Our Pal - Bethany H
C/O 5 Helmores
NB: this is a forwarding address for the Pal, we do NOT disclose home addresses
- Parents/Guardians - Debbie and Roger
- Interests - Beth loves face masks, pop figures, YouTube watches Zoella,Connor Franta and Pointless blog, Plays Xbox Minecraft ,arts & crafts,reading. Make up & Yankee candles . Favourite artist is Olly Murs. She loves giraffes . Please don't send food as she's unable to eat, but if it's making food it's fine as she loves cooking/baking.
- Favourite Colour - Orange
- Able to read? - Yes
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - No
Siblings - aged 3 to 16 wishing to receive post
About - Bethany H
Story written 2014
Bethany first became seriously ill at the age of 15 months when she suffered from a ruptured intestine which was unnoticed and led to peritonitis. Following surgery to rectify this at Great Ormond Street, Bethany became one of the youngest patients to have her appendix removed at only 17 months.
In the months after Bethany’s operations she continued to suffer excruciating pain and suffer from severe distension of her stomach. Initially this was an allergy to milk, but due to the way Bethany’s combination of conditions attack the body it became apparent that milk allergy was only the beginning. In January 2011 Bethany’s doctors decided to feed her via a feeding tube for six weeks in order to allow her body to rest and then try to reintroduce food on a piecemeal basis. Unfortunately, three years later, that has still not been possible due to her suffering allergic reactions to any food that enters her stomach. Bethany’s body decided it didn’t like the feeding tube or button devices inserted and in two and a half years she went through several buttons and two gastric pegs. Whilst investigating the cause of this it was discovered that Beth also has dysmotility, meaning her stomach doesn’t empty quickly enough and the easiest way for it to leave the body was through her peg site causing continuous infections. The decision was made to feed her via a jejunostomy, so now the feed bypasses her stomach directly into her bowel for 22 ½ hours a day.
After intensive testing and countless visits to specialists, Bethany was included into a research clinic at Great Ormond Street into Ehlers Danlos Type 3 and the connection with gastro disorders. As a result of the testing it was discovered that Beth actually has Type 6 Ehlers Danlos of which there has only been 60 reported cases of worldwide and of those 60 Bethany is the only one that Great Ormond Street are aware of who has the stomach problems as well.
Bethany is currently in hospital as she is now having to have TPN (fed IV).
Despite all of her health problems which leave her in pain and spending lots of time in hospital or confined to bed, Bethany will always manage a smile and a few select wise words to cheer you up when you are down. She is entirely selfless and is always looking for ways to help fundraise in order to try and make other people’s lives as comfortable and enjoyable as they can be.
Update 25th January 2017
Bethany had tests on her bowel in November/December and we are waiting for results.
She has had a tough time lately with pain at fatigue, she still has tutors come to the house so she can still be educated which is good as she can only manage an hour a day. Bethany is not behind in English or maths which is excellent, she is a quick learner. Over Christmas Beth was poorly with throat and chest infections and we ended up in A&E Christmas Eve because she had a temperature, so we had to be on the safe side because of her line. Thankfully it wasn’t to do with her line and she just needed antibiotics for the infections, other than that Beth has been the same: up and down.
Update 14th November 2016
We attended an appointment with a group of Beth’s specialists yesterday in order to discuss the next steps in Beth’s treatment. It was not the outcome we had hoped for as they are very nervous about taking the steps that are needed to make Beth’s life more comfortable.
Beth has been having terrible bouts of pain which are unexplained as her bloods are unusually within “normal” (whatever that is) limits. One thing that was found by chance is a level in her blood called carnitine which has been extremely low. This is not a part of the blood that is normally tested after the Guthrie test. This was tested after a recent clinic by chance due to the troubles experienced controlling her sugar levels. She is now on a supplement in order to increase the levels but this can take up to 3 months to start showing any effect.
At the moment of typing we are still searching for a Dr. that will see her with her pancreatic divisum, as whilst this is far from rare in adults it is virtually unheard of in children. We have been waiting 9 months now for this referral and still we are unable to find a Dr. on the NHS that we will see her.
As a result of this delay and the need to get Bethany in a position where she can start to return to school (she has been unable to attend since March) we are going to need to find a private consultant.
