Friday, February 29, 2008
We had a very good dive. Jonathan watched the movie and was pretty calm. After that, he asked me to take him to McDonnalds for a 6-chicken nuggets happy meal. When we arrived, he ordered it (drive through). He did well. I repeated just in case the lady didn't understand. However, when he got the bag and opened it, he noticed that it was 4 chicken nuggets. He said to me "mommy, turn around. We need to change this. I want 6 chicken nuggets. They gave me 4. Turn around". It was great actually to see how he made the connections and he rationalized it. In the end, we turned around and had the boxes exchanged.
At home, we stayed up playing for a while. He put on a pair of skates that a friend of Abuita's gave him to practice. It was the first time, and he really liked them. Vanessa has rollerblades and she could go faster than Jonathan, but he can use these to practice and we will get him a pair for his birthday.
Thursday, February 28, 2008
Back to the behavior situation, I told them that that was my biggest concern last year when we had the IEP meeting but I feel that no one then really listened. I wanted a full-time aide back then and it was denied. The gave him 20 hours a month of Special Ed support and his kindergarten teacher tends to spend way too much time with him redirecting him and working with him. They said that he gets a lot of attention now, and I told them that obviously it is not the most appropriate support since the kindergarten teacher feels that he is not performing well.
They gave us positive feedback and indicated that they believe that Jonathan is very smart. When he is interested, he can do amazing things. The music teacher said that what amazed her was that Jonathan's body language is deceiving. He seems not to be listening and focusing, but if you ask him to do the work, he does it. The Speech pathologist also commented on how extraordinarily his language has developed this year. She has been working with Jonathan since he was 2 1/2 years old so she can really see the improvements. They also commented that Jonathan is very sweet and social. And that he is not aggressive. On the contrary, he is gentle and sweet. They call him the "gentle giant". Jonathan is a big kid for his age (both tall and heavy).
The main issue is that he needs to be prompted and redirected too much for a mainstreamed school environment and the 1st grade teacher may not tolerate that. We asked if he should repeat kindergarten and the teacher said that that would be terrible for him because he is too advanced and would be bored to death. They realize that part of the problem is that he is bored at times and loses interest. But the teacher has problems passing him with a straight face because he is inconsistent.
The action item is that we are having an IEP meeting next Wednesday at 8:45am to discuss 2 of the 4 focus areas and expand them. This will be an addendum so that we can have the normal IEP meeting again in June. But we need an immediate solution to the current problem.
I was very sad/upset/frustrated today about this because there is little that we can do. Since I work full-time, I cannot homeschool him, or even work with him on tasks that would help him concentrate. And at home we have limited time to work with him. But I need to figure something out. I know this is going to be like this the rest of our lives because the main problem is that Jonathan is in a "predefined learning environment" where he needs to adjust and mold to their rules rather than an environment that is more flexible and caters to his needs. Even with IEPs, the main issue is that he is not neuro typical and we are trying to have him fit in an neuro typical environment with help. The current help is not appropriate apparently. We'll see what the school proposes.
Wednesday, February 27, 2008
I received an email from his DAN! Dr. letting me know that his CBC blood test results were in, and a few values were a bit high. His Creatinine is low and his BUN/Creatinine ratio is elevated. He said he is not concerned about that. But I need to understand what those values mean. Off to research :)
He also said that his Alkaline Phosphatast is 315 which is slightly above normal. But he believes that it can be explained by growth.
Lastly, and the one that is of a major concerned to me is the 3 liver functions - SGOT, SGPT, and GGT. The GGT is 30, which is elevated. The normal range is 3-22.
He said he does not want me to make any changes and he is not concerned right now, but he wants to re-test him in 3 months. But I can't take that passive attitude. I am going to start with a few Yasko alternatives. The Dr. thinks it might be the diflucan. I got his urine amino acids test results and it is showing very very high taurine. So I am going to attack that right away.
Lastly, today Larry King had a very nice segment about Autism with an autistic teenager that talked about his experiences and his book. It was on one hand very refreshing to know that a person with autism can accomplish so much and gave me a lot of hope. He is a very courageous young man with a positive attitude and optimistic. And on another hand, it was sad in my heart to see how hard it is for autistics to fit in. It brought a great deal of sadness to my heart. I know that Jonathan is going to have a rough life, and it is hard to see your child suffer. This boy received a lot of love and support from his family and because of that, he is high functioning and will someday be independent. I am proud of him and I wish the same for Jonathan.
