A Bit of Regression

Jonathan is definitely a kid that needs supplements to maintain a higher level of functionality. I have been a bit lazy the past few weeks and have not been good about giving him his supplements.  In addition, I tried going to a new nutritionist that told me that all the supplements I was giving were not good and made me change what I was giving Jonathan, but I don't that her new approach works for us.  So he has been missing the multi-vitamins and other pills I used to give him.

This week he has been very absent-minded and his dad even got very upset with him on Friday as he could not follow directions at all.  Daddy asked me to please give him his pills again because the difference is so noticeable that it is actually frustrating.

Celebrating that Daddy Finished his Master's

Daddy finished his last class of his master's degree yesterday after 2.5 years of taking classes in the evening.  So we decided to go to a restaurant today to celebrate.  We went to a japanese restaurant.  We had taken Jonathan to this restaurant before and he had always been very affraid of the fire the chefs make when cooking at our table. But tonight he was really excited.  He couldn't wait. He loved the wonton soup. I was shocked.  And when the chef came, he engaged with him from the beginning.  If only had he been a bit less loud, it would have been perfect.  He cannot regulate his tone of voice very well. He kept asking the chef what he was doing, he loved the fire and asked for more and he was very happy.

Summer and Fall 2010 Recap

Sorry that I have been absent for so long.  It turns out that I got sick.  I had been suffering from intense stomach pain for quite some time and on July 26 I was diagnosed with Gastritis and Barrett's Esophagus (a pre-cancerous condition), which forced me to take a break from Jonathan's recovery and focus on mine.

After 4 months of changing my diet, adding a lot of supplements, medication, exercise, etc., the second endoscopy does not show traces of Barrett's.  It is strange as this is a non-reversible disease.  So I don't know if one the lab gave a false positive result or if what I had was so microscopic that all the aggressive interventions helped my body regenerate.  In any case, I feel better, healthier and I want to go back to Jonathan.  With my new lifestyle, I should be okay.  They will do another endoscopy on 2 years.  However, I do feel a side effect of the acid-reflux medicine.  I feel more depressed than normal. I don't normally suffer from depression, so I am concerned about this because it is interfering with my daily tasks.  But after researching I believe that malnutrition that can come from these medications can lower serotonin and dopamine levels.  I checked with my nutritionist and she gave a few supplements to take to help me with these.  We'll see.

With regards to Jonathan, not much has changed since July.  Jonathan had a nice summer break.  He attended various summer camps with his sister and learned a lot of new things. He is now in 3rd grade. He is back to the private school he attended last year.  He is doing very well academically, but he is having some social issues with some of the kids there.  He is now fairly conversational and he tells me about it.  He is unhappy because he gets annoyed and either gets pushed around or yelled at or he does it to the kid that is annoying him.  It is a lose-lose situation.  I speak to him every night and he cries sometimes because he feels that he cannot control his emotions sometimes.  He also has accidents and hits other kids by mistake and those kids get very upset with him and either yell at him or call him names.  And he is really bad about defending himself, so he screams back and cries.  This recovery mountain never ends!

To summarize the last few months:

• CHELATION: Jonathan completed 67 cycles of DMSA/ALA and finished on 7/19/2010.  The dose was 45mg of each chelator every 3 hours for a total of 22 times between Friday afternoons and Monday mornings.  For 1.5 years, we didn't sleep more than 3 hours straight hours every weekend.  That was rough but necessary.
• NUTRITION: I found a new nutritionist who did a new hair analysis and told me that his copper was extremely high.  Apparently copper can be the reason for him walking around.  Although he is not hyperactive, he cannot stop moving or walking in circles at times and she indicated that that is the copper. The best way to get rid of it is by adding zinc and eliminating fructose. The latter has been extremely hard.  Everything has fructose.
• NEUROFEEDBACK: He started neurofeedback again late August.  He has completed 22 sessions and on session 20, the Dr. did another TOVA test.  She indicated that he no longer has any traces of ADD/ADHD per TOVA.  But there is still a gap of more than 5 points between the 4 indicators, so she recommends that we keep going. It is just really expensive and we are running low in our savings.  So I am going to finish the next 20 and take a break.

