Wednesday, June 27, 2007

Some Regression / Good Sign

Jonathan was strange today. He did not feel as energetic, and he had a urine accident during nap time (he never has accidents). He felt nauseous at around 7pm and did a bit of humming. The humming had completely stopped about 2 weeks ago (since the trip to the beach), so it is a sign of regression.

Today is day number 5 of Flagyl. He has shown strange stereotypical behaviors such as moving the head from side to side when talking to people (I mentioned it last time), crying for no real reason, does not respond as quickly or at all at times when we talk to him, and all the characteristics that I just described in the previous paragraph.

Whenever I target an area that Yasko suggests and I see regression, I feel happy. To me, if Yasko already described it in her book it means that the intervention is doing what it is supposed to do instead of harm. It is a bold and rough way to analyze it, but so far it has worked. So I tough it out. We all do. Jonathan was very absent minded today and I can tell that it is a die-off effect. I should have done a charcoal flush, but I am leaving town tomorrow and prefer not to introduce something that my parents might not be able to handle easily.

Other than the behaviors above, he is doing well. He fully transitioned to Group 5 at his daycare and he is getting along very well with the teachers and some of the kids, especially when they play with the computer and Jonathan coaches them. It is quite comical to watch.

We have decided to go with HBOT again. We start back on July 31st for 40 more dives. This is our last opportunity this year given the trailer's schedule. That is why I am trying to address Clostridia as much as possible now before the HBOT start, so HBOT can finish killing it.

We had our monthly parent's group meeting last night and I learned a few things as always. One mom mentioned that she has been giving her son coconut kefir and recently switched to another type, and the kid no longer has clostridia problems. So I am going to give that a try as soon as I finish Flagyl.

His receptive language has made a nice turn. He can now rephrase most of what we tell him, which is a very good way to test his receptive language and broad understanding. He still speaks like "Tarzan" but better and he is continuing to understand certain meanings. Like for instance, we have been working on pronouns. He mastered "I" and "you". But he continues to have trouble with "he" and "she". Today, Vanessa said "she" when referring to grandpa, and Jonathan corrected her and said " no Vanessa. "He" is for boys and "she" is for girls. Abuelito (grandpa) is a boy. "He", you need to say "he"." We were in the car and those words sounded like music to my ears :)

Sunday, June 24, 2007

Started Flagyl to Fight Clostridia

It was a crazy week and I did not have much time to update the Blog. Jonathan had an outstanding week at the daycare. They are transitioning him from Group 4 (3.5 to 4.5 year old kids) to Group 5 (4.5 to 5.5 year old kids). The first attempt last January was a complete disaster. He regressed emotionally and socially. I was a bit scared to make this move, but I made the decision to prepare him for Kindergarden. He will be in a classroom full of 5 year old kids and he needs to be ready. He went twice, and he liked it so much he didn't want to go back to group 4. The ABA therapist told me that he did very well, he did not take offense for kids that ignored him, and he introduced himself to a couple of kids and asked their names and what they were doing. This week he will continue to transition slowly.

On Saturday, Jonathan had a small ceremony at the Gym where he went a couple of days a week since last September. He participated in their preschool program, which was filled with sensory activities plus gymnastics. As I mentioned in the last blog, Jonathan could not climb or jump when he started. Now he got an award for climbing to the top of the net (a really tall one). It was a very nice ceremony. Emotional.


I started giving Jonathan Flagyl antibiotic on Saturday to address the possible Clostridia he might have. I doubled the amount of probiotics and colostrum to make sure that his gut stays in good health.

On Saturday he did well. I did not see much of a change. I did see a bit more strange gestures that I had not seen as much in a long time. He used to move his head to the side whenever he attempted to talk to me when he was little and first diagnosed. That was there for a while and slowly went away. He still does it sometimes, but this weekend it was so frequent that it annoyed me. He moves his head to the side as he tries to make eye contact and then moves it to the other side. It makes him look more autistic than he really is.

