The Chronic Crohns Campaign UK. ( TCCC.UK ).
The Chronic Crohns Campaign UK - Why We Are Here !!!
TCCC.UK & TNHC.UK Campaign Literature.
The Chronic Crohns Campaign UK - Other TCCC.UK Contacts
TCCC.UK - Funds To Kings College London.
TCCC.UK - Action Medical Research details.........
TCCC.UK Campaign News ,Updates and Success !!!
The Chronic Crohns Campaign UK- The Breaking News.
TCCC.UK &The 3 Natural Alternatives In Sarah's Story
The New DNA Crohns Vaccine @ Kings College London.
TCCC.UK & Aloe Vera - Nature's Silent Healer. Books
TCCC.UK Raising Awareness - Press Coverage 1996 to 2006.
TCCC.UK MAP More Breaking News !!!!!!!!!!!!!!!!!!!!!!
Sarah's Crohns Success Story From 1989 to 2006.
Sarah's Crohns Success Story From 2001 to 2006.
Over 90 Degrees Still Does Not Kill Map Bacteria In Milk.
Tim Page - My Side Of The Story In All This Campaigning.
How To Order Aloe Vera, As We Do, At A Lower Price In The UK.
How To Get A Glyconutrient Powder Here In The UK
"Give Us A Quid Or Two" -The DNA Crohns Vaccine Appeal
PARA'S Medical Advisory Council
PARA'S Scientific Advisory Council.
A Message To Internet Hackers / Spammers !!
In Loving Memory Of Hadge Elliott 1956 To 2005.
The New DNA CrohnsVaccine Summary 2006.
TCCC.UK Consultation with DEFRA in 2002 & 2004.
The Chronic Crohns Campaign UK Press Info 1996 to 2006.
The Orkney Islands Crohns & U.C. N A C Group
Glyconutrients - What Are They ?
More On Glyconutrients - The 8 Sugars That Heal.....
Birmingham Contact For TCCC.UK - Stuart Morris IIHHT ICHT dip
MMR = Crohns or Autism ?
How To Get Aloe Vera & Other Aloe Vera Items Outside UK.
Other People'sTestimonials.........
Crohns & Contraception.
More On MAP - The 2 AntibioticsTreatment By Prof JHT.
Other Interesting Natural Health Documents.
More On The Bacteria MAP - 2
Scottish News On Crohns
More On Fluoride
TCCC.UK & The BBC
Baby Milk - The FSA Update December 2006.
Prof John Hermon Taylor's New Update In March 2008.
Christmas 2007 & New Year 2008.
Crohns Sufferers - Some National Figures @ 2006
Crohns Disease By Eye Online
Intracellular Pathogen Group/St George's University London.
The Italian Crohns Campaign Connections.
Dr Ira Shafron M.D
About PARA
TCCC.UK Photos.
For Jewellery Findings & Supplies In Tunbridge Wells, Kent.
A Friendly Ileostomy Councillor For Contact & Advice.
A Memorial Page To My Grandad Who Inspired Me.
Crohns & Food Intolerances & Illness.
TCCC.UK Petition To The UK Prime Minister + Another Petition
DrugWatch Check Them Out...
Crohns Research or IBD or IBS Stories In The News
Prof John Hermon -Taylor On You Tube & TV 2008..
Support Our New DNA Crohns Vaccine Fundraisers.
Further Water And Milk Press Coverage.
Can MAP Cause Ulcerated Colitis, As It Does Crohns..
TCCC.UK - Why We Are Here In 2008, To Help & Advise You.
TCCC.UK - Announcements In 2008.
Useful Addresses For Complaints On The NHS.
Hannah's Story - from 2006 to 2008....Ongoing.
Prof John Hermon -Taylor Updates In 2008.
Scientific Papers On IBDs.
Contact Information for The Chronic Crohns Campaign UK
Links for The Chronic Crohns Campaign UK
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Hannah's Story - from 2006 to 2008 Ongoing.
