As I am writing this I am close to tears and I do not know how much more I or my daughter can take.
My daughter is 7 years old and she has been in constant pain for 8 months now. All her symptons are the same as cystitus but every time she has a urine test it always is negative. We have a great urologist in Southampton hospital ( in the UK ) he has tried lots and lots of tests and drugs but none have worked. She had 3 courses of trimethaprin, 2 courses of ciprofloxin, immipramine, oxybutinin, oxybutinin slow release, canastin cream, canastin with hydrocortizine, a cystoscopy, a urethral stretch, she has had herbs from a natrupath, we have tried changing her diet, and the list goes on.
We saw the consultant last week and he had put out a lot of emails to collegues across the world and he had some more ideas come back to try. She has been given her some oestragen cream as this has worked for others before and if this does not work she is to have another op, this time to take a biopsy of the lining of her bladder, even though last time he did a cystoscopy it all looked normal he said you can have IC hidden in the wall. He is also going to do a urine flow test.
She is in pain every time she pees and has sharp pain in between as well. She cries every time and some times can not pee at all. She is also being referred to a pain specialist and a phsychiatist to help her cope mentally with the pain as she is very depressed and she told me the other day she wished she had never been born! She has missed two thirds of this school year as well.
Anyway thankyou for listening and if anyone can offer any help I would be very very grateful.
yours depressed and now in tears Keren and Meg.
I wish I had some answers for you. I have IC, and children can have this condition as well. It is difficult to diagnose -- they really exclude all other possibilities to get to a diagnosis of IC. One question -- when your daughter had the cystoscopy, did she have it with hydrodistension? That's when they put the camera into the bladder, look at it, then fill it with fluid, drain it, and look for signs of petechial hemorraghing (can't spell that h-word, sorry!).
I'm so sorry you and your daughter have to go through all of this. The urinary tests are just awful. Please know you are both in my thoughts.
Sadmum,
It really sounds like you daughter may have IC. At least your doctor recognizes that children can have it...The good news is they've come a long way in treating it. They have found that if treated early and aggressively, you can get it under control. I did and I was in pain for eight months before they even gave me a med that helped. Now I am pain free most of the time. You need to insist that they dx this and start one or more of the meds NOW. Your daughter has been in pain long enough. Her statements that she wishes she had never been born mirror my (and a lot of other) feelings after being in pain for a long time. Hugs to you both.
Many thanks for your replies and your support. We now have a date for her tests, this Wed 20th for flow tests and scans and Fri 22nd (july) for her bladder biopsy op. She is very uptight about them so I have got her a couple of pressies to help! I just hope that this time we can get a diagnosis and then we know what we are dealing with. At the moment I have been trying stopping various foods to see if this has an effect. We are on or rather off gluten at the moment but as yet no difference. The oestrogen cream did not help either and neither has the antibiotic, theres a surprise!Anyway I will let you all know how we go this week.
I really do hope this brings some answers for you! I assume she will be under anesthesia? If so, tell the uro you want them to do the distension while she's under (I actually had mine done while awake). I think they may need to do it anyway to get the biopsy, but not sure...
Good luck, good luck, good luck! I'll be thinking about you both! Let us know how it goes...
As I am writing this I am close to tears and I do not know how much more I or my daughter can take.
My daughter is 7 years old and she has been in constant pain for 8 months now. All her symptons are the same as cystitus but every time she has a urine test it always is negative. We have a great urologist in Southampton hospital ( in the UK ) he has tried lots and lots of tests and drugs but none have worked. She had 3 courses of trimethaprin, 2 courses of ciprofloxin, immipramine, oxybutinin, oxybutinin slow release, canastin cream, canastin with hydrocortizine, a cystoscopy, a urethral stretch, she has had herbs from a natrupath, we have tried changing her diet, and the list goes on.
We saw the consultant last week and he had put out a lot of emails to collegues across the world and he had some more ideas come back to try. She has been given her some oestragen cream as this has worked for others before and if this does not work she is to have another op, this time to take a biopsy of the lining of her bladder, even though last time he did a cystoscopy it all looked normal he said you can have IC hidden in the wall. He is also going to do a urine flow test.
