My 13 year old daughter has been in severe pain with what i believe is oesophageal spasm pain for the last 21 days. She was taken to hospital by ambulance and is still in hospital because of this, and is not 24 hours pain free so cannot come home, to date.. She has had hours of screaming in agony and medications are given but it keeps re-occuring, on and off. This condition started months ago, but has now got to this horrific level.
Please, is there anyone who can help her?
Hi sorry to hear about your daughter. I have a dismotility problem and have severe chest pain which is on and off all day, and sometimes I will have it for only a few times a day. I have had this for years but since June this year It has got worse. I had to call an ambulance 3 times this year one being 10 days ago but after checking my heart they each time, said it was not that and think it is the dismotility problem, and said to take pain killers but they don't always work.
Your daughter is young to be having this problem and if the pain is the same as mine I feel sorry for her.
Hope it gets sorted soon.
Bless you both, I truly feel for you.
My husband has been blue lighted into hospital on four occasions and each time the horrendous spasm has seen him agony.
I wish I had something more positive to say other than she is in the best place. They clearly won't send her home unil the pain subsides and so they'll have to intervene. In the meantime, stay strong and best wishes.
Xxx
Hi...thanks for your reply...hope help comes for you too...i was told she is young to have this...she has rare complex medical conditions and disabilities...this is the worst, as she is in agony with it...she is in pain now...x
Bless you too...thank you for your reply...i am worried as they have not treated anyone like her, for this and it seems 'trial and error'...and it is not cured or controlled or prevented...she desperately needs to be pain free...after 21 days of severe pain episodes and agony,she is exhausted but the pain still wakes her up...x
Your hospital doctors may well have done this already, but they do need to consult with their colleagues in a specialist centre with experience at dealing with achalasia. I dare say that it is all on a different level, but some people find that buscopan helps. Also nitrates & calcium
blockers. Some people find drinking Actimel, taking Manuka Honey, coconut milk, fizzy water, all can help, but it will be an individual thing.
This will sound very odd, but the stress and anxiety will make the condition worse, so trying to relax may help. Some hospitals have therapeutic massage centres.
Your daughter will get better, and I hope that it is soon.
I am very sorry for your daughter. I had pain but not that bad but my food would stick when I would eat. I went to Emory University in Atlanta and they did a mobility test. It is a very difficult test but they told me the pressure in my lower sphincter between the stomach and the esphogus) was very high and would not allow food to pass. I just had a ground breaking procedure that has only been in the US for 4 years call the POEM and it has helped. I am not sure where you live but if you google the POEM procedure you can read more about it. I wish you luck!
Hi thanks for your reply...i have been using the actimel, manuka honey and coconut milk...it won't hurt and it might help...Olivia is awaiting a bed at GOSH...as they are "full"...hope it is asap...horrific for her to endure so much pain and fear...I have been told only GOSH, Boston and Amsterdam can 'deal with it'...x
Hi thanks for your reply...I have asked about this but not sure until they have done some procedures, what is best...hope you feel better every day...x
I do hope it gets resolved soon. I went to a meeting of achalasia patients last week and this condition does cause much distress. If there are times, perhaps linked to eating, when it is worse, than that might help understand what triggers off the attacks. The doctors have probably told you that the muscular contractions that normally take the food down sometimes get uncoordinated and start a spasm with all the length of the oesophagus contracting together in a spasm, rather than in a controlled sequence, and this feels like a heart attack. But your daughter's situation may be different of course. People did tend to feel better when they stood up, sometimes stretching their neck up, sometimes massaging their chest / diaphragm, and even jumping on their heels to dislodge food that was stuck at the bottom of their oesophagus. Feeling miserable and anxious is natural when you are suffering this, and it compounds the tension in the nerves that will make it worse, so it can be a vicious circle.
Please have your daughter drink very cold whole milk. It will reieve the pain. Good luck.
thanks for your help..PLEASE someone help Olivia.. she was in hospital for 27 days came home 15th dec and went back in ambulance xmas day and has been in agony and still in Luton & Dunstable hospital and Great Ormond Street are not accepting her to date...local said "symptomatic management not working" and "she needs to be in front of Great ormond Street pain team" but is not and is still awaiting repeat manometry and impedence study which will not start to be priorotised until next monday but do not know when they will be done as told may be jan/feb then april/may unless cancellation...on high dependency ward as medicated and 5th line is oromorph now...GOD HELP HER
Hi, sorry to hear your daughter is still suffering. I can't answer your questions but would like to know what type of pain does your daughter have. I still don't know if my pain is coming from my oesophagus or the AFIB which I was diagnosed with about 4 weeks ago. I have an appointment with a physiologist for 2 weeks time and waiting for an appointment with the gastroenterologist so hopefully will find out where the pain is coming from.
Hope your daughter will get help soon.
this does not work for Olivia but thanks for trying to help
Hi..thanks and I hope you get well too...oesophageal spasms is what we believe it is..."Oesophageal motility disturbance with element of gastro-oesophageal spasm with pathological acid eposure, Sandifer-like syndrome and functional oesophageal disorder." x
Hi Im very sorry to hear about your daughter and I can relate to her as I am also a 13 year old girl with achalasia. If you live in the US i strongly recomend Dr. Timothy Kane at Children's National Medical Center as he preformed my lapriscopic heller myotomy to help with my achalasia. I wish the best to your daughter and I hope she gets well soon. Also I find that cold water and gaviscon, an acid reflux medication works well (even for spasms).
Hi..thanks for your reply...hope you are feeling better too...Olivia is still in hospital, in agony, but going to Great ormond Street hospital on 7/8th January for 3 repeat procedures x
I hope your daughter is feeling better too. What procedures are going to be done, if you dont mind me asking?
Hi..repeat impedence study,manometry and endoscopy scope with biopsies..yesterday and today, then back to local hospital, later today. I hope the "symptomatic management" plan will work as it does not keep Olivia pain free, and it is now a 24 hour, 15 point plan with numerous medications in it. I do not know if they will amend any of this, when they get the results from the procedures. If nothing has 'changed' since they last did it, I do not know what they will do to stop the pain.Olivia was in hospital for 27 days,then home for 9, then back in xmas day until now.
I wonder if there is any way that specialists can be notified of Olivia's condition and see if they have any ideas to help her....take care...Louise
I do hope that your daughter's situation will improve soon. From what I can see, your daughter's condition is unusual, and as such it would be perfectly normal for the specialists to consult each other about the best way forward. So the way forward is to discuss your daughter's case with the consultant so that you both understand the basis for the current treatment and when the consultant expects progress to be achieved and/or move to a next stage. If it turns out that the strategy is not working you could ask the consultant whether there are any other specialists that he could consult; and/or ask what centres of excellence he might recommend should you consider going for a second opinion. I think you should try and adopt a constructive and diplomatic approach to this. Your daughter's condition is rare and you want the best for her.