|
|
| Your Stories This site is for you and about you. Please tell us your stories, experiences, achievements and ideas. Sharing your stories inspires, supports and helps us learn more about OB. Email our Contact Us page or lynne@breathtakers.co.uk |
| |
| Toms Story My son Tom now 2 and three months was diagnosed a year ago after being admitted to hospital 7 or 8 times. Eventually he was referred to respiratory team at Birmingham children's a year ago and after 10 days of tests ct scan diagnosed OB. He has had oxygen at night since Jan which has made a huge difference, he has septrin daily and pred every other day along with salbutamol inhaler and physio. He has been so well for 9 months but has obstructive sleep apnea which can wake him up anything from 2 - 10 times a night. He is having op to remove tonsils and adenoids on Wed 16 Sept to try to open up his airways, was wondering if anyone else has such awful nights but wonderful days! Tom is a beautiful, lively little boy who takes everything in his stride and people never suspect he is ill. Thanks for such an informative website it's brilliant as you can feel quite isolated at times.
Sheila's Story I was diagnosed with bronchiolitis obleterans two years ago . I am on a steriod inhaler and long term antibiotics. I am sixty five years old. Are their any other people who have this complaint at my age? I have no history of chest trouble but my Mum had rheumatoid arthritis and so does my son. I would be interested to hear of any information you may have about treatment and prognosis. Yours Sheila If you would like to contact Sheila just let us know and we will pass on your details.
Link to Rachy's site I'm Rachy, 21. I was diagnosed with a rare interstitial lung disease called obliterative bronchiolitis when I was 15 years old. I worked as a stable hand and contracted the disease after repeated pneumonia (which I was more prone to due to being asthmatic) and hypersensitivity pneumonitis left me with massive amounts of damage. OB is a rare and life-threatening form of fixed obstructive lung disease. Bronchiolitis means inflammation of the bronchioles, the tiniest airways in the lungs. Obliterans refers to the fact that the inflammation of the bronchioles partially obliterates the airways. This leaves permanent damage in the form of fibrosis. I'm on oxygen 24 hours a day and rely on a non-invasive ventilator to breathe for me at night.
Late in 2007, after 4yrs of living with lung disease I was also diagnosed with pulmonary hypertension, this condition causes the blood vessels around my heart and lungs to spasm and constrict leaving me with dangerously low oxygen levels. There is no cure. Despite all of this I remain positive and smiley and enjoy my life, I believe the challenges I’ve faced in my life have helped shape me into the person I am today. I’ve met many inspiring people on my journey so far and I’m sure I’ll meet many more. Rachy is currently waiting to hear if she can be added to the UK transplant list
Lily is having fun in Australia Lily aged 16 months is loving the great outdoors- walking on the grass in bare feet, being adored by multiple adults and her big fairy god sisters. 
|
| Stephens Story When Stephen was 30 weeks old he was found to have hydrops fetalis and Down syndrome. He was monitored daily and was born by emergency c-section at 35 weeks. He was ventilated for 10 days and needed chest drains for pleural effusions. Stephen left nicu on continuous oxygen and ng feeding. He spent several months in scbu during which time he needed two blood transfusions and was found to have reflux+++ but not aspirating. Stephen came home on his oxgen and ng tubes but soon took to the bottle. During his first winter he caught many viral infections one of which was rsv. He was ventilated three more times and was very
very sick. Following ct scan and biopsy Stephen was diagnosed with bronchiolitis obliterans. The course followed was to give numerous vaccines and then predisolone for a year. He takes all the usual inhalers, nebulisers, singulair, steroids and
antibiotics. He tends to be breathless, have slight recession and get tired easily. Stephen will be four in august and is only using oxyen when asleep (soon to give it up altogether i hope!). He is walking and talking and is very well. He has had a great winter and is getting hardy, living life to the full. We are delighted to have found this website and if anyone would like to contact use through this website we would be thrilled. 
