We all have heard by now that Sarah Palin has a child with down syndrome. The question is, if McCain is elected how will this effect families of children with autism? Obviously we would have a more sympathetic voice in Washington. As her child would grow during her Vice Presidency, she would be learning about the huge expense that comes with raising a special needs child. That I am sure will benefit us.

My real question though, where would she stand on vaccinations? I know that she has supported the Flu shot

NOW, THEREFORE, I, Sarah Palin Governor of the State of Alaska, do hereby proclaim November 2007 – March 2008 as:

Influenza Vaccination Awareness Season
in Alaska, and encourage all Alaskans to get a flu vaccination to protect themselves, their families, and their communities.

Does that really mean anything though? That was before she had a special needs child, and if you are reading my blog I am sure you know how that changes everything. Also, has the issue of vaccinations causing autism actually been presented to her?

In the autism community we basically have 2 sides, those who believe autism is linked to mercury poisoning and those who don’t. Which side do you think Sarah Palin will fall into?

 Subscribe to Waking Sophie via RSS

Or, subscribe via email:

 

A Week of Diarrhea, great title for a blog post huh?

Sophie started Gentamycin with vancomycin a week and a half ago. Within a few days she began having horrible diarrhea. We tried decreasing the frequency to no avail and we finally dropped the medicine a few days ago. I actually dropped all of her medicine and I am only giving her vitamins and lots of probiotics.

Wednesday she had blood in her stool. It was probably 1/2 teaspoon. My husband was gone with our only car so I could not run to the ER. I called him instead to come home and called the doctor on call at the clinic where our DAN practices. The doctor called me back within a few minutes, right as my husband was pulling up with our car. This doctor had called the DAN to confir with her. My DAN advised that she had seen this quite often and if it wasn’t a huge quantity, or continuing, that I probably didn’t need to panic. Of course I already had panicked, but these words were soothing. I did not take her to the ER and she only had a little blood in the next diaper and none after that.

After studying on the internet, I found that gentamycin is known to cause bloody stool. The thing that a doctor would worry about would be the development of clostridia, but with the vancomycin on board that isn’t an issue.

This week has been really rough. She developed big raw and bleeding sores on her bottom, I have changed runny diapers every half and hour at some times and I have scrubbed carpets for hours this week. I will have to call in the pros for my carpets. Today if Sophie is still having problems I will be calling in the pros for her too.

My husband was part of a mass lay off of his company, so our insurance ends tomorrow. He will be competing with at least 100 other people laid off from his work with similar skills for jobs. I am so glad I have God who provides.

For this Wednesday, I thought I would do something a little different. I have found many sites that post autism recovery stories so instead of posting one this week, I thought I would post links to the pages that have inspired me. Here are pages and pages of hope: http://featuresblogs.chicagotribune.com/features_julieshealthclub/autism_recovery_stories/index.html

http://www.generationrescue.org/testimonials.php

http://www.gfcfdiet.com/Successstories.htm

http://www.autismrecoveryvideos.org/

http://www.danasview.net/recover.htm

If you have a recovery story that you would like to share, please email me sarah at wakingsophie.com

With every child being different, it is hard to say where to start with supplementation. So lets break it down a bit. There are 3 goals involved in giving supplements, to improve general health, to treat issues and to treat the underlying problems. In this series we will look at these goals, one at a time. This post will deal with general health and obtaining nutrients.

One of, if not the, greatest obstacles to most children with autism’s health is the inability to properly digest food to obtain the nutrients. To answer this problem there are a few options. One is to introduce enzymes to break down the foods, another is to give foods that are easier to digest and another strategy is to supplement the vitamins and minerals they are not getting. The most successful approach seems to be to do all three.

So which Enzymes?

I personally like Houston enzymes. I give Sophie TriEnza which is a mix of the 3 main enzymes offered by the company. One enzyme takes care of the proteins for gluten and casein, one that helps with phenols and also breaks down the hard shell of yeast making it easier to kill and one that takes care of everything else. There are plenty of other brands of enzymes people have success with. Some children will not be able to tolerate trienza so you can try the 3 enzymes from houston seperately or try a different brand. Enzyme Stuff has great info.

I personally know a woman whose child was showing autistic symptoms, not officially diagnosed, but all of the symptoms stopped after beginning houston enzymes. She now has a totally neurotypical child.

That doesn’t heal your child, proceed to step 2

Diet

The gluten free/casein free(gf/cf) diet has caused many miraculous recovery stories. You can read some of these stories here http://www.gfcfdiet.com/Successstories.htm. Many people end up avoiding many other foods because they also cause problems for their child. The yahoo group GFCF Kids. Provides wonderful support of the diet and all other issues of biomedical treatment.

