Extracted from nosurgeryforclubfoot forum..
Hi everyone,
We just returned from Iowa for a second opinion for 17 mos old DS (BCF). Met with Dr. M and Maria, who felt like old friends because I've read so much about them!! The hospital is beautiful and the clinic is awesome. Iowa City is a very nice small city full of incredibly friendly people.
DS was treated here in Detroit by a Ponsetti approved doctor. Dr. M said he did a good job, and used our pictures of DS's serial castings to teach his "students of the day". The only difference in our doctor's treatment verses Dr. M's treatment is for DS's tightening heel cord. It's been getting stiffer since taking off the shoes during the day so he can walk. Our doctor was talking about doing another tenotomy. I pushed for PT, which helped. Dr. M said it's common for this to happen once the shoe time decreases. In fact, keeping the heel cord stretched is one of THE most important job of the shoes. He gave us the option of PT for 20 min/day for 3-4 months, then recheck, or recasting for 2 times. We chose the casts because DS doesn't like the PT, plus it's almost a sure fix. So I will return to Iowa in 10 days for a cast change. Then we can remove the 2nd casts at home.
As far as the DOBBS BAR - Dr. M didn't say anything bad about it, BUT he did say there are only 2 papers (studies) on it so far, and the first paper was done using a slightly different model than is sold now. The concern is that the mobility allowed with foot flexion and extension allows the heel cord too much movement and it seems to start tightening up. They have seen 6 cases of tight heel cords possibly form Dobbs bar use already. (We got ours after DS's problem was noticed, so I don't think his tightness is from the Dobbs bar). Dr. M didn't tell us not to use it, but did suggest that if we did continue to use it that we definately should do the heel cord stretches. If it starts to tighten up within 6 weeks time, then he would recommend going back to the Ponsetti bar.
We also talked about the ATTT. Dr. M there's a long time study now that shows that the surgery doesn't cause any later-in-life problems at all (no arthritis, etc.), so if DS does need it later, not to worry at all. (We repeatedly stated we were trying to avoid surgery at all costs). He did caution us not to let anyone do it before the age of 3, because one of the foot bones isn't fully calcified until then. Otherwise, it's not the end of the world or a failure and shouldn't cause us any sleepless nights.
While we were waiting for our casting, Maria went over all the details about coming back to Iowa next week. The Ronald McDonald House takes requests, using severity of illness as their criteria, so we may or may not get a room. They do work with the local hotels if they're full. I just saw the lobby and family room area when I went to get on the list, but the place is very comfortable and inviting. There is a free shuttle to/from the airport and the hospital. We stayed at the Heartland Inn, which is undeer $70/night with the hospital rate. Free breakfast, light supper snacks, and a shuttle to the hospital are included. It was also very nice, and most guests are there for hospital reasons.
Then the best part - I turned around and there was Dr. Ponsetti!! I teared up, and just really couldn't express my gratitude enough. My child and many others will live completely normal lives thanks to the dedication of him and his staff. How can words ever be enough?? He looked at DS's pictures, touched his feet, smiled and nodded. He still goes to clinic regularly to see "his kids" and watch them walk. He is very excited about the upcoming Ponsetti races, so if you're in Iowa for the conference definately participate. He should be at the finish line watching and smiling.
All in all, it was a very wonderful experience. Lessons learned:
*If you're unsure about your child's feet at all - GO if you can. You won't regret it.
*The businesses around the University cater to hospital patients and their families. You will be comfortable no matter where you stay.
*Everyone at the Ponsetti Clinic will do absolutely everything in their power to help you in any way they can.
*Consider doing the heel stretches once your shoe time decreases and your child starts walking. It won't hurt and may help.
*Use your bar and shoes 14 hours/night faithfully.
*The Ponsetti-recommened doctors are very well trained and skilled at the method.
*Meeting Dr. Ponsetti is a humbling and awesome experience.
I hope our experience helps and encourages some of you on your club-foot journey.
