My son has always had very difficult control. Diagnosed at 1 year of age,It wasn’t until he was 7 that we finally decided (his endo and I) that we needed to start insulin pump therapy. The pump seemed to be the answer to all of our problems. His levels were in range almost ALL of the time, and he had so much energy and he had never known a life with consistent blood sugars.
However, 6 weeks later, he began experiencing burning, tingling, pins and needles, stabbing pains in his feet and hands. The pain was so extreme that he could not sleep. The pain soon began to spread to his back and neck, and everyday was soon about constant pain.He could not wear shoes, he could not even sleep with a thin sheet over his body. Everything HURT. It was like his nervous system was hyperactive. Nerve conduction studies came back normal. Every doctor/specialist we saw dismissed that his “'supposed” pain was psychological or just something as simple as growing pains. I knew that this was a terribly wrong call. Last Xmas, I had to beg for pain relief for him. He had intolerable pain, even through morphine. I did not know what was going to happen to him.
I soon discovered a phenomenon after hours of independent research called Acute Painful diabetic Neuropathy (insulin neuritis) which occurs AFTER there has been sudden improvement with blood sugar control. My son’s story fitted the case studies perfectly. After writing to overseas authorities in the US, and Israel, they soon gave me hope that he would improve, and that his condition, although terribly severe, would eventually resolve.
Last week, there was a Diabetes Conference in Sydney. We made a poster, outlining my son’s symptoms, and it gathered much interest from many diabetes experts Please find poster attached in PDF form, and feel free to pass it on to those who you think could benefit from learning about this condition.)
. We have just received notification that a world famous neurologist would like to publish a case study we have written in a a Paediatric Endocrinology Journal, and Neurology Journal. We were treated with doubt and dismissal by every specialist we saw, If only doctors KNEW about this phenomenon, medication could have been quickly commenced, and my son's symptoms could have been allayed. Historic day for us. We are so grateful that although we have been through so much suffering in our house, through the publication of our case study, hopefully another family will NEVER have to endure this again.. If you have any questions about Insulin Neuritis/Acute Painful Diabetic Neuropathy, please send a message to my inbox. I'd be more than happy to share further info with you. :)
Shuddering knowing the suffering your son endured:( When doctors don’t know the answer, it’s psychological or phantom. If he was a woman, the response would have been hormonal. Growing pains–arrrgh. Thank heavens you kept searching for the cause & weren’t dissuaded. With every step, diabetics have to be our own researchers, doctors, therapists & mostly our own staunch advocates.
What medicine would be given?
Thank you for sharing & for getting the word out. I hope you’ll post this on other diabetes boards.
I’m sorry that this happened to your Son(or anyone). I remember back in 2005, a US Mom was describing her Diabetic Teen-age Son’s severe pain with no help from the Doctors in a different Diabetes Community. It sounds the same. I hope that your Son will be okay.
Gerri-my son is still taking pregablin (Lyrica) and amitriptyline (Endep). He also takes a fat soluable form of thiamine called Benfotiamine. (as recommended to me by a type 1 doctor with neuropathy-it made an incredible difference.) Pregabalin is off label for children, but there was no other alternative but to prescribe it. I used to see my son pace around the bathroom floor, trying to get relief from the cold bathroom tiles…the doctors didn’t see this. I never, ever let up with the doctors. When they said "there is nothing we can do, " I would reply, “If you don’t know- ASK QUESTIONS-speak to your colleagues.” Its SO Easy for them to pass the buck, which is what happened, time and time again. Some wonderful doctors in the US all contacted the world leaders on paediatric diabetes and complications and a little network of emails were to-ing and fro-ing about my son’s situation. Without them, and their correspondence, I would have been totally alone.I wish I would have had the opportunity to speak to the other Mum in the US…during this whole experience, I have met NO ONE who understands or is enduring this KIND of neuropathy. No child or adult deserves this kind of suffering, esp with doubt and dismissal from the doctors. Thank you so much for your replies-and for your kindness. After 2 years of being made to feel like the world’s mother neurotic and over-reacting mother, it is so comforting to be spoken to with empathy and respect.
Lord, it sounds horrid. I believe you. There are others out there. It probably only happens to a miniscule of the Diabetes population. That’s why it isn’t put up front and explained to everyone, as it should be. You’re an Amazing Mom and you know what you are talking about!! I know you feel his pain. Best Wishes to you and your Son.
