Sunday, March 30, 2008

Outstanding Day at the Amusement Park



In a continued effort to keep Jonathan's mind moving, we went to an amusement park today that is a few hours away from us. It was cold, but well worth the trip. Jonathan and Vanessa had a total blast.

We spent about 8 hours at the park. During that time, Jonathan was totally excited and willing to do everything except for 2 roller coasters. I stayed with him while everyone else went to those rides. It surprised me that Vanessa was willing to do everything. She was very scared of one, but did it anyway. I should have purchased the picture just to show her her very scared face when she grows up. Her face was priceless. And after that, she went to another one. I thought she would have been traumatized, but she wasn't. The things that Jonathan enjoyed the most (driving cars and bumper cars), she didn't want to do. But despite the differences in tastes, they both loved it.

One thing to note, in 8 hours, Jonathan did not complain about being tired, not even once. And he did not ask to go home. I did notice that he was walking with his tip toes and kind of funny a lot lately today (putting the whole foot on the ground instead of heel-toe). I corrected him 3 or 4 times and after that, he walked perfectly normal.

Now I am very confused about my theory that he might have a varied version of Mitochondrial disease. If he did, he would have had to stop a few times during the day to recover. But he didn't. This kid is a puzzle himself :)

Jonathan wanted to play with C. all the time. He wanted to sit next to him in all the rides. It was very cute. So did C. They both kept saying that they were each other's friends. C is just 1 month younger than Jonathan, neuro-typical (NT) and with a very wide imagination. He and Jonathan never cared for each other until late last year and more this year. Jonathan teaches C. how to play with electronics and Jonathan loves to follow C. when he invents new games. Good balance.

At one point, they started playing in a playground which has a section for small kids and another one for larger kids. Vanessa and N. went to the small kids section (not knowing that they have grown this year enough to go into the big kids section) and Jonathan and C. when to the big kids section. When they saw each other separated by a net, Jonathan immediately said that he wanted to go save her sister. I didn't know that she could come across to the section where Jonathan was and I told him that she couldn't. And he started crying because he wanted to be with "his sister" and wanted to "save his sister". The lady that was facilitating there told me that she could come over, so she did and Jonathan was very excited to see her. Then some kids started throwing balls and Jonathan said "don't hit my sister". That was total music to my ear.

Towards the end of the evening, Jonathan noticed that it was getting dark and got concerned that it was sunday and he could not play the Nintendo Wii Monday through Friday and he wanted to play a bit today before we got home. So he told me that he wanted to go home so he could play some Wii. I told him that we had to go eat dinner first and he told me about the Wii and night time, etc. I told him that I would let him play just a bit when we got home, and after he thougth about it for a minute, he told me that it was okay.

On the way out, we saw a 3D cartoon movie and all the kids wanted to do it. It was an action movie and some of the rows had moving chairs. Vanessa and N. were not tall enough to ride the moving seats, so we sat out front with them. Jonathan and C. went with their dads to the chairs. When the movie started, I was terrified that it simulated a roller coaster and Jonathan didn't like roller coasters today and was going to scream to get out. I was really worried. I kept turning around but I couldn't really see them. At the end, I asked his dad and he said "are you crazy? he loved it. ask him". So I did and Jonathan said "I loved that movie. I want to do it again". So I went with him and he kept telling me what to do and not to be scared. During the movie, Jonathan was laughing so hard, that I enjoyed listening to him more than the movie itself. It was a rough ride. But he totally loved it.

Excellent day, all around.

The only negative thing I want to note is that during dinner, C. wanted to play with Jonathan with C.'s small spiderman characters and Jonathan looked at him in dismay and then looked at his dad like "I don't know what to do daddy" and then sat back and started sucking his thumb. He still has such problems pretend playing with other kids.





Saturday, March 29, 2008

Liked to Fly a Kite

We are trying to think about activities to do over the weekends that can expose the kids to new adventures and experiences. Today we took them to fly kites.

At first, Jonathan was intrigued to see so many people flying kites. We went with our friends, my dad, and Javier's brother. When we opened the kites, I try to fly one (it has been years and I am rusty). I grabbed one and C. (my friend's 6-year old) held it while I started running to lift it up. All the kids started running after me, but Jonathan could not catch me. So he sat down on the grass and started crying. I was not successful but I was enjoying myself until I saw Jonathan on the floor. I went to talk to him and he told me he was scared because he could not catch me. I hugged him really hard and told him that I was just running to lift the kite up, not running away from him. We went back to where everyone was. He kept crying telling me that he didn't like that place, he didn't want to fly kites and he wanted to go home.

Uncle Hugo came to the rescue and asked Jonathan if he wanted to fly the kite. He convinced him and took him with him. They tried to fly another one, but it was harder. However, Jonathan started to enjoy himself. After a few attempts, they gave up on the hard one but Dad told him that there was a smaller kite that he could fly. And indeed, he did. He was so proud of himself and happy, that it changed the entire dynamic of the day. We later walked around and the kids enjoyed playing and running and Jonathan never mentioned that he wanted to go home again.

