In all that time no one has been able to offer anything to relieve her pain at all. Have tried anti spasmodics - dicycloverine appears the best but only improves pain slightly. Shes been dairy free for 2 weeks and has just started the SCD diet.She also takes acidophillus and drinks 1 litre plus of water a day. Can anyone recommend something to try ? Shes been off school all that time. Shes not stressed in anyway but this illness is going to give her depression if I cant soon do something for her.
Thanks for reading
Jo x
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Thanks for your reply . She's on acidophilus and tried peppermint tea but can you tell me more about the ginger? What form is that in - tea ? Tablets ? I will def give a try if you tell me where to get it from . Thanks , appreciate your help x
i would think any form except ginger ale. Ginger tea, crystallized ginger available at health food are my 2 choices. Also grated fresh ginger added to cooked food. Great for nausea or inflammation. Sorry to have this happen when she's so young.
Hello - this may sound extreme given your daughters age but my pain was agonising, I couldn't even lie down in bed. But luckily my consultant was great and he prescribed 2mg diazepam to take with the pain meds. At that dose they are muscle relaxants so they took the edge off the spasms. In my case the more a stressed out about the pain the worse it got so the diazepam also help with that. After trying everything this help the most because it seemed to make the other drugs more effective and only only need to take it when I need it so I don't take it everyday.
Also I find peppermint tablets better than the tea, the tea is great when the spasms are mild but when stronger the tablets work much quicker.
All the best
How awful for your daughter and so young. I find it difficult to handle the pain but find that the best antispasmodic for me is Windeze, I can't seem to get in it many places where I am (I do live in the UK) but I do find it the best one, I purchase it in gel capsules.
I am waiting for the dietician I saw to contact me in around 5 months' time when her colleague has been trained and will be embarking on the FODMAP diet - there have been very good results with this. Maybe a good idea, under a dietician, that your daughter is put on an exclusion diet and hopefully they do have such things designed for younsters.
Thanks for these suggestions . She's been on the SCD diet a couple of days . Not heard of FODMAP diet , will take a look . I think it's because she's so young it's been so hard to treat the pain . The doctors don't seem to care that she cries herself to sleep every night . It's heartbreaking to see her pain . My mum has ulcerative colitis so we wonderf if thst was whats wrong but after ultrasounds , x rays , fluoroscopy and MRI they've all been clear except the fluoroscopy which showed constipation .
Thanks for all your replies . Going to see what consultant will give her next Friday.
I am sorry to hear your daughter is ill. My daughter started to be ill around age 8-9 and had to be taken out of school for Home Education due to the amount of time she was absent! At worse she would crawl around on all fours as she had both joint and abdominal pains. Many things were suggested ranging from Lupus, Crohn's Disease and heart problems to constipation and "mind power" - this little gem coming from the school welfare officer. Eventually a diagnosis was made - Idiopathic Chronic Pain Syndrome, Hypermobile joints and flat feet! One specialist we saw suggested amitripyline which helps with pain at low doses. It was never prescribed for my daughter however I take it myself as I have Ulcerative Colitis with some non-abdominal symptoms and it does work.
My daughter currently has a great deal of abdo pain and her joints are also playing up following almost complete remission for about four years. She has only ever been prescribed
"simple" ibs medications or had over the counter preparations suggested, none of which have worked.
My daughter was a good student, a hard worker in top sets and enjoyed school apart from the pains, but stress was caused as the school refused to co-operate by sending work home. We were visited by a social worker and school welfare officer who told us that both my husband and myself could be taken to court, to expect heavy fines and possibly prison. This threat was supposed to "scare" my daughter into returning to school, in fact it was soon after that we removed her for Home Education as we lost all respect for the education system.
Tests were done for Crohn's Disease and Ulcerative Colitis, due a strong family history, but nothing showed, and an appendectomy was done but the appendix was normal - now aged 19 D is currently trying to get a referral to adult gastroenterology.
You are doing a great job by being a supportive mum and that is what your daughter needs at her young age. She needs you to speak up for her to get medical help and belief that her pains ARE bad. She may also need your help with school especially if she experiences the same sort of treatment that my daughter suffered
Good luck and best wishes to you and your daughter.
Cuddly_mum you are so on my wavelength ! I have had it suggested many times that perhaps she is stressed from starting secondary school but it started when she was 8 ! I've also had it suggested that perhaps she thinks she's got pain when she really hasn't ! I told them I'm a loving mum who knows her children better than anyone and that she is not stressed although did say we would all be stressed if they didnt sort her soon ! Nor is she imagining it . Since October she has had a permanent urine dipstick of red and white cells , continual thrush and cystitis - they are real - they can see that from the tests ! I'm lucky because the school has so far been very supportive - but wonder after 14 weeks how much longer before they blow.
We went to the consultant yesterday who says he is 99% sure she has severe ibs . He has given her the amitriptyline you mentioned but after two doses its made her really dizzy and spaced out . She's also got the dreaded movicol , pico sodium sulphate , another pill to keep acid down and mebetherine liquid . I'm just hoping it will sort her . If not then she is booked in for a colposcopy for 12 weeks time .
Interestingly I link to your story with UC - my mum has it badly . Seems bowel probs missed me but jumped down to my children . It sounds like your family was treated appallingly / the medical system has changed so much it's scary .
Thanks for taking the time to
Reply , it means so much . I'm sorry she's still suffering - that's appalling
Hi Jo, I am a colonic therapist and registered nurse and have undertaken many many hours of research on this subject, especially as my own daughter had this problem at a very young age. First of all does your daughter eat flavoured crisps? I have found that these, particularly salt and vinegar are particularly bad for IBS sufferers. I would also recommend a supplement called intestaidIB for her. If you want to contact me personally please let me know
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