Saturday, August 30, 2008

(HBOT 130) - Listening Therapy Ended

It has been 10 days since I last blogged. A few things have happened. I will try to segregate them as best as I can.

The Listenting Program therapy (new version of Tomatis)
Jonathan completed 10 days of an intense TLP therapy. Because he had gone through 7 loops of Tomatis before, the therapist believed that a 10-day refresher focusing on his weak areas would be best.

He did quite well, but I don't really see much of a change in him. However, I know that he usually reacts 4 to 6 weeks after therapy is complete. So I should see (hopefully) some nice gains in a few weeks. I have a follow up meeting on Sept. 16 to talk about what they observed and how he reacted to the therapy. I will also take an opportunity to talk about their report.

Someone asked a question in my previous blog about being able to use headphones after this therapy. This therapy is pretty save and does not disrupt the ear as Berard's therapy does. Therefore, yes you can use headphones safely after the therapy is done. People that decide to use Berard's therapy, cannot use headphones after completing the therapy. Depending on the problem that is being targetted, Berard's therapy might be better. Just research and ask lots of questions before picking one versus the other. Here is what I found on their website: "It is strongly suggested that an individual who completes the Berard AIT program not wear headphones to listen to music. It is permissible to use headphones for listening to books on tape, for example, or to do spelling drills. Dr. Berard found that listening to music on headphones minimized the efficacy of the training."

Behavioral changes and other observations
Jonathan has been a bit less focused the past week and has terrible diarrhea. I got the CDSA kit and I am going to collect his stools this weekend to figure out what is going on. I suspect yeast overgrowth. But it is so bad, that not even he can control it. and I am concerned about first grade. He has accidents every day and he is very concerned when he dirties his underware. I need to fix that problem asap.

Also, last night (08/29/08), he had a very high fever of 103.8. After a couple of hours, it came down to 101.2. After another 2 hours, it came down totally. I gave him motrin and 3 hours later tylenol. This morning, he had a fever of 101.8. I gave him some motrin and sent him to HBOT (I checked first to make sure it was okay). He doesn't have any upper respiratory problems, no ear infections, no pain in his body whatsoever. Very strange. We went to a friend's house, and this afternoon he didn't have any fever at all. Very odd.

He has also been acting very silly. The auditory processing therapist noticed it 2 days before he finished. It could be a combination of gut issues, HBOT and auditory therapy regression. His regression however seems so minor compared to what regressions used to look like 1 or 2 years ago. So I don't mind them too much.

The Listening Program evaluation summary
I received the report of the assessment that was conductec on July 24, 2008. I was both pleased and worried about the results. I liked that it gives me more information that I can use to continue this road to recovery. Because the more concrete the information you have, the better your possibility of finding alternative approaches to solving the issues.

Here are the areas that he was tested on and the results:
  • FAIR: The SCAN Test of Auditory Processing Disorders: This test consists of one syllable words that are filtered to pass through information of frequencies of 1000 Hz and below. These words are presented to one ear at a time under headphones. This task requires the listener to use "auditory closure" skills in order to complete a word. Poor functioning of this skill could result, for example, in difficulty understanding a teacher who is speaking with histher back to the class when writing on the chalkboard (especially when the child is seated toward the back of the room), or difficulty understanding someone who has an accent or speaks too rapidly. Jonathan's performance on this test revealed a raw score of 29, placing him in the 371h percentile, which is essentially within normal limits for auditory closure skills.
  • POOR: Auditory Figure Ground test: consists of one syllable words presented to one ear with a competing background of people talking.Jonathan's raw score was 22, which places him in the 5" percentile, which is below normal limits for single syllable words. These Results indicate that Jonathan has great difficulty filtering out unnecessary information and focusing on the primary message when background noise is present.
  • POOR: Competing Words test: It consists of one syllable words presented to each ear dichotically. This task required Jonathan to repeat different words that are said simultaneously to each ear, meaning one word is presented to the right ear and a second word is presented to the left ear at the same time. Jonathan's raw score on this was 21, placing him in the 91h percentile, which is below normal limits. This skill should be monitored closely as it emerges at around 5-6 years of age . These test results indicate weaknesses in interhemisoheric communication between ears. If the hemispheres are unable to share linguistic/auditory information in an efficient and symmetrical manner, then hig-h er order skills such as attention, focus and working memory may be compromised. THIS IS ONE OF MY BIGGEST WORRIES. This explains a great deal about why Jonathan doesn't understand certain things.
  • POOR: Staggered Spondaic Word test (SSW): This test is composed of two spondaic words (two syllable words with equal stress to both syllables, i.e. playground, ice cream) presented in a "staggered" manner for each ear. The SSW is a dichotic listening test. An example of the presentation method is:

