Down's Heart Group

How do we ensure we are getting the best medical treatment for our youngsters?

Treatments change and develop all the time and it can be hard to keep up with them all, and of course not everything works or is appropriate for all. So it's vital that we share experiences (postive and negative) so that we can be armed with the right information to enable us to ask the right questions.

So please share:

Anything that has worked dramatically to improve quality of life for your youngster.

Anything that caused a really bad reaction.

Examples of good practice that have made life easier for you or the person you care for.

Examples of things which need to be avoided as they added to the stress for you or the person you care for.

3 Replies

I am really floundering quite a lot when it comes to making sure the medical is tip top. The more I talk to families around the world it seems that there is so much information to go through, and so many options to try. It can be overwhelming and expensive feeling like you have to make the right choice because you only get a few shots during these crucial first years. Every therapy and medical center often tries to tell you, "THEY HAVE THE ANSWER!", but in reality they are just options to choose to keep you moving forward and give you a little hope that you are doing something to move forward, so in the end everything could work and everything might not me totally right for you. What you feel is worth the effort and brings a little more joy than heart ache (like Swim or Horse Therapy as opposed to intense physical therapy). I think the absolute biggest help for me is to be apart of a community. To help lift each other up and keep the sanity when the going gets tough and you are trying to find the right medical staff to help your family. I don't think there is one BIG answer, but a lot of little ones nurtured by support and love of friends and community.

Hope this helps. Trying to get our family on the right track and hoping this thinking is going to get us there a little faster.


I think you summed it up there - there are lots of options and some will work for you and your family and some won't, but we should never feel pressured into feeling that we aren't doing our nest if we don't do them all.

It's easy to lose sight of the fact that apart from a shared diadnosis, our youngsters are individuals and what is suitable for one will not be for another. It can be all too easy to easy to lose soght of that and go along with the generalisations often applied by medics and the like due to "the label".

We all need to remember that our kids are people first, who happen to have a particular (or often several) diagnosis, but that they need to be looked at first as an individual with that diagnosis, be it cardiac defect, thyroid condition etc. and that only then should the DS be considered if it has some potential effect on treatment or outcome.


Well it depends on factors like which doctor’s treatment you are using and whether they are specialist or not. Getting proper treatment is necessary and for that you need to consult with experts only, because there are lots of amateur doctors out there as well. If you are looking over the internet, then see some medical discussion boards or websites like that shares the review of well known hospitals all over India. Also while selecting any doctor get feedbacks from their previous patients.