Hannah’s Story The Story So Far……October 2006 – Hannah (10 years old at the time) was taken to her GP reporting some abdominal discomfort and a sore throat. Hannah had three or four bouts of tonsillitis over the previous fifteen months and each time was prescribed a course of antibiotics, but each time the sore throat returned.
November 2006 – Hannah was appearing to lose some weight and was feeling lethargic. She was taken to her GP again who decided to refer her to a Paediatric Consultant at a local hospital. The appointment was not until early January 2007, so the family decided to take a fortnight’s holiday in Sharm El Sheikh, Egypt. Hannah ate well on the holiday but continued to lose weight. Visits to Luxor Temples, the Pyramids and the Valley of The Kings were a great adventure for them all and seemed to keep Hannah going.
In the second week of the holiday, blood started to appear in Hannah’s stools. Naturally they were all worried but tried not to let it spoil the holiday. Hannah’s appetite started to decrease.
January 2007 - Shortly after the visit to the Consultant Paediatrician, Hannah was diagnosed with Crohn’s disease. Her blood inflammatory markers were raised and she was showing marks on her legs (called Erythema Nodosum) and her bottom was sore with a perianal skin tag that appeared to be red / inflammed. Hannah’s weight was now below the 50th centile whilst her height was between the 75th and 91st centile.
February 2007 – Hannah was put on an exclusion diet of liquid nutrition which was milk protein based (tested for MAP?) and came in the form of cartons. The goal was for Hannah to consume 6-8 cartons per day. Hannah found the cartons dull and unappetising to take and getting the required amount down her each day was hard going.
Easter 2007 – After 8 weeks on the drinks, Hannah showed a response, regaining weight and energy, and her blood inflammatory markers returning to normal. The family hoped things were getting back to normal. They took Hannah to Disneyland Paris with a friend to reward her for her bravery, but unfortunately toward the end of the holiday Hannah started to relapse with loss of appetite, abdominal pain, diarrhoea and some blood in her stool. Her inflammatory markers were raised again and her parents put her back on the drinks for 2-3 weeks. This time she showed no response to the drinks and her parents decided to admit Hannah to hospital.
Steroids were commenced and Hannah quickly responded to them and spent nearly a week in hospital, by which time normal appetite and weight gain were returning and the other symptoms started to reduce.
June 2007 - In mid June 2007, Hannah went to see two hospital consultants, one a surgeon. At this meeting, options for further investigation were discussed. The family rejected a colonoscopy in favour of an MRI because MRIs can give a better overall picture, are non-invasive, do not require full anaesthetic and do not carry the same anticipatory fear and risk of surgery. As Hannah had some serious allergies and as she had lost a pet to anaesthetic a few months before, the risks, both real and psychological, of going under full anaesthetic given the death of her pet rabbit and the potential for allergic reaction made the MRI approach the far better option.
The Consultant Paediatric Gastroenterologist leading the meeting agreed that this was an acceptable way forward to all. It was also agreed to put Hannah on Azathioprine although subsequent tests showed she could only tolerate a very low dosage of 25 mg per day.
At this meeting the Surgeon also did a little sales pitch about stoma’s and colostomy bags as if they were the best thing since sliced bread. This raised a red marker with Hannah’s parents about where he was coming from, a red marker that would be raised again later.
July – September 2007 – Hannah returned to a good quality of life and normality, reducing her steroid intake in the process. In August 2007, they went on a family holiday to the South of France and life was very much back to normal for all. On return from holiday, Hannah visited the Consultant Paediatrician again, looking well, and was greeted with the question "so is Hannah doing better or is this just the effect of a Summer Holiday?" The comment seemed strange, negative, insensitive and inappropriate, but nothing more was made of it at the time.
