my son seems to be getting worse with his heart rate dropping to low 50,s or even lower most of the night

i took him into the local a&e a couple of days ago and i was told unless he becomes unresponsive deal with it myself ,his o2 still drops every night to low 80,s and his consultant doesnt want to put him on o2 yet although his pediatrician thinks he needs it he said he carnt over rule him.he is now getting episodes during the day of going grey and getting blue lips and around the nose. he is only 5 but everything is taking so long to deal with,i have just gone around my consultants back and gone to the sheffield childrens hosp but when in my local a&e qmc in notts refused to give any info to the doctors there because of that,im worried that a may lose my son before they do anything ,im exhausted with getting up constantly with his alarm all night and scared one night i may sleep throught it just dont no what to do next

14 Replies

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  • Oh Beverlylouise, so sorry you and your son is having to deal with this, you must be exhausted and must be such a worry for you. Don't ever hesitate to dial the emergency number through the night or take your son to A&E, phone the NHS Direct any time you are unsure or take your son in to a walk in clinic if you have one near you.

    The BLF Helpline is not open again till Monday, from 10am to 5pm please give them a call also for further advice and support the number is 03000 030 555.

    nhsdirect.nhs.uk/

    I am sure the pediatrician would have put in writing what he thinks regarding your son's needs but please do check this out and ask for confirmation in writing to yourself of any letters sent to the consultant and GP.

    Take good care and I am sending thoughts your way for both you and your son, I hope that things will happen quickly for you to support your son's health.

    All good wishes to you. I am unable to be of more help.

    BC x x

  • Oh how dreadful for you - I cannot add anymore than blakeyc but would like to send you love and hugs to you and your son. Please god you get the help you need. Take care TAD xx

  • I'm so sorry to hear your news I think BlakeyC and TADAW are right. Sending you and your son hugs and kisses. Thinking of you both and hope everything is sorted for your son xxxx

  • I don't know how you are coping with this beverleylouise, it's heartbreaking you can't seem to get the help you need. I can't profess to know anything about it but it certainly doesn't sound right at all. I do hope you can get the help you so obviously need for your boy. With every good wish, LIbby x

  • My thoughts are with you too...... My three daughters are asthmatic and when they were young I spent many nights watching them struggle for breath. Before they were diagnosed I was described as an over anxious mother,even though one of them coughed for years.

    Later I was allowed to take one of them directly to the children's ward in an emergency

    BlakeyC has some given some excellent advice.

    Best wishes

  • Beverley I hope your son is comfortable tonight, but if not call your doctors 'out of hours' number and get advice, It can be so hard to see such a young child struggle.......or take him to A & E if you think he is deteriorating rapidly call 999 for an ambulance .

    Love Sohara

  • Hi Beverlylouise. It's an awful thing to see your child suffering. I don't know what the NHS is coming to letting a child suffer. All I can say is stand up for yourself and demand they do something about it. Ask them to take him in so they can see what is happening. Blakey has some good advice as well. I would be like you. Worried to death. When my Mother was ill. We were standing back watching her going down. A nurse took us to one side and said. " It's a case of whoever shouts loudest " I learnt from that day to stand up for my Mother my Father and myself. X

  • I really feel for you Beverley. When I was in A&E at another hospital the records didn't go to my normal hospital , they aren't joined up properly.

    I'm certain you must be exhausted and totally drained.

    I wish you and your son the best of help and ASAP as you both deserve.

    When my asthmatic son was 3 -4 we lived in Africa and couldn't get a good doc or meds. I knew about deep diaphragm breathing then and managed to teach him in order to get more oxygen. Could this be a possibility?

    I pray you and he had a good night and i so admire you for trying to do the best for your little boy. Good advice from BC, the BLF will be very helpful on Monday. xxxx

  • How absolutely terrible for you and your son. He should not have to put up with this at 5 and nor should you. Any worries dial 999 and get him admitted to a hospital where they will have to do something about his condition. Please keep us updated and let us know how you get on. Sending love and good wishes. xxx

  • Hi Beverley, write to your consultant and pediatrician with your concerns. They cannot ignore anything in writing, and keep a copy. You will get a reply. If I ever have concerns about anything to do with authority I put it in writing, they cannot then say they did not know, and are liable for the consequences. They will act. Good Luck, keep fighting for your boy. Love x

  • I have a friend who felt so awful. He was admitted to hospital and a pace maker was inserted. The only thing is that the pacemaker was working for high heart rate. So when he came out, he suddenly felt awful again. he was sent to hospital in emergency. His pacemaker was readjusted to detect slow beats. He is fine now.

    will your son be referred to a heart specialist? Like need to breathe, write to your consultant with a recorded delivery, so you know it's been attended to. The sooner the better. Indeed, you have to fight for your little boy, don't be fobbed off!

  • Beverly I agree with all that has been advised if you are not getting the help your son so rightly deserves the do not be afraid of making a FUSS ask for who ever is in charge do not be fobbed off if you are told they are not available and write to the chief executive if the hospital stating what is happening they are bound by law to reply to toyou get things sorted out always go to the top it always works believe me I worked in the NHS for over 30 yrs and found the people who complained to the top always got things sorted out good luck

  • Everyone here is offering good advice. I too have fallen foul of this problem of hospitals not passing on info when asked - it is so frustrating.

    You say your consultant says he wants to wait? Is this a dedicated heart or lung specialist?

    A few years ago I was unhappy with the local respiratory team and spoke about it to my GP. She immediatelly said she would get a second opinion and I am now under a dedicated specialist. It means a longer journey each time - and I still have to deal with the local consultants egos when I need in patient care. But it has been worth it.

    Ask your GP for a second opinion. He/she has the authority to do this.

    As a mother I can understand your fears and frustrations. Someone else said it - write it down and stand up for your baby.

  • thanks everyone for your replies .my gp is a waist of time as all he says is that my monitor is wrong even though its been checked .sheffield childrens hospital seem to be taking this seriously now as we are in next week for tests so hopefully something will now be done.i have called 999 a few times but it takes them at least 30 mins to get here not there fault have to come from far out as there is never any around us.but 30 mins could mean the difference to life or death

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