Monday, February 25, 2008
Despite his obsessions, Jonathan's language was really good today. It was out of the ordinary and it caught everyone's attention. He called me on my cell phone while I was on my way home because Vanessa told him that she wasn't going to play with him because he was speaking to loud. He called to complain to me that he wanted to speak "medium" and Vanessa didn't like it. I guess Vanessa eventually got over it because when I got home, they were playing. When I got home, he told me everything that he was doing (with the videos and CDs with was playing with) and told me what he did in the afternoon. And would simply not stop talking. Many of the things he said to me were too funny, I almost laughed but I controlled myself because I wanted him to know I was paying attention.
Both yesterday and today his language has made a turn. I asked him to do something yesterday (I cannot recall what it was) and his answer was "mom, when I am a Dad I can do that. But I am not a Dad, I am a kid. You need to ask Daddy". That just blew my mind. Later, he was teasing Vanessa with his apple juice giving her the bottle pretending there was something and then pulling it from her saying "just kidding". That was also very exciting to see. Today there were many other examples. The one that caught my attention the most was when he asked me for apple juice. I poured some in a cup and told him that the cup was on the counter top. He had trouble finding the counter top, but he did. Then he came to me and asked for more apple juice. I went to the refrigerator and as I pulled the bottle and started pouring some more, he said "ah, I didn't see that". I asked him what he was talking about and he said "the apple juice. I didn't see that it was there in the refrigerator". He had never made a comment of that nature. I gave him the cup and he poured water into it.
I have a love/hate relationship with the HBOT. Because in order to see nice improvements like the ones we have been noticing in the past 32 hours, we have to suffer through regression and misbehaviors. But it is all well worth it.
Sunday, February 24, 2008
Basically, Jonathan's behavior continues to regress. Javier and I talked about it on Friday when it was most noticeable. I know it is the oxygen. I don't know if it is because it is feeding strep/clostridia, or simply a side effect. He is humming a lot. He keeps obsessing with electronic toys. His new movie is Blue's Clues. His new thing is to open the battery compartment, take the batteries out, play with them in his hand and put them back. I hate obsessions.
His language is doing amazingly better though. His sentences are much much better. He is now more capable of putting the tenses in the right place (present vs. past). He is also using better expressions that don't make him sound so strange. However, when he gets excited, he continues to jargon.
I took him to a lab on Saturday to draw blood for his CBC and Vit. A and Cholesterol test that his DAN! Dr. couldn't do back in January because he was not fasting. He did great. I put the anesthetic cream on his arms and he didn't feel that needle go in. He was fascinated.
Other than the nice improvement on his language and I also noticed that his bowel movements are better formed, I don't see improvements on his hyperactivity, or concentration. As a matter of fact, he cannot focus well if his is not interested.
We'll see what this week brings us.
Tuesday, February 19, 2008
When I arrived at the HBOT trailer, he was happy and active. I asked him how his throat was, and he said that it was fine. We had an uneventful dive. There was a 4-year-old that wanted to play with him, but he was not very interested. I read a couple of magazines while he watched Scooby-Do.
On the way out, I needed to go to the bathroom. The trailer is parked in the parking lot of a church. I told Jonathan that I had to go potty, and he turned and with a cute voice said "you mommy? you have to go to the bathroom? Can I go with you?". We went to the church and used the family bathroom. He was funny telling me that I had to wash my hands (since I tell him all the time) and then he prepared the paper towel. I used it up, but it was electric and more paper came out. So I told him to leave that there and he said "yes, that is for the next people that use the bathroom". That shocked me. I smiled.
We ran to the car (it was freezing) and inside the car, he asked me to put a CD in the CD changer. I told him that I wanted to hear the iPod instead and he told me which son to put on. Then he told me that there were 9 buttons for the CD changer and that the "zero" was not used for the CD changer. I explained that the CD changer only used the buttons 1 through 6. And that puzzled him. So he kept questioning me why the 7 though 9 were used for, and I told him that they were used for the radio and not the CD changer. He said "UHHHH. The buttons 1 to 6 are used for both radion AND CD changer, but 7 to 9 are used for radio only. What is zero for mommy?" So that conversation went on for a few minutes until he realized that today is Tuesday. He said "mommy, the other day you told me that I can eat McDonald's Tuesday, Wednesday and Thursday only. Today is Tuesday. I want McDonald's." I did tell him that last Thursday.
