I am a parent of a child with Autism 

I have a daughter who has autism; it's difficult because for years I blamed myself for her diagnosis and thought I did something wrong. Going to therapy I have learned that it's not my fault and have to let go of that blame that I have. 

I have done the impossible to go in Autism mom chat groups and talk to her teachers and now she is finally starting her 2nd session of private speech therapy weekly. I'm gluten - free with her and refuse to medicate my child. I take her to the chiropractic weekly and always keep communication via phone and email with her school and attend all her meetings. What my daughter was before she has changed a lot and is not as worse as before when she first had her diagnosis of autism (ASD).

With her gluten Free I make sure there is no contamination with the foods we eat and I read all labels and several websites on what contains gluten. I give her Omega capsules and vitamin D plus multivitamins that are gluten Free and buy them from her biomedical doctor. I'm trying as a parent to be the best I can be for my child and of course take care of my other child who is okay and talks too much . 

All I wish is for her words to come out more and for her to express herself more. I know there is no cure but I just baby steps then we will see how it goes. 

My worry is that she won't be able to express herself and half a life on her own later on. I want to improve and I'm doing the best I can . These vitamins and thins are costly but money will never be a issue for my child . I also give her probiotic that are expensive but the best. 

She is going to be 12 years old soon and I just know she can and I believe she can more with this private speech therapy plus school and plus summer school they have for autism kids here. 

Any moms that have ideas or stuff that they want to share are welcomed to let me know and I am a person that is not a doctor but can share my experience with my child. I did cut dairy from her and no sweets or sugar stuff . 

I will share more in the days . 

Almost first week on her biomedical treatments

I totally refuse to listen to the school or any hospital to tell me that my daughter needs to be on medication. It works in the beginning, but then it has bad side effects and makes her autism worse and it makes me as a mom question : Why did I do this to my child?

I have started on giving her the vitamins from her DAN doctor and mb12 injections; it is a lot to give her but they are good for her and I totally stopped temporarly the apple juice and no junk food. I am 80 percent dairy free but I am getting there.

It has been difficult for my child because she is the one that has this diagnosis, but then again it has been difficult and tough on me that I am her mother and it makes me sad and have a lot of anxiety watching my daughter struggle.

She is calm now and it has been like 4 days with this, I see her less stressed and very calm which is great for me. I did take her yesterday to the chiropractic to have her adjusted which I am going to be taking her 3 times per week after I finish working.

Let's see how the week goes with my daughter and my goal is not perfection but just better. 

 

Updates, probiotics and info on gluten on lipsticks...

 

It has been a long time since I haven't posted any blogs on my daughter's progress. Angelina continues on "Gluten-Free" diet and with her Methyl B12 injections given every 2 days in her buttocks. Last week, we went with my daughter to her biomedical doctor Dr. Patrick Elliott in Philadelphia. I was so glad to hear from him that he has seen so much progress from my daughter and he asked me several questions (kind of a test but knowledge check in his part), it came out that my daughter's autism has reduced significantly. I know there is no cure for autism, which I am aware of and this is not a disease in no way or shape.

 

What the doctor did "ADD" for her to take was VSL #3 Probiotic vitamins (that have to be refrigerated all the time), which are natural and gluten-free. Of course she continues with her Methyl B12 injections every 2 days, before it was every 3 days but now he wanted to increase the intake.

 

 

My daughter is not celiac in any way, but has extreme gluten sensitivity when she consumes gluten in any way. We all learned it here the good and bad way and even her school is aware of it. What I love about the schools are that if you do make them aware of their allergy to gluten, they can provide gluten-free lunch (you do have to provide a doctor's note when you do this).

 

There are a lot of gluten-free products everywhere now which make life easier for me and everyone who is allergic or celiac. When we go outside I am not that worried if it will be uncomfortable to hide things from her. I do wish a lot of other places do include gluten-free food, I guess it is still a work in progress throughout the years.

 

I am not going to lie, until now I still read labels and have my bookmarks from websites to help me. What I did actually discover from my neighbor is that there are a lot of lipstick products that contain "Gluten" and that was shocking because it adds more to my list now.

 

http://celiacdisease.about.com/od/GlutenFreePersonalCareProducts/fl/Gluten-Free-Makeup-Brands.htm

 

I have included above a website on information on gluten-free lipsticks.

 

I also am including below a website that talks about Probiotics as well.

 

http://www.autism-help.org/intervention-biomedical-probiotic.htm

 

This week I will be blogging more. I know that everything that I am doing with my daughter, there is no evidence that it helps her autism but so far it has helped me as a parent and that I am happy and glad so I just go for it and continue. 

"The Happiest Day of a Mom..."