	4/11/2008	3/14/2009	11/20/2010
Response Time Variability	88	86	95
Response Time	106	78	87
Impulsivity	87	113	107
Inattention	90	90	102
Difference b/t lowest and highest	19	35	20

Normal range is 85 to 115. Scores above 115 are better than average, and scores below 85 are less than average.

• SUPPLEMENTS:  I removed a number of supplements that Yasko recommended per the nutritionists recommendation. But she wanted me to change his diet, add different foods, remove other foods and start giving him green grass mixed up with chocolate milk.  Needless to say that given my condition, I didn't do that.  And I believe that the lack of some of the multivitamins I was giving him is causing his serotonin and dopamine levels to drop. In addition, his mood is very volatile.  He cries a lot for very small reasons.  I am confused about what to do here.  I don't have time or energy for what is needed with regards to the nutritional changes.  I need to figure this one out soon.

I will start logging if not daily, at a minimum twice a week as I am seeing some subtle changes and school related issues that I want to track.  In addition, we have not visited his DAN! Dr. in a while. I am going to make an appointment soon as I feel I need to go back to what I had been doing all these years. We are very close and I got side-tracked.

Wants to Be Tech Support - 66 DMSA/ALA Rounds

Jonathan finished his school 2 1/2 weeks ago.  He already started summer camp and has had 2 sessions.  Vanessa just finished kindergarten and is old enough to start going to the same summer camp as Jonathan and they are very excited to be together.  They fight ALL THE TIME, but they love being together.

Summer Camp

The first week, Jonathan and Vanessa went to a Farm camp.  They both loved it.  However, I got concerned when on day 4 I asked Jonathan how he was doing and he told me that there was a kid in camp that was hitting him all the time.  I told him that he had to report it.  His dad told him to hit him back next time.  On the last day I asked him how the kid behaved and he told me that the kid did not bother him so he didn't have the opportunity to report him.  However, both dad and I are concerned that Jonathan is too nice and does not know how to defend himself.  It is hard to teach that.

The second week, summer camp was at their tae kwon do place.  They loved it and got along with everyone.  Today, during their TKD class, his teacher told me that she was shocked about his interaction with the team. He normally is very quiet during class, but during camp he was extroverted and funny and was great during a pretend drama game.  She told me that they had spoken among the teachers about how smart Jonathan is and that I should look into putting him in drama school because he was great.  I started talking about his strength and physical weakness and told her that I was very proud of Jonathan for making it to bo-black belt but I didn't think he was ready for black belt yet due to his poor coordination and low muscle tone.  Although she agreed with my assessment, she looked at me like there was something she didn't know.  Noticing her reaction asked if the previous Master (who had left 7 months ago due to a broken foot) had told her about Jonathan's condition. She said no.  When I told her that he has autism, she was on denial.  She kept telling me "no way, impossible".  She said that the previous master had told her about 3 other kids, but never mentioned Jonathan and she is glad that he didn't because she treated him as any other kid, pushed him like she pushed the other kids and didn't make any exceptions with him.  So he is where he is because he deserves it, not because he has a disability.  She told me that she agreed on the black belt, just didn't want to tell me yet and told me she will work with him so he can take and pass his test next May.  I will work with him also on physical strength and coordination.

He wants to be Technical Support when he grows up

Jonathan is turning into a techy guru.  He learned how to configure all his toys (i.e., DSi and iTouch) to connect to a wifi network whenever he can.  We went to a restaurant 2 weeks ago that had free wifi, but his DSi did not see the broadcasted name. He took his grandpa iPhone, looked inside the settings, and figured out what IP address the iPhone was connected to, typed in that IP address into his DSi network settings and got Internet access.  My jaw was down on the floor.  I told his dad that we need to be careful because right now it is cute, but when he is 15 years old, if he does something illegal, we are going to have the FEDs knocking on our doors.  3 weeks ago a friend of mine asked me during a birthday pary if I could help her with her iPhone problems and I told her that I had no idea but if she asked  Jonathan, he could help her.  And not only did he fix her iPhone issues, but gave her an explaination of what happened and told her to call him any time she needed help.  Added him in her contact's (including a picture of him) and then came to me and told me that he wanted to be in the Apple technical support group when he grow up.  The kid is so smart it is crazy.

