Monday, September 29, 2008

(HBOT 153) - Summary of Outstanding Issues

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

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

Wednesday, September 24, 2008

(HBOT 149) - 4 Years Ago Today

4 years ago today, Jonathan was diagnosed with Autism. It was a Friday, 11am. I remember it as if it was yesterday. After spending a week long vacation with our best friends and their kids, we noticed something was very very wrong and different with Jonathan. We spoke with his pediatrician a week after we returned from vacation. Finally, after a year of being told that “boys are always delayed and he will come out of his “universal stage””, he referred us to a pediatric neurologist who, on September 24th 2004, gave us the devastating news. “Your son has autism. A life-long disability. He will need to be institutionalized”. Our lives changed that day!

4 years later, looking back, it is amazing everything that has happened and how different things are today. It has been a true marathon and we have not reached the end-line, but I feel we are getting closer and life has a brighter future.

Today we went to see Jonathan's DAN! Dr. When we arrived, Jonathan asked me in front of the Dr. if he was going to get blood today. And I asked the Dr. He said no because we had done that before, so Jonathan looked at me and smiled. He was not anxious though, nor was he hyper or bouncy. The Dr. asked him how he was and started asking some questions about school, what he did during school, what he likes to do, how many friends he has, etc. They had a nice conversation. Jonathan was engaged and responded well. Good eye contact. Did not get up in the middle of the conversation and left the Dr. talking or avoided talking to the Dr. altogether like he has done in the past. He had to think hard on a couple of questions, but answered them and kept listening and answering. I knew the Dr. was trying to assess where he is, and I felt so proud of my baby. A dream come true. The Dr. turned to me and said "amazing, simply amazing. I can't believe I am having a conversation with the same kid that 4 years ago was diagnosed with autism. I am very proud of him and I am very proud of you. You did it".

We spoke about my concerns: (1) language; (2) attention; (3) gut issues; (4) humming.
  • For language, I told him that I felt like Jonathan was learning a foreign language. He inverts some words and has trouble sometimes putting the sentences together. Also understanding some language, primarily spoken. And the Dr. said that he indeed is learning a new language. Since he missed that growing up, now he is learning. But he will eventually catch up since he can communicate simple and some slightly complex thoughts. He recommended that I increase the speech therapy. He also agreed to continue with the Listening Program. We are starting the home program in 2 weeks.
  • For attention, this is a major concern for me, since he misses out on instructions. He is easily distracted. I told him that I didn't want Ritalin. Jonathan got to where he is without Ritalin, and I am sure not going to give it to him now. He concurred. We need to continue to fix his biomedical problems so that his body can relax and pay more attention.
  • For Gut issues, he got the CDSA results and his gut has high yeast. I knew it. He gave me diflucan again. His liver enzymes are back to normal, so it is safe to start it up again, and also told me to start him back on IgG2000. I also need to change probiotics. I give him VSL #3 which is very strong.
  • For humming, he didn't have much input. It is the only stim that Jonathan still has and because the EEG showed tons of activity in his brain that he is not filtering (for whatever physical or environmental reason), this seems to be his way to control it.

I told him that I want to do Yasko's Advanced Language Program with stem cells and although he has not tried it, he told me that he would be very interested in my feedback. It may help with more than just language from what I read.

Another thing he noticed is that Jonathan's voice intonation is not robotic anymore. That was one of the first things he noticed. His voice is not flat anymore. His tone varies appropriately. He asked me what I thought contributed to that dramatic change and I told him that I thought it was the Listening Program (based on the Tomatis' protocol). Because we have done over 140 HBOT dives and the tone never improved. But in a matter of a month after a 10-day session of the Listening Therapy, Jonathan's voice has pretty good intonation.

******************Unofficial Diagnosis Change******************

Even though this Dr. told me back in April that Jonathan had a future and that he would change the diagnosis to Aspergers, yesterday he told me that he would even drop that diagnosis altogether. My heart sank in a good way. "I did it". The Dr. told me that he completely disagrees with Children's Hospital's diagnosis and that I should look into getting a second opinion. “This child does not have autism anymore. Not even aspergers”. I told him that I will leave the Dx as is for now so he can get the speech support he still needs. But I will get a second opinion soon.

So in a matter of 4 months, he went from aspergers to no autism. And although this is not the "official" diagnosis, it made me feel very optimistic. It only matters because it is today, exactly 4 years later, that I get a “Dr.’s” opinion again. And this time, the news is very positive and optimistic.

In my eyes, we are starting a new phase. He may not have autism anymore, but he is still somewhere in the spectrum. His autism has moved within the spectrum into some type of ADD/Language Disorder. But I am optimistic that this is the tail-end and we will be able to help him control ADD type behaviors and improve his language so he can be successful in life. Thankfully, Yasko treats most learning disabilities the same way. So I am going back to Yasko. She has new research, new mutations, and new protocols and as soon as I recover from the 40 days of HBOT (sleep deprivation), I am going to start the new ALP protocol.

We will continue to see this DAN! Dr. until I can take him off all supplements. So we still have some more months to go.