September 2007 – On 17th September 2007, Hannah underwent a general abdominal MRI. The results of this first MRI were not presented back to the family until 11th January 2008. An appointment on 17th December 2007 to review the first MI had to be cancelled because it was Hannah’s Mum’s due date for having a baby. Two weeks before the baby arrived at Xmas 2007, the general Paediatric Consultant saw Hannah and her Mum again and it was quite clear the tone and nature of the doctor / patient relationship was changing. The Consultant Paediatrician clinically stated that "Hannah is not well, so we are going to do surgery and give her Infliximab". Mother and daughter were left dumfounded by the announcement, when Hannah was feeling much better, had reduced her steroid intake significantly, was unsymptomatic and enjoying a good quality of life. Mother and daughter were left to break down in tears in the corridor afterwards, two weeks before the new baby was due.
What was so dumfounding was that it had been six months since the first MRI had been agreed and yet the family had no formal MRI feedback of scientific information or detailed presentation of treatment options on which to base any decisions.
January 2008 - Hannah’s Father went alone to the hospital to receive feedback from the first MRI. Hannah’s Mum was at home looking after a new baby and the Government had issued a guideline not to take children into hospital because of the Christmas Vomiting Bug, so Hannah was not taken along. Only the Surgeon was present at this meeting. The Paediatrician and lead Consultant did not attend. The meeting on the 11th January 2007 with the Paediatric Surgeon started badly with the Surgeon criticising Hannah’s father for following government guidelines and not bringing Hannah into the hospital. This raised another red marker with Hannah’s father about the surgeon’s cavalier attitude to hospital bugs.
After Hannah’s father managed to calm the Surgeon down, the focus switched to the MRI pictures. It became quickly clear that the surgeon was struggling to interpret anything meaningful from the MRIs because they had been done to an insufficient level of detail and also interpreting such pictures was outside his area of expertise and comfort zone. The meeting was concluded with the surgeon declaring that another MRI would have to be done to a greater level of detail. Hannah’s father agreed to this and the meeting ended.
February 2008 – Around this time, the Consultant Paediatrician put Hannah on an investigational use of Metronidozole which had some benefit in the perianal area but had to be discontinued after 25 days due to side effects of nerve tingling in the fingers and toes.
It was around Feb 2008 when Hannah’s parents discovered Tim Page’s website and got in touch with both Tim and Professor John Hermon Taylor for some advice. It was becoming clear that Hannah’s current medical team had no viable solutions for Crohn’s disease and were proposing to use Hannah as a surgery and pharmaceutical guinea pig and saw the ultimate conclusion of a stoma and a colostomy bag as a "good thing for children with Crohn’s". Their list of colostomy bag victims was already long.
It was also around Feb 2008 when Hannah’s parents started voicing their concerns about the knowledge, expertise, practices and procedures that they were encountering from the current medical team with the Consultant Paediatrician. It was at this point, after "treating" Hannah for over a year, that the Consultant Paediatrician admitted having no expertise in Crohn’s and was "lucky" to see five Crohn’s patients in a lifetime.
This was devastating news to Hannah’s parents who up until this point had put all their faith and trust in the Consultant.
March 2008 – Hannah underwent a repeat MRI on the 11th March 2008. Two days later and before Hannah and her parents had received any detailed feedback on the 2nd MRI, they received a pressurising letter from the Consultant Paediatrician urging Hannah to undergo surgery.
It was clear something was going to have to change. Around March 2008, Hannah’s parents started giving serious thought to Sarah’s alternatives, but having already been through a bad experience with "quacks", they were sceptical like most people are at first about alternatives.
In the meantime, letters and emails began flying backwards and forwards between Hannah’s parents and the hospitals. They had still not received a formal written report for the two MRIs nor had any of the questions they had submitted in writing answered and were becoming worried about the intentions and agenda of Hannah’s current medical team.