It amazes me how he can link things in his head lately more than ever before, yet he cannot find his Jacket or shoes staring right at him.
Today his DAN! Dr. gave me some of the results from last week's urine porphyrins french test. The Dr's message said "I am delighted with the results". Honestly, so am I. When I did the first test last year, the results indicated "marked mercury toxicity". And I had been doing 1.5 years of transdermal chelation. I was very disappointed back then. During 2007, we were very aggressive, from Valtrex (antiviral), to suppositories (chelators), to HBOT, etc. And I do feel that it has paid off. The results dropped dramatically and I can see it in his improvements too. The markers for 2 of the items are still pretty high, but one is almost half what it was last year and the other one is almost 1/3. We will continue to chelate and do HBOT and other biomedical interventions this year, focusing on the gut/yeast/bacteria/viral detox in addition to metal detox.
Here are the results of his French Porphyrin test results:
| || |
| || || |
7 - 14
1.5 - 3.5
0.4 - 0.8
1.0 - 2.9
2 - 5
50 - 90
| || |
0.3 - 0.6
** Still high but within range
High levels of 5cxP, prcP and cP
Jonathan still fits this profile, but has improved dramatically.Autism:
High levels of 6cxP, 5cxP, prcP and cP
Jonathan slightly fits this profile. His 6cxP and 5cxP are just a bit high. To some it may not be considered high.
High levels uP and cP
Jonathan still fits this profile.
High levels uP
Jonathan still fits this profile.
Porphyria Cutanea Tarda:
High levels uP and 7cxP
Jonathan does NOT fit this profile
Monday, February 18, 2008
Daddy told Jonathan about the cavities and he almost started to cry. He brushes his teeth every night and does not drink any juices or eats anything after that to avoid cavities and that is what we always tell him. So the fact that he does have cavities, depressed him. But daddy explained that he has to floss every night and brush his teeth both morning and evening. Up until now, he was only brushing his teeth before going to bed. No meltdowns. He understood.
So my new challenge: keep my kid's teeth healthy. Life with kids is never easy, is it? I flossed his teeth today, and he was great. He opened his mouth big and I did the best I could. I don't want to hurt his gums, so I was gentle today. His teeth used to be so separated. I don't know when the gaps closed. I never noticed. 6 months ago, the dentist told me that since his teeth had good separation, he didn't really need to floss. She said the same thing about Vanessa. But I guess she was wrong. So I flossed Vanessa's teeth tonight as well.
Abuita took the kids to play bowling in the afternoon. When I got home, they were playing in the basement. But Jonathan was not feeling well. He was complaining that his throat hurt. I don't know if it is related to the teeth cleaning or that he is getting sick. I hope it isn't that he is getting sick.
Sunday, February 17, 2008
At home again all he wanted was to watch the Disney DVD or play with the computer. Sometimes he helps me cook, but this time he was not interested. Vanessa helped me instead.
I can notice some improvements with his verbal language. For instance, Vanessa said today "mommy, there are no more cupcakes" and from the family room Jonathan responded "that's because you ate them all". And that is not like him. He is more alert and is constructing his sentences a bit better.
Saturday, February 16, 2008
Daddy mentioned that during the HBOT Jonathan was quite obnoxious during the movie, repeating everything, laughing out of control, and being overly goofy. He had been doing that with me too during the dives. He also keeps touching his genitals during the dive. I don't know what that means.
I think it is all related with the HBOT side effect. We just need to ride it out.
In the evening we went to visit my extended family as today is my aunt's birthday. He was again obsessed with watching the same Disney movie, screaming of laughter at certain sketches that he has seen at least 20 times. Then he got tired of it, and went to the computer to play with Nickjr. com.
Friday, February 15, 2008
We dove alone today. Jonathan was very hyper/enthuthiastic about a new Magic School Bus movie. He kept telling me "I love bats mommy. I want to be a bat and fly. This is a new movie mommy, we don't have this movie at home. I love this movie". When we got out of the chamber, he told me that we didn't have that DVD and that we had to buy it. It was my opportunity to have him learn to work for what he wants. I told him that he has to bring another green card next week so I can buy it. At first he wasn't happy, but he now understands. I am going to use these types of incentives to teach him to appreciate what he has by working hard to get them.
