Our first visit to see the doctor and so very nervous I was ...

     The first visit I took my daughter was the most nerve wrecking day for me, I had a migraine and had so much tension all over my body. It was a 1 hour plus drive for me with Angelina to see the doctor, which was passing Philadelphia. Angelina was not great and had several bad episodes when we went to see the doctor. He was asking me so many questions from the beginning of my pregnancy all the way to the present on how Angelina was. At the same time, I had Angelina scream and cry which made me have a bigger migraine. The doctor told me that it was okay for him to see how she is so he can better evaluate Angelina. 

     The doctor was happy that I already started on giving Angelina no gluten (GF) foods, but told me that I had to start her on casein free food too. In order for Angelina to improve in this type of treatment, she had to eat and drink no gluten and no casein. He put her on supplements that had no dairy and no gluten, he gave me a big red book that had everything on bio medical treatments and information on  Methylcobalamin B12 injections that I would have to inject Angelina every 3rd day (which he called Hopewell pharmacy and had them ship it to me). 

     I left that day with a lot to read and left with a bigger migraine that I came in with. I was happy in a way because the doctor told me his story on how he is a parent as well with twins with autism, how his twins improved throughout the years. He gave me a print out of a newspaper article of his life and how he thanks his wife for following every single treatment with their twins. Angelina's doctor told me that everyone in my household have to adjust to this change in food because one little mistake can alter her treatments. He mentioned how important it was to have support from everyone and especially my husband in this. 

     I had to also little by little remove Angelina's medicine from the neurologist because I was starting on bio medical medicine, which is removing all toxins from Angelina in general. He send Angelina for blood work, in which I decided to take her to St. Luke's Hospital Anderson Campus to get her blood work done there. There was so many blood test that he ordered that the lady from St. Luke's Hospital was shocked to see what her doctor ordered. OMG! The lady asked me which type of doctor is this, I told the lady that this is alternative medicine. I honestly did not care what people think of what I am doing for Angelina, I know that I have her best interest in all this and would never do nothing that would put in risk her health. 

     

     I started Angelina with her treatment two days after, I wanted to be sure to read everything that the doctor gave me. That day Angelina was completely on no gluten and no casein foods, plus she was taking her supplements that the doctor gave her. The doctor gave Angelina a schedule per week what supplements I had to start her on week per week, plus give Angelina the methyl b12 injections every third day (small injection). My older son JP helped me and was very thankful to him. I read in the website of Dr. Neubrander of this cream that I think I would try so I can inject Angelina at night so she would not see it. 

      I started giving Angelina almond milk with no gluten oatmeal for breakfast and a hard boil egg. For dinner, lunch and snacks Angelina would eat her GF pasta with spinach sauce that I make, plus gluten free pizza with GF cupcakes if she wants (apples, pretzel, veggie chips, gluten free peanut butter cookies any day). Angelina doesn't really like drinking almond milk, but I sit down with her until she drinks everything or else I would take away her iPad (which she loves). 

       I was happy the day I discovered tofu ice cream sandwiches for Angelina! WOW! I thought she would not eat them because just reading "Tofu", you would think she would hate them but she loves them. Plus, I discovered gluten free cream cheese that I prepare with her pasta with spinach sauce. Thanks to Rhea that she told me all these new discoveries. 

Enjoying this !!! 

Starting first with no gluten before seeing her DAN! doctor

     Three weeks before Angelina saw the DAN! doctor, I decided to start her on Gluten Free foods. I went to Wegman's website and looked up all the gluten free foods for Angelina. My mom and I threw away all the foods that contained gluten and left the ones that were okay for her to eat. Everyone in the house knew that if they would eat something that contained gluten, that they should eat it outside before entering the house with it. Reading my friends blogs and Facebook post, gave me ideas on what I should buy. I really thought it was going to be difficult buying gluten free (GF) food, but I was wrong. I spend a lot of time going to Wegman's and learning to read all the labels of what to buy and not to buy for the house. 

     

     The only reason why I started Angelina with no gluten (GF) food first, was because I wanted her to transition little by little and not just take everything away all at once. Instead of giving Angelina regular milk, I bought Lactaid milk (I know Lactaid milk has an enzyme that contains lactose). Lactaid milk was just a temporary milk that she would drink before I started her on Almond milk or Coconut milk. I kept all the internet websites on my iPhone on what ingredients contain gluten and what not to buy. WOW! my iPhone was full of these saved internet sites that I would read if in case I saw something I was not sure of. 