She is in pain every time she pees and has sharp pain in between as well. She cries every time and some times can not pee at all. She is also being referred to a pain specialist and a phsychiatist to help her cope mentally with the pain as she is very depressed and she told me the other day she wished she had never been born! She has missed two thirds of this school year as well.
Anyway thankyou for listening and if anyone can offer any help I would be very very grateful.
yours depressed and now in tears Keren and Meg.
Dear Keren and Meg.
my heart goes out to you, as no one should have this unbearable pain, let alone a child, i have been diagnosed with UtI's and Cystitus,for years I dont know what the difference is, I know the pain is the same, excruciating! which ever it is. I almost drove myself to the emergency room a few nights ago, at 3am thank goodness I had some pain med's left over from my last infection, 2 months ago which saw me thru' the night. i do hope by this time, (as being a new member I cant figure when you posted). That something new and positive has shown up for you. Tell your daughter that I'm sure many many people send her prayers and best wishes.
Take care and God bless you both.
Sincerely.
Irena
Sorry For Not Replying Sooner But The Op Had To Be Cancelled As Meg Had A Cold. She Has Now Had Her Op It Was On The 12th Aug And Her Flow Tests Were On The 10th. The Flow Tests Showed Her Bladder Was Not Filling Up Enough And Her Flow Was Slow, Interupted And Not Enough (her Capacity Is 270mls And She Had A 50ml, 90ml And 170ml Test Result After 3 Tests). We Are Now Waiting For The Biopsy Result To See If There Is Anything Hidden In The Wall Of Her Bladder. I Really Hope They Find Something And Then We May Be Able To Treat Her. We Have Also Been Referred To The Pain Team At Southampton Hospital To Try Some Different Pain Relief But Still Waiting For An Appointment. Anyway I Will Post A Reply Next Tuesday As That Is When We Get The Results. In The Mean Time If Anyone New Is Reading This Or If Anyone Can Offer Any Advice Or Just Needs Someone To Talk To Please Contact Me Via This Forum As I Am Extremely Grateful For All Replies Or Help.
Sounds like a possible parasitic infection. Some parasites can go anywhere they want to. I would suggest you take that route before it's too late. What docs do in a case like this is use a shotgun approach without a firm diagnosis. I would definitely find a functional medicine practicioner in this case.
thanks for your reply. we had the results today of the biopsy and the bladder wall is all normal, so we are back to square 1! the consultant has decided to change her meds and try her on a stronger pain killer possibly and a different anti spasmodic instead of oxybutanin m.r. whilst we are waiting for the pain clinic referral. we did try black walnut which is for parasitic infection and she has also had a conventional med for worms, all of which have proved fruitless. I do appreciate all advice I get. many thanks
Keren.
Hi again
Just thought I would give an update. We have now tried the codeine and this has not worked either! We had a phone call from the pain clinic and there is now a 3 month wait to see a pain specialist! I can not believe that in this day and age a child of 7 in chronic pain has to wait 3 months to get some sort of pain relief help. We are using TENS on her at present but that is not helping yet but I have been told this can take time to work so we are plodding on. I have also asked the consultant for a change to her anti spasmodics but am still waiting for a reply. We have now decided she can not go back to school although I really wanted her to as it would take her mind off her pain but she is in too much pain at present. I have asked for home tuition until she gets a bit better.
Anyway if anyone can offer any advce I am always very grateful.