One thing I noticed is that Jonathan did not complain at all that he was tired. He walked and ran and played and never showed any sign of tiredness.




Thursday, March 27, 2008

Regressive Behaviors

Jonathan has definitely regressed. He is humming, he is talking jargon again, he is very distracted, he is excessively tired again, and his expressive language is having some difficulties. He also seems drugged.

The more I read about mitochondrial disorder, the more I feel that that is what Jonathan has. http://www.huffingtonpost.com/david-kirby/the-next-big-autism-bomb_b_93627.html. Is there a way to reverse it?

I am posting this today to have a record of when I noticed the regression. I noticed progressive regression for the past 3 months. He improves and regresses. This week has been particularly difficult to get him to comply with commands. I am not sure what is going on. I am almost done with the book. I requested an intake package from Thoughtful House and got it today. The application is rather long, but I need a 3rd opinion. I am missing so many things, and I am burned out.

video

Wednesday, March 26, 2008

Jonathan Does Not Like the Circus

Jonathan seems to be dragging this week. I am not sure if it is post-HBOT regression, or something else. Whenever he gets like this, my heart sinks. Will we ever see the end to this long journey?

We took the kids to the Circus today. This Circus came for a couple of weeks only. We took them last year, and Jonathan seemed to like it. But today he totally ignored it. I have to admit that we were a little too far and he did not appreciate many of the events because he could not really see the details, but one thing that bothered me is that Vanessa could see and appreciate what was going on and laugh and enjoy the circus, while Jonathan only paid attention to the different lights and colors and kept telling me when there were no interesting lights that he wanted to go home. It was a disappointing for me. I thought he would have enjoyed it more. But he seems to be in "la la" land lately.

I was so distracted, trying to keep him from hitting the people in front of us (he was moving a lot) and with Vanessa on my laps, that when the circus ended, we ran out and I believe my phone fell off my purse then. I lost my phone to add to a very hard week.

Tuesday, March 25, 2008

(HBOT 140) Last Dive

Finally, the therapy came to an end. I am going to miss the routine, but I need the break too. 7 weeks of getting home at 8pm and going to bed at midnight has really gotten me tired. I even got a cold (probably because my immune system is really beaten).

The dive was uneventful. Jonathan seemed a bit off today since the morning. He kept telling me in the chamber that he was hungry and wanted me to make him something when we got home. I told him last week "no more McDonald's ever. It makes you fat" and he took it very seriously. I am going to stick to it and try to change his diet. Actually, what prompted that was the book that I am reading (almost done) - Changing the Course of Autism by Dr. Brian Jepson from Thoughtful House - where he stresses the importance of good nutrition in children with autism. Even more important that restrictive diets (like GF/CF and SCD), good organic and minimally processed foods are essential for the recovery and ongoing maintenance of our children. So I have decided to work with a nutritionist. I used to work with a very nice and very knowledgeable nutritionist when I first started biomed 3 years ago. But I think I need someone that concentrates more on the actual foods and cooking. This lady is almost like a DAN! physician. She knows what supplements to recommend and that was very helpful. But I have a DAN! Dr. I have someone in mind and I am going to arrange for a meeting soon. In the meantime, no more fast foods. :)

When we got home, I read Jonathan's report card from school which showed that he needed A LOT OF support today. And in addition, the teacher pointed out that I had not sent him his snack and that he was very upset about it. I felt very bad about it. My poor baby.

She also pointed out a positive remark regarding one of Jonathan's new acquisitions (birthday gift). A wrist watch. He is in heaven now with it and they have been using him to direct events since he learned (on his own) how to setup the timer. She said that it has been a good addition to his daily responsibilities. Let's see when she and the rest of the class start to get crazy with Jonathan's obsessive compulsive behavior with the timer. He is not very flexible when timer says that time is up :)

He ate and watched a bit of TV and went to be relatively early considering the past few weeks.

I have not started him on the suppositories yet. 3 weeks off EDTA and DMPS suppositories and diflucan (anti-fungal). I might start on Friday with the new EDTA. I ordered a new batch from another pharmacy that I know won't hurt him. I am also considering low dose high frequency ALA. I don't know what I am going to do regarding chelation right now. For now, EDTA. I will wait until I do another CBC to make sure his liver enzymes are back to normal and his white blood cells are up to start him on LDM100. And next month we have our appointment with the neurofeedback doctor. I am excited about that.

Monday, March 24, 2008

(No HBOT) Happy Birthday Jonathan!

Today is Jonathan's birthday. We celebrated it on Saturday, so I didn't plan to do anything at his school. He was excited that it was his birthday though.