Today that head movement was really annoying. And he spent a very long time playing with his PC. He played with Vanessa a bit but not as much as he had been doing in the past 2 weeks. We went to a birthday party and he played a bit in the playground and then stopped. He told me that his tummy hurt. And he ate very very little today (not like him). But he did not have any sensory problems, greeted everyone, didn't mind the crowd, didn't have a sensory overload. That is a good sign that the Clostridia or some other bacteria that is really causing trouble might be dying and the yeast is not growing (yet).

I definitely see behavioral regressions (again, more towards awkward body movements and a bit of aloofness possibly because his tummy bothers him), but he is still very engaged with us and Vanessa and his language is still improving. I am going to be pretty strict and continue this antibiotic until I finish it (10 days) and then continue with a couple of supplements that Yasko suggests for Clostridia.

Tonight he initiated a hide and seek game with Vanessa and came to ask me if I wanted to play with him. We played for a while. He wanted to bathe with Vanessa (he never likes to do that) and they put soap on each others' arms and legs and tummies. And when I took him to bed, he told me that he was scared of monsters, so I closed all the closet doors and told him that this is a good and happy house and monsters don't come to this house. And he stayed in bed peacefully.

Wednesday, June 20, 2007

Data to Compare

Today I met with Jonathan's Gym teacher to go over his progress for the past year, to see where he is at and plan for the future. She gave me a report that was both remarkable and encouraging.
As you can see, his scores are all below the age appropriate results

6 months later, all his scores have doubled and in the case of Motor Behavior (muscle tone type activities) and Perceptual activities, they tripled.
His scores are still not at age appropriate, but the improvement is so dramatic that she views it as no need for more intense one-on-one and recommended several activities for the summer to keep improving his skills in all the areas above. He will be re-evaluated in September when he starts the Gym again. He will be going only on Saturdays due to full-time kindergarden and she did not have a problem with that.

She told me that when Jonathan started in September 2006, he was very slow at every task and his muscle tone was so low, that he could not climb, pull himself up or do many of the physical activities. He progressed, slowly but surely. She then indicated that in November he had a spark of energy and wanted to participate more (that is when I introduced the mytochondrial support - NADH, ATP, Mood D RNA, BH4, SAMe and other herbs). He still had trouble with all the activities, but he seemed a bit more interested. He then had a deep down regression mid December. She had never seen him so uninterested and detached (that was when we started the Strep protocol). Then, all of a sudden he got better in April (mid way into HBOT). And the last week in May she indicated that he changed dramatically. She said that in the past month the improvements have been exponential. He is talking on his own, he does not require prompts to do his tasks or say what he wants, and when he has free time, he now loves to do the gym exercises (climb, jump in the ball pit, run, etc.)

It feels so good and reassuring when other people see the notorious improvement as well.

Areas for Improvement:
  • Social Interaction with other kids his age: He has greatly improved in this area. He needs to have more play dates to learn how to play with kids his age. He also needs to improve on his eye contact. Although he has gotten better, he still has trouble greeting people.
  • Speech and pragmatics: Language has bloomed. Both his expressive and receptive language have improved dramatically over the past month. Lack of language is a consequence of other internal problems. So I am correcting those so his language catches up.
    • Jargon language: almost gone.
  • Humming: minimally. I have heard him hum a couple of times only since last Saturday.
  • Fidgety: He cannot stay still, but he is not hyper. The teacher explained that Jonathan needs extra sensory input that he obtains from moving around to balance his body to be able to regulate himself and absorb input. So the best solution is to engage him in lots of physical activities.
  • Muscle Tone: he is still clumsy. He still needs work in this area.

Jonathan's drawing (trying to draw within the black lines) as of March 2007

Today's drawing. Note how he filled almost all the white space with color and used different colors for each separate section (in this case the continents). He also wrote his name at the bottom of the page very clearly giving good space between letters and keeping almost same size for all letter. Pretty remarkable.

Most Remarkable Drawing today:

Self Portrait as of May 16, 2007. He had been drawing human this way for a while.