Before any decision is made on surgery for Bethany she needs to go into hospital for a weeks worth of tests, to see if there has been any sign of the intestine trying to recover from the failure it suffered over two years ago.Considering her colon has collapsed we are pretty sure there is no sign of recovery.
The tests involve her having a special catheter to measure the movement of her bowel either inserted through her PEG site (the hole near her belly button). If they’re unable to do this then it will have to be inserted into her nose and through her stomach into the intestine. Once she’s recovered from this she will have to have a tube (not the same one) inserted into her rectum in order to measure the large bowel and to see how bad the collapse and inflammation that showed up on her recent scopes is and whether the colon is adding benefit or causing more problems and needs to be removed.
On a positive note we have finally after lots of pushing by the school and specialist care team, managed to get a tutor to come in 3 times a week and tutor for maths and English Also one of the LSA’s from the school to come twice a week in order to assist Beth with the more practical side. Beth is loving being able to start learning again and is mega proud of the fact that she has a reading age almost a year above her physical age.
We have a date now for Beth to go into hospital, 30th November, she will be in for 10 days for these tests to be done. We have just had a few days at Little Havens Hospice chilling, which is nice. We are off to Disneyland Paris at the weekend thanks to Little Havens putting our name forward for this trip. Beth can’t wait. After that she will be in hospital, so it’s a much needed trip.
Follow Beth’s fund on Facebook for regular updates.
Update 20th September 2016
Hi all, Beth has been much the same as last month, up and down. She had scopes done during summer holidays, which have shown more problems, one of which is big; her large bowel has collapsed and is showing distal colitis. Beth has been put on more meds because of the colitis. She needs to be seen again by the motility team about the colon, but it does explain the pain she is getting in her back and bottom. We are still waiting to see a pancreas specialist, who is willing to see her as most only deal with adults. Bethany’s TPN calories have to be upped as she’s not gaining weight. Everything is tiring Beth out. If she does too much she becomes unwell, dizzy, feeling sick and drained. She is still unable to go school, but is getting a tutor, hopefully soon, she said earlier “I do more maths then English” lol. She hates English, as it’s a lot of writing/typing which she can’t do a lot of, as her hands get tired and painful. Maths she loves (don’t know where she gets that from). Beth is looking forward to meeting other families at the Chessington weekend.
Thank you so much Post Pals for organising this weekend and all the other bits you do for our children.
Update 19th August 2016
Beth is still up and down. She was in hospital a few weeks ago with another flare of pancreatitis, we are still waiting for the specialist appointment and it’s taking far too long. Beth has good days and bad days – more bad than good at the moment. She’s had a busy few days as her older brother passed out as a grenadier guard at Catterick, which was amazing. Then we stayed at a friends house for a few days. Now we’re back home she’s struggling as she’s overdone it. It’s not right a bit of fun can cause this, so unfair. We are at hospital next week for scans & scopes – more issues. We are hoping the scope doesn’t cause another pancreatic flare. We are not sure about Beth going back to school in Sept. We have to have a meeting, as before when we tried upping her school time, she became unwell and very tired. Sometimes she’d be there for 20 mins and it’d be too much, too many people, too much noise, pain etc.
Update 4th May 2016
It has been a hectic couple of months to say the least, with lots of out patients appointments and then the weekend before last, Beth’s pain levels started to increase significantly, resulting in her being admitted to hospital on the tuesday with another bout of her latest issue, which is pancreatitis.
Beth has been diagnosed with pancreatic divisum, which in itself shouldn’t cause too many problems.But when you add it into the mix with everything else that Bethany has, it has meant 6 bouts of pancreatitis in just under 2 years.This has not been seen before by her specialists, in all their years of medicine. There is no doctor in the UK that specialises in the condition in children, making it very hard, if not impossible to get advice.
Her surgeon in London wants to carry out a procedure that involves a lengthy operation, that has only been done on a child once and never on anybody with the extra intestinal problems that Beth has.So there are still lots of questions and checks to be done before a final decision is made. The operation will require a 2-3 month hospital stay for recovery and then more recuperating when home.
Beth was allowed out of hospital at the weekend, still not able to do much, as her pancreas is causing a lot of pain, she’s on a few pain medications but they are not always working.We are still waiting for a call to discuss exactly what the surgeons want to do. In the meantime her pancreas levels are on the way up yet again, if they are she will have to go back into hospital, will update if this happens.