He woke up in a good mood. Daddy put on a wrist-watch that one of the kids gave him as a birthday present and he was very proud of himself because he knew the time and he owned his own watch. At first he told us the time every minute, but after about 10 minutes, he stopped. He took him to school and he told me that he showed his teacher and she taught him how to use the timer. He was very excited to show me when I got home. He actually asked me for my phone and put the timer at 10 minutes and as soon as it went off, he gave me the phone. Mmmm, this might be a useful tool. :)

When we got home, we all decided to go out with Jonathan to celebrate his actual birthday. We decided to go to Chucky Cheese. The girls had a fabulous time. My 2 nieces loved playing with the games. Vanessa enjoyed a couple of games.

It amazes me every day to see Vanessa mature and grow up and experience what a "normal" child does and says and is interested in. Vanessa got into a car and there was a doll and she started talking to him like he was alive and put her hands around him, etc. I have a picture of Jonathan when he was about 2 that showed a lot of curiosity for the same doll. And I loved watching Vanessa have fun and interact and remembered that picture of Jonathan and thought to myself "what if he had never gotten those extra vaccines? Maybe he would have been okay". Oh well, things that keep crossing my head. After his second flu shot at 27 months, Jonathan never showed interest in that doll or cared to sit in that car at Chucky Cheese again.

Jonathan @ 22 months - he was really puzzled by this guy

Vanessa today at Chucky Cheese - she was very curious about this guy. And went a step further and pretended he was alive and started talking to him like he was a boyfriend and put her hand around him and had a great time.

We had a very good time today. Jonathan was in a good mood. He knows that he cannot play with electronics from Monday to Friday but begged me to play with him today a bit with the Wii because it was his birthday and I had not played with him yesterday as I had promised. So since that was a very complex and well thought-out conversation, I granted him 15 minutes of Wii (just today) and he would play with me (which we did). He went to bed happy.

I don't have any notes from the teacher, so I don't know if he did well or not.

Sunday, March 23, 2008

(No HBOT) Easter at the Zoo

There was no HBOT today due to the Easter holiday. We spent the morning with family at home, having breakfast and playing Wii and went to the Zoo in the afternoon.

Jonathan woke up wanting to just play the Nintendo Wii. I knew that would be the case, but I let it be. He likes to play with other people, so he walked around asking us who would want play with him. Uncle Billy, Tia Nelci and Daddy played with him and he was very excited.

After about 1 hour of Tennis and Bowling, we decided to get out of the house. My brother is here with his family and they wanted to go see my other brother's house under construction and then head to the Zoo. So we did that.

When we got to the house in construction, the girls were excited to run around, but Jonathan was very clingy. He walked around holding one of my hands and hiding his head under my sweater. It annoyed me because I didn't know what was going on with him. A little later he said he didn't care to be there and wanted to go back to the car.

After that, we got in the car and headed to the Zoo. I told Javier that I was afraid that Jonathan was in one of his moods and he would not do well at the Zoo. And I was right. He was whining, and clingy, and bored and not into it at all. We got the elephant's area and he looked at it and turned and ask what comes next.


Then we went to the Gorilla's house and he was all over the place, again did not care much about it. His attitude was simply that he did not like or cared about the animals or being there. All he could think of was going back home to play the Wii and this that we were doing had no interest in his mind. And he didn't want to walk much. He kept complaining that we were walking too fast.



After that, we got an ice cream and went to see the lions and tigers. They were all gone (probably inside to feed and sleep). So we went to the car and headed to my family's house to have Easter dinner.

At my family's, he was better. He watched a movie and ate. After a bit, he went to play on the computer and Illy (cousin) went to play with him. Vanessa was very tired and fell asleep. He played very well with Illy (3.5 years old) and showed her how to play with the computer. That was nice.


We ate and went home. I gave him his supplements and put the B12 shot and put the kids to bed. It was a long day for me. I don't like seeing Jonathan so disconnected.

Saturday, March 22, 2008

(HBOT 119) Jonathan's Birthday Party

Today was a big day for Jonathan. We celebrated his 6th birthday. His actual birthday is the 24th and we had a long discussion yesterday because he could not understand why we were celebrating it today instead of Monday. I had to tell him that it was a "pretend" party because his birthday is on a Monday which is a school day and he was not going to be able to have a party. He finally agreed to it.

The day started up hectic with Tae Kwon Do at 10 and then HBOT at noon. He did not want to eat anything. So when he got home, his stomach I guess had shrunk and he didn't want to eat.

The party was at a bowling alley. I was a bit worried. We 13 kids had confirmed and we didn't know how it was going to turn up. But it was a lot of fun. Jonathan played with his friends and about 15 minutes to 4pm, came to me starving. I told him that they were going to serve the food at 4:10pm and he watched the clock. When it was 4:10pm, he came to ask me and indeed the pizza was served.

The kids ate and some of the adults did to. And it was really fun. We sang happy birthday and opened presents. Jonathan was happy.

Some of the presents were Nintendo Wii video games. He opened them but was puzzled why he got those since he didn't have the Wii. Tio Hugo couldn't resist and told him that he and Abuita had gotten him the Wii. Jonathan was happier than I have ever seen him. He came running to me to tell me the news. When we got home, he was so excited opening the other presents looking for the Wii that didn't really appreciate what others had given him.