Self Portrait today. Note that he added lots of details to this picture, including ears and eye brows, knees and elbows, and even the heart (although in the wrong location, he has an idea that the heart is somewhere in his chest). The teacher was completely blown away today when she saw this drawing.

Excellent progress! Tomorrow I will show some of the biomedical test results. Lost of aluminum dump and his CMV is gone!

Sunday, June 17, 2007

Starting to Express What is in His Mind

We arrived yesterday evening and in the past 2 days I have not taken any pictures, but something strange is happening to Jonathan and I want to make a quick log to be able to go back to my notes.

I am finally starting to learn what is going on in Jonathan's head. Because his expressive language has been so delayed, he in the past was never able to express why he felt happy or sad, or why he wanted something or why he did some strange movement, etc. Everything is a puzzle that we are trying to solve. Some behaviors we are trying to correct without knowing that the kid was doing it for a reason (perhaps) in some cases (not all cases).

A couple of days ago, I was pleasantly surprised when I asked Jonathan a "why" question that he was able to fully answer. He was happy running and playing with the kids. All of a sudden, he stopped, sucked his thumb and lightly touched/rubbed his right ear with the tip of his right hand fingers and after a few seconds he moved his right hand to his left ear and gently rubbed his left ear lobe and repeated the movement again on both ears and stopped, took his thumb out of his mouth and kept playing. That is something that he does often but I never understood why. I asked him and he said that when he touches his ears he feels happier and he feels better. Undoubtedly that is his way of regulating his body when overwhelmed. He doesn't flap anymore, or make strange movements with the palm of his hands anymore when he is overwhelmed. He just touches his ears gently. What a fantastic way to self-regulate. I always thought it was the thumb sucking that regulated him or that he did it because he was bored and didn't know how to play or express himself. But it is the ears. Fascinating.

Yesterday and today Jonathan has completely transformed. All he wants to do is play with Vanessa (and Nico and Christian yesterday during the trip back when we met for lunch and in the morning) and his language is amazing. Truly amazing. And his facial expression changed. He was so excited when Vanessa called him up to show him what she did and very excitedly told Vanessa what a wonderful thing she did. He is talking in full sentences. Something happened. I cannot pinpoint what did it. HBOT, chelation, B12 shots, Yasko, combination of everything. But I wholeheartedly believe that HBOT has been the catalyst. The word combination and sentence construction is still a problem, but he is trying so much to talk and in many many occasions he speaks in full and appropriate sentences, in other occasions he invents words or mismatches tenses and pronouns, but he is no longer feeling overwhelmed by his barriers. He keeps trying until he gets it right or we guess it.

We went out to a computer show and I told him that I would get him a game for the PC and he was so excited. He picked the one he found most interesting (Blue's Clues Kindergarden) and the expression of happiness and the cute little dance that he did when he asked "can I have this one Mom" and I said yes is priceless.

When I took him to bed tonight, he and I had a long conversation about why he doesn't like to go to bed alone (scared in summary) and also that he wanted to be able to see the sun rise through his window. Perhaps he has tried to tell me that in many occasions but he couldn't express himself. Today he expressed himself so well and told me that he wants to see the sun rise on Monday and Tuesday and every day of the month. That is when I realized that he probably wanted that before. I opened the window and told him to lay down and wait and he said "I'm going to wait mommy. I am going to wait for the sun to come out" with the nicest and happiest of smiles I have ever seen in his face.

He has had some detox moments like tonight he started crying because he lightly hit his elbow and told me that he couldn't stop crying and when I asked him why he couldn't stop, he told me "I don't know. I can't stop crying. I need to cry more". It didn't hurt anymore, but he couldn't stop crying. But that detox behavior is completely tolerable given the wonderful improvements that we see every day.

These were just a few samples of what the last 48 hours have been. I need to start taping him again.

Friday, June 15, 2007

Last Day at Myrtle Beach

Unfortunately, today was very cold and cloudy, so we did not go to the beach. But that didn't stop us from having a very nice day.

