Help - any advice greatly appreciated

[RHYN]

Our daughter was diagnosed with scoliosis (curve of the spine) in November 2020 and had spinal surgery in March last year. Sadly, the pain still hasn’t eased and we are now almost 44 weeks post op. She has a constant ache across her back and a periodic stinging burning in her left shoulder. Her back is hypersensitive to touch. Does anyone know what the maximum dose of gabapentin is per day for a 15yr old in ml’s? Our daughter was on 12ml three times a day (36ml total) for over five months. They took her off of it and then put her on amitriptyline then took her off that and put her on pregabalin (she is currently on 100mg twice a day) but the pain isn’t easing, if anything it is getting worse. Our daughter thinks that when she was on the gabapentin, the pain wasn’t quite so bad as it is now. I have been reading the leaflet from the gabapentin and it looks like the max dose is 72ml per day - if this is the case, then it means she was on half of the maximum dose at 36ml per day. I’m now wondering if she could have been on a higher dose and if she had been, could it have helped to ease the pain. The surgeon keeps saying he thinks it is muscular pain, he said the surgery went to plan and his job is complete and it is down to the pain team now. He has referred her to a neurologist and we are awaiting an appointment but he said he is not expecting them to find anything. We know how important it is to keep her moving and go swimming 3-4 times a week and we walk every day. It is heartbreaking to see her still in so much pain ten months post op. Any advice greatly appreciated.

[Bevvy]

Have you discussed the situation with your pharmacist? Might be worth booking an appointment with them to discuss what you have said here. They may well have an opinion on whether she should be put back on gabapentine at a higher dose. Or ideas as to other options.

[RHYN in reply to Bevvy]

Thanks so much for taking time to reply Bevvy. By pharmacist, do you mean our GP?

[Bevvy in reply to RHYN]

No I mean the chemist who dispenses your medications, that is where you pick them up from. Chemists/pharmacist are trained about drugs/medications and usually know far more about medications than a Gp.SOME gp surgery’s have a pharmacist/chemist as part of the surgery now. If this is the case with your surgery them make an appointment to speak with them.

If you go to your local chemist would be worth explaining you want an actual appointment to discuss medications. That way you will get 10-20 minutes of proper attention.

[RHYN]

Thanks Bevvy. Our doctor’s surgery has a dispensary and they dispense the medication themselves in-house. Our GP said he has to follow what the pain team say with regards to the meds as we are under them. I just think if they were giving her half the maximum dose for over five months and they took her off of it because it didn’t help, it doesn’t make any sense why they didn’t up the dose to see if that worked. I assumed that 3 x 12ml per day was the maximum dose but the leaflet in the gabapentin box suggests that the max dose is actually 72ml.

[springersrule in reply to RHYN]

Hi Rhyn, i can't really help with your question but agree with the suggestion of speaking to the pharmacist, either in the dispensary or through your GP surgery. Over the years i have regularly chatted with them as they really do have better knowledge. I have had medications prescribed by the pain clinic, rheumatologist, dermatologist and my GP and they can give a better overview of them all. Sometimes they have just been able to give me information so that i can have a better conversation with the presciber and let them know what the pharmacists suggestions. Its always worth a try. Good luck xx

[cyberbarn]

drug doses should be worked out according to weight, not age. Often though they just do a blanket average. This is why many women are actually taking far more of a drug than they need. They weight less than men and in some cases are borderline overdosing. The dosage in children and young teens needs to be calculated by a doctor, however having said that, a chat with a pharmacist might help.

Most GP surgeries are now part of a Primary Care Network (PCN) and there is usually a pharmacist associated with each GP surgery. It would be worth ringing the surgery or taking to the person running the dispensary and asking for an appointment with the surgery's pharmacist.

[timbowPSP]

Hello Rhyn, So sorry about ur dtr's situation and pain. I am now 80 just retiring from complementary therapy. I spent 25 yrs as a Bowen and NST practitioner (gentle hands-on stuff), and had some wonderful results in 3 treatments. Even the Welsh bowls ex- silver medallist with severe scoliosis said he had less pain than ever before! So this is a suggestion to look 'outside the box' at Bowen, Cranial osteopathy, etc. Drugs debilitate you system in the long run, and I keep away from them, so far as I can! Very best wishes to ur dtr, and do ask more if you wish. Cheers TIMbowPSP