April 2008 – An appointment to feedback the results of the second MRI was scheduled for Wednesday 16th April with a date for endoscopy / colonoscopy of Friday 25th April 2008 pre-arranged seven working days later. Whilst Hannah’s parents wanted to hear feedback and results from the long awaited MRI, they became increasingly uncomfortable about the way this was being set up with a "fait accompli" of surgery 7 days later. Their assessment of the surgeon was that he would seize the opportunity during colonoscopy to declare "emergency surgery powers" to perform "concomitant surgery" that could result in incontinence leaving Hannah and her parents no option but to put a bag on against Hannah’s will and against her parent’s wishes.
At this stage, Hannah had been off the steroids a few weeks now and was doing well on her homeopathy remedy and Bee Propolis and Manuka Honey supplements. Hannah’s parents now wanted a 3 month observation window given the good progress that was being observed very quickly on just a couple of alternative remedies. Hannah’s parents wrote back to the surgeon stating that he should not pre-book surgery as a "fait accompli" but simply meet with them and Hannah to discuss any findings and proposals and give them time to consider. The surgeon wrote back that he was not happy to cancel the surgery slot.
This was the final straw for Hannah’s parents and Hannah. They had been increasingly pressurised for 3 months now, without presentation of scientific facts and data that had been requested. It was time to find a new medical team.
After some research into alternative medical teams with specialisms in Crohn’s disease, Hannah’s father put in a written request to Hannah’s GP for her to be referred to Guy’s / St. Thomas’ Hospital Trust in London. From April 1st, 2008, you can ask to be referred to an expert of your choice anywhere in the UK.
Because of the surgeon’s refusal to heed the request to not pre-book surgery before the meeting and until the facts had been presented and considered, the meeting got cancelled.
The referral was underway and as far as Hannah and her parents were concerned, they were now waiting for a 2nd opinion.
Unfortunately, the pressure from the old hospital continued unabated. A long withering letter was sent to Hannah’s parents by a Medical Director stating the obvious about Crohn’s disease, putting further pressure on for surgery and making thinly veiled threats about potential further action if the family did not comply.
Hannah’s parents simply wrote back stating the family’s right to see a written report of findings, proposals, risks, benefits and a consent form (they never sent the consent form despite being asked at least 5 times for one) and requesting to then be allow time to reflect without pressure as per NHS guidelines on what a patient has a right to expect.
On April 29th, 2008, Hannah’s parents finally received a letter from the Surgeon setting out detail of the two MRI reports and attempting to answer some of their questions from months ago. The surgeon’s letter was not on NHS letterhead and was dated 29th April, 2007?
The letter spoke volumes about the real agenda that had been going on behind the scenes. It was quite clear that they were proposing to put Hannah through a range of surgeries and chemotherapy using a drug called Infliximab which is untested and unproven in children, with the highest adverse reaction record according to the latest FDA report figures.
It also became clear from this letter that the surgeon held out little hope for the success of the proposed surgeries and that a stoma and a colostomy bag were almost an inevitability from his proposed "management plan".
Now it became clear to Hannah’s parents why the surgeon had eulogised "the bag" at previous meetings. It was clear that he thought this was the answer to Crohn’s disease. There was no mention of the risks and complications of a bag, the psychological impact, loss of a normal love life, never being able to enjoy a toilet visit in the normal way, nor that Crohn’s can reappear anywhere in the alimentary tract nor that a vaccine for Crohn’s is only three years away. There was also no positive acknowledgement that anti-mycobacterial and other more natural remedies such as Sarah’s Alternatives, have a good track record of actually bringing about full and lasting remission in Crohn’s disease.
May 2008 – Hot on the heels of the surgeon’s letter, which Hannah’s parents had waited 10 months since the original agreement to do MRI investigation, another letter arrived from the same hospital Medical Director as before, acknowledging that a referral was in motion, but still badgering Hannah’s parents for a meeting and making threats about "legal obligations to the provision of care and the protection of children". This letter was copied to Senior people at the other hospital in the Trust with no respect for the confidentiality of Hannah’s information.