4 days ago, his iTouch's speakers stopped working.  He told his dad to schedule an appointment with Apple tech support.  We went yesterday and he told me that he wanted to be the one to explain the problem and talk to the technician.  And he did.  The lady technician was very pleasant and worked with Jonathan.  I was so proud.  It was wonderful to see him so "independent".  He got his iTouch replaced and was very happy.

He decided over a month ago that when he grows up, he is going to be an Apple Technical Support technician.  I told him that that was fine, but before that, he needs to finish college.  He agreed.  I am planting my tiny seeds right now before he starts thinking too much about grown-up careers.

Observations

I met with his school teacher a week before the school finished.  They had great things to say about him.  Academically he is very strong and passed to 3rd grade with no issues.  But they also had some concerns which I want to log so I can reference down the road.  In addition, I have been analyzing him lately and comparing him to how he was 6 months, 1 and 2 years ago, and a couple of improvements are actually quite dramatic.  I take it for granted, but he has had a great year.

Improvements:

• Expressive language: Jonathan is pretty conversational when he knows the topic or is interested in learning something.  Since I first met his DAN! Dr. in November 2004, my number one concern was Jonathan's expressive language.  We have worked very hard during the passed 6 years in this area.  Now, I can have a normal conversation with my son about stuff I want to communicate with him or if he wants to communicate with me.  His comprehension and vocabulary have improved dramatically.  A friend of ours with a child on the spectrum told me last week that she also noticed it right away.  She had not seen him in over 2 month, and even since then he has improved.  For me, what I see as a major improvement is how much he now understands, rather than how much he speaks.  We are not done here because his vocabulary and topics are still very narrow (i.e., technology), but he can now talk my ear off and at times I have found myself asking him to be quite.  Something that I never thought before I would ever do.  I am trying to expose him to many experiences so he can learn from them and relate them to other things in the future.  His brain is like a sponge now, and I am taking advantage of it.  Also, his intonation is has improved dramatically.  He still has a bit of a flow issue when he speaks.  Twice already he has been told that he speaks funny (although I don't know if it is because of his flow/intonation or his narrow topics of interests).

Issues to continue to address:

• Offensive behavior when frustrated: Jonathan tends to get frustrated easily.  At school, he is verbally mean to his classmates when he gets frustrated.  He is even hurtful without knowing.  When his teachers tell him, he get very sensitive and sad that he did such thing. However, while he is reacting, he cannot seem to be able to control it.  His school director mentioned that she was going to record him and play it back to him so we could see.  They didn't have enough time before school ended, so I am going to try to do that myself during the summer.  He needs to learn how to channel his emotions so he can express his frustration in a more civilized way.
• Low coordination / muscle tone: Jonathan still has trouble controlling his body correctly.  His dad and I noticed yesterday that he is clumsy completing all personal hygiene chores such as brushing teeth, cleaning when going to the bathroom, bathing (shampoo, soap, etc.), or other tasks such as cutting his food, riding a bike, sparring at tae kwon do, chewing with his mouth close, etc.  I am perplexed and do not know what therapy would be best.  We stopped OT due to insurance issues and have been on a waiting list for 2 years.  Time to call them back.
• Language: although he has improved dramatically, this still is a huge reason why he is still on the spectrum.  Both expressive and receptive.
• Tone: he still screams when he speaks.  He has trouble controlling this.
• Limited interests: I already documented this in another blog back in January.  Although he is more social, his limited interests for only technology stuff is causing a problem when he is with other kids his age.  He copes, but it is hard.

Nutrition Is Our Next Step

For the longest time, I have been battling with Jonathan's health and developmental delays.  I concentrated for the past 6 years on biomedical and physical interventions, but I have neglected the nutrition part.  I put him on a gluten free dairy free diet (GF/CF) for 3 years, then took him off and recently put him back on it.  However, I never paid close attention to what he was getting in his body.  The work surrounding getting therapies in line, the GF/CF diet, the supplements and other interventions has been so overwhelming that I didn't focus on a "nutritious" diet.  I saw a nutritionist at the beginning of this journey, but she focused only on supplements.  So quality of food has never been my forte.

However, this stress is paying its toll on me.  I feel sick and tired all the time.  So in trying to find a way to get my stomach and overall body in better shape, I ran it some interesting people who have opened my eyes to another dimension.