Yes Terrie-You are right. I don’t want anyone to think that because they have started on pump therapy that this will happen to them. The chances of this happening to a then 7 year old were 1 in a million. I did discover that Diabetics with Eating Disorders are also prone to this form of neuropathy. When they are in recovery, many of them experience the same type of pain that my son has. In my studies, the youngest person I found with this condition was 15. It isn’t just closed to type 1 diabetes either. people with type 2 diabetes who suddenly make a commitment to changing their lifestyle have reported intense stomach spasms, as well as the feet neuropathy pain. It’s a very strange phenomenon, se studieybut one that has been reported since the 1930’s. I can only hope that from this case study that doctors/endos are now aware that sudden glycemic control is NOT the best way.
I didn’t know that concerning eating disorders. True, I did hear of a worsening condition to a person with Retinopathy and sometimes made worse with Neuropathy to the legs or feet but I thought that was a different phenomenon because it is isolated to a specific area. Thanks for sharing this info.
The R form of ALA (R-ALA), alpha lipoic acid, is very effective for neuropathies. It’s been used in Germany by perscription for many years to treat neuropathies. It helps regrow the myelin sheath of nerves. It’s safe even in large doses. The only downside, which isn’t negative, is that it can lower blood sugar.
Would be a nice change if doctors actually wanted to research a case, rather than dismiss problems with the convenient catch-all that it’s psychological. Wonderful that you were able to find assistance. Heartbreaking to be in that kind of constant pain:( Heartbreaking for you to see your child suffering like that & not be able to do anything.
You have our respect, that’s for sure!
Poor little guy. I’m glad you figured out what it was.
My son has taken the R form of ALA along with Benfotiamine. I believe that this combination was instrumental in helping him improve so dramatically. In fact, after learning so much about Benfotiamine, I will make sure that he is never, ever without it. (Not available in Australia, but my wonderful friend and Professor in NY has organised scripts from Germany for me.) It is also available in the US-but the source from Germany is the best.
Nobody wanted to research this case. Everyone ran as far as they could from it. The only suggestion was that my son see an adult specialist who deals with neuropathies. She is the world authority-and her name kept coming up over and over again as being the best person to treat me son. She simply did not reply to me, our family doctor, a Professor at a Sydney Children’s Hospital and even a colleague. After I sourced the best paediatric doctors in Australia and they cut us loose, telling me I had done all that was possible-we were on our own. One doctor even suggested that because my son is a JDRF Youth Ambassador, that he possibly knew more about Diabetic complications than the average child with diabetes, and that he was feigning symptoms to seek attention. My son is an only child, whose health has always been vulnerable-he has all of my attention!!! The doubt, dismissal and innuendo were so hurtful. Thank you so much for listening, it’s the first time in months that I have been able to speak about this, because I needed to keep the details quiet until the case study was approved. I feel like I have the biggest weight lifted from me!!
I have neuropathy so I understand how painful that is for your son. I am sorry that he had to go thru that but I am glad that you finally found help for him.
I learned about ALA years ago when researching a way to help a dog with neuropathy. It helped tremendously (vets poo-pooed that this would do anything at all). Sure they never even heard of ALA. I kept syrup close by in case he became hypoglycemic. I had no idea how much to give a dog because they have such strong stomach acids.
How utterly frustrating & demoralizing your experience has been. If I was a doctor, I’d be eager for the challenge of a rare condition, especially for a child.
Good grief! A child in constant pain is pretending to get attention because he has knowledge as a JDRF ambassador! Can you feel the breeze in AU from my head whipping back & forth? If you lived in the US, doctors would have put your son on psychotropic drugs.
Insulin neuritis is a relatively rare neuropathy, and one that generally carries a favorable prognosis - of course, knowing this does not help when one’s child, or oneself is in the throes of such pain. This reminded me of another seemingly paradoxical phenomenon that was noticed quite some time ago. It has been observed that some people who are poorly controlled and have pre-existing diabetic retinopathy show a deterioration in their retinas following rapid improvement in their glycemic control. This has been documented many times. The good news is that the deterioration on the retinopathy is often found to be transient. It is an interesting - and often very frightening - phenomenon that we only became aware of as we developed tools to normalize blood glucose levels rapidly.