Dr Foot Discussion

[worriedmum]

My 5month old baby has Congenital Vertical Talus - initially it was thought that it was just Talipes and we were told to massage both his feet and it would soon correct. This didnt work and he was x-rayed at Booth Hall Childrens Hospital who discovered my son has CVT the most extreme form of flat feet. I was mortified as his diagnosis meant that he would have both entire legs and feet in plaster for 5wks then operation more plaster and prob special shoes and maybe even stirrups - he has an operation on Monday (2/06/0 and the consultant (Naomi Davis) is going to be inserting metal pins into his feet to correct the condition with more plaster for a few weeks.

I am very worried as information on the internet is very limited about CVT i have so many questions I want to ask other parents but it seems like there's no one out there suffering with my sons condtion.

Has anyone out there been thru this? Did their other children go thru this too? How was your child after the operation - are they in a great deal of pain? Has the conditions resurfaced after surgical correction?

From the information on the internet I am led to believe that once my son has had his operation the outlook is 'good'. I REALLY just need more info from other mums/dads/professionals - I am so stressed my poor baba's in plaster (although it doesnt bother him much) about to face operation and I have no clue (apart from what I read online) about what life will be like after the op....

PLEASE ANYONE OUT THERE - HELP!


23/06/08
My sons since had his operation - it went well! He's in plaster going for a change tomorrow - he was home within hours of his operation - he's such a soldier. I'm still worried as to what the results will be - he'll be having special shoes for a while after this too.. Its strange that no other parent has come forward with a child with this condition - It's really concerning - I've got no one to bounce things off or compare with - ah well.


7/07/08
My son will be having an operation on Tuesday (8/07/0 to remove the wires currently in his feet. He has shown no signs of any pain or discomfort whilst the wire has been in his feet and the plaster cast has been on. I will report back on how his operation goes.

[Barry]

Hi -

I'm a 44 year old male in the US who also had CVT at birth. I underwent several operations, years of casting and special shoes, and I turned out just fine. Although I had and still have foot pain and discomfort, I played all kinds of sports and did just about everything else kids with normal feet could do... except of course, stand on my tip toes.

Best of luck to you and your son!

[worriedmum]

I am SO HAPPY! That you have been able to put my mind at rest - my Son came out of operation quite groggy on Tuesday (8/0708). The wires are out of his feet and he now wears a brace 23hours a day for 3months. My Sons consultant did warn me that my Son may have to have the operation again in life but she was quite happy with the result. I intend on taking him swimming and encouraging him to take part in all kinds of sports to ensure his feet remain active.

Thank you for posting!

[granny]

my son was born in 1977 with CVT and a hip problem on the same side. We had to manipulate his foot for a month to no avail. He then had the first of several major operations to correct the deformity which were successful in that he could walk but required special shoes.Following another op to flatten his foot he can now wear only boots and has a difference of about 4 sizes in his feet!! Unfortunately his leg was shorter on that side and age 13 had his leg lengthend by 7cms. Nothing stopped him doing anything, the least of it was being caught on the top of the climbing frame at playgroup age 3! He has since been very active doing swimming, abseiling, Tae Kwondo, cycling and is currently a motor cycle instructor. All his previous jobs have involved standing.
It was worth all the ops and pain as we were told he would never walk without them. Plastercasts become a way of life after having the first hip spica on for 10 months till he was nealy a year old then a single leg pot for another 6 months! He leatnt how to get acroos the floor in spica and walk with furniture in single pot even though his foot was in 'Ballet point'.
You can hardly tell he has a limp now. he knows he will be suscpeptible to arthritis when he is older but making the most of life now having just motocycled to Morocco and back this summer. Never stop a child doing what he/she wants, they know their limits bette than us.

[worriedmum]

Once again i thank you all for your words of comfort! I have been so worried about my Son at times I have neglected to remember that he is still a 'normal' and 'average' baby. For months (whilst he was in cast) I had him sat on my knee or hip going everywhere with me. Now, without his cast (with his brace only) I'm begining to put my him on the floor where he's now begining to roll and pull himself. His legs are getting much stronger too and he is attempting to jump!

It sounds mad but I think I was in a form of bereavement for the 'perfect' baby which your led to believe everyone has. Now, I'm thinking more positive and I'm not too worried that there aren't many other parents/people with congenital vertical talus. After all I'd only get bogged down by their mile stones - every baby is different.

Thank you!

[worriedmum]

I am so very excited! After 3months of wearing a Ponsetti brace for 23hours a day my baby is being allowed to go without them day time only. So he wears them just at night!

We are so very excited - my little precious has managed to learn to crawl with them, stand with them and even jump! They seem to have done a good job at holding the work carried out in his operation. His feet look very good actually. He has two dimples on either foot where I imagine the pin was inserted, it isnt tender there at all and I think in a couple of years they wont be visible. He seems to be able to bend his feet up to his shin past the point of other babies/people but I think this is due to the CVT. He usually sits with his feet slightly pointing to his shin but they are easy to place in pincer point although he doesnt do that much if at all (babies dont need to/know how to tip toe at this point) A previous message earlier from a man with CVT told that he cant pincer point as an adult so I think this is why my baby doesnt do it much now.

Going back to Booth Hall Childrens hospital, Manchester on the 1/10/08 for a check up. Its at this appointment that he'll be able to stop wearing his brace in the day. Wish us luck!!