The kids spent about 45 minutes at the pool. Christian, Nico and Vanessa decided to leave. It was too cold. Jonathan did not want to go, but he left with the crew without much of a complaint. He has really bonded with Christian and Vanessa this trip and imitates Christian a great deal. When they got back to the room, they played for a while as we all were getting dressed to go to the shops.

At the Broadway at the Beach shops, we stopped by a kids' play area. That was awesome. The kids loved all the rides. Jonathan got on every ride. 2 years ago, when we went to Hershey's park, Jonathan did not want to go onto any rides but one. That was another frustrating and traumatizing trip. This time, he was excited about everything. There was one where the kids sat alone in a small car and it would take really sharp curves. The first curve everyone was a bit scared as they didn't know what that was, but after the first one, they all regulated it and they loved it.

We walked around and fed the fish again. Jonathan was very talkative today. We got on a boat that took us to the other side of the shops, and Jonathan was so excited to be on a boat and to see how we went under a bridge and to see the ducks in front of us and yell at them to get out of the way. It was a fun time. When we got to the other side, we got our picture taken by a professional setting with a surfing board and a fake wave. I cannot show it in today's blog because I have to scan it. But I will put it in tomorrow's blog. The kids all cooperated, they all had a great time posing and the pictures came out awesome.

After that, we went to see a 3D movie. Daddy thought that they would not like it because they did not care about the Robinson's 3D movie. But we tried it anyway. I am soooo happy that we did it. We went to see a "Deep Sea" documentary in 3D. Vanessa fell asleep 5 minutes into it, but Jonathan was totally interested. He would not stop asking questions. He wanted to know what every animal was. When he realized that each animal eats another one for survival, he kept asking what the next animal was going to eat before the narrator could tell us. When they showed sharks, he got a bit scared to see them in 3D and told me "I already saw sharks yesterday" and I said "yes at the aquarium" and he said "yes. but mommy, what do sharks eat?". I told him that they ate fish and he put the 3D glasses back on. It was a very wonderful moment for me to spend 45 minutes talking to Jonathan about every animal that was on the movie. I never lost him during that time and he was the one that initiated the questions and comments.

After that, we stopped by to get temporary tattoos and Jonathan got very excited to get one on him. He picked the one that he got (teddy bear with a heart). He was so proud of his tattoo. He got it done without hesitation. No sensory problems.

Jonathan seemed so normal in many occasions during this trip. And like my friend Brooke said, if you didn't know that he had a problem you wouldn't guess until you heard him talk (his voice and tone are still a bit rote and his expressive language sounds like a 2.5 or 3 year old child). But he has been curious, positive, interested, normally bored at times, accepts changes sometimes easier than Vanessa as his receptive language is better than Vanessa's, etc. But he is still obsessed with the GPS device. The moment he sees something that reminds him of a map or a GPS, he uses language that he learned from listening to the GPS, but he is very engaging and gets us very involved. At the resort, he played with his car toys from Disney's Cars movie and guided them as if he were the GPS. So he still has a long way to go to reach the stage of what we consider "neuro-typical", and he may never become 100% "neuro-typical" but he is achieving a higher learning potential. I am more concerned about him being able to fit in our society than his eccentricities. And his behavior this week gives us great hope that he will be able to live with both.

We had a fabulous vacation.

Thursday, June 14, 2007

The Beach: from Love to Hate to Love Again

When Jonathan was 17 months, he loved the water. He loved the pool and we had him in swimming lessons. And he loved the beach. We took him to the beach for a weekend and he really liked going to the ocean (picture on the left), playing with water and the sand. He seemed like a completely normal little kid. When he turned 30 months, he had already changed. Going back, I know that everything started at birth when he go the Hepatitis-B shot, then at 4 months when he got the DPT and 3 other shots the same day, later at 10 months when we got the first flu shot (after pneumonia), then at 13 months with the MMR, making things worse at 18 months with the second flu shot and totally losing him at 27 months with the third flu shot. When we went to the beach in August 2004, he was not interested in anything. He would throw very loud and uncontrollable tantrums all the time for anything. He could not understand spoken language. And he hated the beach. He hated the water, the sand, did not want to take his shoes off, or his shirt. We could not stay more than 30 minutes every day. Actually, that trip to the beach is what opened our eyes. We went with our friends B. and L. (the same folks we are spending the week with at Myrtle Beach) and their 2.5 year old understood spoken language and was excited to go to the beach and explore; whereas Jonathan did not understand more than a few words, and hated the beach (plus many other strange behaviors). 3 days into that trip, I spent a few hours Googling Jonathan's behavior and everything pointed back to Autism.

