anyone elses toddler on propranolol?

[theidsalright]

a few questions for you....

My ds used to be from about 9 weeks old till around 4. Now on atenolol instead. Fire away...

Mine toook it for a while but it was a loooooong time ago.

Thankyou!

We think DS is looking pale on propranolol in that unhealthy vampirish way, with quite red rimmed eyes. It's hard to tell if he is simply recovering from what he's been through or if it's the medicine? he's always been very fair anyway.

He also seems to be colder, to the touch, than before, especially his hands and feet. Co-incidence (because it IS colder) or medicine?

He is sleeping longer (I know it's a strange thing for a mother of a toddler to be alarmed about but there you go) and tending to want carried more. Will he be a less active little boy because of this, or will this go away as he gets used to it?

The plan seems to be to have him on it for the next few years at least. It's only been two weeks.

Hello again
Well - I suppose some of this might be the reason why he is on it in the first place. Think there are a few reasons for taking propanolol but mine was taking it for a heart condition.

I remember asking about cold hands and feet - but no-one was ever concerned about it and I think it is a side effect of the med.

he definately slept a lot! but also had nightmares which was one of the reasons we changed to atenolol. He also never walked anywhere! really, I once battled with him in a park for 45 minutes to walk 25 yards. ( I think he won). Its very difficult to know what was the medication though and what was a little boy with a heart condition and a neurotic mother

Its also hard to tell whether changing meds helped or whether he just grew up a bit. Certainly he is very active now, isn't so tired and most of the time I forget that he is on quite a high dosage of a strong drug.

So not sure that is helpful, I did find our cardiac nursing team great and would ring them whenever I had a worry and I would mention anything and everything everytime we saw the cardiologist. I also think that 2 weeks is a short time to get used to taking something new and so invariably, I think things will settle down.

Thanks for your detailed reply.

Your answer makes sense and soothes me considerably! It IS early days and I am only starting to get used to his having this heart condition, so I am probably extremely neurotic.

The cardiologist said to expect to be on propranolol for the next few years, unless there are indications that it isn't working. He did also tell me to expect a "bedding in" period but we don't see him for another three months. I am sure I will have many questions for him by then.

Thanks again and I hope your son is well!

Blimey - have just had flashbacks - we found out when my ds was a newborn about his heart, if you have just found out then it must all be hugely anxiety provoking and difficult.

whereabouts are you and have they given you a cardiac nurse to contact if you want? I have never met anyone else with a child on propanolol so never knew what was normal IFYWIM. Have also never met anyone with my sons condition (HOCM) so its difficult.

I have learnt over time to let go a bit and not be so protective but it is hard. Give yourself time - it will feel better. honest x

theid - sympathy to you. My dd also has a heart condition; I'm not surprised you feel like you're being a little neurotic. (you're not).

dd was a baby when she was on propanolol so I have little to offer with regards to side effects in an older child. The cold extremities is common, and common in other cardiac meds too so I wouldn't be able to pin it down to the propanolol. She came off it afer a few months because it didn't seem to do what they wanted it to do.

I agree about having a chat with your CLN if you have one - you will have one if you're being looked after at one of the Children's heart centres. Shout up if you need some support.