Many Belssings,
Diane
Blog Author Note :
We went to see Dr Amnuay in Bangkok on 11th Aug.Dr Amnuay said Dania's feet seems to be normal but he need to know in details. He sent us for X-Ray.After X-ray, it was found that Dania's heel cord is still tight and was not as good as what he expected to be.Dr Amnuay told us that, we need to change the way we strech her feet. We need to do it more frequently. He also said that perhaps Dania need another tenotomy. Tenotomy means her tendon will be cut again and she will be recast for another 3-4 weeks. However, he said it is the last things that he wants to do seems Dania can walk, can run and can squat like any other normal kids.
Still, he wants to see more improvement when he see us for another 6 months..
We need to work harder..I wont let Dania's tendon to be cut again...
I'll make sure this time, the heel cord will cooperate..insya allah!!
Established since 2008.
Wednesday, August 26, 2009
Tuesday, July 28, 2009
Relapse
Frankly, I'm scared of relapse..That's why I'm trying very hard to strictly stick to brace protocol..tried to make it 10-12 hours per day,but sometimes it is almost impossible..Recently Dania was complaining again..her feet is in pain again and at night she was crying..She's pointed at the scar located at the heel..(the most stupid surgery that happened to her)..If it is really that surgery that caused her pains, I hope the doctors that decides to perform the surgery will never find peace in their life...will never..
I've to punish Dania whenever she is not cooperating with the brace protocol..hmm..Pity her but we're giving her our best, right?
Extracted from Ponseti International website..
Relapses are a common occurrence among children with clubfoot up to the age of six years. The following is the rate of relapse for discontinuing brace-wearing at the age designated: 1st year 90 percent, second year 70-80 percent, third year 30-40 percent, 4th year is 10-15 percent, subsequent years are about 6 percent. Bracing is an essential part of the treatment of clubfoot and prevents relapses very effectively. Severity of the deformity at birth is not a reliable indicator of the odds of relapse, therefore almost all clubfoot patients are held to the same bracing protocols in order to provide them with the best protection against regression.
Bracing protocol needs to be tailored to the individual child based on the age, the relapse rate associated with that age, and when the correction was finished. For example, bracing hours will be longer for a new born that was corrected in three weeks as opposed to an older child that is already walking when correction is achieved. Importantly, the underlying cause of clubfoot is a muscle developmental and growth problem, so it is very important that children who are using the brace maintain some degree of mobility.
The foot abduction brace is used only after the clubfoot has been completely corrected by manipulation, serial casting, and possibly a heel cord tenotomy. The foot abduction brace, which is the only successful method of preventing a relapse, when used consistently as described is effective in > 95% of the patients. Use of the brace will not cause developmental delays for the child.
A Foot Abduction Brace (also commonly mis-labeled a Denis Brown Bar or DBB) consists of an adjustable length aluminum bar with adjustable footplates onto which shoes attach. It is recommended that an adjustable bar is used in stead of a fixed length bar because the child will quickly outgrow the fixed length bar. The orientation of the footplates to the bar is set by the orthotist as recommended by your doctor. Typically, the shoes are set at 60-70 degrees of external rotation. The last cast applied by the doctor must also have been rotated to the 60-70 degrees of abduction (external rotation), otherwise the brace will be uncomfortable for the child. There should be a bend in the bar or the mounting of the footplates to obtain 10-15 degrees of dorsiflexion. The shoes are straight last, meaning there is no curvature, so they can go on either foot. If the bar does not have a quick-release mechanism, the shoes are oriented with the buckles on the inside, so that you do not have to turn the baby over to tighten the strap and laces. Importantly, the distance between the inside edges of the heels of the shoes is equivalent to the child’s shoulder width. This distance is the most comfortable for the child and prevents knee or hip problems. If you lay the brace on the floor with the shoes facing upward, the child’s shoulders should fit snugly in between the shoes. Children go through major growth spurts, so if your normally agreeable child is suddenly waking and fussing, it is appropriate to check the length of the brace to see if an adjustment needs to be made prior to their next follow up appointment with the doctor. The FAB holds the foot in the proper abduction (external rotation) and dorsiflexion (forefoot lifting up toward the calf) to keep the foot properly stretched.
Wearing Schedule:
Use the brace once the last set of casts is removed. DO NOT wait to get the brace after the cast is removed since there is a high chance of regression that can lead to discomfort and non-acceptance of the brace. If the brace is not ready, a holding cast should be applied to maintain final correction. It is also important not to end treatment early.
