Wow, this week has had its special highs and lows for me but I tell you what, last night I read something posted by a member of the Diabetics with Neuropathy group I host on facebook. The article was from a lady named Kate Hannant about her son Demarco. Demarco is a Type 1 brittle Diabetic with Peripheral Neuropathy. Kate uses a few terms that are familiar to those of us with in the Diabetic community however since I know from messages I have received that not all who read my blog are Diabetic, I am including the breakdown of the two terms for you. Everyone I know how Demarco feels the pain is intense I have days I cry as an adult because of the pain I go through form Diabetic Peripheral Neuropathy. Demarco is 9 years old and started dealing with this 2 years ago when he was 7 he has my prayers always and my respect for holding up and learning to be stronger than his pain.
Endo = endocrinologist (Diabetic Specialist Doctor)
GP = General Practitioner
Demarco's Story. (My 9 year old warrior.)
Kate Hannant: Hi everyone... I thought that I may as well just come out and tell you all on this page about our journey over the past 2 years.
Demarco has always had terribly brittle diabetes. The stress involved in the early days got the better of my marriage. Demarco is my only child, and before the diagnosis, I had a world full of incredible opportunities. Suddenly, I found myself as a single parent, and dealing with baffled specialists, who had never seen a child so sensitive to insulin. We soldiered on, and anyone who knows Demarco knows that he is a delightful child.
In 2008, his endo said, "Let's get Demarco on a pump-it can only help." Within a month, it was organised. A few hours after he got hooked up, I could already see a difference in him. It wasn't until a week later, when he smiled and said to me, "Mum, I feel so much better! I have so much energy!" that I knew how amazing the pump was for him.
Then, In September, 2008, after a beautiful Spring day, I found him with his feet up against the fan. He said it felt like there was lava flowing through his feet. Then the next night. I googled "type 1 diabetes burning feet" and my heart sank. The next day I wrote the words "peripheral neuropathy" down on a piece of paper and took him to our GP. The GP looked at me and shook his head. He assured me there was NO WAY that Demarco could have nerve damage. However, I was insisted that tests be run, and he had a nerve conduction study that weekend. It came back normal.
Now, the burning had progressed to stabbing, pins and needles that would last for 2 hours, numbness, "cement" like sensation, and general pain that no simple analgesics (panadol, neurofen) would touch.
One night, just before midnight, I saw Demarco at my bedroom door. He was on his hands and knees, begging me to take him to the hospital. He was in agony, and he couldn't stand. I called the ambulance, and he was rushed to the ER. A registrar was very concerned by Demarco's symptoms. and wrote an emergency referral to the Hospital Paediatrician.
This doctor gave my Demarco a very thorough examination. My parenting was questioned..(Demarco and I have a very close relationship)-Paed wondered if Demarco was acting out in an attempt to seek more attention. I knew that wasn't the case, and I demanded that further testing be done. He handed me a referral for a child psychologist.
Then we saw our endo. I thought that for sure he would be the one person to act quickly. Imagine my dismay when he said, "Let's wait 9 months to see if this pain disappears. Otherwise we have to order a whole lot of tests that will end up finding nothing." I was devastated. I had known this man for six years-he had diagnosed my son. In the meantime, Demarco was in pain 24/7. He couldn't walk without pain. He couldn't even stand to put shoes on. The pain spread to his back, neck, ribs. He used to beg me to cut off his feet. Still, no one seemed half as worried as I was.
I began researching independently. I found that there was a phenomenon that occurred when unstable blood sugar levels were suddenly corrected. Instead of feeling better, people have reported untreatable pain. All of the symptoms added up. I began writing to authors of papers, asking them their opinions. Soon, I had a little network of the world's leading paediatric diabetes specialists emailing each other, asking for each others' opinions. None of them had ever seen the symptoms of Painful Diabetic Neuropathy before in a child so young.
I found a book written by a Professor in Sydney. I wrote to him, and begged him to see Demarco. It took months for him to reply, in the meantime, I was looking at catalogues for mobility scooters and wheelchairs for Demarco. His was wearing morphine patches, and the pain STILL persisted. I would have done ANYTHING to have the pain transferred over to me. I wrote to a Professor at Sydney Children's Hospital, who was curious and interested enough to ask us to come straight away for an appointment. He wondered if Demarco had Post Traumatic Stress Syndrome, because of his severe hypoglycemic events as a younger boy. Eventually, I took Demarco to a child psychologist to help him learn strategies to distract himself from the pain. After 3 visits, the psychologist said to me, "Kate, he is really suffering. It's real, it's not a psychological problem. It's real." I sat outside his surgery screaming my lungs out.
In the meantime, the best Professor of Paediatric Neurology finally contacted me. He said that we could come to Westmead Children's Hospital and have every test ordered by the Diabetes Complications Services Unit. We had to wait TWO agonising months. On Christmas Day, 2009, my son, pale and weak lay on the sofa, not even able to open his presents. He tried his hardest to be happy, but he was in sheer agony, and totally bombed out on morphine.
Finally, we went to Sydney for our appointments. Thermal Temperature and Vibration studies were conducted on Demarco by a Professor in Diabetes Complications. He failed them abysmally. They got us back the next day to repeat them. Again, finally, there lay the evidence that showed that Demarco indeed had nerve damage in his feet. After seeing 14 specialists in Endocrinology, Paediatrics, Psychology, Pain Psychiatry..we had an answer. I asked her whether she thought that Demarco may have had the Painful Diabetic Neuropathy, and she agreed with me.
The chance of this happening to a child is so remote..I can't even offer up statistics. However, this condition is quite common in people with diabetes with eating disorders who are in recovery-people who had terrible control, who suddenly got their numbers in range again. Doctors from the Mayo Clinic in the USA contacted me and told me to remain hopeful that Demarco may have some remission from the pain, and that often, things improve in other cases.
Today, Demarco is still on pain medication, and he can now wear shoes. He can sleep a whole night without pain affecting him-it's only the hypos that interrupt his nights now. He still has pain, but he is so mentally tough that he works his way through it. We have endured two years of sheer hell together, without the support of the medial profession. I have had doctors suggest I had OCD, that I was doctor shopping for narcotic medication, that Demarco was feigning symptoms because he had a psychological disorder..many, hurtful accusations, much dismissal, constant doubt. My message is-Dont put all your faith in the words of doctors. Especially where type 1 diabetes is concerned..parents are the best doctors for THEIR child. You know your particular situation-doctors know a textbook situation. I am almost finished a book about our experiences, and I feel confident about sharing our story with the world. I still have my precious boy, he has escaped from this nightmare relatively unscathed. He has a profound fear of seeing doctors, but that's only to be expected, really. Never stop fighting for your child. Ever, ever, ever. You can't expect your doctor, your endo, your diabetes team to take full control and fix a situation..listen to that incredible gut instinct we all have. Thanks for reading, and thank you to everyone for your support. It has helped more than you know.