Some of our friends came to the house and our families and we spent the evening together. It was a fun day.












He was very happy the rest of the evening. We had a very good time.

Wednesday, March 19, 2008

(HBOT 116) Very Clumsy Today

Jonathan had a night terror today. He walk up screaming at 5am. He was calling my name and sounded desperate. When I went to see him, he said he needed to pee pee. I told him that he could do it by himself. And he said that he couldn't because the birds were not letting him go. I took him to the bathroom and back to bed, he laid down and closed his eyes and was right back to sleep. Really strange.

Jonathan woke up differently today. He was a bit hyper, his behavior seemed a bit awkward. He came to my bed and immediately started getting really close into Vanessa's face. She asked him repetitively to push back. Then he turned the TV on, and laid in front of the TV covering Vanessa's view. She kept complaining. And despite the several times I made him move to another position, he kept getting in the way.

I bathed the kids in the morning (we normally do it at night, but since we came home late last night, I did it this morning) and Jonathan was particularly difficult. He was not focusing on anything. It took him about 20 minutes to undress. I didn't help him so I could measure the level of difficulties he was having. Then, when he urinated before getting in the tub, he was so clumsy around the toilet that the lid dropped and almost hit him in his genitals. Then he got in the water and almost fell inside the tub. He seemed really druggy.

I got the kids ready and dialed my friend B. to see if she was going to meet us at the museums. I wanted to go see a movie and Vanessa wanted to see the whales. My friend decided not to go in the end because she didn't want to stress about being out with the kids without their dad. So my dad and I went with the kids. We had a nice time. The kids went on a carousel, and then we went to the museum to see the movie. It was about planets and Jonathan and Vanessa were both fascinated.




During all this time, Jonathan was walking without much control over his body. It seemed as if his body was too heavy for him. He was dragging. Inside the museum, I had to ensure that he was not colliding with other people. He was not paying much attention to where he was going.

When we left the museum, it was starting to rain. It was not hard, but the car was far but we could not stay because Jonathan had HBOT at 3pm. So we started walking fast. Vanessa, who asked me to carry her almost the entire time we were at the museum, actually walked pretty fast. But Jonathan was dragging. I kept pulling his hand. He stopped and said "mommy, don't walk so fast. I am tired. My legs hurt. I cannot walk fast". So we slowed down. But it worries me that he is so tired all the time.

His 6th-year check-up is on the 31st and I am going to ask that a full blood work exam is done. His last lab showed low white blood cell counts. I wonder what is going on in his body that is not manifesting in the outside other than the excessive tiredness.

We went to HBOT and had a nice, uneventful dive. He played almost the entire dive with another kid his age. They have very good chemistry. After we finished, we went home. Vanessa fell asleep and stayed in the car with my Dad while we dove. So when we got home, Vanessa had a lot of energy and they played beautifully for an hour until we got ready for Tae Kwon Do.




At Tae Kwon Do, Jonathan was a bit distracted, but the instructor was great and brought him back and made him pay attention. He ran a lot today. I can tell that he is "capable" of running very fast. But after one lap, he gets really tired and slows down to the point of almost walking. I know that he is about 15 lbs overweight. I wonder if that is the problem. He had a good class today.

When we got home, he and Dad watched TV for a bit and then we took the kids to bed. He was again very clumsy. He dropped the water all over his PJs. He was out of energy and could not focus his targets. I hope he has a good night sleep.

I gave him 2700 mg of Phosphatidylcholine yesterday for the first time in over 3 months. It could be a reaction to that. But it always helped him with motor skills, never made him regress. It is a big puzzle to me.

I also started him with Candex today to kill yeast since I stopped the diflucan. I started with 1 pill in the morning. Today's reaction is not due to this because it is too soon to have a die-off effect and I noticed that he was strange when he woke up.

Tuesday, March 18, 2008

(HBOT 114 & 115) Lost of Imaginative Play

Jonathan woke up happy today. He and Vanessa played endlessly this morning while I showered and prepared breakfast. The TV was off all morning and they made up different adventures (Jonathan called Vanessa "honey" and served her food, and took her places - perhaps they were imitating us; they also pretended they were doctors and where helping Vanessa's babies who were very sick, etc). It was great to watch. I have not seen that type of imaginatory game involvement from Jonathan in weeks (months actually).

I took Vanessa to daycare and went to HBOT. We double dived today. 1pm and 6pm.

Jonathan seemed very receptive today. He was not happy that we were going to double dive today. He begged me not to do it.

He guided me to places with the GPS. He dropped it and was a bit upset for a second. I told him that I could not pick it up until we reached a traffic light. He was calm and patient. We drove for about 20 minutes in the highway until we got to a street that had a traffic light. He immediately said "mommy, hurry. Get the GPS. It is on the floor behind me. No, in front of me. The traffic light is red. Hurry".