The following schedule is recommended:
a. For young babies with clubfeet corrected in the first few months of life:
i. 23 hours for three months.
ii. Then a gradual weaning schedule as follows: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. The time in the brace does not need to be consecutive, but try to have the bulk of the time while the child is sleeping nights and naps to encourage mobility during the waking hours. If your child attends a daycare, consider leaving the brace on in the morning and instructing the daycare as to what time each day that the brace should be removed, or if your daycare providers are confident and willing, instruct them how to remove and reapply the brace for nap times.
iii. As the child grows and is walking full time, maintain night-time wearing of the brace for 12-14 hours per day up to age 4-5 years.
b. If the final correction is achieved after 8-9 months of age and the child is ready for crawling or walking, it is important to allow some mobility to help in the development of the weak muscles.
i. Therefore, it is recommended to start initial bracing with 18-20 hours a day for 2 months, then go to 16 hours a day for 3-4 months, and then to the standard maintenance protocol of 12-14 hours to age 4-5 years.
c. Some children with clubfoot (about 2 or 3 percent) may also have loose joints.
i. In these cases, the abduction (external rotation) of 60 to 70 degrees may lead to flat foot, usually presenting when the patient starts walking at 10-16 months of age and after. These children should set the shoe to 30-40% abduction. Do not stop using the brace as there would be risk of relapse.
d. If the child has atypical/complex clubfoot.
i. After correction the shoe used for the affected foot should be set to 20-30 degrees. There should not be bending on the bar unless there is 10-15 degrees of dorsoflextion with the last cast. As the foot becomes more normal looking the abduction (extended rotation) of the shoe should be changed to 40-50 degrees.
e. For those children who are treated 2 and older at the time of correction please refer to Dr. Morcuende.
Details can be viewed at Ponseti Website. This website is most helpful. If you sceptical with your current doctor, pls feel free to refer to this website or email to Dr Morcuende.
I've to punish Dania whenever she is not cooperating with the brace protocol..hmm..Pity her but we're giving her our best, right?
Extracted from Ponseti International website..
Relapses are a common occurrence among children with clubfoot up to the age of six years. The following is the rate of relapse for discontinuing brace-wearing at the age designated: 1st year 90 percent, second year 70-80 percent, third year 30-40 percent, 4th year is 10-15 percent, subsequent years are about 6 percent. Bracing is an essential part of the treatment of clubfoot and prevents relapses very effectively. Severity of the deformity at birth is not a reliable indicator of the odds of relapse, therefore almost all clubfoot patients are held to the same bracing protocols in order to provide them with the best protection against regression.
Bracing protocol needs to be tailored to the individual child based on the age, the relapse rate associated with that age, and when the correction was finished. For example, bracing hours will be longer for a new born that was corrected in three weeks as opposed to an older child that is already walking when correction is achieved. Importantly, the underlying cause of clubfoot is a muscle developmental and growth problem, so it is very important that children who are using the brace maintain some degree of mobility.
The foot abduction brace is used only after the clubfoot has been completely corrected by manipulation, serial casting, and possibly a heel cord tenotomy. The foot abduction brace, which is the only successful method of preventing a relapse, when used consistently as described is effective in > 95% of the patients. Use of the brace will not cause developmental delays for the child.
A Foot Abduction Brace (also commonly mis-labeled a Denis Brown Bar or DBB) consists of an adjustable length aluminum bar with adjustable footplates onto which shoes attach. It is recommended that an adjustable bar is used in stead of a fixed length bar because the child will quickly outgrow the fixed length bar. The orientation of the footplates to the bar is set by the orthotist as recommended by your doctor. Typically, the shoes are set at 60-70 degrees of external rotation. The last cast applied by the doctor must also have been rotated to the 60-70 degrees of abduction (external rotation), otherwise the brace will be uncomfortable for the child. There should be a bend in the bar or the mounting of the footplates to obtain 10-15 degrees of dorsiflexion. The shoes are straight last, meaning there is no curvature, so they can go on either foot. If the bar does not have a quick-release mechanism, the shoes are oriented with the buckles on the inside, so that you do not have to turn the baby over to tighten the strap and laces. Importantly, the distance between the inside edges of the heels of the shoes is equivalent to the child’s shoulder width. This distance is the most comfortable for the child and prevents knee or hip problems. If you lay the brace on the floor with the shoes facing upward, the child’s shoulders should fit snugly in between the shoes. Children go through major growth spurts, so if your normally agreeable child is suddenly waking and fussing, it is appropriate to check the length of the brace to see if an adjustment needs to be made prior to their next follow up appointment with the doctor. The FAB holds the foot in the proper abduction (external rotation) and dorsiflexion (forefoot lifting up toward the calf) to keep the foot properly stretched.
