Louis' story 17 “Louis visits Dr in UK and goes on holiday”

Following this website I was in touch with the UK organisation STEPS who is the main charity for children with lower limb problems. I spoke to a lady who gave me lots of information on how the UK operates with regards to treading Talipes. STEPS only recommend the Ponseti treatment – and the proper one at that – so she was very concerned to learn that Temple St asks you to remove the plaster cast yourself as the proper Ponseti treatment always has the cast removed by the consultant themselves so they can see exactly how the foot has developed during the casting... It won’t do the child any harm removing it yourself but I guess it may prolong the treatment as the proper Ponseti casting only takes around 4 weeks. Most parents I have spoken to seem to have their baby in casts for 6-10 weeks.

Anyway, the STEPS lady informed me of consultant, Alison Hulme, that is a leader in the field of Ponseti treatment in the UK and that they always refer people to her and her team in Chelsea Westminster Hospital in London. So I thought to myself that it would not hurt to take Louis to see her.

I and Louis travelled to London on the 8th July. I had made a private appointment and we were seen straight away. Alison was super! She was very friendly and professional and asked me a few questions about Louis and she then took a look at his feet. She said that his left heel still is a little soft (a problem he has had from the start) and that he may need a second tenotomy and further casting. However, she said that she does not recommend that for now as the heel may correct itself when he starts to walk. So by doing the operation now we may be doing it unnecessary so it is better to wait.

She said that when a child starts to walk the feet may look odd and funny for a few months – this is totally normal and no need to worry. She said that you can’t really tell if a child is relapsing or developing wrong for at least 6 months after they start to walk! So there is no need to panic if the feet are flat or the child is walking with them very far apart as this tends to be normal for both Talipes and non Talipes kids for the first few months. So that was reassuring! She said that then what to look out for would be if they start to walk on the outer sole of their feet, and that the way they are wearing down the soles on their shoes can show this quite clearly. That may mean a relapse. The consultant you attend will of course pick this up, but I just wanted to know for myself too.

I also asked about the length of time Louis is in the boots, that he has been 23 hour per day for over 6 months now. She said there is no panic about overcorrection on his feet in this case, but that it would do him no harm to take the boots of a few hours each morning and a few hours each afternoon. As long as parents stick rigidly with always putting them on at nap time and night time it won’t do harm. The joy I felt inside was unreal! Finally my little boy who is trying to crawl could get some free time! She also said that in her opinion it is more important to have the boots on every night for 5 years than have them on full time for a year and then take the boots off altogether at 4 years. I said that Louis had been given the Dobbs bar but I had yet to get attachments for it so he can weare it. I asked is it good? As I had heard that Ponseti himself apparently did not like it! Alison said that it can be fine for children that repeatedly slip out of their boots (even though this is a sign of foot not corrected properly) but that she recomments using the normal bar as it gives the feet physiotherapy each thime the child moves one foot as it forces the other one to move too. So I will stick to normal bar - it is also much easier to live with as he can stand up with it.

So she said she would send her report to Mr Stevens in Temple St and £220 lighter I went off back to Ireland. I have a check up with Mr Stevens the 30th July so it will be interesting to see if he says anything about taking the boots off more than the 1 hour a day.

A day later we went on holiday to France and Louis learned to crawl properly! (see video clip)It was lovely for him to have bare feet for a few hours per day in the heat. He is now 10 months and can crawl with or without boots and bar. And he also pulled up to standing (without bar) for the 1st time!

Please follow Louis' story by going to blog “Louis’ story 18” and on from there.....