Parent Testimonial to UK GMC Panel, Update

Below is a testimonial to the GMC panel from Heather Edwards, regarding her son and his current health. Heath just contacted me and sent this photo of Josh with permission to run it.:

16th March 2010
 
Dear Claire Henesy,  
 
I write to you again now I am aware of the findings of facts from the panel, with regards to the case of Dr Wakefield, Professor Murch and Professor Walker-Smith.

I stand by the contents of my previous testimonial and would like to add a statement following the findings on fact.
 
My own son’s health has deteriorated since I wrote my previous testimonial. It has now been 4 years since my son has been able to eat and still remains unable to tolerate ANY food. This is due to the bowel disease raging through his poor body.

My son is now 17 years old and weighs under 6 stone, he looks like a victim of a concentration camp.

Josh my son is living proof this bowel disease Dr Wakefield discovered does exist. As a Result of the severity of the disease, his whole colon had to be removed.

I cannot begin to explain the pain my son endures and how his own consultant is unable to treat the condition and move him forward.
 
I was very angered and upset on the days I attended the hearing, to hear Miss Smith say “there was nothing physically wrong with these children” perhaps she needs to see my son and live with what he has to live with.

Josh’s output in his ileostomy bag remains double the daily amount of stoma losses, due to untouchable bowel disease.

I have images of my son’s insides 3 years after trying to treat the disease with steroids and immuno-suppressants. These images show the bowel disease remains untouched in fact it was more prominent to see.

 
I feel the evidence presented has been completely ignored. The level of damage in these children has not been understood or investigated thoroughly. They were always out to crucify these three wonderful caring doctors regardless of the facts.
 
The panel is inadequately armed to assess this case. I think the three doctors could even have stood up and performed a tap dance and the panel would not have noticed.
On several occasions when sitting in the hearing one particular member of the panel seem to always be fast asleep.
 
These three doctors are of the calibre to assess children like my son. It should not be left to a Journalist or a legal team, or a panel of GP’s, Psychologist and two council workers.
Ethically it is immoral for doctors to ignore the symptoms of these children. I find it absolutely outrageous that Dr Wakefield was found guilty of subjecting children to unnecessary invasive procedures.

I would like to know WHY, if they were unnecessary were the procedures still being performed after he had left the Royal Free Hospital. These tests are still being performed on my son and he has another admission tomorrow 17th March 2010.
Surely all these doctors should be brought before the GMC if that is the case.
 
If my son was not ill enough then why was he referred from Great Ormond Street Hospital to the Royal Free?

These three doctors tried to help the children not ignore them.
I would not like another child to pay the price my son is paying.
 
This was always going to be built on a political end, nothing more than a witch hunt.
My heart goes out to the three doctors who were only doing there job.
 
Yours sincerely
 
 
Heather Edwards

Comments

[My Autism Recovery]

Heather, I am touched by this post. I absolutely HAVE to second all these other comments in saying that a lot of doctors do not understand what parents of autistic children are dealing with every day.

[Judy Converse MPH RD LD]

Heather and Josh, correctly monitoring the nutrition piece for these cases is critical... Children in this situation in my practice have succeeded with amino acid based elemental formula, monitoring for food intakes with thorough support for menus and meal planning, careful and intensive use of SCD carbohydrates, and aggressive controls on bowel infections. Tools like Vivonex, Peptamen Junior, or any casein or soy based formulas or even hydrolysates of those proteins usually fail. Gluten free is usually imperative also. Josh, you deserve to feel well and strong. I am very sorry for all you've suffered, and applaud your bravery in sharing this and in meeting the challenges of each day.

