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13 year old daughter in oesophageal spasm severe pain

Posted , 10 users are following.

louise59823
louise59823

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?

1 like, 38 replies

38 Replies

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  • kayla19404
    kayla19404 louise59823

    Posted

    Hi, I have been suffering with similar problems and I have noticed that it helps a lot to have a cold drink whether it be water or juice or something can immediately stop the spasm while it is happening. It helps to relax the esophoesophageal muscles while im having pains. It is better to give your daughter something to drink as soon as possible because sometimes the longer that the spasm is let on the more it takes to stop it. So if you haven't already try it and see if it helps her.
    • louise59823
      louise59823 kayla19404

      Posted

      Hi thanks for your reply..sorry for delay as Olivia is still in hospital...we tried before, getting Olivia to drink but she could not manage it as she is in such pain (and drinks from a bottle anyway as she has complex conditions also)...but a couple of days ago, she seemed to have relief when the nurse was flushing her nasal gastric tube, so I told the Consultant, and the nurses are syringing water down her nasal gastric tube, as soon as the pain starts and it seems to stop it temporarily...THANK GOD...but Olivia is still having the severe pain episodes...I am being trained tomorrow regarding the tube....Olivia is awaiting a second opinion regarding spasms...x
  • zoe1978
    zoe1978 louise59823

    Posted

    Hi Louise, I have just read this and am currently in another London hospital with my 13 year old daughter suffering with spasms that have been continuos since the beginning of February 24/7 with no let up! No pain relief seems to be working at the present. We are also GOSH patients but they have not accepted her back!

    With us it all started with my daughter having pain when eating last summer and the pain getting progressively worse..in January 2015 we were in gosh have investigatory scopes, she was still suffering with this pain when eating however after the scopes she has been doubled over with pain and put on NG feeds as she had lost a lot of weight. She has been unable to straighten up! We were in Gosh for 10 days then transferred back to local hospital to be trained on tube feeding and encourage food... Then this awful pain started which looks like she's having contractions and has not gone....

    This is just the start and can see no end at the moment....she's currently having investigatory tests and waiting for results..I know exactly how you are feeling as I feel so helpless and unable to make the pain go away.

    If you get a chance to reply that would be great.

    Hope your daughter is getting the help and on the way to becoming pain free

    Xx

    • louise59823
      louise59823 zoe1978

      Posted

      Hi Zoe...bless you both...sounds similar..GOSH gastro have not accepted Olivia back to date...investigations Jan and discharged her so still in Luton in pain for 4 months on and off, 7 weeks wednesday solid...morphine etc and still pain not managed..needs assessment & management for esophageal spasms & associated chronic severe pain..but I cannot seem to get this for Olivia yet...soul destroying as you must feel, watching our daughters suffer & not be able to stop the pain..I believe that tests do not show spasms unless active at time..Olivia lost 3kg in 3 weeks & had NG but not now...we use the water as first action and then Olivia has a 16 point 24 hour pain plan...but it does not work fully..it is hell.which hospital are you at..we are also awaiting 2nd opinion at royal free..thank you for your reply to my post...I hope we can help each other...I hope both our daughters get the timely assessment and management , that they need...Louise xxx..p.s. can our drs discuss and try to see if they can work together?
  • lesley44398
    lesley44398 louise59823

    Posted

    My oesophageal spasm started when I was 17 and I am now 66 and it is only in the last month that it has been diagnosed so you really are ahead of the game already.  I have found that I keep ice cold milk with me at all times and if I can drink it immediately the spasm starts it 'cures' it straight away.  The other way I treat it is with icecream.  All sounds bizzare but it does really work for me for some reason it releases the spasm. I have heard that it can be as a result of a lack of magnesium in the system but not proven and peppermint oil can be used as well.  There is nothing medically that can be offered and she is very special as only 1 in 200000 suffer from it!
    • robert69209
      robert69209 lesley44398

      Posted

      Lesley,

      I am astonished how similar our experiences have been. I was diagnosed with Achalasia when I was 19. I am now 67. I discovered at a young age that very cold, creamy whole milk eliminates the spasms 100% of the time. I don't know how I could have dealt with the excruciating pain if I had not discovered this method of treatment. I, like you, carry milk around in an insulated bag wherever I go. Good Luck!

    • louise59823
      louise59823 lesley44398

      Posted

      Hi thanks for this...Olivia is still in hospital it is 8 weeks today..severe pain...does milk work better than water as been trying cold water and it works 52% of the time x
    • louise59823
      louise59823 lesley44398

      Posted

      Hi....thanks.over 8 weeks in hospital.worst pain i have ever seen Olivia in. agony since friday teatime, screaming for hours and begging me to stop the pain in the few minutes that she has been able to communicate.
  • lesley44398
    lesley44398 louise59823

    Posted

    Whole ice cold milk works for me and when desperate an icecream!!
    • louise59823
      louise59823 lesley44398

      Posted

      hi thanks...olivia still in hospital 8 weeks yesterday...only 4 pain free days in this time (not together)..so most days severe pain x
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