Yasmin was hospitalized recently, shortly after I returned from the DAN Conference. For nearly 2 days, she was complaining severely of “itchy bottom”. It was driving her insane to the point that she would strip off her pants and nappy in the middle of the night. She cried about the pain in her tummy, always pointing to the same spot. All day long she wept “I’m not feeling very well” over and over again. When she was admitted into hospital, a doctor tried to place an IV drip, however there was difficulty in finding a vein. After much poking and prodding with needles on 2 separate occasions, I demanded that they stop. After all, Yasmin was still able to drink and she was not vomiting or losing fluids, so an IV is not necessary. After all the trauma and screaming over the IV fiasco, Yasmin was still in pain.
The hospital had assigned an unknown pediatrician on Yasmin’s case, however I demanded a Pediatric Gastroenterologist who was familiar with Yasmin. Dr N is familiar with the GI disorders common in Autistic patients and she was aware of Maya’s issues. After physical exam, thorough history, looking over Yasmin’s lab results and much consideration, Dr N suggested we do an endoscopy. I immediately agreed as my research has led me to believe that an endoscopy will shed more light on Yasmin’s issues. Unfortunately, there was not much that the Dr could do in the meantime except to give Yasmin some panadol. It was heartbreaking to see her in pain yet not being able to help.
We were referred to Dr L, a senior pediatric GI specialist in another hospital, as that is where the equipment and facilities for children’s endoscopy are available. Again I had to go through the entire history with yet another doctor. Yasmin’s main issues include behavioral and physical regression after her bout with Rotavirus more than a year ago. Chronic diarrhea presenting soft, unformed, yellow, smelly stools for past 6 months, alternating with slightly better formed stools with dual colour (green/brown), mucous and slimy, with undigested food. She had abdominal pain, bloated tummy, loss of appetite, picky eater, itchy bottom, recurrent bacterial infection, frequent colds, flus and fevers. Dr N as well as 2 of our biomed doctors have recommended an endoscopy as all the interventions that we have done has not shown great improvement. And any improvement we gained was temporary and very short-lived.
Dr L was willing to do an endoscopy and obtain some samples for biopsy. Yet even after being presented with all the history, symptoms, physical exam and recommendations, he stressed several times to me that he will probably find nothing from the endoscopy. He gave me the impression that he’ll do it, but it’s a waste of time because to him, these are all symptoms that will “probably go away by itself as she grows out of it”. Instantly my Mummy Radar went up, I knew well enough that a doctor who was not committed to the patient nor the procedure is not going to be the best person for the job. And unlike the first pediatric specialist, Dr L was not even aware of the gut-brain correlation, nor the well-known GI disorders in Autistic patients! Shame on you!!
Anyone who has read materials on GI diseases in Autism or by Dr Arthur Krigsman in particular, understands the intricacies of doing an endoscopy for a child presenting GI symptoms associated with ASD. You need to know WHERE to look, WHAT to look for and trained to RECOGNIZE it. Paul and I made the decision that this is definitely not the person we want to do an endoscopy for Yasmin.
We also had our first consultation with Dr Kyle Van Dyke. Over the 2 hour consult, Paul and I were impressed at how quickly he grasped Yasmin’s issues. Of the 6 DAN doctors we have consulted, I just realized that only 1 of them has a child with Autism. Not only is Dr Kyle a biomed doctor, he mentored with Dr Elizabeth Mumper for several years, he is a frequent speaker at DAN and other Autism conferences. But most importantly, he also personally experienced the heartbreak of having a child with Autism. He also treats the siblings of children with Autism and has treated his other child too. Hearing his son’s story at the DAN conference, there were many issues that were reminiscent of Maya and Yasmin’s.
He too recommended an endoscopy for Yasmin, however when we explained the situation, he suggested doing an abdominal X-Ray to check for impacted stool. So, this is next on my ever increasing to-do list. He also put Yasmin on Enhansa and several other recommendations. It’s only been 10 days on his protocol and too soon to tell whether it’s a coincidence, but Yasmin’s temper tantrums and irritability has lessened and no longer complains of itchy bottom. Her tummy is no longer bloated and her appetite has improved. How long this will last, we don’t know.
However, we are grateful for any improvement big or small. Giving up is not an option. Letting my baby suffer in pain day in and day out……. do NOT tell me to give up. Do NOT tell me that there is nothing we can do about it. That sort of attitude or so-called advice is not welcomed. You know when someone thinks that they are being helpful and they say to you “Don’t worry, she’s still young”. What the heck does that mean??
So she’s young, is that any excuse not to treat her medical illness? You really think that someday she’ll grow out of it? Most people don’t realize that chronic symptoms if left untreated can be a precursor to bigger and worse diseases when the child is older. Now, don’t you think as a parent that it is our responsibility to ensure our child’s health? The earlier you treat it, the better their chances at recovery. Why in the world should I wait until it’s too late? I mean, seriously!
Etiquette lesson #23 – if a friend or a family member has a sick child, do not say “Don’t worry, it’ll be fine.” A parent can’t help but worry and we don’t know if it will be fine. Instead say “I’m so sorry to hear that. Is there anything I can do to help?”
For those who know me well, I will never keep fighting for my girls. The words “No need to do anything, she will grow out of it” is not in my vocabulary. Yasmin deserves to know that Mummy will always do what’s right for her. I WILL make her feel better, by hook or by crook. If I can recover 1 child from Autism, I can certainly help ease Yasmin’s pain. I will I will I will………