    ----------1st time frame----2nd time frame----- 3rd time frame
    right ear -----------play-----------ground
    left ear---------------------------------ice--------------cream

    A score can be obtained for each ear in a competing and non-competing listening situation. Jonathan scored below normal limits on this task. For a child his age he should have a maximum of 38 errors and he had 50 errors. He had difficulty on this test because there is more information to process and verbally recall in competing environments. Test results indicate a breakdown interhemispheric communication between ears.
  • GOOD: The Test of Auditory Analysis Skills test: It was administered to test Jonathan's auditory perceptual skills and to identify goals for teaching these skills. This test involves sorting out the individual sounds within a spoken work. For example: Say, "cowboy". "Now say it again and don't say boy". Jonathan scored at the second grade level for this test indicating some excellent higher level decoding skills.
  • GOOD: The Beny Test of Visual Motor Integration (VMI), Visual Perceptual, and Motor Coordination test: The Vh4I requires the child to copy a developmental sequence of geometric forms with a pencil. This test is designed to assess the extent to which the child can integrate their visual and motor abilities. Jonathan had a raw score of 15 points, which gives him an age equivalent of 6 years, 6 months old.
  • GOOD: Two supplemental standardized tests -(1) Visual Perception and Motor Coordimation are administered to compare Jonathan's individual VMI results with pure visual and motor performances. On the Visual Perceptual Test Jonathan had a raw score of 21 points, which gives him an age equivalent of 9 years, 8 months old. (2) The Motor Coordination Test requires an individual to connect the dots, while staying within the boundaries of the shape. Jonathan had a raw score of 21 points, which gives him an age equivalent of 9 years, 2 month old. These tests findings indicate above average visual motor skills and above average visual perceptual and motor coordination skills. However, it should also be reported that when visual eye tracking was assessed Jonathan had difficulty dissociating eye movement from whole head movement. Additionally, he had difficulty with eye convergence at near point.
  • POOR: Vestibular processing. The vestibular system detects motion and gravity and is an individual's main balance organ. The vestibular sense also helps maintain muscle tone, the coordination of the two sides of the body, arousal level, and holds the head up against gravity. It automatically coordinates the movements of one's eyes, head, and body. The proprioceptive system gives an individual feedback as to where your muscles and joints are in space (spatial awareness). During the assessment Jonathan was unable to assume and maintain a prone extension posture. This indicates low muscle tone in his extensor muscles. However, he was able to assume and maintain a supine flexion posture for the full 20 seconds; indicating adequate tone in his flexor muscles. Jonathan demonstrated difficulty with static standing balance both with his eyes open and closed. With his eyes open he was only able to balance on his left foot for 6 seconds and his right foot for 5 seconds. With his eyes closed he was unable to balance on either foot for more then 3 seconds. Overall, Jonathan appears to present with depressed processing within his vestibular/proprioceptive system.
  • FAIR to POOR: Motor planning or praxis is the ability to spontaneously sequence and organize movements in a coordinated manner. Imitating postures is a measure of motor planning abilities. Jonathan was accurately able to imitate simple gross motor postures, but was slow in his execution. It should be noted that he appeared to be cog~tivelyth inking through each movement prior to executing the posture. He clearly had a more challenging time organizing his body to imitate fine motor postures. Jonathan had easier time sequencing the movements of his thumb to opposing fingers. He was able to complete this task with one and two hands, both with his eyes open and closed. Motor planning difficulties may be contributing to the speed at which he is able to complete new or unfamiliar activities.
Their recommendations were:
  1. Jonathan should receive preferential seating in all academic settings to facilitate attention and obtain the best auditory and visual advantage.
  2. Competing auditory information should be minimized whenever possible. Frequent checks should be made to assure what is heard. Auditory information shoild be rephrased rather than just repeated when communicati& breaks down. Multiple step instructions should also be broken down into parts and repeated when necessary.
  3. Given Jonathan's weaknesses in auditory processing, it is highly recommended that there is simultaneous visual cue in a learning environment to supplement the auditory message as much as possible.
  4. A multi-sensory approach should be utilized when teaching Jonathan new information.
  5. It is imperative that Jonathan has an appropriate sensory diet throughout his school day. The more sensor-y in-p ut Jonathan receives during- his day the more regulated he will feel; and consequently present with better attention.
  6. Jonathan should continue to receive occupational and speech therapy.
It was great to have this evaluation and recommendations done. The afternoon I read this report, I also met with the Children's Hospital doctor that saw him on 08/04/08. She, in her own words, gave me the same comments and recommendations that the auditory processing therapist gave me and added "looking into medicine" for minor attention problems. BTW, my meeting with the Children's Hospital Dr. went well because it was very focused. She did tell me that she could drop the diagnosis today but she wasn't going to because of his language deficiencies. If she did, we would not get the support we need to address his receptive and expressive language problems. So, after an hour meeting, I left feeling greatful for continuing to have the diagnosis knowing that it is only a language issue at this point. He does have "social cognition" areas that need to be addressed, but she believes it is also due to his language deficiencies. She told me to work on the problem areas and come back in a couple of years. She highly recommended that I look into RDI and gave me the name of a therapist that will hopefully be covered by insurance, also told me to have 2 hours of one-on-one speech therapy and 1 hour of group therapy a week and added looking into medicine.