Rebecca's Story Our daughter Rebecca, is 6 years old, and was diagnosed with OB when she was 10 months old. Her illness began (I think )when she was only 5 weeks old, when she looked slightly breathless after feeds, and began to falter with her growth, for which no reason could be found, despite many tests. She also had an episode of an RSV type of bronchiolitis when she was 12 weeks old. Over the next few months she continued to gain weight poorly, despite intervention with dietary supplements, and her breathlessness and chest recession became obvious, and Rebecca was treated for pneaumonia and referred for a CT scan which confirmed OB. Initially Rebecca was chesty quite a bit and needed frequent antibiotics, and her growth was poor for some time, she didnt have a good appetite and preferred small meals, as she disliked feeling full. She had regular SAO2 monitorring, but fortunately did not require oxygen. Rebecca is now a beautiful, active 6 year old, who copes well with her problem, she loves to swim and trampoline(the best way we have fiund to clear secretions when she is chesty!) She is still on the small side, but her growth is now along the 3rd centile, when at her worst is was well under the 0.4th. She continues to have chesty episodes particularly during the winter, for which she takes antibiotics. She has had steroids in the past, but does not seem to get any benefit from them, nor from inhalers. She has made great progress at school, and fortunately has not missed much school due to her problem.We would be happy to share our story to help others at the beginning of their diagnosis, as we too found little non professional information to help us come to terms with Rebeccas problems, Fortunately the hospital consultants who see Rebecca have been fantastic! Sharing your story helps others Please send us your story lynne@breathtakers.co.uk
This is Gemma's story about her son Laylun. Laylun is 2 years old. Please share your story with us. Hi Lynne its Gemma, im going to give a short story about Laylun for you to put on your website. Laylun was born at full term with no problems in pregnancy, he was first ill at 23 days old with stomach bug which led to broncholitis. From the on he seemed to be getting it every 4 to 5 weeks He had pneumonia at 12 weeks and influenza a and b at 6 months old and still continues to get rsv and mpv broncholitis. He was diagnosed on 22nd may 2007 following a ct scan. Laylun is now oxygen dependant and he is currently on predisolone steriods, salbutamol and atrovent nebulisers, montelukast, becatide inhaler, azithromycin antibiotics. He gets very short of breath, always wheezy and sweating but carries on with life like a normal 2 year old. If anyone out there would like to contact me then feel free to email me through the website 
Toby's story
Our 9 month old son Toby has OB and this afternoon his Consultant told us about Breathtakers. We are beyond delighted to have found you because, due to the lack of any information on the condition, we were beginning to wonder if Toby was the only person suffering from it!
When Toby was 12 weeks old he was admitted to our local hospital with what we thought was just a severe cold. On the fifth day he suffered acute respiratory failure and was rushed into Intensive care at Bristol Children's Hospital. He spent 2 weeks in PICU where he was about as ill as it is possible to be. He then spent a further 9 weeks in the hospital. It wasn't until about a week after he came out of PICU that they discovered, from a culture, that he had Adenovirus. His recovery was very slow and they then began to suspect that he may have developed OB. A CT scan in July confirmed that he had. We cannot get him to put on any weight and he has terrible bouts of sickness. This was thought to be Reflux but endless tests seem to have ruled it out. The sickness seems to be associated with him producing copious quantities of phlegm. The Consultants are cautiously optimistic about Toby. They feel that he has age on his side, he is fortunate because they say children’s lungs don't start growing/developing until they are about two and this is obviously a big advantage. They have been very pleased with his progress. The CT scan was also better than they expected.