     These were some of the no gluten foods that I bought for my daughter Angelina:

• Ancient Harvest Quinoa Pasta (different shapes and sizes)
• Ice cream cones that have no gluten
• Wegmans organic vanilla ice cream (this I knew I had to find a substitute that has no dairy)
• Betty Crocker Gluten free (no gluten) cake mix *chocolate*
• Brown cow vanilla yogurt (which was temporary until I find no dairy yogurt)
• Amy's Pizza rice crust with no gluten and no dairy (frozen)
• Annie's Homegrown cookie bunny 
• Eco-Planet Organics Hot Cereal instant, apple and cinnamon no gluten (GF)
• Wegmans fresh spinach (which of course has no gluten and she loves in her pasta)
• Glutino Pretzel twist, no gluten (any type of pretzel that has no gluten)
• Brown sugar 
• Dietz and Watson hot dogs no gluten (any type of hot dog that says no gluten GF)
• Rice 
• Eggs

     My food list goes on within the days that I learned new things from different people and of course Google....

Bio medical medicine is the way I go !

     My daughter had good days and bad days, but I just felt that there was something else I can do to make them more better than worse. There was one day that Angelina got out of control with hitting and had big meltdowns, that made me evaluate everything that I did so far for my daughter. The medicines that her neurologist from "Children's Hospital of Philadelphia" were not working for her and were making her more aggressive towards everyone and cry for no reason. That week I just sat down in my bedroom and researched for a whole week other types of ways that I would be able to go about with my daughter.

     I went to a website in the internet that was called My Autism Team and spoke to several parents who had children with autism. I received great feedback from them and several parents mentioned to me about bio medical medicine, how it was helping their kids. I knew this was an option I should explore, but I had to further investigate it and talk to other parents to come up with my conclusion whether it was something I should try out with my daughter. I was not born knowing everything, but the only thing that i knew is that I wanted my daughter to get better somehow and I wasn't going to give up on her.

     That is how I researched Dr. Neubrander and how he came up with the Methylcobalamin B12 injections (MB12 injections). I saw his internet website and saw every video that he had, which were the before and after videos of every child with autism. I was surprised of what I saw and of course I knew that not every child reacts the same with the Methyl B12 injections, but I did want to pursue this direction with my daughter. I went again to the internet website "My Autism Team" and spoke to this parent that had gone to a Defeat Autism Now (DAN!) doctor in Newtown Square in Pennsylvania, which she was really happy with him because her child improved a lot. This parent mentioned that she liked this doctor because he was a parent with twins with autism. I knew this doctor was the one I should go with Angelina because he and I shared the same situation "we are parents of an autism child". 
  
      I made Angelina's first appointment with this doctor and was very anxious to see what he would tell me when he meets my daughter, his initial evaluation of Angelina. I told my family about this and had their support on this. I even spoke to my husband over the phone, but he just was not feeling the same as I was about seeing this doctor. I think he was afraid that I would have high hopes of this new treatment with our daughter and then it would turn bad in the end. I knew that this was something that is not approved with medical insurances and of course would have to pay cash to see him, but I just did not care. I absolutely do not see money as an obstacle when it comes to having my daughter be seen by a doctor that might better the way she is now. I had this maternal feeling that I should go all the way with this and hope for the best. 

     I knew that I had to change Angelina's eating habits and that I had to turn her eating to Gluten Free and Casein Free foods. This is a change that I knew would be difficult to begin with because Angelina was used to eating her donuts, cup cakes and drinking her milk. I had to turn to my friend Google and research how I can turn this into something that she would love and not something she would hate. I have to say that I love Facebook because I have my former neighbor who is vegan and just by reading her blogs and read her posts, I was able to come up with a way to turn Angelina's eating habits positive. 

To believe or not to believe, that is the question !

To believe or not to believe

    If you asked me who I put my trust on, I would say in the medical system. I believed in every medical doctor and neurologist that saw my daughter. I am grateful that I reached this far with my daughter, once she was diagnosed with autism I checked every doctor and place that she went and I made sure they had great references.
   
    During that time that my daughter was being evaluated and seen by doctors, I had to convince my husband that it was the best decision to make in going about treatments for Angelina. I had his support, but he was still in that denial stage. I know it was difficult to accept that our daughter had autism, but I was not going to waste time in thinking "why me or why her?". There was things that I did by alone and just did not consult him at all, I felt that I didn't have the need to ask for his approval and as the time goes by I would say something. 

     My daughter improved in many ways during the years, but the only problem with medicines is that once your body is used to the drug, there is a point that it just does not do anything anymore. It is strange how our body works or reacts to medicine over time. 

What is Autism ?