(thanks for reading!)

[tracey.welsh]

my 5yr old son has the condition current under the care of mr zenios at booth hall he was in casts since birth then splints up 2 the age of 3 nothing worked he had an operation 13th sept 07 had wires placed in his foot and a full cast 4 six weeks the cast and wires were then removed he had light weight casts put on 4 eight weeks then splints for six months after numerous outpatients appointments they finally agreed with me that the operation failed on october 1st 08 he had his second operation he is still in a full lengh cast but he has 3 wires this time instead of one he has since been back to hospital with severe pain they gave him the wrong painkillers he is coping well now the pain has settled we are due to go back in hospital 26th october 2008 for wires and casts removed hopefully everything is ok i hope your little boy is ok and dosnt have to go through the same experiance as we have i am a single parent and it has been so hard i hope u found this e mail helpfull tracey

[worriedmum]

Thank you for your comment - I hope ur son gets better soon! I've sent u a private message..

My son is now in braces since 1st Oct night time only - I'm happy with how his feet look aesthetically...I'm a little concerned as he rarely stands straight - it seems like his muscles or tendons may be slightly tight somewhere as he is always slightly bent at the knee although I can pull his legs straight which is painless to him...I'm not due to go back to Booth Hall till January - meanwhile i will continue to massage his feet and legs vigorously each time i cream him.

My son is attempting to walk - which I am pleased with as he is 11mnths old and this is when other children begin to walk so i am not worried that.

I'll keep you all posted on when he begins walking which I am hoping is soon! x

[tracey.welsh]

hiya marsha hows your little boy?ive just come home today been in booth hall he has had his wires removed and he got a smaller cast on .he seems to be ok only time will tell ive been told his foot looks good im going back on wednasday he gunna be measured for splints .god its nice to be home peace at last you know what its like on ward 6.by the way happy new year

[leah's_momma]

Our 3 month old daughter was diagnosed with CVT and is starting the casting process a week from tomorrow. A lot of the research i've done says that there are usually other conditions that go along with it. Does anyone have any info on these cromosomal abnomalities or other issues?

[tracey.welsh]

hello was your child born like this my son was casted at 3 months i have never heard this condition relating to chromosones and i know quite a lot about it .they try casting for a while to see if they can bend the bones back into position my son had casts and splints till he was three .my son has had 2 operations because the casting didnt work he is now 5 and recovering from the last surgery in oct 08 but he can walk now unaided my advice would be to get as much info of the consultant as u can knowing exactly what is going on help you cope i hope this has been some help to you good luck ps your child will cope fine in a cast they adapt better than us

[Dianne]

Hello, I just found this site. I only wish it existed 21 years ago. My daughter was diagnosed with CVT in 1989. The doctor that diagnosed it was out of the Boston Children's Hospital and he was the fifth doctor to see her--he knew right away--none of the other doctors really knew what she had and a couple thought her foot would fix itself. Shortly after meeting the Boston physician, she had surgery to correct it. She was casted until it heeled but after that no further surgeries--just many physical therapy sessions to deal with pain here and there as she grew up (she is now going to school to be a doctor in PT!). My daughter was able to participate in sports all her life, although she was never the fastest, she couldn't pivot well and stand on her toes, she couldn't jump well, but she could play!. Her toes also curl over and she doesn't have a lot of feeling. One doctor told us that she had minor spinal bifoda and that she may be prone to back pain she got older (she does get back pain). Her shoe sizes are different and she still struggles with this today because she can't wear most types of shoes and beautiful heels are out of the question. Sneakers are great! She has been having pain lately as she is getting back into working out in college, and we have made an appointment for her in a month--we hope there is surgery that can help her even more now that her foot has stopped growing. Good luck to everyone and if any adults out there have had surgery in their adult years to improve their CVT I'd love to hear about it.

[ljfuller]

My 10 month old boy is getting ready to have surgery for CVT this coming Monday. I have been going to Shriners Hospital in St. Louis and he is being treated by Matthew B. Dobbs, M.D.

I have been told that I can choose between the braces that Shriners offers at no cost or I can purchase a pair.... i just really don't know what the difference is. If anyone knows ... I would really like to know to aid me in my decision on which brace to go with.

Thank you so much... for all the previous posts. So glad I found this site.
Also, good luck to all the rest of ya out there!!!

Laura Fuller

[mo]

our 8 week old son has CVT, been on weekly casting since 2 1/2 weeks, got his 5th casts last week, has had MIR and ultra sound on spine to rule out any other associations (came back clear) due to get op when 6 months to insert wires, not sure how many casts are going to be given and what will happen between last cast and op as there is going to be a bit of a gap.

[worriedmum]

Thought I'd check in on the page and see how other parents are responding to what I started and how they were coping. As I've previously described I was very happy with the surgery carried out on my sons feet by Naomi Davis at Booth Hall Children's Hospital. I go back every six months and get replacement Ponseti braces my son is walking and running and he can manipulate his feet well. I'm a little concerned that his heel protrudes a little but I feel that may be a trademark of CVT.

I've read that about 60% of babies born with CVT have other disabilities, I'm thankful that my son is fine in every other way.

Still hoping that more research is done into the condition and more information/support groups are available for parents!

Goodluck with it all parents and I wish ur babies the best!