I knew that Cod Liver Oil was very good for the kids.  The brain is fat and needs fat to operate optimally.  I also knew that EPA was important for inflammation and I have been giving Jonathan those from different manufacturers for a number of years. What I didn't know was that the best type is the fermented type.  I recently ordered a new CLO from Green Pastures.  Jonathan likes it and Vanessa hates it.  But I was told it is the best quality out there.

We have been battling Jonathan's weight for years.  He is not obese, but he is heavy for his age (90 lbs).  And I believe that he gets tired so quickly because he is heavy.  I was convinced it is a thyroid problem.  However, after seeing this chiropractor/nutritionist, I am not so convinced anymore.  He may be suffering from a bit of Adrenal Fatigue, which causes his thyroid to act up.  Or it could be something else.

I scheduled an appointment with this doctor last week, and we talked about a plan.  First, they are going to do a hair analysis on both Jonathan and me.  We went yesterday and they took the sample.  After we get the results (3 weeks), we are going to make an appointment to review the results along with the intake forms.  We need to provide a Candida self-test result as well as a diet diary log that documents what we eat during 1 week. 

I am excited and concerned at the same time.  They are probably going to tell me that he has to give up all flours (including the gluten free ones) and I don't know how I am going to do that :)  But I am willing to try things that are reasonable.  I am giving them the benefit of the doubt because they come highly recommended by another Mom I know, and during my first office visit, I mentioned that I don't have a gallbladder and I was told to take Cholacol II (1 pill 15 minutes before each meal).  It has turned out to be miraculous for my digestion issues.  I am sure I have other issues to attack, but not feeling sick and bloated after eating is pretty priceless.

Putting Things in Perspective

I spend the evenings with the kids, fixing dinner, going to Tae Kwon Do (on Mondays), bathing, sometimes doing homework, sometimes out shopping.  We spend the weekends together going to places, parties, movies, parks, etc. These past 2 weeks, I have been paying more attention to how Jonathan interacts with others, how he talks to others and me, etc.  And I have to say that I give thanks to God because he is a very engaging kid, with a strong personality, intelligent and sweet.  We argue and after a bit I actually laugh internally thinking that I am happy I am arguing with my son.  Today for instance, we were in the car coming back from Tae Kwon Do, and I heard him playing with his DS. We told him no DS during the week, but he sneaks it from time to time.  I told him "Jonathan, please turn off your DS".  After a very brief pause, he said "no DS for the rest of the day?" and I said "that's right.  You know we don't want you to play with electronics until the weekends".  He pauses and says "ok mom, what about I play with it until we get home and then I turn it off?"  Clever I thought, but I didn't want him to win this, so I said "if you do that, I won't pay you for today's homework".  He said "Oh no mom, here, it is off".  I pay him $2 a day if he completes his homework before I get home. This interaction was not there last year.  He speaks more fluently.  But he still has a strange tone, and he doesn't have a large variety of topics to discuss.  So that prevents him from fitting in with other kids his age. 

So if I have to put things in perspective, he is not regressing to where he was before.  But because of his limitations, his social skills are not developing as fast as he is growing and I can't help but feel worried that he is going to suffer in life because people are cruel.  The other physical regressions are starting to settle a bit.  I started him back on the homeopathic drops and he is not scratching his throat as much anymore.  I heard him humming today, but it has actually gotten better.  He is more alert, perhaps because of the gluten free diet.  So I see a bit of progress.

Dilemma: He is not severe enough to be in the world of autism alone, and he is not fully recovered to be in the mainstreamed world alone.  Therefore, he is the middle which is starting to make things hard for him.  He is starting to get teased and he gets very offended.  He is very sensitive.  I want to protect him, but there is so much I can do.  I talk to him and tell him to defend himself, but defending from being teased is hard to teach, if not impossible.  It should be an innate reaction, a "reflex" which he might be lacking or having trouble using.  But understanding what the core issues are helps me focus on what I need to seek to help me improve.

Unexplicable Regression

The past month has been very frustrating as Jonathan started to progressively regress socially and in some aspects physically.  I don't know what it is.  But today I felt really bad because during shower time he told me that some kids in McDonald's made fun of his speech.  They told him that he speaks funny and laughed at him and he asked me if that was true.  I told him no, but the truth is that he does speak differently.