We would very much like to make contact with other families and be involved with Breathtakers. If anyone has experienced similar sickness problems we are desperate to know. If you would like to contact Toby's parents or share your story with us please email lynne@breathtakers.co.uk 
|
| | Briana's Story Our beautiful daughter Briana Lynn is 6 years old now, and was diagnosed with OB when she was about 4 years old. Well as I can recall she started getting sick when she was about 4mo. old she would get sick with bronchitis , RSV
flu,pneumonia a lot of respiratory infections this went on for her entire first year in and out of hospitals. So this continued for at least 2 years and what the doctor would always tell me its asthma she will get better , but i started getting frustrated cause she then started coughing a lot during the night or any physical activities. Me being her mother i didn't understand why she was still sick she was always on the neb. treatments so i told her pediatrician is there some kind of lung doctor that can help her and so he did and i went and of course did her the cystic fibrosis test on her which they done already like 5x's came out neg. started her on sum new inhalers ... fine did this for couple of months didn't see no change so i go to the pediatrician again and i tell him she not getting better can i see some else .. so did and again same thing as the other doc.. and nothing no change she was still up coughing all night she would get gray and sweating from all the coughing she would stay exhausted .. so i tell her pediatrician please please send me to some one who will understand me !!! so he sends up to Houston ,Texas to Texas Children Hospital and that's when finally some one understood me , that what my daughter had was more than just asthma and so they did a ct scan and that determined she had BO and me as her mom i was glad in a way that we found why she was always getting sick but devastated as parents to hear that she had this rare chronic lung disease .. so now Briana wears oxygen due to her really bad coughing spells but we are trying to wen her off of it . she is also home bound due to her weak immune system so no school for now, we also struggle with her poor weight gain , so you got any good meals with lots of carbs email them to me !! but other than this illness she got not only is she living/dealing with it me,(mom) ,Dad ,little sister and family members are living it too but support and of course spoil her .. but she is a fighter and i love her dearly with all my heart <3 please if you got a similar case like hers email me i would love to chat with you { laura11304@yahoo.com} .. Thank you and God Bless You and your little angles !!! thanks for reading Briana's story :~)
Updating Laylun's Story Hello everyone.... i thought i should update Layluns story as it seems so long ago since i did the last one...!!! Laylun is doing great, he is only in 0.8litres of oxygen.. still 24/7 though but its on the way down... he has had alot of chest infections over the past few months but has'nt had to stay in hospital for months at a time ( as he usually does! ), its just been for a week or so as he is still fighting like a ox....!! He has been going to main stream school for the past year and has a one to one that carries his oxygen round for him...he still has Azithromycin antibiotic on alternate days that works wonders for him as he had 4 days off it and he started sweating really bad and got more breathless and he has nebs most days but he takes it all in his stride. He runs round wild everyday and is always shouting..!! ( saves me doing chest physio!! ) I must say to the mums that have babys with OB that things do get better, i found when Laylun turned 2 he seemed to get stronger and handle infections much better.. its so good to hear that other children on here are doing better,it gives me hope... i would like to thank Lynne from the bottom of my heart for everything she has done if it wasnt for her hard work and determanation we would have nothing to turn to for support so WELL DONE LYNN... lots of love to everyone...xxxxxx
Updating Sammy's Story again. Hi Lynne Thought it was about time I gave you an update on Sam. It's been an exciting year. Not only is Sam now completely oxygen free, but he has also had his tracheostomy removed - after 4 years, 7 months and 15 days!! (not that I'm counting ;)). It was funny being able to hear him (they can't make any sound with a trachy in) Now we just need to get him talking! He is still on prednisolone and prophylactic antibiotics and medication for his heart, but other than that he is doing really well. We have just come back from a 2 week family holiday in France - the first time we have taken Sam abroad since he was a baby! I did take an oxygen cylinder just in case but we didn't need it. Hope everyone else is doing ok. BRILLIANT NEWS X Update for 2009 A great start to 2009 hoping that 2009 will be Sam's year - here's a fantastic update! Sam is now (since Monday) completely off oxygen - after just over 4 years! His sats have been hovering around 95-96% this week - but last night he was 98% on room air Yay!! Also, we saw the ENT consultant at Birmingham Children's Hospital on Tuesday and he wants to attempt the removal of Sam's tracheostomy! It will involve Sam being admitted for 24 hours and they will block the trachy off, and monitor him. If he is ok after 24 hours they will take the trachy out. He will then need surgery about 6 months after to close the stoma (he has had the trachy so long that it won't close on it's own). I'm trying not to get too excited (we have tried taking the trachy out before - and failed), but I am cautiously optimistic. It has been a long haul and I know it won't be the end of Sam's problems, he will still need medical care for a long time and will still need support in school, but it will make life a lot easier - I won't need to carry ambubag, oxygen, suction machine and emergency trachy kit for a start! WE LOVE GOOD NEWS!!!!! Lets hear more.