Supplementing for health

A good multivitamin, especially one designed specifically for children with autism, is a great way to help support a child’s nutritional needs. Kirkman’s labs has a very popular multi called Super Nu Thera. Super Nu Thera is formulated with very high amount of vitamin B and magnesium which enhances the effects of b vitamins. It was made for children with autism by request of the Autism Research Institute in the late 60’s.

Another popular multivitamin is made by Brain Child Nutritionals. I do not have personal experience with their products, but have heard good things. Another option is Juice Plus. This was to me by our DAN doctor.

One issue many parents experience is children with autism often have problems tolerating many different foods, vitamins, supplements and minerals. Many children will not be able to handle multivitamins. This was the case with Sophie. As an alternative, I had to buy vitamins and minerals separately and give them one at a time to make sure she could tolerate them.

When she didn’t tolerate something, the reaction would be huge melt downs. She would cry an yell and be extremely emotional. It sounds a little like die off from yeast or bacteria, but if you experience both with your child you will be able to tell the difference. This is more extreme then die off.

Buy everything in trial size or ask for free samples from the companies. If you have to go the route I did with trying one vitamin at a time, look at the ingredients of a multi and use it as a list of things to try.

One more quick note, B vitamins have been known to make children hyper, sometimes no phenol enzymes will help with that.

Now that I have all that out of the way I will start discussing the other supplements that are recommended for children with autism one at a time in this series, Supplements for Autism.

How many times will I have to ask this?

Yesterday was day three of diarrhea. I know this is caused by the 2 new medicines I have just added which are gentamycin and vancomycin. I have also, under my DAN’s advice started giving amphotericin twice a day instead of once. The question is, is this good or bad? After a couple of years of constant constipation, at least it is different.

Of course diarrhea is uncomfortable for my poor baby, and I am not thrilled with all of the cleaning it is leaving me, but is this helpful for her? I called her doctor yesterday to confirm what I am thinking. There are 2 possibilities either this is die off and her body is cleaning out her system from all of this constipation, or she is getting too much medicine and we need to lower the amount. There is really no way to know except to wait and see.

Sophia also developed a rash on her bottom last night. This could also be a good sign. I will keep you all posted.

“Story about My Son Christopher / from Kenneth De Lashmutt

Born October 9, 2001

Christopher was progressing as a normal baby until his first vaccinations.

After his first vaccination he screamed for 12 hours and had a 104 degree fever nearly the entire time. Then he started regressing with developmental delays such as absence of attachment behaviors, speech delay and hyperactivity. As he grew older (2 years old) he started head-banging, hand flapping, unresponsiveness to calling his name, impulsivity, and self biting, and became almost silent and frustrated because he could not communicate. We started searching for answers and after reading about the symptoms and decided that he had some aspects of autism spectrum disorder.

October 27, 2004

We had a psychological, educational, social assessment, speech and language assessment evaluation done by the public school system and we started him in special education pre-school program, where speech therapy and occupational therapy services were provided for him.

December 2004 (entered special education program)

The special-education teachers complained about the head banging and absence of attachment behaviors and were afraid he would hurt himself and said if these conditions do not improve he will have to be removed from the program.

May 11, 2005

IEP; Delays in auditory comprehension and use of language. Needs to improve his skills for approaching learning tasks/activities. Needs to improve his early-literacy skills in areas of fine motor-manipulation and writing.

November 2006 (started Lifewave patches)

I started using the patches in November of 2006 and I applied them once or twice a week. I started seeing results immediately. He became more responsive, reduced head banging and self biting, started expressing his needs, began repetition of words or phrases just spoken by others.

February 2007

Neuropsychological Study http://lifewave-autism.com/neuro_report.pdf

May 2, 2007

Pre-school teacher stated “I believe that part of Christopher’s regression and subsequent autism was the result of receiving vaccines.”

June 2007

IEP; He has improved so much over the last school year that at the last IEP meeting all IEP members recommended that he attend mixed kindergarten class where normal children and mixed with special needs children. He can carry on intelligent conversations no head banging or self biting

Over the summer I increased the usage of the patches to three or four times a week. And the results are very clear. The new kindergarten teacher said that three other adults in the school have commented that they can’t believe that Christopher is the same boy that they knew last spring. He is much calmer, stands in line orderly and quietly, enters the classroom and socializes with other students, begins writing tasks as required.

Christopher’s Dad

Kenneth M. DeLashmutt

You can also hear another success story on the NON profit site where they can listen to Ken’s testimony and Another father ’s testimony for his son with ASD….Both are in the testimony section under Audio..scroll down to YAGE..–It’s at the bottom.
Research is also on this website at www.lifewave.com/fundingASDresearch.
All proceeds go to ARI.