After the first dive, we went to the dentist to get his third cavity fixed. He was such a trooper. The doctor put the local anesthesia and fixed the tooth is 15 minutes. He was so funny. Since he had already felt his mouth asleep last time, he coped well and even though he did not like it, he did not complain either.

After the second dive, we came home. He setup the GPS to take us home, but the GPS took us via a different route. I kept telling him that it was wrong, and he kept arguing with me that the GPS was right. So I told him the names of the streets that we normally take to go home and he said "ooooooh mommy, you are right. The GPS is wrong. What are we going to do now?" I explained that the route the GPS made us take was also okay, it was just no the same that we normally take. So he called his Dad to tell him that the GPS made a mistake. To me it is such a great improvement that he is able to maintain a simple conversation where he can hear an entire sentence and process it and understand the complexity of his thought and realize that something is different/mistake. This seems simple. Something we all do every day. But it is complex for kids on the spectrum.

When we got home, he and Vanessa played again beautifully. They ate (we got him to eat one piece of tomato) and got them ready for bed.

As I was helping him to brush his teeth, I told him to brush by himself. He replied "mommy, I cannot do it by myself. It is hard for me to brush my teeth". So I told him that that is why he has to practice. He continues to amaze me. His language is evolving little by little so nicely. After he was done, I noticed that he picked the sippy cup with water and put it back on the counter. I asked him if he had drank off it and he said no. I told him that I saw him pick it up and he said "I picked it up but I put right back on the sink. I didn't drink".

It was a really good day. I had to prompt him a bit to change his clothes and get him to eat. But other than that, he was very good.

Monday, March 17, 2008

(No HBOT) Uninsterested in Museums

Jonathan has spring break this week. I took the week off to take him out to different places so I can enjoy being with him (I spend very little time with him lately) and I can keep him away from computers and video games.

Jonathan seemed to have regressed over the weekend. He was very obsessive, he was uninterested in anything. He didn't want to play with other kids. He spent hours on the computer on Sunday. Nothing else interests him. But I still wanted to take the kids to the museum this week.

We went to one of the museums I wanted to take the kids this week. I thought it would be more fun. I have to admit that the exhibit was not exactly what I expected, but the kids liked to see the little animals. Jonathan was stuck with a computer game that taught him how to dissect a frog. He didn't really understand what he was doing. He was just focused on following the on-screen instructions. He did it about 5 times until I told him that it was enough. He didn't really care about the exhibit, animals, etc. He just wanted to find more computer games to play.

We went to eat because he started to complain that he was hungry. He kept saying that he was tired also.

In the evening, we went to Tae Kwon Do and I noticed that a few minutes into the exercises, he could not take the physical exercises much. He was dragging. I am not sure what is going on. I need to find another doctor to guide me. Here is video of tonight's class.


video

Friday, March 14, 2008

(HBOT 111) Happy Birthday Chrissy

After the HBOT dive, we went to meet with friends at a restaurant to celebrate one of our closest friends birthdays. The place was very crowded. I was a bit worried because I thought it would overwhelm Jonathan. But he was very happy to see his friend A. and to play around. He imitated A. all the time. Whenever A. said that he was bored, Jonathan would do the same. We spent 3 hours at this restaurant, and Jonathan did great.

When I got home, I noticed in his daily report that this week they needed to prompt him a bit. Not as much as 2 weeks ago, but more than last week.

Next week is spring break and I am staying home to do activities with him away from the computer, playstation and TV.


Tuesday, March 11, 2008

(HBOT 108) Bad Couple of School Days

Jonathan could not wake-up this morning. He went to be close to 10pm last night. I got him dressed and he kept sleeping in his bed, which is very unusual. Daddy carried him downstairs, and he kept sleeping on the couch. I tried to wake him up but it took me a good 30 minutes to get him to get up and give him his supplements. I knew it was going to be a bad day. He was very VERY SLOW!

During the HBOT dive, he was better behaved than in other occasions. We was repeating the words from the cartoon and screaming at times, but not as much as he normally does. We went to McDonald's from there (Tues - Thurs).

When we got home, I decided to get him to bed early so he could have a good night sleep. When I checked his school report, the teacher noted that he needed a lot of support today and yesterday. I could tell because I sat with him to do homework, and he was not concentrating. Very disorganized.

We took the kids to bed at 8:30pm today, and I believe Jonathan feel asleep close to 9pm. While I brushed his teeth, he told me "mommy, I don't want to close my eyes and dream. I don't like to dream". He mentioned that to me on Sunday night as well. He said he didn't like to dream. He could not fall asleep on Sunday night (like years ago) and it took him over 2 hours to fall asleep. I asked him today why he didn't like to dream and he said that he didn't want to dream about playstation and TV. That he wanted to dream about books and connecting his leapster to the TV. So I told him to dream about that. Very weird.

I stopped chelation last Monday. It has been a full week. I will start EDTA back up next week. I ordered a new prescription from Coastal Pharmacy because their compound does not burn him. The one from Hopewell burns him terribly. I cannot put him through more misery.

