in his current IEP and I don't know how the public school system will deal with that. I am going to bring it up in the next IEP meeting which will take place in June.

Here are some pictures I took from this past week.

Teaching his grandfather how to play with the Nintendo Wii

Jonathan and Vanessa play all the time. Here they built their own train track and brought the trains up from the basement. They did a lot of pretend play where Vanessa needed help, and he came to the rescue, etc.

Jonathan loves air hockey and had a blast playing with C. and N. last friday.

Notice how Jonathan is paying attention to the body language of these two boys. Also, how he is so excited when he makes a point (making him competitive) but does not mind when the other kid makes a point.


video

Wednesday, April 2, 2008

April 2 - First World Autism Awareness Day

In November 2007, the United Nations declared that April 2 would be an annual day to “encourage Member States to take measures to raise awareness about children with autism throughout society.”

In the United States, the Centers for Disease Control and Prevention estimated in 2007 that as many as 1 in 150 children in multiple areas of the United States had an autism spectrum disorder. Parents must often navigate their own paths to find helpful therapies and finance expensive education and other services independently.

CNN.com is helping spread the word.