However, these recommendations are not going to "recover" him. Just help some. So besides these recommendations (which I clearly stated to the 1st grade teacher and special ed last Thursday), I need to explore other avenues. I am still researching. But I am greatful for this indepth evaluation because between this, the neurofeedback EEG and the Children's Hospitals observations, I again have a goal. I will email Yasko for her feedback.

Wednesday, August 20, 2008

(HBOT 122) Camp Ended, HBOT and Tomatis Started

Jonathan concluded his summer camp last Friday with a very nice note from one of his councelors. It is so great to get such nice feedback. Jonathan became very popular in the recreation center. Even though I signed him up for 7 different camps, the councelors across classes got to know him. He was always happy to go, engaged and eager to join the teams. He always had 1 or 2 friends at the end of each week. He doesn't carry the friendship one step further to try to stay in touch or ask them over to his house, but one step at a time. For now, the fact that he makes friends and gets along with his peers and councelors is a huge step.

Listening Program (new Tomatis) Therapy started on 08/18/08 for 10 days:

In trying to continue to help Jonathan improve his skills and recover from autistic symptoms such as language delay, flat voice and some verbal stims, we decided to do another loop of auditory processing therapy. He did 7 loops 3 years ago. Each loop was 8 days with a 2 month break.

This therapy is a bit different and it is targeting his areas of concerns. It also runs for 10 days and his next session (or re-evaluation) would be in 6 months. He has had 3 sessions already. The therapists are giving positive feedback. However, it is hard to tell if it is helping. As any therapy, we need to wait a few days or weeks after it is over to see results.

HBOT Days 121 and 122

We are back to Hyperbarics Oxygen Therapy. It was a last minute decision based on our frustration from our meeting with Children's Hospital, our rush against time, and our continued drive to recover Jonathan. HBOT has been a critical, almost miraculous, therapy for Jonathan and I wanted to do another set now before he starts 1st grade. The sessions will end October 3rd or 4th, a month after school starts, but the potential benefit a month later is huge.

We are rushing against time. Pragmatics is a problem and although I want to do neurofeedback, something deep inside tells me that I need to do this set of HBOT and Tomatis now and leave neurofeedback to next year. It is a hunch, but I need to follow my instincts. Besides, there is only so much that we can afford.

He has been doing fine. He is a veteran, so we just go in, watch a movie and leave. No problems with ears, or behaviors.

We took Jonathan on Saturday to Quest Labs to get some blood work done (CBC, Vit D, Vit A, Cholesterol and a couple more) His DAN! Dr. communicated with me yesterday to let me know that he only received one test result and believes that Quest did not do the other ones. I am going on Saturday to find out what happened.

However, his DAN! Dr. told me that his SGOT and Alkaline Phosphatase were both elevated which is more likely caused by a growth spurt than an actual liver function abnormality. Other liver functions, especially the SGPT, were normal.

Since we started DMPS and EDTA suppositories again, knowing if the liver is functioning well and normally is critical.

Jonathan's stools keep getting worse despite giving him Candex and VSL #3 (the strongest probiotics I have ever given him - 225 billion microorganism). I sent a note to his DAN! to get a CDSA test kit to find out what else he has in his gut. This is worrying me.

The only other item I want to note is that Jonathan's humming has turned into a high pitched noise. He is constantly making it and at times I notice that he hums a bit and then he makes the noise. It is driving me crazy. Humming did not seem as odd and autistic as the high pitched voice. I will record him to keep audio record of this. I don't know why he is doing this. It started last week. The only new thing is EDTA and DMPS on 08/04/08.

Monday, August 11, 2008

Tae Kwon Do - Green Belt!!!!

