This Page is dedicated to a brave little girl "Holly" and her brave mum " Tina".
A Message from Holly's Mum
I am hoping I will be able to contact someone that has come across this type of condition before. My 4 year angel of a daughter, became ill in July 2006, with serious bladder and bowel problems. She was in hospital for 6 weeks last September/October, and had many, many, horrible tests to try and find out what was causing her symptoms. One test showed she had a very enlarged bowel (esp. the large intestine) a very large bladder, and large stomach. She cannot tolerate solid food very well and has to have special milkshakes called Scandi-Shakes on prescription to take the place of normal meals. Her bladder also stopped working and caused very painful urine-retention, and now she has a catheter through her tummy, called a supra-pubic catheter (anyone ever heard of this?) Her bowel also doesn't work and she sometimes needs high-phosphate enemas to help her bowel move. I am doing most of the nursing myself, along with help from my wonderful partner. The condition she has is apparently very rare and the Doctor's are desperately trying to find a cause. Two conditions have been mentioned so far: Hollow Visceral Myopathy, and Eosinophilic Gastroenteropathy. I've never heard of either of these conditions, but if anyone reading this has ever heard of them, please do send me a message. In March 2007 we went up to see a specialist at Great Ormond Street Children's Hospital (GOSH) in London, the Doctor was lovely and tried to explain things the best he could. Holly had a Colonoscopy in July 2007, and she is going to be admitted to hospital again in August 2007 to have a manometry test (anyone know of this?). It is really a matter of waiting, trying medicines: Holly is on up to 7 medicines a day - They have included Calpol, Nurofen, Diazepam (none of which seem to touch the stomach pain). Movicol, up to 12 sachets a day. Sodium Picosulphate. Sulfasalazine. Cetirize & Nalcrom. Holly keeps having tests, and we are all just hoping & praying that she improves. Anyone reading this that has ANY experience with bowel conditions or bladder problems either from personnel experience or knows of someone else that has been through this, I would be so pleased to talk with you on here. It took a long long time to get the Doctor's to listen to me as I thought something was wrong from 4 weeks old. She also has an enlarged kidney on the left and also duplication of collecting system on the left. She also has had many urine infections, and seems to get infections of any sort very easily and can often be very sick with them, she also has a problem with her immune system. I am grateful that they are listening to us now, but had no idea we would still be without a diagnosis! Hopefully we will get the answers we are looking for as soon as possible, as Holly is going to be seen at GOSH. We have had a long wait for her appointments, so we have many questions still unanswered. It is not all about finding a Doctor that can help us, as hopefully Holly's Consultants at GOSH will do all they can. It would just be nice to have a chat with anyone at all that can help support Holly! I would like to meet other Mums/Dads/Carers that can relate to what we are going through. We are not sure if she will be well enough to go to school full-time etc. And this I find the worst thing...not knowing what the future holds. Thank you so much for taking the time to read this, Love Tina xxx
Holly was born the day after her due date by caesarean. I had to have a caesarean because I was very ill with Holly's pregnancy. I had a condition called Symphasis Pubis Dysfunction, which made my body produce too much of the hormone Relaxin. This hormone is usually released in labour, but I had too much of it in my body when I was only 4 months pregnant and it made the front of my pelvis split open. I was in a wheelchair for a year, and it took me another 3 years to recover: I had to walk with crutches, then a walking stick, and I was registered as disabled for 4 years. The condition has left me with a bad back, which I will have for the rest of my life, but at least I can now walk. I spent around £1,000 on Osteopatheic & Massage treatments, as the Physiotherapist made me worse. My back recovered enough to walk unaided in June 2006 and it was the following month, in July 2006 that Holly became ill!
I was also in and out hospital with severe morning sickness called Hyperemesis. I had to be on IV fluids to recover from the dehydration, because at times I couldn't even tolerate a teaspoon of water! I lost over a stone in weight while pregnant. I had scans every month to check how Holly was doing with this troubled pregnancy, and she was just fine; growing and developing normally.
