Help needed DS CP neuropathic pain

[2old2beamum]

Can anyone help DS age 13 CP deafblind nonverbal has been screaming,crying, moaning and writhing since June finally diagnosed with neuropathic pain. 6 weeks ago prescribed propranolal it worked at first then dose doubled and now increased again so far little effect. Painkillers useless.
Please has anybody had this problem as we are finding this heart wrenching watching our beautiful son suffering. BTW he was observed by nursing team in respite using the GOSH pain chart for nonverbal children scored 35. NHS have been fantastic but would appreciate any extra input.

The general treatment for neuropathic pain is, I believe, anti epilepsy meds and amitriptilline. Not because the person has depression or epilepsy but because it does something around those nerve pathways.

here

I recently read that a neurotransmitter can be implanted permanently and activated by the patient when they have pain. This treatment is recommended by NICE but is not widely used because of cost but is very effective. It may only be for adults though?

here

thankyou sneezecakesmum. Will look in depth at articles tomorrow, have scan read them, off to give our little scumbag some Diazepam. I must get some sleep tonight as DGCs are here tomorrow. Have to joke or else I would cry. Nursing black humour IYSWIM

I was going to say maybe amitriptaline might be better. Propranolol gave my dd pins and needles in her arms and legs which caused her no end of misery. She had it for periferal nerve damage (her body wont shut off pain). Travels down nerve endings usually affecting stomach, reflux, digestive and intestinal where she was concerned. Possibly caused by a virus (ie she had glandular fever as a child) so they said. Once the dose was lowered the pins and needles went but the pain was still there.

She is on amitripaline now and has been for years. As well as depression, relaxant and other things, it is also used for slowly repairing nerve endings. Seems to be working as her dose is now a lot lower than it used to be and she is coping well.

I hope you sort something out for the poor mite soon x

I have gabapentin which is an anti epilepsy drug as is pregablin and they are both used for neuropathic pain. It was like a miracle for me. I don't know at what age you can start it though. Poor thing. I know how it feels and it is not good.

Thankyou ladies. Another question can anyone explain what it feels like and why he screams and moans for hours. Is your dd verbal if so could she tell me what it is like please xx

I have amitriptyline for nerve pain in my lower back from nerve damage and for nerve pain caused by fibromyalgia.

The pain is like a spiking buzz, it ebb and flows but never goes away. It leaves me jumpy and affects my digestive system, lots of pain can lead to nausea and vomiting.

I just asked dd if she remembered how it felt (she is a grown woman now) and she said it was pulsing pain? she said it felt like you have a toothache pulsing then stabbing, her fingertips and toes were like pins and needles and felt like they were numb at the same time. I do remember one scary morning when she actually could not move her arms and legs she was crying saying she was paralysed, like she was pinned to the bed. She doesnt have a disability that would cause anything like this. The GP lowered the dose as she suffered low blood pressure and he thought the dose was way too high and causing the symptoms.

Digestive wise the pain was excruciating at times but no warning. one minute she would be walking beside me laughing and the next she would be by me on all fours it knocked her for six. She would be dizzy and nauseous with the pain and cramps. Initially they just gave her stemetil to stop her feeling and being sick before they changed to the other meds.

Burning, stabbing, spiky, pins and needles all at once or just out of the blue.

It is very very tiring pain I find. It makes my hand feel very heavy and "claw up".

It must be so hard for him (and you) as he is non-verbal so he can't help you to understand. It is hard enough to try and explain as a verbal person. I really had to think and read the other responses. It is just horrid nagging and feels a bit like it rules my life atm :(

Thankyou all so much, you have been very helpful they all sum ds up perfectly, was very interested in the vomiting and nausea I was worried it was his feed was causing the wretching & vomiting. I will write ( if you don't mind) the symptoms down and send them to school etc. I think it would help them manage him when I can get him in his wheelchair to go to school (90 min journey) Thanks for listening and hope you and yours are ok.