Sunday, June 22, 2014

Third Appointment with Dr. Sultan

What improvement do we have seen? 
We have seen Tommy with more energy, reported by grandparents and swimming instructor. My husband and I have noticed that he is becoming to notice things around his environment, like the light switches when is dark as well as following better directions in English and Spanish. He is verbally communicating more with me than before. He has requested drink, snack and eat. Yesterday, he came to the pantry and told me 'Chips' when I was looking for something to give them for snack. Good eye contact! He had a period of time were he avoided eye contact, so this has been a battle. And it was more noticeable when he met estrangers. This is something I can say completely overcome.  It  was hard to keep him on a task because he had the flight or fight reaction. It has improved a lot in just one month on the treatment. Big punch to Autism, Yahoooooo!

Medical Intervention:
  • Big Cells:  I had put 7 shots to Tommy already of Vitamin B12. We will have to do it for 2 more months. 
  • Candida: We are treating Candida with anti-fungus, No yeast and No sugar diet. Getting food for his new diet has become easy Now that big retailer stores like Walmart has expanded their selection of organic food. We still need a few stuff from Whole food, but not as much as before because we can find them mostly at the groceries stores near by. 
  • Low Iron: Tommy is taking Ferrous Sulfate Iron, which is used to treat or prevent low iron in the blood. This form of iron is better absorbed. So we started him on this new iron supplement Thursday May 29. 
  • Thyroid and high cholesterol: I took Tommy's tempeture for 5 days and his temperature is very low.
Second stage of the Medical Treatment:
The main concern right now is Tommy's Thyroid. Dr. Sultan think is not working properly even when he is taken synthetic thyroid. Tommy's temperature is way too low from the normal range, which is a strong indication his medication is not working as it should. There is also another indication, Tommy has lost 5 pounds too quick. His appetite hasn't changed, so we know there is something wrong. So Dr. Sultan has ordered more testing for the thyroid and not just the common tests our current ENT always orders. So depending on the test results, we will stop working with our current ENT. Since the first appointment, he was very persistent that the thyroid could be one of the big issues in his Autism diagnosis. Thyroid is also a big issue in kids with Down syndrome, so I am just glad Dr. Sultan has been very proactive in this matter. Dr. Sultan also ordered a complete panel of liver function, which it has made me  a little nervous  because liver dysfunction is a big issue for kids with AUTISM as well for kids with DOWN SYNDROME as a single diagnosis. So I don't know if for having two coexisting conditions could affect Tommy's liver even more than kids with a single diagnosis. So I am praying if there is something wrong that it can easily be treated.

THE SKY IS THE LIMIT!
Please send your prayers in Tommy's way.

Monday, June 2, 2014

Tommy's treatments

I wish I could be a stay home mom, so I can have time to get everything that needs to get done with the boys, Tommy's interventions, paper work, the house, etc. Howsoever, I am very HAPPY because things are just getting better and better for Tommy and I am very proud of how much I have accomplished in this tree years of Tommy's Autism diagnosis. I am getting him out of isolation!

Tommy's Interventions

First Stage of Medical Intervention:

  • Big Cells:  I searched online about the big cells and the B12 injections correct this issue, so it is a relief that this can be fixed with the proper treatment. I already got Tommy his first shot, it was very easy and didn't give to much thought, I just did it. He even didn't feel pain because Dr. Sultan prescribed a cream to numb the area and I waited until Tommy fall asleep. So he doesn't know he got a shot last night.
  • Candida: He is already in the medicine that will kill this fungus that it is cousing the problems in his stomach and some of the Autism symptoms. He will be on this medicine for a month. Tommy is already in the No yeast and No sugar diet to get back the candidada bacteria on balance. I will be cooking on the weekends, so I can have time during the week to get done everything in Tommy's intervension. Now, cooking for him has became more challanging because I will have to do my own dressing as well as watching for his cholesterol. Thanks to God that he made Tommy a good eater! So not problem in the change of food.
  • Low Iron: Tommy is taking Ferrous Sulfate Iron, which is used to treat or prevent low iron in the blood. This form of iron is better absorbed. So we started him on this new iron supplement Thursday May 29. 
  • Thyroid and high cholesterol: I have to star collecting data of Tommy's tempeture and I will fax it as soon as we complete the 5 days. So Dr. Sultan will let us know the next step on the treatment for his thyroid. I am trying to watch for food that contains cholesterol and avoid it or decrease its consumption. So we got wild cought salmon and Organic chichen with 98% fat for Tommy.
  • Multivitamin: Tommy started his new vitamin, ASD-Plex Thursday May 29. I noticed that this vitamin doesn't include Vitamin A. Kids with Down syndrome need high amounts of vitamin A. So before asking to Dr. Sultan, I revised the treatment plan. So I found in the treatment plan that Dr. Sultan will address specific vitamins separetely, including VITAMIN A. This is the reason I like this doctor, we talk the same language regardless our strong acents. He always has the answers before I make the questions. Tommy doesn't like his new vitamin, so it is a challenging to give him the vitamin, so I will make smoothies to mix the vitamin, it has work well before.
Dr.Sultan's plan is to balance Tommy's entire body system because this is how the body functions. So I have a few things I will include about underline causes of illnesses in Down syndrome.

Neuro-developmental Program 
Tommy has a new evaluation on May 30, and his Neurodevelopmentalist was impressed on his progress, specially that he is getting out of isolation.
  • She noticed Tommy's looks of my attention and keep a good eye contact
  • Repetitive behaviors are decreasing. She noticed he is not flapping his hands, I still see it, but I realized on Friday that it has decreased a lot and it is consistent with what My mother-in-law commented to us last weekend. 
  • She was please with Tommy's academic progress in just a year in the program. 
  • In our next goals is to improve playing independently with toys. Tommy had play skills closer to his age, but everything was gone when Autism stroked him. So in my search, I have found that video modeling works really good for kids with Autism, so I got a Teach2Talk DVD Play series. Tommy has been watching the video over the weekend, and then, I transferred what he watched in the video to his environment and it was a success. He began to play with a puzzle almost independently! 
  • Tommy's visual scanning has also improved. It was very bad!
Linda Kane is our neuro-developmenatlist who had a child with Down syndrome. This is one of the reasons I like to work with her. She understand for what we are going through as a family. She  developed a new Individulizzed Neurodevelopmental plan on the weekend, but I haven't been able to go through the entire plan yet, but I will do it this week because I have to get new materials to work on the new goals every time we have a revaluation.

Mendability (Neuroscience)
It is truly helping in strengthening Tommy's brain because I am witness how he is better processing and how it regulating better sounds and having better transitions by targeting his brain rather than targeting a specific skill. I have increasing resting time as well as the touch-and-smell root activity. I am pushing my self every day to get the time to complete at least one of the branch activities session. I am working on sensory enriching the house. I got the bathroom and Tommy truly likes it because it is very calming for him due to the textures and colors. When I finish redecorating the house based on sensory enrichment, I will post the photos. 

Swimming Lessons
Tommy has also showed improvement in the pool. He is working on learning back stroke swimming style. It is hard for him due to his upper body is the area more affected by the hypotonia, but he is working on it. I am also very curious how his medical intervention will help to strength his body, which may result in a better performance at the pool. Why do I say this? Because hypotonia can also be treated through nutritional intervention, but I didn't know this until I began my journey with Autism.

Craneosacral Therapy
We have increased craneosacral therapy. We have been doing it for a little over a year. And I just recently watch a webinar in the Autism Research Institute where a doctor explains the benefits of this therapy for Autism.

I am glad I have put in place all the interventions that I have been planning. Working with a schedule and a routine is helping me a lot to get though everything needs to get done every day. A structure routine has allowed me to work on communication routine with Tommy and it is helping to bring those words he can perfectly say out his mouth. I will post when I have time about communication routines, so it may help other parents with their non-verbal children. We are very bless all these interventions are available for Tommy.

THE SKY IS THE LIMIT!
KEEP SENDING YOUR PRAYERS IN TOMMY'S WAY!