If you have a recovery story to share please email me- sarah at wakingsophie.com

I finally got enough money scratched together for the copay for Sophia’s new medicines. She is starting gentimycin, vancomycin and amphotericin. The idea is basically to kill everything in the intestines and start over. I am hoping this will solve her constipation problem that I believe is caused by clostridia. I will keep you updated on that.

She was just on amphotericin for 30 days. As I mentioned on a previous post, I was thinking about switching Sophia to diflucan which seemed to do better on her yeast. Well I talked to Sophie’s doctor and she told me that amphotericin is better for long term use, and to try giving it twice a day instead of just once. I will begin that today.

I am also going to do an ATEC test (Autism Treatment Evaluation Checklist ) sometime next week to see how much Sophie’s scores have risen since starting acyclovir. That should be interesting. I am so impressed with her progress so far! I will also update Sophie’s current supplement list . With starting these medicines which are given 2, 3 and 4 times a day our schedule should get very interesting.

This story was sent in by Wendy.

In 1986 I had my first child, a boy. Did everything the doctor told me, vaccinated on the exact date. Of course vaccinations weren’t as much as the schedule we have know. At his last shots he went into convulsions and suffered from seizures that included him stopping breathing and turning blue. These lasted until he was 16 years old. When I had my daughter in 1999 I was nervous about vaccinating so I did lots of research and became this super natural mom and even became a doula (child birth coach).

As I began to research I decided not to vaccinate, a choice that I later realized probably saved my daughters life. As I will truly never know, I can only say I believe with all my heart things would be much worse if I had.

My daughter was… quirky in the fact we thought it was cute she did odd and strange things. Her dad drew her a picture and at age 2 she stared at it for 5 minutes, she then went to her room without the picture and duplicated it in a 2 year old scribble. But the odd thing was the tree’s, rocks, stream, people, clouds… were all in the same place as the picture. She held back on walking, talking then suddenly she took off running. She hated strangers and we just thought she was clingy. She never said a word until she was 13 months then came out these sentences, so we just thought it took her some time to catch up. She suffered from strange rashes we could never explain and one doctor thought she had celiacs. Since we had a rich diet of wheat and whole grains, soy super health mom that I was couldn’t imagine giving up wheat products little did I know where my life would take me.

Then my son was born in 2002. Other than not seeming to alert and I couldn’t get him to smile and he was fussy like his sister I didn’t notice much. Then as he turn close to a year we were concerned in which I insisted to my doctor there was something wrong with my child. I saw other kids his age when mom’s would say “where’s the ball?” and they would look for the ball, point. We saw none of that, he just fussed all the time. This went on until he was 2 and my doctor said “it was because I wore him in the sling that he didn’t know how to walk very well, he was just clumsy, he couldn’t talk because my daughter (the little mommy) mothered him too much…” the list went on.

I went to ESD when I learned he was autistic and pointed me in the direction of how to get him diagnosed. He was very classic in all his symptoms but not the reason’s why. I had a natural home birth, no complications, didn’t vaccinate (don’t get me wrong I do believe whole heartedly that vaccinating can cause autism), had a good diet, never any earaches. But him not talking, flapping his hands, allergies passed off as a cold that somehow lasted almost a year but the doctor never thought twice about that one. He suffered from seizures that would commonly go up to 30 a day. The first I heard it may be autism I called everyone I knew and said ok, if you know anyone with autism give them my phone number. Within one week I found out the diet was more than wheat and was hooked up with 7 families in my area with autism. 2 mom’s so graciously gave us some books to read and my nose dove in them and I was consumed. I was also relieved that I was not a “bad mom, who spoiled my child” I now had a reason for how my children acted. Upon reading about autism I realized my daughter was on the spectrum too.

Was I ever poor and mostly alone with an unsupportive husband, very few friends because my it was hard to take my kids anywhere. I was breastfeeding my youngest so i immediately went on the diet. I wasn’t sure what the diet was so we all ate chicken, rice and veggies and that was the happiest week we had in our lives. The seizures disappeared. For my daughter it wasn’t as dramatic no real changes except she seemed less emotional and more happy.

Finally a diagnoses now for treatment. What? What do you mean there is nothing I can do. That answer was not good enough for me so I began to search for answer and came up with a DAN! doctor, testing which took me a year to pay for but I realize now that should have been the 1st thing to do. We had discovered all the special things we could eat; GFCF cookies, treats, bagels it was a smorgasbord of unhealthy eating and took me some time to realize that you can have an unhealthy good diet too. Now after all this wonderful food and realizing I felt much better off gluten I had to incorporate good foods to a child who would not eat anything but “good tasting bad stuff” We also later found out his allergy list included quite a bit, most of the SCD diet nuts, coconut, honey. He was also allergic to sugar, soy, eggs… oh boy. I slowly put small amounts in other things and sometimes he would he be able to tell if there was a drop of beet juice in his regular juice.