As of today, no more diflucan for a while. I ordered Candex. I received a test result from Great Plains that shows No Yeast. The strange part is that I took that sample when he had loose stools. They are better formed now. So I am very confused. I was going to do a comprehensive stool analysis, but I was not able to collect the stool within 2 consecutive days. So I ordered another kit.

Sunday, March 9, 2008

(HBOT 107) Great Haircut Experience

Jonathan had HBOT early in the morning and then a birthday party from 1 to 3pm. I was a bit concerned about the birthday party because it was with laser guns and I thought he would get a bit overwhelmed with them. But instead, he LOVED them. Daddy said that Jonathan had a blast.

After that, we went over to our friends' house so he could play Nintendo Wii for a little while and then we went to the shopping mall to get the kids a haircut.

Getting him haircuts keeps getting better with time, but never like today. He really did not mind the trimmer at all. He watched Sponge Bob and moved his head the way the lady asked him, but he did not mind. The little trimmer that finishes up the back was a bit bothersome, but he hardly moved. I was so impressed that I asked the lady for her name and hours. She was even able to cut hair behind his ears without him minding. And for the first time since the beginning of cutting his hair, I did not have to help the stylist, I did not have to grab his head, I did not have to hold him down. I only asked him a couple of times to stay still for her, and he did.

Then I remembered that as we got in the car earlier, our friend Luis grabbed his ear and started playing with it and Jonathan did not mind. And Luis made the comment "remember when no one could touch his ears? check this out" and touched it again. By the third time, Jonathan said no more please.

Not sure exactly what this means since he is still moving a lot, so I couldn't say that his senses are starting to sync up. I don't think so. But perhaps his oversensitivity is starting to get better.

We went to the mall playground and on the way there, we saw an Easter Bunny guy taking pictures. Vanessa wanted to get a picture, so we stopped by and had both kids sit with the Bunny. Jonathan would not smile naturally. He was making terrible facial gestures. When the lady asked him why, he said "I am just out of energy. I don't want to get a picture".

He is out of energy a lot. It is Mitochondrial Disorder like symptoms and I give him supplements to help with that (per Yasko's suggestions). But that is exactly what the teachers complaint about in school. Lack of energy. We went to the playground and he just laid down next to me while Vanessa ran around. It was a very busy weekend. Perhaps he did not rest enough. But this is one of the biggest areas of concern.

After we got home, he went to play with the playstation and he was happy. They went to bed a bit late today (9pm). So I hope he has a good day tomorrow.

Saturday, March 8, 2008

(HBOT 106) Long and Active Day

The day started up very early, with Tae Kwon Do, then HBOT and then 9 hours of active play with our friends' kids who came over to our house for the afternoon. When the kids left, Jonathan told me in the bathroom while he was brushing his teeth that he was very sad that they had left and wanted them to come back. That was music to my ears.

When Jonathan wakes up, that is when his language and pronunciation is at its best. It is clear and the sentences are well organized. I let him and Vanessa play for a bit in the morning before I give him his supplements. Shortly after, his pronunciation starts to get a bit sloppy. I have been noticing this for a while now. Nothing I can do right now to change this. But it puzzles me and I need to figure it out.

He had a good day.



Friday, March 7, 2008

(HBOT 105) Good Notes from School Continue

This week has been fantastic for Jonathan. The teacher only needed to prompt him a bit on Monday and he had great days the rest of the week. And today, he even got both a "caught being good" green card and a blue ribbon (maximum award that the teacher gives in class). He had never gotten those awards and this week alone he had 2 of those blue ribbons.

What changed? I removed a few supplements, and just left vitamins, minerals, amino acids, ammonia control, and mitochondrial support. Also, we are past the 20th dive, and he always has a little bit of a lift around now and then about 4 weeks after we are done. The other thing we did different is that we started dropping him off the before-school care center 1 hour before class so he would wake-up and energize. Perhaps the combination of these 3 is what helped. Hard to tell.

Today's dive was pretty uneventful. He played for a while with one of the kids in the chamber. They got a bit rough as neither one knows when to stop, but they have great chemistry. They are both high functioning and made up some games. I told his mom that we should do play dates. She agreed.

Thursday, March 6, 2008

(HBOT 104) Finds Ways to Express Himself

This morning I brushed Jonathan's legs and arms hoping he would have a good day. I think it helped him wake-up. He took his supplements and seemed alert. He asked for ice cream. That was very odd. So we gave him ice cream at 7:30am. He went to school early to spend a good hour in the before-school program. I think that being around other kids before the class is a good stimulation. Today's note from the teacher indicated that he needed no additional prompting during the day. The entire week seems to be very good (for a change).

HBOT was uneventful. He played with another kid for a while, but their game got stuck. So they stopped playing and watched a movie.