I have not been as aggressive in the past year as I was before and I am afraid that he has plateaued and in some cases regressed.  I am desperate again, looking for other things to do, reading books again, thinking about attending conferences.  I am desperate.  As he is growing, the things that I was scared of are starting to take place.  How do I protect him from what his future is going to be?  A future where mainstreamed kids, teenagers and young adults won't be able to realize that he has an issue and instead are going to make his life miserable as they make fun of him and reject him.  How do I make things a bit better so his future is not so painful? 

I watched "The Horse Boy" the other night and all of a sudden I realized that one of the things I should be doing with Jonathan is taking him to new places that force him to pay attention, learn, survive and mature.  It is hard for me being a full-time professional.  But I am going to try to find the time, at least during the weekends, to go to new adventures.  It would be great to go to a place like Mongolia for a month where the environment is completely foreign, where the food has different good and bad bacteria to populate the digestive system and add to the immune system, but we cannot afford it (time and money-wise).  Therefore, I need to find my own ways.

Regressions observed:

• Stims: he is humming again.  After all these months (about 6 I think) the humming is back.
• Tics: he is scratching his throat again.  I thought it was the gluten, but he is doing it (not as often as before) even when he eats gluten free foods.  The homeopathic drops are not working as they did in the past. Perhaps they worked in combination with a different supplement, but I don't know which one.
• Attention issues / distractions: he is totally distracted.  This is one of the worse issues we are dealing with.  I have been telling him for over a month, every day, to put his backpack in the back of the laundry room when he gets home from school, but it does not stick.  I have to tell him twice or three times everything.  It seems like he is not listening at times.  I thought it was the gluten, but even with gluten free diet, this is still very evident.
• Gluten issues: I noticed how he went from a semi-alert kid to totally drugged and in a fog in minutes after eating 2 small slices of pizza.  It was scary to watch.  I put him on the gluten free diet and told him what that was so he helps me stay on it.
• Weight issues: he is 93 lbs and he is 8.  There is something very wrong.  He eats lots of carbs, but in my mind not enough to be so heavy.  Especially with all the exercise he gets at school (he is going to a private school that focuses on movement before each lesson) and tae kwon do 3 times a week.  I removed most of the high carbs from his diet (sugars and breads) and I hope that in 3 months he loses at least 10 lbs.  I am also investigating a potential pituitary or thyroid problem with an endocrinologist.  I need to call tomorrow and set the appointment.
• Sensory issues: he is lately overly sensitive to clothes tags and foods textures.
• OCD: this is just never going away. I am frustrated about it.  He has absolutely no interest in anything other than his electronic toys. I want to burn them all.
• Social skills: he is not fitting in with mainstream kids anymore.  He is having a very hard time playing with our friends' kids.  The last two times, they ran away from him and he came to me crying telling me that they ran away purposely. That they told him they didn't want to play with him.  He is actually quite social and cares about what others think of him.  He is simply different and the other kids are now starting to reject him. It breaks my heart.
• Cannot control emotions well:  he cries for everything instead of coming to us to talk about what he is not happy with. He also tends to boss around and even yell at people but when people respond back, he acts as if he is scared that we are going to beat him up and then cries to a point that is hard to console.

I decided to go see another DAN! Dr. to help me diagnose issues that I can work on.  I need time and money to run all the tests again and figure out what is going on.  Perhaps some other bug got into his body.  It could be a huge yeast overgrowth coupled with bacteria and other issues.  I am venting.  But I need to let all this out of my chest.  I need time and money.

It Seems Like So Long Ago

I was reading old emails and came across one from the National Autism Association promoting a new plan for assistance, research and education support.  They had a very pretty video (Chase the Hope for Autism) and in it, I saw Jonathan's little face shown for just 1 second. That was very unexpected. It made my heart jump.  I had sent the NAA a picture of Jonathan covering his ears 3+ years ago which made it to one of their calendars.  Back then, his autism was very evident. He covered his ears ALL THE TIME when he was anxious or when the sounds were too loud for him to bear. Almost 4 years later, all I have is this picture and tons of memories. But I don't remember the last time he covered his ears. It was a while ago. Which shows how much progress has made.  He was 4 in this picture.  He is about to turn 8 soon, and about 85% recovered.  More research is needed.  Recovery is possible.