[Darian (nickname)]

This brings back painful memories of my younger days. I too know what it is to lose weight rapidly without being able to do anything. I could eat, but no matter how much I ate, or what vitamins I took, I would never gain weight. I was a 60 lbs 14 year old!! It was not till I was diagnosed at 18 with Aspergers and diet changes such as removal of certain foods and all forms of sugar and caffeine that I was finally able to gain weight again. I will never forget going into my mom's room after viewing myself in the body length mirror after a shower and being able to see all the bones in my body and crying and crying and crying for hours! Or what if felt like when I was called into the nurse’s office and my mom was called and asked if she noticed any changes in me and if she thought I was anorexic! What if felt like to lie on my stomach at night and feel the uncomfortable feeling of my pillow going slightly between the ribs through skin…WHEN WILL THIS STOP!!! WE DID NOTHING WRONG TO DESERVE THIS! DAMN YOU CDC AND MERK!!! DAMN YOU TO HELL!!!!

[Anon]

Dear Heather, I feel deeply for the immense pain and suffering Josh has endured and for your pain and sorrow as a mother to be challenged with such a monumental disease that has been shamefully covered up by medicine. Your son is such a precious angel and he is so lucky to have such a strong and courageous mother. You both will always be in my prayers. Thank you for sharing your story with us here at Age of Autism and in the upcoming Autism File magazine.

You bring a valued awareness to a devastating disease. My son also suffered GI dysfunction for so long, his food would come out completely undigested. At one point I decided to put his food in a blender to increase absorption. No one understood, and he went from 75th % in weight down to 15 % in weight and my pediatrician said it was normal and to keep vaccinating. It was fortune that he was able to have his GI function improve with digestive enzymes and other measures. But every child's pathology is different. I remember the days when I thought I was the only mother who was dealing with this and his constant illnesses due to his immune dysfunction.

Thank God there for people like you, for forums like Age of Autism, and for researchers as intelligent, and ethical as Dr. Andrew Wakefiled. This is what brings awareness, support, and community to a devastating disease being hidden in a heterogeneous set of diseases and symptoms under the DSM diagnosis.

My best wishes and love to you and your very precious son. May God Bless You and Your Angel.

Hugs:)

[Jenna]

I have no words for this...my prayers go out to you and your beautiful boy. I'm sure you've ticked these things off your list, but hard chamber HBOT and IVIG were the two interventions that finally got my child's GI tract healed. I will pray for miracles for you--first and foremost, that your son can find relief from the pain and regain his health, and second, that you and your son, and the physicians that helped him, are vindicated in the end. You are a phenomenal mother; keep up the fight, and let us all know what we can do to help.

Love and Hugs, Jenna

[Simba]

This is criminal. Plain and simple. Heather, my heart go out to you and your son. When is this madness ever going to end?

[Alison MacNeil]

Heather, I have to post because I am so moved by your son's story. I'm sure you have tried any and all that I might suggest, but just to be sure I thought I'd share what has helped my little guy, who isn't out of the woods by any measure but he is a long way forward. We see Dr. Buie in Boston, through MGH. Nick has terrible clostridia which we have had to treat with long term (6 months) of Vancomycin anti-biotic. We also use VSL#ds, which is probiotic in a pouch specifically designed for people with ileostomy bags. My son does not have one, but the benefit has been extraordinary.My son takes 2 packets a day, some children need 4. Adding this enormous amount of probiotic ended the gigantic amount my son would poop. It has made a world of difference. Nick has benefitted by pentasa (reduces gut inflammation)and also Ultrase digestive enzymes (no more undigested food in the poop)These interventions among many others are helping him to start to gain weight again. I'm wishing you renewed energy on your journey as you go public with Josh's story. He has touched my heart and I will keep you in my thoughts and hope for positive change for you soon.

[n]

Treat the kids medically instead of with psycho drugs and the kids can possible even recover....When will they ever learn....Praying for you and your son. God bless you and keep you...

[Heather Edwards]

Kristina,
I am at present trying LDN again on Josh. Had to discontinue previously as Josh took a turn for the worst, resulting in 4 weeks in hospital. Advised to stop Low Dose Naltrexone due to such high powerful intravenious drugs being administered. I cannot and will not give up on Josh the way some of these doctors have. How some of these doctors sleep at night I will never know. I am hoping may be help might be out there some where when people read the Autism File. As having taken Josh to the states 3 years ago we are NO further forward.
Heather x

[Kristina]

Heather, they sabotaged his colon??? I can't believe the evil in this world. My heart is breaking for you and your son.