When we finished, Jonathan told me that he wanted me to put the GPS on my windshield. I didn't quite understand why, but I did. When we left, he was verbally pointing out where he wanted me to go. It turns out that since Tuesday, he had been trying to tell me that going opposite ways from what the GPS was suggesting. I was supposed to turn right just a few yards away from the HBOT place, but instead I would make a u-turn. So by putting the GPS in front of me and verbally pointing out what I was doing wrong the past days, he was able to tell me exactly what he wanted. I loved the fact that the past 2 days he didn't have a meltdown because I didn't do what the GPS wanted me to do. I year ago he would have screamed at me all the way. And instead, he figured out that the best way for me to understand was to visually see it. Very clever. All this to tell me how to go to McDonald's. Once we left McDonald's and I got to the highway, he knew that I knew the route and told me "okay mommy, I don't want you to see the GPS anymore. You know the route now. Give me the GPS please". It is such an obsession, yet he knows how to use it appropriately. When he is done, he turns it into a "toy" and plays with the demos and other features. But the point is that he knew how to handle his disability and found a way to convey what he wanted without meltdowns. That is very positive.

VERY IMPORTANT NEWS:

CNN News: Vaccine case draws new attention to autism debate

The parents of a 9-year-old girl with autism said Thursday that their assertion that her illness was caused by childhood vaccines has been vindicated by the federal government's decision to compensate them.

Wednesday, March 5, 2008

(HBOT 103) IEP Amended

Jonathan had a really hard time waking up today. I feared the worst day at school. But at 3:45pm, I got an email from his teacher saying that he did so well today that he got a blue ribbon award. I am so puzzled. I cannot find the pattern to his tiredness.

We met with the school's special ed teacher, his kindergarten teacher and the OT. We reviewed the new goals and made certain adjustments. Since he is up for a new IEP in June, they did not make changes to the number of special ed hours that he is supposed to get a month (20 hours a month/1 hour a day), but instead, they focused on activities to help him. One thing that made me happy is that they agreed to do OT type exercises in the morning before the class start to boost him up. 10 minutes of jumping, pressure, etc. I think this will be beneficial. But my concern is that they are not spending enough time a day working with Jonathan. By "they" I mean the special ed teachers. His kindergarten teacher is phenomenal and I really like her. But she is not a special ed teacher and needs their help to guide Jonathan appropriately. I will let that be until I can show to them that their strategy does not work. Only 1 hour a day is not enough to teach him or help him to self-regulate and self-control. He is there from 9am until 4pm daily. 6 out of 7 hours a day, he only gets help from his kindergarten teacher and her assistance. And this is while they teach a classroom of 26 kids. She said that she doesn't mind, but her concern if that he will not do well in 1st grade if he continues with the same behavior. Again, their current strategy is not optimal, but I want to give this new idea a try (2 to 3 weeks) before I make more fuzz about it. This is better than sending him to the Special Ed classroom.

One positive note is that the teacher decided to test Jonathan yesterday based last week's meeting observations to see how much truth there was with the music teacher and PE teacher's claim that although Jonathan seems distracted because he is not looking at the teacher when he/she is giving an instruction, he can actually do everything that was said. We made the same observation. Jonathan seems not to be listening, when in fact he is getting everything that his bod let's him absorb. She tested that yesterday by letting him move around and do his thing while she was reading a book and then questioned him. He was able to answer all the questions. So Jonathan is learning. So the biggest concern becomes the extra prompting that they have to do to get him to start, continue or complete a task as well as his exaggerated tiredness. These two don't happen every day. They happen together and they last an entire day or a several days. The inconsistency is what the kindergartener teacher is concerned about. She knows he can do it, and better than many other kids. During the first trimester, Jonathan's score on the kindergarten test exceeded what he needed to pass kindergarten.

I spent the entire HBOT hour talking to a good friend about Jonathan's situation. I emailed her his blood and urine test results to see if she had suggestions. I need another pair of eyes to give me an outside view. She was great. Gave me really good ideas on certain things I should try. One of the things that we talked about is bringing his liver enzymes values down (stop DMPS and diflucan for a while) before I can do LDM100. So I will not do LDM100 during the spring break as I was planning. I will concentrate the next 2 months on bringing his liver and methylation cycle to a decent level and then try LDM100 during the summer.

It was also nice to talk to A. about concerns on what to do about 1st grade. This topic is driving me crazy: keep him in a large classroom (26 to 28 kids) with 1 hour a day of support or find a private school?. We are both on the same boat. Her son has similar behaviors as Jonathan and is also in kindergarten. So bouncing ideas is very healthy.

He again went to bed by 9pm today. I hope for a good day tomorrow as well.

Tuesday, March 4, 2008

(HBOT 102) Started Ammonia RNA Again

Jonathan had a good day today. The teacher is now sending home small note in his folder that tells us pictorially how much prompting she had to do to redirect him, and the box was clear. So that made me happy. We agreed that she would fill the box depending on how much redirection and prompting he required so I could have an idea of what is going on with him. Since there is limited interaction between the teacher and us, this at least will give us an idea so I can act quicker to alarming situations rather than learn about them from a report card. We asked last year for something like this, and it bothers me that it took seeing Jonathan regress to get this in place.

