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.

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!

Dr. Michael Merzenich: Neurological Corrections for language impartement

Dr. Michael Merzenich is one of my favorite neuroscientist. He is one of the most prominent scientist in the world who works with neuro-plasticity, which allows the brain to get stronger and heal. He believe that neurological corrections can be done in individuals with language impairment. He mentions something interesting in the video, "CONTRIVED ENVIRONMENT," which means modeling situations to train the brain to get stronger in the weak area. Which I think, this is the main reason many interventions are focusing in training parents/family because they spend more time with the child so the child's natural environment can become in contrived environment to get the brain stronger. After my self-education in neuroscience, I have discovered that there is so much hope for our kids; therefore, what parents with kids with different abilities need is money to pay for the right intervention for their kids with the top ranking specialists.  I wish I could have the money to hire Dr. Michael Merzenich to work with my boy! 

Second Appoitment with Dr. Sultan

Tommy had his second appointment with Dr. Sultan yesterday. We went over the test results and as I was expecting it, many things are wrong. Irinicly, I don't feel sad about it. I am happy because I knew Tommy has some issues and I knew what the issues were, but I didn't have a doctor who would listen or with the expertise in this matter.

Test Results

The lab shows that Tommy has extremely big cells for his age. This an indication that there is a problem in Tommy's methalytion cycle, which affects his MITOCHONDRIA. So my search for a doctor has ended. I knew Tommy has issues with the mitochondria and I brought it up to his peidatrician. The pediatritian told me he doesn't have it because Tommy is not a child that gets sick quiet often. Which surprised me that the pediatrician didn't know the difference between Mitochondrial disease and Mitrochrondial dysfuntion. I was talking about Mitochondria dysfuntion, but the pediatrician kept focused on Mitochondrial disease. But she encouraged me to follow my institns and get a speciallist's openion in this matter. So the next steps is Vitamin B12 shots twice a week, so I am trying to pick what days would be better. I secretly gave oral vitamin B12 to Tommy since December to April and the difference was very noticible. So I just want to start these shots to see what surprises will come with it.

Tommy has low iron levels. He was surprised that it wasn't lower. So I explained to him that we are supplementing with Iron because I requested labs at Children's hospital when Tommy began to regress. So he said this is the reasson his level wasn't even lower. So he changed Tommy's iron for one that it is given to toddlers and the best of all, it is cheaper than the one I was giving him. 

Tommy has candida, a nasty fungus. So he will be taken a medicine for at least 6 months and then Dr. Sultan will see if he needs to take it for a longer period of time. He said that kids with Autism has a lot of issues with candida and takes a lot of time to get this fungus on balance.

I will have to get data for 5 days about Tommy's themperture because Dr. Sultan will do more testing about Tommy's thyroid funtion. We already know Tommy's have hypothyroidism, but Dr. Sultan thinks that something is not working fine in Tommy's thyroid even when he is taking his medication, which I think he is right because Tommy also has high cholestherol even when he doesn't eat bad fat and I am very extrict with his diet. So there is connection between thyroid dysfuntion and high choletherol. It can be genetic coming form my side. This is an issue my mom, my dad, my sister and I have. I just recently discover that Tommy's hands were cold and it was a hot day. This called my attention becuase I was like that when I was a child and I had wierd fevers. These are symptoms of something is going wrong with the thyroid. So I will be checking my thyroid, too. Dr. Sultan said that regardless that it is genetic, it should be treated now before it becomes in a real problem. I LOVE THIS DOCTOR! I wanted to hug him yesterday.

Changes on Diet & Supplementation

I knew this will come. I even posted about my hard feeling that this doctor would do drastic changes in Tommy's diet. Tommy's diet is going to be even more restricted, so from now on, absolubley every food and every drink will have to be provided for us whereever he goes, which I am use to it, but the drinks it was something we always could get in public places, but not anymore.

• No chocolate
• No yeast (No vinager or salad dressings)
• No sugar at all. Except for some stevia. 
• No oats
• Everything organic 
• Water. 22 oz. per day is the ideal for my son

Why, No all these foods?

Chocolate because it raises the same brain chemicals (neurotransmitters) that some drugs do. We don't want this because Tommy is already having neurotransmitter issues. I recently discoverd that some food such as, bananas and berries increase dopamine, which is not good for the brain when it has high levels of dopamine. We removed bananas and strawberries, I have noticed an improvement in his behaviors. So I am expecting more food to be removed when we get to part of the neurotransmitter treatment that we will target his brain inflamation.

No Sugar and no Yeast because they feed the yeast in Tommy's stomach. Candida causes many of the Autism symptoms and it is really hard to get it back on balance.  

No oats becaue many oats  are processed in facilities that process wheat, so they get contaminated. There are many kids with Autism who has showed sensitivity to oats when they have gluten intolerance regardless that the oats are gluten-free. So the best way, it is to avoid it.

Everything organic because Dr. Sultan suspects Tommy has high levels of haevy metals. This won't add more contaminants in his system. We do mostly orgnic with him, but not everything. So we will know more about the heavy meatls in Tommy's body in the future when get to this stage of the treatment. 