      Many people have different definitions of what autism is and who they are. People think that if their child or teenager is speaking and has done every milestone on time, that they are the ones that don't have autism. That theory or thought is completely wrong, it doesn't work like that. I know several people who talk and are very verbal and have autism or any type of disorder.

       There are different kinds of autism and I browsed thru Web MD website and found this:

• Autistic disorder. This is what most people think of when they hear the word "autism." It refers to problems with social interactions, communication, and imaginative play in children younger than 3 years.

• Asperger's syndrome. These children don't have a problem with language -- in fact, they tend to score in the average or above-average range on intelligence tests. But they have the same social problems and limited scope of interests as children with autistic disorder.

• Pervasive developmental disorder or PDD -- also known as atypical autism. This is a kind of catch-all category for children who have some autistic behaviors but who don't fit into other categories.

• Rett syndrome. Known to occur mainly in girls, children with Rett syndrome start developing normally but begin to lose their communication and social skills. Beginning at the age of 1 to 4 years, repetitive hand movements replace purposeful use of the hands.

• Childhood disintegrative disorder. These children develop normally for at least two years and then lose some or most of their communication and social skills. This is an extremely rare disorder and its existence as a separate condition is a matter of debate among many mental health professionals.

     According to "Autism Speaks" website this is what I found that I would love to share with everyone on the statistics in people with autism in present time:

• Autism now affects 1 in 88 children and 1 in 54 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs a family $60,000 a year on average
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism

    Autism is something that is affecting a lot of families everywhere. There is no scientific reason why it is happening, but there are several theories to why. 



Learning the Basics and a New Start

      I took my daughter to "KidsPeace" for their own evaluation in which their psychiatrist asked me a lot of questions from the beginning of my pregnancy all the way to the present. OMG! It feels like you have to repeat your life to someone over and over again, but it didn't matter to me as long as I get help for my daughter. After almost two hour long session with them I had to wait 30 days until Angelina's services were approved and from there she would start with a behavioral therapist in our home. I was so anxious and nervous that I wanted it to go by quick. I had my cellular phone next to me all the time waiting for an update. Believe me those days pass so fast that you will not even feel it go by.

     At the same time, I had an appointment with "GoodShepherd" with a developmental pediatrician. Starting off with "Center City Pediatrics" as my guide on how I can go about services for my daughter was great, but waiting for that appointment in "GoodShepherd" was worth waiting for. Angelina saw Dr. Iyengar and she is an awesome developmental pediatrician ! Dr. Iyengar went over with me a long check-list with things that I had to do and what other type of therapists I had to schedule appointments with. The doctor recommended my daughter to see a speech therapist and an occupational therapist, but there was another waiting list to see a therapist in Good Shepherd. In the meantime I found availability in Lehigh Valley Muhlenberg Hospital until I got that call from "GoodShepherd".

     Dr. Iyengar wrote a script for a complete blood test of almost everything on my daughter, it was a general genetics blood test to rule out other stuff. These type of blood tests take a long time to get the results back, it was more than 5 weeks for the test results. I had to make an appointment with a genetics doctor in "Children's Hospital in Philadelphia" and get additional feedback from them as well. Angelina and I had appointments every week with someone or somewhere, I was driving long distances all the time. I learned a lot from the genetics doctor and it was a relief too because there wasn't additional things we had to worry about.

     My daughter's developmental pediatrician scheduled a 2-3 hour exam in "GoodShepherd", it's called an ADOS Exam which is short for "The Autism Diagnostic Observation Schedule". For a definition of what it means you can click here . I had to sit next to my daughter and could not say a word the whole time during the exam, as much as I wanted to give her the answer I couldn't. When the exam was done, I had to take my daughter outside with my grandmother and had to go in without her so she can go over the results in detail. My daughter was diagnosed with autism in which she was classified in the higher level. She can retake the exam again, but it was advised for us to wait a while and see if she has progressed. Us as parents have to understand that this exam is not a pass or fail test, it just helps us know it what level of autism our child is so when she does get the services of behavioral therapy, speech therapy and occupational therapy they can know what to work with her on more or less. From the range of 0 being nothing and 25 being the highest, Angelina was scored 16. 

     After several days pass by she was approved for services with "KidsPeace" and had therapy at home 5 days a week almost half the day. The other half of the day she had speech therapy and occupational therapy some where else, my daughter was a busy person for several months and years. Then came the time when Angelina reached grade school age and then I had an interview or I would say "another evaluation" for her to receive special services during school hours as well. Once she entered kindergarten, I had to discontinue speech therapy and O.T. therapy in "GoodShepherd" because there was not enough time or hours in the day for her to fit all this. Wow!! Angelina instead received Speech and O.T. in the school and still continued with her behavioral therapy at home.