 

 

 

What it Means to be a Mom with a "Special Needs" daughter...

 

 

     Since my daughter was diagnosed with autism several years ago, I went through several stages "denial, sadness and then action mode". My daughter Angelina has autism and I know it and accept it, but then again I felt that I had to try several things to help my daughter. As you can read my previous posts I tried several things, but in the end I tried "alternative medicine". I believe in my heart that it was the best decision I ever made with Angelina. It is not something that "medical insurance" covers, so I actually have to spend out of pocket but it was so worth it for me because my daughter has progressed so much. I am not saying that she is 100% perfectly fine, because there is never a 100% in life. If you see my daughter now and compare how it was before, I can honestly say that to me it is a major difference.

 

      Angelina is being treated with "Alternative Medicine", in which she is completely "Gluten-Free", also accompanying her "Applied Behavior Analysis Therapy" (ABA Therapy), in addition to private speech therapy outside and speech therapy and occupational therapy in school too. A lot of people and things play a factor for my daughter progressing, but ever since she has been "Gluten-Free" her behavior has changed and so many things have changed with her. With her "Alternative Medicine Doctor" as many call "DAN Doctor", I am also giving her vitamins too.

 

      Saying all this is what I am going through with my daughter and I know it is a step by step process. But, today when I got home I went to my bedroom and my daughter Angelina left in my pillow an envelope she made that said "Angelina" with a heart in the middle and "Mommy", if you see the picture she drew a yellow ribbon in the middle and looks like a present. When I opened it, she had another paper folded inside with a picture of SpongeBob and all the cartoon characters.

 

      Seeing this made me laugh with a big smile in my face and so proud as a mother. So proud because I can see that my daughter is progressing so much and that is something that makes my day and world to see. Now Angelina even asks me to read to her bedtime stories, which in the end she read and I help her with some words she doesn't understand. "She Can Read"!!! That makes me so happy because even though it is a day by day process with Angelina, I can say I feel so proud to see her make all these positive things. It just makes me so proud and so happy, it completes my world. I love all my three children the same, but I express my happiness with Angelina because she is a child with "Autism", and just watching her progress makes me so happy. It is the same happiness if I see any of my two boys Jean-Pierre and Philippe, do in their every day progresses in school or life. 









Biomedical Test Results for Angelina that I received Today ...

Microscope versus Parents with a Child with Autism are the same...But why?

 



      That question has been asked in several ways or forms to me, but in a different type of sentence of course. Like I mentioned in my previous post, I am not a doctor nor have a medical diploma, but feel like I should. I have researched since the beginning about biomedical medicine and everything. I have asked her doctors for advice before I started this with my daughter and didn't get no answers. I was told my daughter had to go see a psychiatrist and maybe be put on more medicine and I just was not happy with that answer. That is why I decided to go this path with her. Biomedical medicine might not work for everyone depending on their condition or diagnosis, but I am willing to try and see what happens. You can never say "of course it will work", but you can at least try it and not say later on "what if I tried it? what could of happened?" That is my thinking and probably not everyone would think the same as me. "Well getting to the point of my blog"....  

 

       I went to my daughter's blood results follow-up appointment alone because I wanted to not have Angelina with me and be able to absorb all the test results and fully understand what is my daughter's next step for treatment. I knew that I was not going to expect good news, but I had my Starbuck's skim latte to help me deal with this shocking news (hey I have to have some sarcasm in all this). Of course, everything that I was informed today is not  medically proven to be the cause for autism, but if you these results in every autistic child.. you kind of get the "idea?" .. why are these results so high and not normal with my child? These treatments are biomedical medicine and it is very upsetting why it has not been proven medically or at least somewhat proven. Angelina's DAN! doctor gave me all her tests results and she has extreme high levels of immunization and a lot of red flags everywhere. I also did the "nagalase blood test" for her that were send to Europe to be checked & they were not normal as well.

 

       Starting tomorrow, my daughter is starting with IV infusion of GcMAF treatments once a week which is given over 20 weeks total. I researched the doctor who made this medicine and saw his blog and website or the results of several parents and they were positive. Of course I am my daughter will be taking the IV medicine in her DAN! doctors office which I will be going to Philadelphia every week for 5 months, but I do not mind because it is about my daughter well being and progress. I am very positive about this treatment and hopeful that everything will turn out good, I researched about this medicine and there is no side effects .. the only thing that can happen is that she will be very "happy and giggle" which have no problem with that if it occurs. I will post her progress and see how it goes.

 

Website of Dr. Jeffrey Bradstreet GcMAF shots

Happy Tuesday everybody and enjoy the last weeks of summer ! Lol 

 

 





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.