Update 28th February 2016
Beth had her new Hickman line put in a week ago! This means she now can go swimming at Little Havens. Beth is still struggling with sickness and pain. She is also suffering with dehydration even though her TPN bags are 4 litres and she has 3750ml of that every night. She is getting tired very quickly and we just don’t know what’s going on with her at the moment. No one seems to be bothered or have a clue what’s going on, which is hard for us all to deal with .We have asked for a transfer of care to another hospital, so fingers crossed this happens.
Beth had her 12th birthday, so thank you everyone who sent her cards and gifts it cheered her up.We also told her about what Post Pals are planning, she is so excited as her favourite animals are giraffes.
Beth is trying school but it makes her very tired, causing her headaches.Thankfully OT is going in to try to give advice on what Beth needs, and to try it before phoning me to collect her.As you can imagine she goes in for an hour sometimes , then I’m called after 30 mins ,so by the time I’ve got home it’s time to go back. It is what it is and we deal with it as best we can.
Thank you again for your hard work in making Beth smile, which puts a smile on our faces.
Update 3rd January 2016
Firstly like to say thank you to everyone that sent Beth cards and gifts.
December has been a funny month. Beth still hasn’t been at school as she’s been struggling with pain and tiredness to the point of being sick! School have been fab and they have sent her a 1-1 to the house to do some work, but even that is a struggle for Beth at the moment. Beth has had lots of sleepless nights again with pain/sickness and feeling faint, we are hoping for an explanation for this, when we see her London consultant. We are still waiting on the genetic test for her genetic pancreas results and we’re hoping it will answer why her pancreas keeps playing her up, but it’s a waiting game. Beth has so many hospital appointments in January, 1 of which is for her new Hickman line to be replaced and PICC taken out. This should be done the 8th Jan, but at the moment Beth isn’t feeling great and has sore throat, so we’re hoping it clears up ASAP.
Update 2nd December 2015
Beth spent three weeks in hospital due to having an infection around her line (not in her line). But because of the type of infection it was, they decided they would remove the line and replace it with a PICC line until January, when a new Hickman line will be placed. She needs to have another two weeks of antibiotics just to make sure the infection has gone. Beth’s pancreas decided it would flare up, making her more poorly than the infection. The doctors have now decided it’s not after operations that it flares up, so it’s anything that can trigger it. They have done some genetic testing to hopefully find out why. She also had a scan which shows the pancreas is not right, so we have to wait for results before she is referred to a specialist. Her pain has been up and down, but the local pain team are fantastic, although she’s feeling sick more and more lately. Her bloods are all over the place and this infection has hit her hard, tiredness is a big thing and anything she does makes her so tired. Bethany’s school has been fantastic and has done a plan for her 1-1 to come to the house and do a bit of work with her if she’s up to it. Then when she’s up to it, she can go to school and see her friends for an hour. When school and us feel Beth is ready for lessons again, then she can do an hour or so a day, hopefully this will be soon, as she loves school and misses her friends.
Update 13th November 2015
Beth has needed to be admitted to her local hospital because she has a pocket of fluid under her Hickman line, this has given her an infection and so she will be in hospital for another seven days, so they can give her IV antibiotics x
Update 22nd October 2015
Bethany started senior school which is great, she is doing half days as she’s finding it very tiring. She loves it there and has made new friends. However, her health is a roller coaster at the moment, both good and bad days.
Can everyone check they have the new address for Beth which was changed a while back, as post is still being sent to old address, thank you.
Update 5th September 2015
Bethany is still suffering and we will be trying something new at the end of September to try and treat her inflamed bowel. Beth has said she will try it once, but if it hurts, then no more. As she’s 11 years old we gave her the choice because it’s her body.
Bethany started senior school on Friday and everything has been put in place for her, including a 1:1 teacher who seems ok. Beth will only be doing half days because she gets very tired.
Thank you to everyone that has sent her letters/cards and gifts.
