3rd degree heart block 6yo Liliana

[Lili_B]

I'm father of 6yo Liliana with complete heart block 3rd degree, we currently live in uk and try to get a help here in uk. In Poland our daughter is waiting for peacemaker inserted. She has been supplied with medication Salbutamol and Verospiron but in UK doctor said that they do NOT giving any medication. did anyone else had this experience?

[Niki_]

I don’t have any advice on the medication. I’m wondering what kind of block is it? Genetic ? She is so young

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

I am sorry the hear your daughter has heart rhythm problems

I suggest you contact Arrthymia Alliance which is a support group for children and and adults living with heart rhythm problems.

heartrhythmalliance.org/aa/uk/

Or phone the BHF helpline and speak to one of the Cardiac Nurses.

Good luck!

[richard_jw]

Do you mea n that the NHS is refusing treatment? Or is it that they don't recognise the drugs? Verospiron for instance appears to be a trade name for a diuretic manufactured in Europe.I think you need to talk to one of the cardio nurses at the British Heart Foundation.

[Lili_B in reply to richard_jw]

No, they are saying that in UK they do not using any medication for heart block. And even yesterday I've been told by Birmingham cardiac specialist that they know that in some of the countries they do but in uk they are not using any medication. Which I think is weird because in Poland we've been told that medication is absolutely necessary.

[juanitamc]

I had a 3 degree heartblock in May 2020 and the consultant told me I didn't need medication, so I was alright no taking anything until this year in March, when I had a mild Heart attack and was put on Bisoprolol and now changed to Atenalol as the Bisoprolol was given me terrible side effects. Hope your daughter gets sorted. (All the best)

[Hidden]

Hi, sorry to hear of your daughters problem at such a young age.

I aquired 3rd degree HB eight years ago, during OHS.

My Pacemaker was fitted quickly within 3 weeks. As far as I'm aware, I wasn't given meds specifically for HB pre-fitting, and definately not, post fitting of the PM.

Best wishes.

[Lili_B]

Thank you for all yours answers, really what our problem is that we have 2 different diagnoses, one from Poland saying she needs to have peace maker inserted quite soon and in the mean time we need to give to your daughter medication just to help her heart working properly and the second opinion from UK doctors is that we should wait till she is 12-14yo to minimalize more surgeries as cables are not growing with her and there is a risk that she will have to have more surgeries (which is quite understandable), but they said that she doesn't need any medication which I checked with Polish doctor again and she said that she must have medication. The doctor from Birmingham said that he is aware that in some of the countries they giving medication but not in UK ?

[Milkfairy Heart Star in reply to Lili_B]

It is difficult for you when you have been given such different advice.Medicine is sometimes the art of knowing when to sit back and when to intervene.

The care of children's heart conditions is very specific. What is appropriate for an adult is not necessarily the best care for a child.

Has your daughter been seen by a paediatric electrophysiologist?

These are Cardiologists who have expert knowledge about caring for children with heart rhythm problems.

In the UK there is the National Institute of Clinical Excellence NICE. NICE sets the clinical guidelines and best research evidence based care for healthcare professionals.

The Arrthymia Alliance has a helpline and I would encourage you to talk to them.

Another consideration, if you decide to take up the advice of the Polish doctor,

How will this be arranged?

Will you have to pay for this care?

Who will provide the ongoing care for your daughter?

Will you need to make regular trips to Poland?

How safe is it to travel during the Covid pandemic?

I hope you are able to make an informed choice of what is the best care for your daughter, soon.

Good luck!