A note to my husband: no, we are not stopping the interventions because the Dr. said that we did it. We need to fix the language and attention problems before we count victory.

Thank you for reading and for being a part of this recovery journal. This journey, although hard and overwhelming, has been very educational and very enriching.

Sunday, September 21, 2008

(HBOT 146) - Language Improvements

Jonathan and Mommy inside the HBOT chamber. I give this chamber a very large credit towards Jonathan's recovery. 140+ hours.

During dinner tonight, Jonathan said "mommy, does Maine have a beach?" and I asked him why he was asking me that question and he said "because Maine does not have another state to its right. What about Florida and California?" and that blew my mind. He is definitely making some major brain connections, probably beyond my understanding.

Today, both Javier and I noticed that his language has improved. His intonation is much better. He does not sound so robotic anymore. And the verb tenses are more accurate. Is it the HBOT or the Listening Therapy or both? Who knows. Whatever it is, it is working.

Yesterday, we spent the day out at friends house, and he played beautifully with all the kids. Better than ever because he normally gets so bossy that the other kids push him to the side. But yesterday he just played along really well, never showed a moment of boresome or tiredness. And used language very efficiently to communicate. Yesterday I would say is the most "neuro-typical" I have seen him be. A great feeling.

The things that still make his voice sound a bit flat or strange is that he would say for instance "I do not know" instead of "I don't know", or "I cannot do that" instead of "I can't do that". But he is speaking with more confidence, so these are not as noticeable.

Today, he had swimming lessons and we were pretty shocked at how well he is doing in just 3-45 minute sessions he has had. The teacher does not know he has autism and talks to Jonathan like he would to any of the other kids and Jonathan responds and follows the instructions. As a matter of fact, they are having more trouble with other kids understanding and following instructions than with Jonathan.

Today we also noticed that he was a bit more distracted than normal, yet less hyper.

  • Language (expressive): this week we noticed a huge improvement in his intonation, sentense structure and fluency.
  • Language (receptive/comprehension): I don't have to rephrase as much anymore.
  • Auditory Memory: I can give him 3 instructions at a time and 2 out of 3 times he gets them right.
  • OCD: his normal obsessions have minimized. He only played less than 1 hour of Nintendo Wii each day. And he played a bit with a couple of games in his dad's iPhone, but not obsessive.
Areas of concern (besides language):
  • Stims: He is humming more than ever. I keep telling him "you are humming" and he goes "ugh!", he stops for a few seconds and starts again. Unless he is watching a movie or playing a game, he hums. Even when doing pretend play on his own. If he has to converse, he doesn't. It seems as though his brain is so active that he needs to hum to keep it under control. That is my hypothesis.
  • Bowel Movements: still very loose. We are going to see his DAN! this wednesday. I sent in CDSA 2 weeks ago and I hope it will arrive by the time when go.
  • Attention: he seems to be more distracted than usual.
  • Sensory: he needs sensory input. He keeps moving, rocking.

Saturday, September 20, 2008

(NO HBOT) - Distracted and Hyper

Jonathan is a great HBOT responder. And in my observations, he normally responds right around the same amount of dives. Right around the 20th day, Jonathan gets hyper and absentminded. It has happened on all sessions. We completed 25 dives and Jonathan has been very distracted since Monday (his 21st dive in this 4th session). So it is nice to see some reactions, because it means that there will be some improvements soon.

Thank you Cindy for your kind words in my previous blog. I am hard on myself. Thanks for the hugs and kisses.

I am much better. And I realized that the lack of sleep and exercise, and the horrible diet I am following (skipping meals and eating tons of chips) were probably also a big influence in my nervous breakdown. Since then, I have been eating better (except today I skipped lunch again) and I started taking vitamin and minerals. That has given me a huge booster. I don't feel as tired and sad. I don't feel sad at all.

And today I saw Jonathan again with my optimistic eyes. In the morning, as we were all getting ready to leave, Vanessa left her blanket in the house. Daddy and Vanessa were outside in the garage getting ready to leave. I asked Jonathan to pick it up and take it to Daddy. He did it and came back in when I realized that Vanessa's change of clothes were also inside the house. I gave them to Jonathan and told him to run outside to catch daddy before he left. Daddy was pulling out and stopped when saw Jonathan. He took the bag and told Jonathan to get back inside the house so he could close the garage. He waited for Jonathan to be up the steps and closed the garage door. Jonathan came inside the house and told me that daddy was gone and he had given him Vanessa's change of clothes and that we were late. So I grabbed my PC, purse, he grabbed his backpack and we left. But while Jonathan was out in the garage I realized how close to being "neuro-typical" he has become. He can do what I ask him and still be independent and responsible. I don't fear that he is going to run out to the streets and get run by a car. That is typical of an autistic child. To run without understanding danger or the unknown.

This evening he surprised me again. I heard the kids playing and they normally play pretend where Vanessa is a character and Jonathan is another. So as I heard their conversations, I figured it was because they were playing mom and dad as they normally do. But when I got close, I learned that they were using Vanessa' tiny dolls and started a soap opera of their own. That really we a wonderful thing to see.

Thanks for reading.