     There is so much to learn that I am still learning until this present day, we learn something new as the days go by. It makes us stronger parents and know that no matter what we have to absorb, we have to continue and never give up. Autism is not a disease and there is no magical cure for it. Believe me when I say that after a long fight we do see results over time and know that we are doing something right for our kids. There were days my daughter would throw herself in the floor, cry so much or even hit others for no reason, but we just have to have patience. I remember until now that one day I was leaving "GoodShepherd" with my daughter and all of a sudden she was in the floor and cried for no reason, I didn't know what to do and was lost in words. I remember there was this lady that was leaving with her son who was a patient there as well and she told me "believe me things will get better with your daughter" and she told me briefly that she went through the same thing with her son when he was my daughter's age. I still remember this because now I really understand that things do get better over time....

Having another set of eyes

     Before Angelina turned 4 years old, we changed three different pre-schools because her teachers would say she was not focused in the classroom. My daughters speech changed dramatically and the little words that she knew to say, it was completely gone. I thought that her trip to South America had affected her speech in some way, but that was not the cause. It was so frustrating that nobody would point out to me that she might have autism. Not one pre-school could of said "I think she should be evaluated for autism". I was getting upset by everyone saying that because we were a Spanish speaking home, that was the cause of her speech delay. I knew she had to see her pediatrician ASAP once her speech went back to almost zero.

     I took her to "ABW Pediatrics" in Bethlehem, Pennsylvania and I just went off on her doctor & demanded some sort of answer. He observed her in the room and tried to talk to Angelina, but she would not respond back to him nor did she looked straight at his eyes. Her pediatrician told me that one of the signs of autism is lack of eye contact and the loss of speech. He tried to explain to me that as much as he is her pediatrician, Angelina would have to also see a "Developmental Pediatrician" as well.

     The second I went home, I went to Google and was able to get some definitions for every medical term he tried to explain to me. I guess I lost focus right after I heard him mention the word 'autism' and my daughter together in one sentence. I tried to call and search for a "Developmental Pediatrician" in the Lehigh Valley and found out that Good Shepherd has developmental doctors. Unfortunately, I called them and their waiting list was almost a year long which made me more anxious. What I did learn is that even though you are in a long waiting list, still put your name on it because it can always be sooner rather than later in that year wait.

     I was and am an impatient mother and even though I am in a waiting list for one doctor, it will not stop me from finding other doctors out of my area temporarily. My radius extended all the way to Philadelphia, Pennsylvania and went to Center City Pediatrics  which I got an appointment to see Dr. Berger in 4 days. When I scheduled the appointment I explained to the receptionist over the phone that I wanted to evaluate my daughter for autism, it helps when you explain to them because they can schedule it with the doctor and another specialized person who is also in charge to see if she has autism.

     Sometimes parents are in denial and decide to cover things like a band aide, it doesn't make us bad parents by doing that. It just makes us parents who worry about hearing a possible truth, it can be very difficult, but we have to take the next step in order to help our kids in their future.

     When I took my daughter for her appointment in Philadelphia, we were there for a long time and they observed her and asked all kinds of questions. Both doctors were very patient with my daughter and even though it took more than an hour of talk and evaluation, they were able to give me an answer. I knew it was autism, but sometimes you need a specialist to tell you those words "I am sorry to tell you, but your daughter has autism" those precise words can make any parent want to cry.

     Right away the doctor was able to give me prescriptions and explained the following steps that I would have to take in order to help my daughter. I am thankful to them because they guided me in what direction I should take with Angelina. Dr. Berger explained that there is a window in ever child with autism and I have to get her the services soon before it closes; in plain English this means that in order to help my child I didn't have enough time. I had to find someone ASAP to start the ball rolling.

     I was given a prescription for speech therapy, occupational therapy, physical therapy and behavioral therapy. WOW! so much therapies that I knew she was going to be a busy child and I was going to be a busy mom trying to make appointments, believe me it was very difficult and not easy to find something fast.

     Out of all the appointments that I had made for my daughter, finding a behavioral therapist was the most difficult one of all. I called several places and most were not accepting new patients and other were a year wait or more. They asked me several questions and one of them were my availability and I just told them anytime. A Behavioral Therapist comes to your home and helps your child with their speech and basically helping them go out in the outside world. It's a very long process and it is not a quick fix to any type of problem.

     I finally received the call from Kids Peace and "GoodShepherd" to see their developmental doctor.