The road was rough and getting the kids to take all these biomedical treatments and eat healthy was a challenge in itself. I had to control my children’s environment; what food was offered, make sure they couldn’t get to anything, make sure aware and informed adults were present to stop children from passing candy to my kids. Also changing my diet in not bringing anything into my house that they cannot have, not going out to eat anymore and on long trips (2 hours) to the nearest big town to see a DAN! packing and preparing our own foods is tough.

I look at it like this: it is much easier to work hard and prepare foods, make my own jellies and non dairy yogurts, bake my own breads…. than to put up with the afflictions of autism and know that my child will only get worse not better.

My daughter is recovered. My biggest question was “what does recovered mean?” if you recover from a heart attack you don’t go back to your old lifestyle. After the research on foods that I have done I think that gluten, especially wheat, cow’s milk, and sugar shouldn’t be apart of anyone’s diet. We don’t offer it in our house and we use sugar substitutes like agave, xylitol, stevia… My daughter’s aspergers in managed. She is a completely normal child in every way including socially and doesn’t require any special services from ESD or the school. When she does sneak candy she does have bad days but putting her back on the diet we can manage it strictly by eating right.

For my son who at age 2 1/2 had a comprehension level of an infant, seizures 7-30 times a day, gut issues, allergies symptoms, couldn’t sleep more than 2 hours at a time, diarrhea, unexplained rashes, fits seemed like almost constant, to a normal 4 year old child at 5 years of age. He is catching up quickly, learning to read, making friends, singing songs, loves to count, do his colors and now plays on computer, throws very minimal fits and they pass quickly. He can answer questions and in every way he is normal just a year behind.

We have done the Mb12, vitamins, homeopathic, melatonin, DMG, TMG, minerals, anti yeast, antifungals, antivirals, antibacterials, high does vitamin A, diet… oh boy you name it.

My children’s diet consists of fresh juicing:

my son likes; beet lemonade
beet juice 2
lemon juice 1
agave nectar 1/2 cup
filtered water

another favorite is OJ carrot juice
oranges 3
carrot 1

my daughter likes shrek juice
apples or pears 3
carrot 1
spinach 1/4 cup
bit of parsley

the color comes out greenish brown and when we poured it into a shrek cup we called is shrek juice

cauliflower mash potatoes with garlic

we have tons of recipes that are high nutrition and low sweetner.

When we were discovering that Sophie had autism, my world crashing down around me, I finally reached out for help and prayer. I could not handle this alone and I was sinking into a deep abyss of unimaginable sorrow.

Anyone who has a child with autism knows this place all too well. The torment. The thoughts of all of your dreams for the future of your child broken and unattainable. The wedding day, the grand kids, graduation replaced by thoughts of changing adult diapers , looks of pity from strangers and the movie Rain Man.

It was when I finally reached out for help and posted a message on a forum that I frequent for prayer request that is when I received the story Welcome to Holland. If you have a child with special needs, you have undoubtedly been forwarded this story at one time or another. The gist of the story is that you are going on the trip of your dreams to Italy. You have bought guide books, planned, dreamed and prepared for this trip. There is a problem with the flight plan and you end up in Holland. Holland isn’t a horrible place, and you will always grieve your dream trip, but it has nice things about it too.

This was a turning point for me. When I read this story I thought to myself, I would never stay in Holland! There is more than one way to get to Italy. Boat, plane, hijack a bus but I would not just give up on my dream because of some misfortune, because someone tells me I can’t. I would fight my way to Italy and then enjoy it all the more because I would also have another triumph under my belt.

I am amazed at what people will except just because someone says “this is the way it is and you can’t change it”. Well they don’t know me and they don’t know my God. I have faced many challenges in my life and God has always brought me through them.

Another person, from the same forum I mentioned earlier sent me this:

Jeremiah 29:11 (New International Version)

11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I recently watched a DVD that has been advertised on my site called Teach Me to Talk, by Laura Mize, Pediatric Speech-Language Pathologist. The DVD was 90 minutes long and taught six strategies to teach your child to talk.

It was not made for children with autism, it is aimed at toddlers who are delayed in speech, but it has tons of video of a speech therapist actually working with children! This was so informative. Laura Mize explains what she is doing while showing actual video of her working with children with delays. These are things you can incorporate in every day interaction with your child. I finished watching the video feeling like I could really teach my child to talk!

I watch this video with my 3 children in the room, and my daughter Sophie, the one with autism, was actually playing along with the video! I highly recommend this video for anyone who has a child with delayed speech. It is worth every penny.

http://teachmetotalk.com/

Next page »