Jonathan at the beach when we was 30 months old.

Now, 3 years later, I was really scared of this trip. Only 2 months ago Jonathan would have meltdowns if we mentioned going to the pool. His 7 year old friend A. had a pool birthday party and he had a meltdown when we arrived and I had to leave the place with him and his grandmother and left Daddy and Vanessa there for a couple of hours. But his improvements since the HBOT have been so dramatic that I wished for the best. And boy am I glad we came. He has really enjoyed this trip like when he was just 17 months old, he has been excited about the beach, the pool, the aquarium, everything. Both Javier and I have really enjoyed this vacation. He is playing with C., N. and Vanessa like we have always wished he had; he is asking tons of questions; he is absorbing everything he sees; and no major meltdowns; and he is very happy.

Enjoy the pictures from yesterday and today.

June 13 - the water was perfect.

Evening at the Aquarium. He loved watching the sharks and touching the sting rays.

Later we walked around a shopping area outside the Aquarium and the kids enjoyed the dinosaurs and other attractions.

June 14 - the day was colder and windy. We played with sand more.

The kids playing "who is the monster" in the resort before we headed out.

In the evening, we went to walk at the Broadway at the Beach shops and they saw a dragon show. Jonathan liked it very much. He made up a story of how that was the daddy dragon and he was looking for his son. It was pretty comical.

Tuesday, June 12, 2007

He Really is Trying but It is so Hard

Today our friends came over to join us down at Myrtle Beach. Vanessa and Jonathan have been playing all these days quite nicely, but when Nico and Christian showed up today, Jonathan separated himself from the group. He always does that so we were not surprised.

He has been a bit fixated on the GPS, playing with Google Map on my PC and with a Blue's Clues video. His conversation and pretend play are based on those 3 items. But he has been in a great mood and easy to talk to. He will go to every place we mention. He is excited about new places, new experiences. That to me is a great accomplishment. It has made our vacation more enjoyable.

I noticed that this week he has been asking us to repeat questions to him. He never said "what? What Mommy?" so much before, but I had to repeat myself many times before without feedback from him until he did the tasks or answered my questions. So although I know he still has some severe auditory processing issues, at least I know that his input/output mechanism is working better. He is not ignoring our words anymore.

When Nico (3) and Christian (5) came, we went to the pool for a while. Vanessa, Christian and Nico teamed up for everything, and Jonathan was a loaner most of the time. He played with me and Daddy, but really did not want to play with the other 3 kids. After a while, we came back to the apartment, fed the kids and they went out to play. Christian asked Jonathan to go play with him and he went. We were excited to see that. He followed Christian and imitated him in everything he did. They tried to play Basketball with a couple of young kids and then among themselves. After a few minutes, Christian asked him questions that Jonathan could not answer. Jonathan's look in his face implied that he knew the answer and he really wanted to talk, but the words could simply not come out. That depressed me a bit. It is hard to witness that.

Vanessa joined a bit later. Went downstairs with Nico, Christian and Jonathan. Jonathan ran out to the basketball field excited to play ball again and when he turned around, no one followed him. Vanessa looked at Jonathan and at Christian, and even though Christian called her up, she ran out to Jonathan and played with him for a few minutes until he led the way back to join Nico and Christian. That really brought a big nut to my throat.

He really tried to play with the kids for a while today. He tried very hard and I give him enormous credit for that. Perhaps when RDI starts, that will help us teach him how to play better. He got tired and came back to watch TV about 45 minutes later.

We went out to see fireworks and eat ice cream to end a very mellow but nice day.