Thursday, February 14, 2008
We have a pretty uneventful dive. When we arrived home, we went out to dinner with Abuita, Tio Hugo, Mommy, Daddy and Vanessa. He had a good evening, but we came home very late. So I am afraid he is not going to have a good day tomorrow.
Special Ed teacher called me and told me she was going to setup a meeting with everyone next week to discuss Jonathan's case.
Tuesday, February 12, 2008
Today we received Jonathan's 2nd quarter's report card. On one hand, I am glad to see that he is "Progressing toward mastery of Kindergarten objectives". It seems as though he is going to pass to 1st grade. Although it is early to say. But what got me really worried and even sad is the last sentence in the teacher's narrative: "I am concerned with the amount of time spent redirecting Jonathan. He seems to have regressed since the first quarter".
I noticed that for the past 2 months he is more hyper, and his attention span has shortened. And I have been working towards figuring out what is going on. One thing that made things a bit better was re-introducing Vitamin K2. I had ran out of it in December and that is when he was really bad. But at school apparently, although he has gotten better, he is not back to the way he was last November. I am going to re-introduce the entire Vitamin K2 protocol again. I started him back on VSL#3 probiotics tonight and I am going to order the supplements I am missing. This is very troubling for me because at this moment in time, I cannot quit my job to work full-time with Jonathan.
So my plan is to get back on the Vitamin K2 protocol, finish the HBOT and do the neurofeedback therapy. He is still not articulating all words properly. I cannot find a speech therapist that will take my insurance yet. So I am going to find out if I can do a couple of Tomatis sessions. There is a new place in the area. I don't know if they take insurance or not. I'll call this week to find out.
I know this is going to be a roller coaster with school for the rest of our lives. But it is so frustrating that Jonathan is a brilliant child and yet because of his autism, it is hard to see his potential. And because I only see him 3 hours a day (1 hour in the morning before school and 2 hours in the evening when I get home and before he goes to bed), neither which time I am working with him because I am busy preparing breakfast or dinner, that there is very little I can do to correct his behavior. I am not a very happy camper today. But I'll think of a solution. That is all I can do.
Sunday, February 10, 2008
I got him ready and Daddy took him to HBOT today. I went to the gym with Vanessa instead. When he all got home, Jonathan immediately went to play with his computer. New obsession: "www.nickjr.com".
In the afternoon, as we left to visit my extended family, he was watching a movie in the car and laughing out of control at something that he has seen at least 20 times. Then he was going crazy weird over another scene where Goofy is playing footfall and making strange passes. I asked him what was going on and he told me that Goofy was funny. Could not tell me the actual meaning of the sketch. Vanessa on the other hand explained nicely what was going on.
That made me think. How much does Jonathan actually understand from movies or even books? I need to find out. I believe it is kind of superficial. He was laughing at sad or scary situations. But in other movies, he seems to get more of the meaning. That does not make sense.
When we arrived at my extended family's house, first thing Jonathan did was put in a movie in the DVD player in the kitchen, and 10 minutes into it, he wanted to change it. Then he stopped it and watched Noggin for a bit. Then he asked if he could play with the computer. My blood was rising. When he starts behaving like this is when I wished I didn't have to work and could take care of him and do RDI. He desperately needs RDI. I simply have no time.
Saturday, February 9, 2008
HBOT was good, uneventful. We watched the Magic School Bus and the hour went by quick. After that, he accompanied me to run errands and he was great. We went to a spa so I could purchase a facial cream, and he was very curious, spoke with the 2 girls at front, who were great and gave him candy and juice. He said hi to people he saw out on the street. He noticed things, like buildings and the colors of the buildings, how fast the wheels in a tire rotate when driving. He even pointed out a couple of bumper stickers. He was very talkative. We went to Costco and for the first time it was not stressful for me to go shopping with him. He helped me put stuff in the cart, he was patient (we waited 30 minutes to pay). He was fun to be with.
In the evening we want to our friends house. They had invited other couples with kids. There were 8 kids and Jonathan did really well. He played with them for the majority of the evening. At one point, the kids were kicking each other, he came to me and said "mommy, I am taking a break from people. Can I play Wii please?" I really liked that. Because he was able to easily regulate his emotions and look for an activity that was more enjoyable without a meltdown. We always ask him to take breaks from video games, so he used the logic to transition from one activity to another one. Unless you live with a child with autism who cannot deal with crowds or transitions, it is hard to understand what a great achievement it is that Jonathan has learned to manage this. No more meltdowns due to over stimulation :)
A pretty good day.