This placed yet more stress on Hannah’s family to respond to yet another letter (however, the majority of the letters that the family had previously sent to the hospital had never been responded to!). The family’s reply stated many of the deficiencies of service from the current medical team in terms of their conduct and capability, made it clear that the referral was in motion and asked once again that the badgering and harassment stop.
In the meantime, Hannah continued to respond well to the homeopathic treatment, eating well, and sitting her SATs in full. She was in year 6 Primary School and good SAT results would help her get in the right stream at Secondary School. Hannah got some good news also that she had been accepted to the Secondary School of her choice. The whole family were delighted.
Hannah’s parents had also learnt a harsh lesson about placing too much faith and trust in Orthodox medicine which clearly didn’t have the answers for Crohn’s disease. They started to embrace more of the alternatives that had helped Sarah to make a full recovery.
Hannah’s parents ordered the same Aloe Vera drinking gel and Glyconutrient that Sarah had taken to get well. Towards the end of May 2008, they also added a probiotic tablet once a day, containing 6 "good bacteria".
June 2008 - After only a month on taking all Sarah’s alternatives plus the Probiotic6 and homeopathy, Hannah reported that she was feeling much better and increasingly so, day by day, after only a short space of time on all the alternatives together. She is no longer experiencing any Crohn’s symptoms, has been completely off the steroids 3 months and completely off Azathioprine 2 ½ months. her achiness in her joints caused by the steroids and discomfort in her cartilage caused by the Metronidozole have improved greatly since she started taking all the alternatives also!!!
Why Are The Alternatives Working For Hannah Where Standard Protocols Don’t Work?
Aloe, Propolis and Glyconutrients all have a strong, positive effect, the science tells us, on rebuilding a strong, healthy immune system. The Probiotics provide additional help by "crowding out" the bad bacteria in the gut with good bacteria.
Aloe, Propolis and Glyconutrients all have very special nutritional compounds explained elsewhere in this website which enable, over time, the immune system to take back control of the situation.
Hannah and her parents have no doubt that her illness came from contaminated dairy produce. Hannah was a big fan of children’s yogurts right through her childhood and has almost certainly been exposed to significant amounts of MAP from an early age. The proof of this is that Hannah’s Grandma has pictures of her at 5 years old with the same Erythema Nodosum marks on her legs that reappeared 5 years later when she had her first Crohn’s flare.
The MAP incubated for at least 5 years in Hannah’s body before triggering the first flare. Hannah’s parents allowed Hannah to eat these yogurts through her childhood in the belief that because they were pasteurised, they were safe. With the alarming increase of Crohn’s disease in children, we know that any dairy product that has not been thoroughly cooked or boiled may not be safe.
Hannah and her parents are very hopeful that the Crohn’s vaccine will come to market as soon as possible for those who don’t have time/money on their side to explore the alternatives.
*****
I would like to thank Hannah's parents for writing their daughter's story so far, for this Crohns campaign & this website, having all been through so much stress & only what I could term a complete nightmare, in trying to protect their daughter and give her the best possibility of good health and a chance in life, certainly not with the help of those in the medical world, that should know far better.
Long may Hannah's health improve, for the future, and for the quality of all your lives, always here to help, support & advise......
Tim Page.
Picture Below Shows A Crohn's Sufferer
With Erythema Nodosum. |  |
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Hannah's Story Update @ August 2008.
Update: August 2008.
Hannah was referred to an excellent new Consultant at Guy’s and St.Thomas’ hospital in June 2008 as a result of Hannah’s parents making a request in writing to Hannah’s GP. In parallel, Hannah’s parents complained to a number of official bodies about the poor standard of care, lack of expertise and appalling attitude of the previous medical team at Harrogate Hospital and Leeds General Infirmary (Hannah’s parents are still battling to get Hannah’s full and complete medical records sent through to them as they are entitled to under the Data Protection Act. They still haven’t received Hannah’s MRI pictures on disc as requested nor have they received the pathology reports from all the blood tests that were taken through 2007 and early 2008 at Harrogate hospital).