9 months - 42 rounds of DMSA/ALA

It has been a very long time since I last wrote. I had mixed feelings about what to post since I was not seeing a lot of progress. But since October, I can see that I have seen enough improvements to post another log.

Jonathan started a new private school last September. They focus on tons of moments before each academic class, they do additional therapies like speech, tomatis, brain exercises, OT, etc., and they do fun things like Tae Kwon Do, swimming, fun social science classes, etc. Jonathan really loves it there. I can see that it has been a very good experience for him with regards to this academics, his vocabulary, his exposure to different hands-on activities, and the love he receives is priceless. He adores his teachers.

With regards to his eccentricities, Jonathan's humming is completely gone. I don't know when it happened, but I noticed 2 days ago that he stopped humming a while ago. He started singing a song in the car and I almost said "no humming" as I normally do since he as 3 years old, and suddenly I noticed that he was not humming. I turned and asked him "when did you stop humming?" and he looked right into my eyes and said "I don't know". It was kind of strange.

Same with the scratch in his throat - which seemed like a tic in his brain. I posted last time that the homeopathic drops that I started him on late summer had stopped the scratch. And since then, he probably has scratched his throat 3 times in the last 4 months.

The items I am very concerned about are his social skills, processing, attention and language.

• Social: Jonathan is actually a very social kid. He loves to be with people, interact with them and play. The problem is that his interests are not of a typical 7 year old and hence he doesn't fit in with other kids and sometimes with adults. He gets bullied a lot when around kids that are not into technology like he is. But his interests are more than just video games, he is into emails, contacts and different applications and how the work. So it creates a challenge and frustration because he feels left out. He is a very sensitive kid. After a lot of frustration on our part (his dad and me), and talking to his doctor, we came to terms with the fact that Jonathan needs a different social setting to succeed. His doctor said to me "Forget about the word autism because that is not the problem here. The problem is that he is a very left-brain child and needs to socialize with kids like him - kids that like technology and that he can relate to. Not with with disabilities, but kids with the same interests. He will not be the kid to play with action figures and dinosaurs, so find the right setting for him and he will thrive." He is obsessive compulsive when it comes to electronics, but he uses them to interact and it is easier for him to be part of a social group under those conditions than with kids that play Batman and Spiderman. So we are on a quest to finding groups where he will be happy.
  
  
• Processing: This is definitely the biggest of all his problems. It is at a minimum auditory and visual. It is also executive functioning, which plays a huge role in his attention problems. Sometimes he does not understand what he hears, or he does not see stuff in front of him. Sometimes he cannot express his thoughts verbally. I have noticed that he can express himself better when he writes an email or a letter than when he talks to us. He has made huge progress on this area. But it is still an issue. Perhaps one that will follow him the rest of his life and he will need to learn how to live with it and adapt his life accordingly.
  
  
• Attention: he does not have the typical ADD symptoms, but he has attention problems that prevent him from comprehending books when reading, or understanding conversations. He can remember things that other kids with ADD cannot remember, but when he sits down to read a fantasy story, he cannot follow up well. Before the page is over, he already forgot the topic. I am working with him, but this is a hard one. If he is interested in the topic, he remembers it well.
  
  
• Language: his receptive language continues to improve. He has little problem understanding a question or short conversation as long as he understands all the words. Long conversations are a bit more challenging when the vocabulary and situation is more complex unless it relates to technology or science. Expressive language is still an issue. I want to have his verbal IQ retested again this August to see if it has gone up from 82. His intonation is much better. He does not sound like a robot anymore. But he needs to improve a bit because he has trouble pronouncing some of the words. His tone (volume-wise) is better. He still has a high volume tone when he speaks, but better than 6 months ago.
  

DAN! Dr Visit

We had a meeting with his DAN! doctor on Tuesday. It went really well and was refreshing. We did some blood work before the visit and the results were provided to me during the visit. His liver functions are a bit high but the Dr. believes it is because he is growing. But what caught my attention was that his TSH (thyroid function) is normal high and he wants to look into this. He gave me a prescription drug (very low dosage) to lower this value and that might help him lose some weight (he is 20 lbs overweight for his age - 89 lbs and he is 7, almost 8), and it might help with his energy level (he is a bit lazy when doing things but mitochondrial disorder has been ruled out). I am going to schedule a meeting with pediatrician to do more thyroid and other glands tests.