Hi everyone
Thankyou for asking after us. I have not been on the forum for a while as I have been very low with all this and Meg is still very poorly. It has been just over a year now and despite trying several more types of tablets we still do not know what is exactly wrong . Our urologist has now referred her to a collegue also at southampton but when we got the date through it was not until january! We were so desperate we paid £140 to see this doctor privately last week. He is a gastro specialist as well as a general paediatrition. He was very positive and he thinks she could have a bowel problem which is causing a referred pain in her bladder. He has put her on a course of senna as he thinks she has got " incomplete rectal evacuation " as although she has not got diahorrea or constipation, she is very windy and this is due to her not going enough when her bowels open. So far there is no change but he has told me to up the dose until she starts to go more and this should clear her lower bowel and maybe help her pain. If this does not help, then he said he would re admitt her to hospital for more tests but this time with a different set of doctors. Also she has been booked in for a MRI scan to see if anything else shows up like nerve damage. Anyway that is about it for now, we are still up every night until between midnight and one in the morning with her crying in pain and she is on home tuition so she is getting some schooling. Thanks for your thoughts and concern, I will let you know if there is any change in her condition, heck I will probably let the world know!!!!!
Love Keren and Meg xxxxx
Hi again
Just had a phone call to say they can squeeze us in tomorrow for a MRI so I will let you know the results soon.
thanks for your support Keren and Meg XXX
I'll bet the MRI comes back normal!! Has she been tested for food sensitivities or intolerances yet? You're taking the wrong path...If the MRI comes back negative have her tested with a ELISA food intolerance/allergy test and a stool pathogen test for parasites and dysbiosis...Best of luck and Happy Holidays....
Hi
Thankyou for your advice, we did see an allergy specialist last year and she said there were parasite casts in her stomach and gave us some medicine but this did not work. We also have tried stopping various food groups but so far no change. I know how great allergy specialists can be as they cured my son of a milk intolerance as he was constantly full of mucas and always coughing, conventional medicine failed us and he was cure by this lady. Unfortunately she had a heart attack and we had to see a different one. I did not find her quite so good and her opinion failed. So we went back to conventional medicine. We went for her MRI but she was in too much pain and could not lie still. We did have a half hour break and went back and tried again but she was still in too much pain. We have another booked for the 22nd of dec. If this does not happen we are booked in for a general anastetic on the 26th of jan to do it again. I had to phone the dr to say if the senna is working, which it isn't, and I am waiting for a reply as he said he would admitt her for more tests in hospital. I do not know if this will be before xmas so watch this space!
many thanks to everyone for your support ,
love Keren xxx
Hi again everyone
Well we are 14 months down the line but I may be seeing a small light at the end of a very long tunnel!!! We saw a new doctor today who is a bowel specialist and she was very thorough. She sent Meg for an x-ray of her bowel and took some blood for testing. When the x-ray was done we took it in to her and she looked at it. She said basically the incomplete rectal evacuation diagnosis is right, she is full of poo!
It stretches right through her bowel and up as far as her rib cage and beyond!
The doctor has put her back on the senna and said she will need to be on it a long time and in the mean time she is testing her for various conditions to see why she is bulking up like she is. Apparently the pressure from the poo is pushing on her bladder and making it hurt when she pees and we think the wind or gas that is coming off the waste is making her have the in between pain.
We are seeing her again on the 23rd of jan for results and the next step but if anyone reading this can offer any advice or share their experience I would as always be very grateful.
Many thanks for your help
Keren and Meg xxxx
Hi Everyone
Amazing news , my daughter is loads better. The senna has worked, it has emptyed her bowel out and her pain has pretty much gone except for a bit in the evening but it is early days yet. She cried tears of joy the first time she peed and it did not hurt, well actually we all did. I can not believe after 14 months of pain and 3 unnecessary operations we finally are getting better and it was not a bladder problem after all.!!!! I guess it was a bit of a red herring that she was actually still pooing every day yet we did not realise it was not enough and she had a huge backlog pressing on her bladder and loads of wind coming off it. So this is a lesson for anyone going through the same ; just because the pain is in the bladder does not mean it is a problem with the bladder! The doctor said she will always have a bowel problem and she will have to take senna for a long time but at least she is not screaming every time she pees and in between peeing anymore. Thankyou for all your help and advice and if anyone who is reading this wants any advice about what we have been thro' feel free to contact me on this page.
Thanks again Keren and Meg xxx
Re: Please Help My Daughter 
Re: Please Help My Daughter 
Re: Please Help My Daughter 