Hannah’s new Consultant displayed a totally different attitude to Hannah, speaking to her as a person, asking all the right questions and making some basic examinations and observations. He was obviously an expert in his field and was able to instil confidence and trust in Hannah and her family. From this he was able to confirm that Hannah did not in fact need surgery and explained clearly the circumstances where surgery does become necessary. He also quickly identified what had gone wrong with Hannah’s previous treatment plan. He explained that the medicines Hannah had been given weren’t compatible with her and weren’t given in the correct dosage for them to be effective. He prescribed a new medicine in the correct dose that he felt confident would be compatible with Hannah based on her clinical data coupled with his knowledge of the latest research in the field of Crohn’s.
Hannah’s Consultant had no objections to the alternatives that Hannah was taking. Hannah’s parents believe that the alternatives spared Hannah from another flare up between transitioning medical teams, which the old medical team were sitting back waiting for so they could threaten “child protection” again and railroad Hannah into disfiguring surgery that would not alter the long term course of her disease. (In fact, Hannah’s parents know a lady locally with Crohn’s disease that went for surgery at LGI, had a colostomy bag fitted, and the disease raged on regardless, she now has three colostomy bags and an external fistula the size of an orange, which they can’t operate on because she has had a heart attack and has had a stent. At her disability hearing, when asked whether she had been offered any medication, she said no. The panel were surprised and commented that really she should have been offered medication for her condition. Obviously too much surgery profit from butchery at LGI and now children aren’t off limits with this sick agenda).
Although the alternatives had helped Hannah, she still had what the Consultant described as grumbling Crohn’s and that to leave things like that would not be in Hannah’s long term health interests. Because Hannah is 11 years old and at a key stage in her development in terms of growth and puberty, it was essential to get her inflammation levels right down quickly so that she could start to grow fully, return to a normal weight quickly and have full energy ready for starting at a demanding Grammar School in September. The Consultant identified very quickly that Hannah was very low on Iron and therefore her haemoglobin was low. He started Hannah on a course of liquid iron supplement that is well tolerated and the correct dose of an Immunosuppressant, 6 Mercaptapurine, for her weight. In only five weeks, Hannah’s inflammation levels have returned to very near the normal level, Hannah’s haemoglobin count has raised significantly, she has put on half a stone in weight in only three weeks, has bags of energy and is now looking forward to starting secondary school full time. This is an amazingly quick response as on average 6MP takes around 4 months to take its full effect.
In Hannah’s case, Hannah’s parents found that natural alternatives and the right orthodox medicines can be complementary and that in Hannah’s case, they had to opt for both approaches in order to get Hannah back on track quickly so that she could develop physically through these key formative years.
Hannah’s Consultant was also really considerate in setting up regular blood tests at the local surgery after school instead of having to take days off school to sit in hospital waiting rooms.
The key lesson is FIND A REAL EXPERT IN CROHN’S!
The NHS has some brilliant people and it has some quacks, i.e. people who masquerade as experts in a certain field when they are not. Particularly with Crohn’s in children, the NHS system in the UK is that they go to see a Paediatrician who is a generalist with no real expertise or specialisation in complicated diseases like Crohn’s. They in turn hand the child off to other Peadiatric Consultants and Surgeons who again don’t have the focussed expertise and in the case of surgeons, some have a very narrow view of the world and think cutting into people can solve everything. In diseases like Crohn’s that aren’t properly understood outside a small group of real experts, they can get away with this attitude as well. One can only hope that systems and controls can be put in place within the NHS to protect especially children from unnecessary and inappropriate surgery from fee hungry people.
" Thanks Again For This Honest Detailed Update On Hannah From Her Parents, I am so glad that she is doing so well, this is really excellent news................Tim Page."
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