Update 23rd July 2015
Bethany still isn’t great. She should have had surgery to remove her large colon but during surgery the gastro doctor decided not to go ahead. We are not sure why as Beth still has same problems as before. Whilst in hospital Beth started having issues with her sugar levels and so now we have to carry an emergency kit with us until she goes in for tests. Beth had scopes that showed her bowel is inflamed but we have to wait for her doctor to come back from holiday for a plan. In the meantime Beth is taking things day by day, some are good and some are bad, but she still smiles.
Update 1st May 2015
Bethany managed to do an hour each day at school for a few weeks until Tuesday when she ended up back in hospital due to pain in her bowel. We are waiting for surgeons at GOSH to come up with a plan. At the moment they can’t keep the pain under control so we have a very grumpy Beth.
Update 7th April 2015
Beth is still up and down and has been in hospital for 12 days as we couldn’t control the pain.
Bethany donated Easter eggs to the underprivileged children in our area which was great. It’s Easter holidays now so we’re doing as much chilling out as she can before going back to school for an hour every other day. Hopefully we can build these hours back up.
Update 11th January 2015
Bethany had a good Christmas and thank you for all the post and gifts sent for Beth and Rebecca. We went to Harrods with the respite team which Beth loved and then we had a quiet Christmas.
She went back to school for two days and then started feeling unwell, so she has stayed in bed for the last few days and has only come out of it to go and see the doctor. They don’t know why she’s in pain and suffering at the moment, but hopefully we can get her back in to school tomorrow, just so she can socialise.
We have lots of appointments coming up and hopefully this year is a better year for Beth and someone out there can help her.
Update 1st Deceber 2014
Beth isn’t great and is still up and down. She is struggling with just doing half days at school. There’s lots going on but still no answers.
Beth has a Lego advent calendar as she’s unable to eat and she is looking forward to getting our Christmas tree at weekend.
Beth would like to thank everyone for the post sent to her and her sister, as they both love receiving post.
Update 29th October 2014
Beth is still not great and tpn is still all over the place.
We have been away for a holiday and Beth was struggling with that but has tried to join in even though in pain and very tired.
Beth is going to try her first full day at school on Monday – hopefully she can cope but if not then at least we have tried.
Update 9th October 2014
Bethany is still struggling with school but manages half days. I’m glad to find out that she still manages good grades, despite the time she had off while in hospital.
This month we find out what respite hours we get as it goes to panel. Beth’s pn has also been changed yet again which has given her eczema. Roll on appointment with a consultant!
Update 28th August 2014
We have been home a few weeks now. We settled quickly doing all tpn and her other medical needs, but Beth still isn’t right and the pain in her stoma is getting really bad again. We saw her tpn doctor the other day but all they seem interested in is sorting her tpn out right now, as lots of changes need to be done and she’s lost weight. Our concern is that too, but so is this pain which needs to be dealt with. We know it’s her gene causing problems with the bowel (it coats it and stops it working) and considering not much bowel works now we are concerned it will stop working altogether. So we are waiting for local to get back from holiday.
We are still waiting for our respite as no one seems to want to deal with tpn or be line trained and the next panel meeting is October. Beth is hopeful in going back to school even if it’s just for a few hours a day and we have a meeting next week. Until people are trained in line safety I have to be with her, but Beth needs her space as well as being with us, so hopefully they can get in there quickly and train all Beth’s care people at school.
Bethany wants to say a massive thank you to everyone that sends her post. As a family we appreciate everyone’s support in keeping Beth smiling.
Update 29th July 2014
Beth now has a hickman line and is on TPN. She has so much going on with her poor body not being able to tolerate bowel feeding. She spent 82 days in hospital but we are now home and trying to deal with the big change.
Update 5th July 2014
Bethany is still in GOSH but hopefully not for much longer. They have been unable to feed her into her bowel so she will be going home on TPN for bowel rest and we will be coming back to hospital in three to six months’ time to retry feeding into her bowel. We are just waiting for a central line to be put in and TPN training.
Post Pals does an amazing job, thank you.
Update 3rd June 2014
Due to Bethany’s recent acute episode she has undergone an ileostomy and now also has separate jejunal and gastric stomas. She is also currently on TPN (total parental nutrition fed directly into vein). Before they discharge her from hospital they will try and reintroduce feeding into the bowel. If this is not successful then she will have to remain on TPN permanently and in hospital until alterations to the house can be made.