A lot of water which is important for natural detoxification. We are doing it already, so I am offering water to Tommy quiet often, rather than give him a lot of water at once.

Dr. Sultan also changed my son's vitamins to one that it is specific for kids with Autism. I showed to him the jar of the vitamin powder we use, which is specifically for kids with Down syndrome. He checked the ingridients and said that some ingrediets are missing and the dossage was too low for what my son's need because kids with Autims need higher amounts of vitamins. The best of all this new vitamin cost half of the price of what I pay for the vitamins for kids with Down syndrome. But the most important fact is that the Autism vitamin is hypoallergenic. What many people don't know is that food intolerance is "a type of allergy" that kills slowly.

God is listening to my prayers! I have never asked him for a miracle, I just ask for wisdom and the right people who will help me to unlock my son’s true potential. Thanks God that I found this doctor.  

Tommy is scaping from the Autism Jail

Woww! God is using me to witness his wonders. Tommy just came to me with his arms extended and told me: "Mommy come here" and hugged me. My son was born with Down syndrome, but it is not what is holding him back. What I just witness is a very typical behavior of some kids with Autism, they don't talk and suddenly something makes a connection and they open up. Autism keeps Tommy prisoner, but I won't stop until I get him free. He is starting to scape from the Autism Jail!

My 2 year old helping to get lunch ready

I want the best for my boys like any parent and 

The best way I can do for them is to nurture their curiosity.

Enjoy the video of my 2 year old helping to get the lunch ready today. 

The knife Francis is using is from the Curious Chef 3-Piece Nylon Knife Set, 

which has been designed for little hands.

Tommy's isolation and withdraw from this world (Part 3)

After being in charge for 5 months of my son's intervention things are getting better. I feel bad sometimes that I couldn't put my intervention together earlier, but I guess things happen when they have to happen and not when we want to.

We went to Tommy's school on May 15 becuase of his Kindergarten graduation. Everytime I go there, it is noticible the friendly atmosphere in the entire school. When we were walking to the event room, we saw two kids in the hallway. When the girl passed by, she said  "Hi" to us with a big welcoming smile like she knew us from before; then, a 10 year old boy greeted us and began to talk to Francis and asked how old Francis was, and then, he said he has 4 year old bother and he is very proud of his little brother. This a very welcoming school community from the little ones to the grown ups. I am glad that they deeply focus in the STOP BULLING program where everybody participates: staff, students from Kindergarten to Senior High school and even parents. I had to take a test about stop bulling when I volunteer for the school. The school truly care for the students's growth in all aspects, which is probably the main reason why they keep being among the top three best school district in our state.

During the informal Kindergarten Graduation, I could see how much Tommy has progressed, and it seems that school is making more sense for him. His sensory issues are improving! But still there is a lot to do in the tactile and auditory area. He was able to be in the crowd, so he didn't have a panic attack. This doesn't mean that it didn't bather him, but he could handle it better, which made me feel good. How did I know he was bather even when he didn't panic? Because of his body language (repetitive behaviors). He celebrated with his classmates at the playground by being one more of the 27 kindergartners who where actively playing. He was jumping, running and climbing as the other kids. Last year, being at the playground with other kids it was a torture for him. It was interesting to see a girl coming towards Tommy and asked him for a hug, and she said to me: He likes me sometimes! And gave Tommy a tight hug and Tommy hugged her, too.

Watch the video below. You can see Tommy running; then, watch the kids that are on the ground. They quickly comforted their classmate who felt. None of the grown ups realized, including me, as quick as the kids did that the girl felt and they looked for help. Tommy's teacher told me that her students are always watching for Tommy and this have make a positive impact in all of them to be more caring for others and I could see it that day.

I could see during Tommy's graduation that my hard work to get him out of isolation is giving results. I have taken a diffrent route of what most parents due as far as intervensions, but I have done it based on sciencist research and educating my self on technicques from different approaches that suit Tommy's unique needs. AUTISM IS TREATABLE! One of my main sources for self education is Autism Reaserch Institute because they have decades working on understanding and treating Autism. I am realistic that Tommy may not completely overcome Autism due to his genetic disorder, but the possibility is there. Probably he will be one of the firsts children with Down syndrome medically diagnosed with Autism who will overcome Autism with data to proof it. Remember, I have a superboy! He already overcame his 'Asthma' diagnosis in 9 months, so nothing is written on stone.

My little caterpillar will become in a beautiful butterfly that will fly up, up, and away one day.

Faith, Courage and Hope is all what it takes 

to conquer the impossibles.  

THE SKY IS THE LIMIT!

When God Made Special Need Mothers he added a few extra ingredients! | Parenting Special Needs Magazine

When God Made Special Need Mothers he added a few extra ingredients! | Parenting Special Needs Magazine



Click on the link above. This is the best description of Mothers of children with special needs that I have read. It is to the reality we face everyday. I like this a lot, Specially the extra set of eyes!



Happy Mother's Day!