Updating Toby's Story- Great News  Toby is doing BRILLIANTLY. He is now down to 0.1 l/per minute and manages very well without any oxygen including at night [when he frequently pulls his cannula out]. His milk was also changed 2 months ago and miraculously he hasn't had any stomach pains or cramps since, which is just fantastic given the constant agony he was in before. The Gastro consultants are completely mythed! His development is still terribly delayed - and he is more like an 8 month than a 22 month old - but we have seen several neuro consultants and they all assure that it is pretty much to be expected due to how ill he has been. All the tests they have done are normal and they seem absolutely convinced that he will eventually catch up fully. He has made huge progress in the 8 weeks since the milk was changed [and he stopped being in pain] so it is all very reassuring. He now giggles the whole time and it is just wonderful. His breathing is so much better, and there is rarely any wheeze, and he hasn't needed a single dose of steroids or Atrovent etc. for over 6 months! I'm sure that over the winter he will have some problems but he is so much stronger than he was this time last year... He is also having the monthly RSV jabs which will hopefully give him some extra protection.
|
Sammy's Story 
Sam was born on 11th February 2003 after a normal pregnancy. Shortly after birth he turned blue and floppy and was admitted to the SCBU. His problems appeared to be associated with feeding, but was successfully breastfeeding by the time he was allowed home after 16 days. He also had hypospadias (the urether opens at the base of the penis, not at the end), this is a pretty straightforward operation to repair. At 8 weeks of age Sam was diagnosed with Opitz G/BBB syndrome, a rare genetic disorder. We have 2 older boys who are perfectly healthy, so this came as a surprise. To confirm the diagnosis, Sam had a bronchoscopy at 6 months of age to determine whether he had a laryngeal cleft (a common feature of the syndrome). Sam did indeed have the cleft (this is an opening between oesophagus and trachea allowing food to enter the lungs).
In October 2004, after frequent hospitalisations with aspiration, Sam was admitted to Birmingham Children's Hospital for the cleft to be repaired, he was 19 months of age. We were informed that Sam would require a tracheostomy for around 4-6 weeks post operatively while the swelling in his upper airway went down, this would be removed when he was discharged. Unfortunately, December 2004, whilst still in the hospital, Sam caught Adenovirus. It hit him hard, he was very sick and it developed into pneumonia, on top of that, in March he got the flu. After all these things, Sam had an oxygen requirement and still required continuous oxygen. His OB diagnosis came in January 2007 when he was finally able to have a CT scan to assess the damage to his lungs. He still has his tracheostomy, and has a gastrostomy for feeding due to swallowing issues.
This all sounds pretty bad, but despite all this, Sam started school in September 2007. he is in a mainstream school with other children his age and is coping brilliantly. He is very bright and has lots of friends who all care for him. He has his own teaching assistant who is a former nurse and she does a great job with his medical and educational needs - including carrying the oxygen cylinder around all day long! We are hoping to wean the oxygen down soon as we have an appointment with the respiratory consultant in a few weeks. He's been on oxygen for 3 years now, it would be great to allow him some freedom from it - I've got everything crossed!!
Ashley's Story I saw Dr Connett in clinic today and he told me of all your work to develop this site- well done! It is great to know that there is such a good source of information and help regarding OB. I just wish it was available when my son was diagnosed approximately 10 years ago. Ashley was using inhalers for asthma from the age of 5 months but contracted adenovirus at the age of 18 months, resulting in him being put on a ventilator for seven days whilst they administered high doses of steroids and anti-biotics. Over the next year or two he had frequent hospital admissions for up to two weeks at a time for chest infections. Following a bronchoscopy and a CT scan OB was diagnosed. So not only did Ashley have asthma to contend with but he now also had OB, so we were pretty devastated. Luckily we have had great support from Dr Connett and the team at Southampton General. We are so fortunate that Dr Connett has known Ashley from the initial infection which caused the OB and has cared for him ever since- Ashley is now 13.I'd like to reassure the parents of younger children with OB that things do get better over time. Although Ashley still needs nebulisers every day, he no longer needs constant anti-biotics or steroids. He copes so well with his condition that many comment that they didn't know anything was wrong with him. Exercise has been crucial in keeping Ashley well. He still has swimming lessons once a week and next month hopes to achieve his 1500m (1 mile) badge. He has found that he can do breast stroke really well- other strokes he cannot manage more than 30m or so! Also a positive outlook really helps. We have always encouraged him to do whatever he wants in terms of physical activity and let him guide us as to how much he can participate. Please send us your story
|
| |
|