13 year old daughter in oesophageal spasm severe pain

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.

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

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. 

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

this does not work for Olivia but thanks for trying to help

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. 

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..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.

Hi Alan I have been diagnosed with a dismotility problem and waiting to see a gastro Dr. I don't know if it is achalasia because my GP told me it was a dismotility problem. I am getting chest pain on and off every day which starts in the morning through to the afternoon and seem to wear off towards the evening, is this normal?  The pain lasts for seconds but it is horrendous when it comes on and my blood pressure goes up and I get facial flushing. I normally eat weetabix for breakfast but the last couple of days it has been sticking in my chest and  very uncomfortable, making me heave and fetching some of it back up. Does this condition cause palpitations?

I have recently been diagnosed with AFIB  as well and seeing a physiologist on Wednesday. The Dr I saw when I was diagnosed while in hospital for a night said the pain could be coming from my heart and another Dr said he did'.nt think it was. I was wondering if you have heard of anyone having this much pain with this dismotility.The pain feels heavy and crushing as if I have been kicked in the chest really hard. I was also told my heart was sound. Movement starts the pain and if I sit down a bit too fast whether I have eaten or not I get the pain then, and it makes me breathless. This pain has got much worse in the past 8 months. 

Thank you....  

     

Not sure what you mean by AFIB? Perhaps heart fibrillation problems?

The GP is being wise in not specifying achalasia as there are other dysmotiity issues as well.   One pain that really becomes intense is when the muscles start to contract and spam together, rather than in  sequence taking the food down.  It may, or may not, be that you are suffering from.   Some people find buscopan helps;  others eat a banana.   One man I know who got food stuck would stand up straight rise on his toes and then drop on to his heels to try and jerk the food through.  

You really need to be seen by a specialist Upper GI (gastro intestinal) Unit.

 

Thank you for your reply. I would like to ask another question. Can dismotility problem cause dry heaving/gagging choking This has been going on all day and I am afraid to eat much just incase it gets worse. The chest pain is worse today too. I am going to phone the hospital tomorrow to see how long I have to wait to see the gastroenterologist. I have been on the waiting list for 4 months. 

There are quite a few things that can cause gagging / choking.   I wonder whether it might be caused by food hanging around in the bottom of your oesophagus?   I do think you need some medical advice very soon.

Thank you