The HBOT was pretty uneventful. The neck seal keeps bothering him. I need to talk to the technician to check if perhaps it is started to get too tight.

His appetite is selective to either pizza, McDonald's or chicken and rice. He sometimes lets me give him pasta and meatballs. He does not like to eat veggies (my goal during spring break is to feed him veggies - wish me luck). So after the HBOT, he likes to stop by McDonald's and get chicken nuggets. I put a limit of no more than 3 days a week (Tues, Wed and/or Thru). He asked me to take him to McDonald's and I did.

As soon as we got home, we got him ready for bed (we get home at 8pm). He went to bed at 8:45pm. Daddy read a short book and he was asleep by 9pm. I think we will be able to get the kids to bed by no later than 9pm while we still have the HBOT sessions. At least he gets a good 9.5 to 10 hours of sleep a day.

Today, as soon as we got home, I gave him 0.5 ml (1/3 dropper) of the Ammonia RNA. Yasko believes it helps lower the taurine. He used to take it, but since I don't know if RNAs work or not, and they are very expensive, I decided to stop it. I will re-test him in 4 weeks and if I see a drop, I will continue to give it to him.

Monday, March 3, 2008

(NO HBOT) Dentist Visit (1st of 3)

We put Jonathan to bed by 9pm last night and this morning, I gave him his supplements and breakfast and he seemed energetic. Yet, when I picked him up from school, there was a note that he needed assistance today again. I noticed that I had to call his name several times to grab his attention. We are half-way into the HBOT and I can't wait to finish just so he can return to "normal" (whatever normal means to us).

I went to school to wait for Jonathan today so we could go to the Dentist. He has 4 cavities and due to their locations (in between molars.), we scheduled 3 separate visits. Today was the first one.

He did really well. In fact, I almost cried I was so proud of him. He is very brave. He was not scared (and he is super sensitive). They numbed his mouth and then injected the local anesthesia. He felt the needle a bit and got a little scared, but was strong and hung in there for the minute it took to inject the anesthesia. I rubbed his legs and that comforted him.

They put on a movie and he watched it while they worked on him. He was compliant. Did everything the Dr. and her assistant told him and didn't even move. He did great. I am very proud of him.





Today he went to be a bit earlier than other nights. I put on the new suppositories (I changed pharmacies because of insurance coverage). But these new ones burn him. He started screaming. I took him to the bathroom and he pushed it out, but it hurt him for a while. I will call the pharmacy tomorrow and request that they change fillers. The other pharmacy's fillers never hurt him. We have been using suppositories for over 6 months. If they cannot fix it, I will go back to the other pharmacy and pay full-price.

Sunday, March 2, 2008

(HBOT 101) Obsessions

Jonathan's obsessions are pretty bad lately. He walks around with a music CD (Mozart or Baby Bach) in his hand, he wants to put the Baby Bach's VHS on, he wants to play pinball in the computer, he wants to put different DVDs in the player, etc. I hate these obsessions because they bring me back to when he was 18 months and was obsessed with watching Baby Einstein movies and then at 2 years old, all he did was put VHS videos and rewind them and fast forward them. More than 4 years later, his obsessions continue to be the same. His pretend play has gotten better. He has demonstrated that he can do it. But his passion is putting CDs in the players and watch them spin.

I have also noticed that his humming has returned and now he is rocking himself quite a bit. He is also jumping on couches and on my bed more than he normally does. He is also not as responsive when we talk to him as he had gotten. I am sure it is part of the side effect of the HBOT, but it makes me lose my patience.

Another thing that I noticed is that early in the morning, before I give him his supplements or he eats, his languages is much better, his pronunciation is sharper, and the sentences are better constructed. So what is affecting his brain? The food or the supplements or both? Tough to know.

Saturday, March 1, 2008

(HBOT 100) Very Interested in a PG Movie

Jonathan had a full day today. He had Tae Kwon Do in the morning, then HBOT and in the afternoon, his school had its Carnival event and he went with Daddy for a while. I was there volunteering.

Abuita took him and Vanessa to play with a friend for a while. After that, they came home and we went to the Movies to see "The Spiderwick's Chronicles". I thought that it was going to be too scary for the kids and I also thought that Jonathan would not be interested because it was not cartoon. To my dismay, he was very interested. Got scared a couple of times, but was able to control his fear by gently just covering his ears while he continued to watch and then let them down as soon as he figured out what was going on. He ate the entire bag of popcorn and did not take his sight away. He also sat at his chair 90% of the time. He stood up only twice and I reminded him to sit and he did. He later was able to tell me a great deal about the movie, which means that he understood quite a bit.

Today I decided to remove all the herbs for a week. I am going to give him Vitamins and Minerals and enzymes for a week, then slowly add some of the other amino acids and other supplements until I figure out which ones are making him misbehave.