Jonathan took a Tae Kwon Do test last week to earn his green belt and he passed it. He and Vanessa took the test the same day. Jonathan had a little bit of trouble at first. He got confused. But as soon as he sat down and another child did his routine, the master called Jonathan and he did his perfectly.
On a separate note, this is Jonathan's last week at camp. He has enjoyed each week and the counselors have given me very good feedback, which is very encouraging.

With regards to the diagnosis, we have a meeting on the 21st to receive the "formal" results. However, I am already starting to be skeptical. The Dr. called me today to tell me that the speech pathologist had an opening this Thursday to evaluate Jonathan. I immediately questioned her and told her that I thought part of the 6-hour session we had last week was to do a speech evaluation and her response is that she did a high level evaluation and it is not in depth enough to tell me where he is and that I need to take him to a specialist. I swear my blood started to boil and I told her that I didn't have time this Thursday to take him. She told me that on the 21st she would give me her recommendations.

I have to admit that I am disappointed with this Dr. Very disappointed. She kept emphasizing that she is very amazed about Jonathan's progress, particularly after reading the first report written 3 years ago, yet her objectivity is questionable (in my mind).

I have gotten over that bad taste though. I know my son better than she does. I know how bad he was 3 years ago. I know he is mainstreamed and requires little support now. I know he is still somewhere in the spectrum. I just don't agree with her on where on the spectrum he is. And that is okay. The whole spectrum evaluation is vague in my opinion. To give you an idea, she told us last week that after talking to the other Dr., they believe that he still has some "repetitive" behaviors that make him fall in the "autism" bucket because he has a bit of echolalia. And their evaluation of his echolalia is that he sometimes repeats after someone tells him something. If it wasn't for that minor observation, she would have moved him under PDD-NOS. So I paid attention after that, and noticed that he repeats, but he repeats in a question format, not as a straight repeat with no intonation. That was my first observation. Then I noticed that we all do that to him and Vanessa. Then I noticed that it wasn't just us (parents and grandma), but we went to visit my sister-in-law and she and her husband would also repeat in amazement whenever the kids said something that they felt was important. So we started making jokes that we all must have autism because we all repeat. And even Vanessa repeats sometimes. So my point is that his so called "echolalia" may not be such. It is a behavior that he learned by imitating because he repeats the phrase at times as a question as we all do. I agree that it is not the best way to use language, but it is not inappropriate either. Hence my quest for helping him with language. But all his other major "autistic" behaviors have disappeared (except for his humming which drives me crazy at times)

But what bothers me is that I was trying to get her to recommend more than 1 hour a week of speech so I can get the insurance to pay and now she is going to send me to yet another specialist. What a waste of my time.

Monday, August 4, 2008

Neuropsychological Evaluation

Preliminary Diagnosis: keeps High Functioning Autism (HFA)

We went today to Children's Hospital to have Jonathan re-evaluated. We spent 6 hours with the 2 doctors that saw him. One interviewed both daddy and me while the other evaluated Jonathan. She did a number of cognitive tests. Towards the end, the Dr. that interviewed us worked with Jonathan for about 1 hour.

After our interview was over, she scheduled an appointment for August 21st to review the results. They use a computer program to analyze the data and they need time to enter all the results and review the output before they can tell us what is going on. However, she did tell us that although Jonathan has made outstanding progress in the past 3 years, he is still on the spectrum. She mentioned that she was going to recommend they leave the diagnosis as High Functioning Autism although PDD-NOS is most likely the most appropriate diagnosis at the moment. But since he has a little bit of speech echolalia which is considered repetitive behavior (this is the only repetitive behavior they could find), she is going to use that to leave the diagnosis as is. Her reasoning is that it will allows us to continue to receive additional help.

On one end, I understand what she is saying, but given that we have gotten very little support from the government with the diagnosis (actually, I avoid mentioning it to the insurance because they will reject claims) and the school recently denied summer school services because he does not qualify (too high functioning) to receive county services other than speech, it bothers me that she is not changing the diagnosis to PDD-NOS. I may fight it on the 21st. It marks progress in my mind, which after all the hard work, we deserve a step above HFA. Actually, I would say he is High Functioning PDD-NOS, because there are different levels of severity in PDD-NOS as well and he is high functioning despite the area in the spectrum where he might fall. Perhaps the original diagnosis in 2005 was incorrect and should have not been HFA. They only gave it to him because he smiled and at times would look at the Drs. in the eyes. But he was sooooo lost and had soooo many sensory problems, that all the therapists that we had at the time mentioned to us that he was more severe than HFA. So one of the two diagnosis is wrong, because I don't understand how after the 180-degree progress he has made in 3 years, he is still in the same bucket.

