Stopping my granddaughter medication

[Graseton]

Hi im just wondering if anyone can help me pls,

My granddaughter had heart failure when she was 22 months old she is now 8 doing great 👍 we went to see her consultant the other week he said he was taking her off her medication (Enalapril) next year when we go back to see him. It's really worrying because the last time we seen him he said she would have to be on it for life because he doesn't know what will happen if he took her off it. My daughter then got a letter yesterday saying he has stopped her medication NOW !! So that is it it just doesn't make no sense that he would go back on what he originally said we are all worried sick now what if it happens again 😞 and its as if when we do go and see him he is talking about another child if that makes sense please any advice would be great thanks

[RufusScamp]

I can only suggest you contact you GP and see if they have any more information from the cardiologist, or have a chat with the BHF nurses. I can see why you are worried. I hope you get some useful help soon.

[10gingercats]

Maybe ask the consultant why he had decided to remove all the meds.Explain your concerns and worries. Maybe if you can pin him down you can get a better idea if he is refering to your grandaughter or another child. This happened to an adult friend of mine .She received a letter which although adressed to her was clearly not about her. She made an appointment and went to see the consultant and he agreed there had occured some confusion .

[Hidden]

Hello

I can see why this would be worrying and I can also see why you would be wondering if he has the right child and not getting mixed up

I agree you need to talk with your GP but I would also phone the Consultant's Secretary explain your concerns and ask that you have a phone call as you need this explaining why a change of mind twice and you feel insecure about the previous information you were given especially her been on the med for life why now such a big U turn

I am really pleased she is doing so well such a lot for a child bless her but make those calls , get the answers you need and please let us know how you get on x

[Hidden]

Dear Graseton

So sorry to hear of the worry that this has caused you and your family, but at the end of the day only your consultant can give you the answer you need, let him explain it to you {you will get a letter with his diagnosis and change in medication} if you then are unhappy with what you are being told, seek a second opinion, which your consultants office will be happy to supply.

Take care

[Swim2fitness]

Good advice above.I recently visited my GP and was pleased to hear him say I can stop two of my medications now 10 months since HA (I have always hated taking pills).

I think we can use medication as a crutch (understandably when not well) and we get concerned when things change. But I am doing well and it sounds like your granddaughter is too.

Wishing you all well

[JeremiahObadiah]

Totally agree that you need a full explanation as to the reason/basis for the change in opinion, especially given the original life long requirement.

It is really hard to understand what is going on if you are not involved in the thought process. On such an important matter, you need to have full confidence in the decision made on your granddaughter’s behalf.

Could you write a list of questions that you need answers for and send them to the Consultant, saying something like-

Whilst delighted that you feel X no longer needs Enalapril , it would be very reassuring to know why it was felt at first to be a life long necessity but now she no longer requires it. Please could we have a written explanation in layman’s terms as to the changes made in medication , the basis for those changed and the outlook now she is no longer taking it..’

Do let us know if you get the information you need.

Best wishes

[Cavalierrubie]

You really need some answers to your concerns with immediate effect. I would be very anxious and worried and it doesn’t seem correct that you have been given no explanation why they are taking her off medication. Do not be fobbed off and demand some help as your granddaughter’s health is paramount. I hope you get some positive answers.

[GardenRed]

You need a full, detailed explaination as to why they think they can do this now and make sure they use language you understand. Be persistent.

[GardenRed]

Also I would suggest doing a google search: "stopping heart failure medication after 8 years" and look for both cardiac papers and experiences of patients.

For papers use Google Scholar and for patients prefix search with 'forum'

[arTistapple]

I think a period of weening off the meds would at least be sensible. Not a sudden stop! Heart meds are extremely powerful and the body most likely needs time to get used to not having that support. I think it’s a matter of urgency to NOT put this child through ‘cold Turkey’! Others are suggesting that they might even have got the wrong child. Adults have a tricky time doing this. Children and their parents must know everything that is happening/likely to happen.

[Prothy]

Hi all, I just want to say that NO ONE should be afraid to confront/question/ask a doctor, specialist or consultant if they are NOT happy with what you are being told, no matter what problem or condition you have. Believe me they do get things wrong!! They’re only HUMAN!!

If you don’t speak/stand up for yourself WHO WILL. 🙂