From only 4 weeks old Holly had severe Colic pain and Constipation, which to me, seemed worse than normal. The Doctor's didn't listen to me and I was just told she would grow out of it in the coming months. Holly continued to have Colic and Constipation for years, not months. When Holly was only 21 months she suddenly had terrible tummy pain and we rushed her to hospital. For 5 whole agonizing days the Doctors said it was "just colic". I knew there was something more. On the 5th day we took her back to A&E and she had an ultrasound. It was then they discovered she had Intussusception. This condition is rare and she could have died from it within 24 hours and yet she had it for 5 days before anyone would listen to me! I was furious and felt badly let down by the Doctors. This condition makes the bowel "telescope" in on itself and causes a severe blockage. If left untreated the bowel can die and part of the bowel has to be removed by surgery. Thank God, Holly didn't need surgery and it was reduced by pumping a saline solution into her bowel to force the blockage to correct itself.
Holly did have a fairly good period from 2 1/2 years old up until 3 1/2 years old, but she always looked pale and very often had a swollen tummy (distension). Holly also caught an infection every month from 4 weeks old up until 2 1/2 years old, and was often very sick with them. She had perforated eardrums because of severe ear infections, bad chest infections and urine infections. We later found out that Holly also had a kidney problem, because her left kidney is enlarged and she has 2 tubes from her left kidney to her bladder, instead of the usual one tube.
Then last July Holly had dreadful tummy pain, so bad I called an ambulance. This was the start of our journey into discovering that all that "Colic" "Constipation" "Infections" were far more serious. And if I could say anything to all those Doctors that I saw from when Holly was only 4 weeks old: "I told you so".
The pain didn't last too long and by the time we reached the hospital Holly wasn't too bad. The nurses didn't know what had caused it, but said she probably needed to do a wee but was holding on too long (little did they know she couldn't do a wee because of a problem with her bladder).
This same, severe pain kept coming back, and it took another 6 weeks before Holly was finally admitted to hospital. In between bouts of pain Holly recovered quite well and she is such a good little girl, and so strong willed she didn't let it get her down. But because she had such a strong character the Doctors didn't take it seriously because "she looked too well". To look at Holly now, you would think nothing at all was wrong with her. I kept taking her back to A&E as the pain was getting more and more frequent. By this time I was going mad with worry because I just knew that something had been wrong all along. Holly became very ill in a Doctors arms, and from then, stayed in hospital for 6 weeks... Her bowel, bladder and stomach were so enlarged that it was unbelievable that she had done as well as she had to cope with all that. She is the bravest little girl in the world. If only they had done the tests sooner. The rest is ongoing...
Holly, you are Mummy's Hero xxxx
You are my hero, you are my angel, you are Mummy's best friend, you are the person I will do all I can for, whatever it takes.
Mummy is often helpless when you are in pain.
Mummy is often the baddie when trying to give you medicines.
You are too little to realize that I am trying to help, but that I can't explain that to you just yet.
Mummy wants to tell you that "it will be ok, and that it won't hurt",
But Mummy knows that it will sometimes hurt, and I have to hide my helplessness when I am trying to comfort you.
Mummy wants to take all your pain away and make everything better,
But Mummy knows she can't.
What Mummy can do is cuddle you,
and kiss you,
and protect you the best she can,
and hold you and try my very, very best to do everything in my power to get you through this.
Mummy can be your rock and fight for your safety.
Mummy can try and talk to as many Doctors and Nurses that will listen (and even the ones that won't).
Mummy is your voice, and I will scream at people until they listen because you can't,
you are just a little angel, Mummy's little angel.
An angel with invisible wings (but mummy can see them).
Holly, you have angels all around you, I truly believe that.
Children are the most precious little gifts on earth, they are our future and do-not deserve to hurt.
I need help to comprehend why this is happening.
I get all the help I need looking into Holly's eyes, and listening to her giggle even when she is going through all this.
You are Mummy's hero Holly, and I hope to be yours xxx