Tuesday, September 16, 2008

(HBOT 143) - Lots of Auditory Processing Needed

Today I feel like venting. I am normally very positive and optimistic, but today got to me. Just like that day I went to Children's Hospital.

As part of his first grade homework, Jonathan has to read (on his own) every day for 15 minutes and record it in a log. We are reading the Magic Tree House book number 1. I know that it is an advanced book, but he can read it quite well. So I decided to read that book instead of other easier ones because this book has very few pictures in it. I want Jonathan to work hard at imagining what he is reading. Once of the comments I received from both evaluations is that Jonathan is very visual (biggest strength) but has auditory processing issues. So if he cannot see the picture, he has to work harder to comprehend what he is reading.

Last night, Jonathan and I read again but he was so tired that he did not want to read. So last night, I read one chapter to him. Stopping after every paragraph to ask him what is going on. He did not get a word. He did not comprehend anything I said. And it stroke me that he could comprehend fairly well if he read it by himself, even without the pictures, but not when I read the book.

Today I had my follow-up meeting with the auditory processing therapist and she told me that Jonathan's biggest issues is his auditory processing. This affects comprehension, language, attention, etc. She suggested an intense home program for 8 weeks, 4 weeks off and 8 more weeks and return for a re-evaluation next year and another boost. She explained that the reason why Jonathan can comprehend more when he reads than when I read is because there is an extra step that his brain has to deal with when the sound comes from someone other than himself. And he is having serious trouble decoding other people's voices and putting them in organized input in his brain.

I was so thankful that I know better what I need to target, yet furious with myself for not having enough time to dedicate it to research and to working with him when he is back from school. My job is more demanding every day. I can't breathe I am so busy. I hardly even eat lunch. And it bothers me to be in this situation. He needs me so much right now. And with this market the way it is, I cannot imagine being able to find another job. I simply felt very sad and impotent today and I hate feeling this way.

The other thing that bothers me is all the false positives that people like to give. I have been hearing this "he is going to be okay. he is one of those kids that will recover. he is going to make it. I don't say this about all the kids that I see, but Jonathan is definitely within the kids that will come out of this. etc". Over and over I hear these comments from doctors and therapists, and yet he is not out of it. As a matter of fact, his DAN! Dr. who told me when he first saw him that he didn't have autism, later told me to come to terms with the fact that he would always be on the spectrum. And the Children's Dr. who told me that she could change the diagnosis but didn't want to so I could get the services, told me that I would not need to come back ever for a re-eval because he is where he is. So I need to fix the problem. If I have gotten this far, I need to finish it. But I am not sure how to get out of my current situation. I guess time will tell.

He was very absentminded today and hummed a great deal. He also rocked his legs a lot.

Saturday, September 13, 2008

(HBOT 141) - Second Week at School

Jonathan is adjusting well at school. They moved him a bit closer to the teacher's desk, but still not right next to her. We went to "back to school night" and saw where he sits. He can see the teacher easily. What worries me is whether she can see him. Depending on how he does this first quarter, I will request that his desk be moved again to even closer.

He is not as excited about 1st grade as he was about Kindergarten. We need to wait and see. I like his new teacher, but it is too soon for me to know. And since I cannot volunteer time daily to get to know her better because my job is so demanding I have very little flexibility, I need to wait and see.

I am very very worried about his very soft stools. And he is a bit extra sensitive again, which can only mean yeast. I started him on s. bolardis probiotics 3 days ago. But the consistency is still very soft, almost diarhea. I am scared that his colon has severe inflamation and I am not sure how to make it better yet. I sent in a stool test last Monday and I am waiting its results. We are due to see his DAN! Dr. in 1.5 weeks and hopefully the results will be in so we can get this kid's gut back to normal.

Sunday, September 7, 2008

(HBOT 136) - First Week at School

Jonathan had a very successful first week at school. He was energized and happy to go back to school. I had a couple of comments from both the 1st grade teacher and the special ed teacher in charge of his IEP.

1st Grade Teacher:
"I have to tell you that I absolutely adore Jonathan. He is so good natured and he works hard. Any first grade teacher would be impressed by his positive attitude. We are still in our "settling in" mode, but we did do a first writing sample and I was impressed with his effort.

Please give him a pat on the back for me!"

Special Educator:
"Jonathan is having a fantastic first week of school! He has been staying on task and following directions. It seems like Jonathan is smoothly transitioning to the first grade."

This is just the first week, and I know that he will get bored and start to shift if they teacher doesn't keep him challenges and happy. But this is a great start.


Positive - expressive language: His language this weekend had a bit of a twist. He spoke with more complex meaning. On Saturday morning, he came to the bathroom and told me that he wanted to play Playstation. I told him that he could and I asked him if he could turn it on by himself of if he needed help. He said "mommy, I can turn it on by myself, but if I need help, I will come get you, ok?". The "but if" statement is new. That is awesome!!!!.

HBOT - everything is going well. Uneventful. We have already completed 16 dives.

Stool Test - I collected samples to send in for a comprehensive stool analysis. He continues to have very soft (almost watery) stools causing him to have accidents in his underwear. I will send it in tomorrow.