In my mind, I knew he is PDD-NOS. I mentioned it in one of my blogs a few weeks back. His DAN! thought he was going to get re-diagnosed as Aspergers, but I knew he is not Aspergers. Aspies have different behaviors. They are subject matter experts in a particular topic and speak like professors. Jonathan does not fall in that category. I actually discussed it with the Dr. this morning and after a brief break that we had, she consulted with the other therapist and then told me that he does not qualify for Aspergers for the same reasons I just mentioned above. I have read enough literature to know that he is still in the spectrum and given where he is right now (particularly in speech and some social behaviors), but the improvements or total recovery on the repetitive behaviors, sensory problems and anxieties, that puts him in PDD-NOS. It relieves me that today's Dr. also agrees that PDD-NOS is probably the best diagnosis for him right now (even if she doesn't put it in the report. We'll see)

Somehow, deep inside, I was hoping the diagnosis would change to something that would show significant progress. I need it. But on the other hand, I am happy that Javier came with me and heard from the Dr. that Jonathan is still on the spectrum because he thought (or perhaps hoped) that Jonathan had recovered although I kept telling him that he still needs more work. We have been talking about the types of therapies that I would to do the next year to help Jonathan keep advancing (more auditory processing, neurofeedback, more HBOT, and continued supplements) and Javier kept asking me how much more we have to do because compared to how he used to be, he seems recovered. Javier's biggest worry is our financial situation since all these therapies have been very expensive and we have received very little coverage from our insurance and are in major debt. But today was an eye opener and the bottle of Johny Walker Blue Label will remain closed until we get that letter from Children's Hospital. I need to strategize and I know we will have to make some sacrifices because we cannot continue to do these therapies without a major financial impact. But I want to see him fully recovered. It is my dream and I hope to see it one day. I want my kids to have a normal life, to have friends, do well at school and be happy.

Sunday, August 3, 2008

Busy but Fun Weekend

This weekend we were very busy. Spent all day out. On Saturday, we started by going very early to the shopping mall to get daddy an iPhone. Jonathan loves electronics and he was very excited to help daddy pick out all the accessories. After that, we went to the movies to see Flying to the Moon preview. Vanessa got very bored. But Jonathan loved it and was totally into it. He really liked the astronauts. After the movie was over, we went to eat lunch. Both kids wanted to go to the pool, but since we had just eaten lunch, we first went to Walmart to get the school supplies (that was very stressful - too crowded) and then we headed to the pool. We spent almost 2.5 hours at the pool and the kids loved every minute of it. Here is a 5 minute long video. They are starting to learn how to swim. They want to take lessons, which actually start September 7th.

Today, we had a birthday party at 10am at a moonbounce type place. The kids loved every minute. They played for 1.5 hours (and daddy joined them - I didn't have socks. That is why I didn't join them) and after that, they had pizza and cake. I wasn't too excited about all the gluten he ate, but I don't want to make him feel different since it is not hurting him nearly as much as it used to. Watch a short video below. I am into videos now because the kids love to watch them on TV after we take them. So I am going to start recording more often. After the party, we went to my cousin's house for an early dinner. The kids were very well behaved. I didn't have my camera with me to take pictures there unfortunately.

I am concerned that Jonathan's stools are softer day after day. This week he even had diarrhea and so did Vanessa (sorry to be graphic, but I want to log this because stool analysis is critical to the recovery process. They tell what is going on in the gut which is one of the main areas we target in biomedical interventions). I am going to stop by the Apothecary tomorrow and purchase strong probiotics (VSL #3) and start them on that (1 capsule for Jonathan and 1/2 for Vanessa). I am going to order a comprehensive stool test kit for Jonathan from his DAN! doctor. If Vanessa's stools don't get better (they are green - very strange), I'll ask her pediatrician to do a stool analysis before I order the same one I order for Jonathan.

I re-started Jonathan on DMPS suppositories yesterday (August 2, 2008).

Friday, August 1, 2008

Dancing & Gym Camp Act!

Jonathan that a great week. Another camp (yes, he has attended 5 camps so far). He has adjusted very well to each one and has enjoyed them all. There is 1 more 2-week camp left and then he is not going to any more camps because he is going to be receiving auditory processing therapy for the last 2 weeks in august.

This week the camp was about dancing and gymnastics. They took the kids to a gym every day and showed them new things to do. Jonathan is better at climbing than gymnastic-type activities, but still enjoys them. Today they had an act for the parents to appreciate what they had learned in the week. They had a choreographed dance that they practiced every day and each kid had to show a gym-type move. It was quite entertaining.