Friday, February 8, 2008
About 10 minutes later, he went to his room to play with his Mozart CD. His obsession to play with music CDs has returned a bit. I changed him in his room and then headed downstairs to prepare breakfast and lunch bags.
A little later, Jonathan came down saying "Ok, I am here to watch Super Way with you Vanessa". His sentences are getting smoother. He is using some words that I had not noticed before like "instead of".
When we arrived at the chamber in the afternoon, he was a bit hyper but not bad. We were the last to enter the chamber because I got there late. Traffic was bad. Inside the chamber, we watched Sponge Bob. He likes to repeat the script, but he doesn't really pay attention to the words, he just makes sounds like he is talking. That really drives me crazy. The entire time I tried to change his behavior to listen and understand what was going on and stop scripting. That is hard for him. And he enjoys the silliness of the show and could care less what anything means.
Today he was not as hyper as the night before.
Thursday, February 7, 2008
Like I said, I knew it was coming. No other problems or regressions have been observed.
Wednesday, February 6, 2008
This morning he was very tired. He went to bed at 9:30pm last night, so it was hard for him to getup this morning. I didn't receive any notes from the school, so I assume he had a decent day. He said it was a good day.
In the afternoon, when we arrived at the HBOT, he was happy and talkative. We went in, and I have to admit that I am very shocked to see how Jonathan has totally learned how to pop his ears. The pressurization does not bother him anymore. We watched The Wiggles as the other kid with us likes those types of movies. Jonathan has outgrown them, so 15 minutes into it, he was bored to death. We read a couple of books, but I need to bring more books with me tomorrow. I know we will be watching the Wiggles, Dora and Barney for the next 40 days :)
After we got home and I bathed him, he played with Vanessa for a little bit and watched a short movie. We got him to bed at 9:15pm tonight. Not bad considering that we got home at 8pm.
He seemed a bit distracted today and even absentminded. I had to grab his face a couple of times so he could comply with what I was telling him. Almost as if he was drugged. He has not lost anything or regressed yet. My dad did notice that his stools were loose today. But it might be the yeast flaring due to the oxygen.
Tuesday, February 5, 2008
What I would like to get out of HBOT this time around is better expressive language (it is still rote and he still uses lots of scripts, he still repeats what he sees on TV and he still has trouble controlling his volume). I would also like to help him with his hyperactivity (he cannot stop moving) and improve on his receptive language and clarity. I am going to target the hyperactivity with neurofeedback after we are done with HBOT. I am actually expecting that his hyperactivity will double with HBOT.
He is still obsessed with electronic toys, but I am coming to terms that he will always have an inclination to those and perhaps he will do something good with that skill when he grows up. Right now, we are pretty content that he cannot play with video games from Monday through Friday and only a couple of hours on Saturday and Sunday.
The other behavior that I was never able to modify is his lack of interest for playing with imaginative-type games (hero dolls, farms, etc.) Perhaps he doesn't understand the purpose. But he is really not interested in miniature animals (like Vanessa) or dinosaurs, etc.
I have to say though that Jonathan's improvement since the first HBOT session last year has been phenomenal. He is a different child. He has improved in so many areas that remembering how bad last year was seems like an eternity. We can do things as a family now. We can go to places, Vanessa and Jonathan play very well together (and fight lots too), Jonathan is excited about things, he proposes new things to do. His pediatrician asked me last Thursday why I don't go back to get his diagnosis changed. But the reality is that I am not treating the diagnosis. I am treating specific areas that he still has trouble with and dropping the diagnosis means less help from schools and other organizations.
So today we had a very good day. He went into the trailer and started talking like non-stop with the operator. Then he took my camera and started taking pictures of people. When I asked him who was missing, he immediately realized that he had missed J. Inside the chamber, he popped his ears like a professional. He did not even complained. He moved a lot inside. I thought it was that he needed to go "number 1", but that wasn't it. It is part of that new problem he has that he cannot stop moving. We dove at 1.75 ATAs today.
We got home at 8:15pm. It is going to be a challenge to feed him and get him to bed before 9pm every day. If he doesn't sleep his 10 hours, he does not perform well at school. I already notified the teacher. He and Vanessa went to bed at 9:30pm.
Monday, February 4, 2008
I have posted some pictures below, but the video really tells the story.