Wearing Schedule:
Use the brace once the last set of casts is removed. DO NOT wait to get the brace after the cast is removed since there is a high chance of regression that can lead to discomfort and non-acceptance of the brace. If the brace is not ready, a holding cast should be applied to maintain final correction. It is also important not to end treatment early.
The following schedule is recommended:
a. For young babies with clubfeet corrected in the first few months of life:
i. 23 hours for three months.
ii. Then a gradual weaning schedule as follows: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. The time in the brace does not need to be consecutive, but try to have the bulk of the time while the child is sleeping nights and naps to encourage mobility during the waking hours. If your child attends a daycare, consider leaving the brace on in the morning and instructing the daycare as to what time each day that the brace should be removed, or if your daycare providers are confident and willing, instruct them how to remove and reapply the brace for nap times.
iii. As the child grows and is walking full time, maintain night-time wearing of the brace for 12-14 hours per day up to age 4-5 years.
b. If the final correction is achieved after 8-9 months of age and the child is ready for crawling or walking, it is important to allow some mobility to help in the development of the weak muscles.
i. Therefore, it is recommended to start initial bracing with 18-20 hours a day for 2 months, then go to 16 hours a day for 3-4 months, and then to the standard maintenance protocol of 12-14 hours to age 4-5 years.
c. Some children with clubfoot (about 2 or 3 percent) may also have loose joints.
i. In these cases, the abduction (external rotation) of 60 to 70 degrees may lead to flat foot, usually presenting when the patient starts walking at 10-16 months of age and after. These children should set the shoe to 30-40% abduction. Do not stop using the brace as there would be risk of relapse.
d. If the child has atypical/complex clubfoot.
i. After correction the shoe used for the affected foot should be set to 20-30 degrees. There should not be bending on the bar unless there is 10-15 degrees of dorsoflextion with the last cast. As the foot becomes more normal looking the abduction (extended rotation) of the shoe should be changed to 40-50 degrees.
e. For those children who are treated 2 and older at the time of correction please refer to Dr. Morcuende.
Details can be viewed at Ponseti Website. This website is most helpful. If you sceptical with your current doctor, pls feel free to refer to this website or email to Dr Morcuende.
Tuesday, June 30, 2009
On Brace..
On the net, people are still arguing with which is the best FAB for clubfoot child..well, one thing for sure is after we've experienced most terrible treatment from our local hospital, now,we are happy with Ponseti-Mitchell FAB which Dania's comfortable in it since Aug 2008..
So far we don't need Dobbs Barr since Dania is quite tolerable with Mitchell FAB..Exclude recent June, she was quite unhappy with certain things includinh wearing the FAB, and I guess she missed her dad so much (her dad had oversea's assignment).. she always cried during night time and complaint her feet is painful and asked me to take out the brace which I did but when she return to sleep, I put the brace on..I even put her brace during day time for few hours..
I will not turn back, so do you parents..We've been in this journey so far and I'm confident that we will be on the right track as long as we stick to Ponseti Protocol...It is so heart-sickening to watch your child in cast again, isn't it?
I still didn't get any reply from media for Ponseti method publicity..Hmm..Dr Amnuay is right, this clubfoot is just a small issue and will not be the highlight of the day..
But we need to do something to educate clubfoot's parents who needs our experience..any ideas?
Friday, June 12, 2009
Inspirational Story..
Readers & parents,
This is an emotional yet inspirational statement quoted from a parent who had a clubfoot child and the child recently graduated from FAB.
From Nicky Dugan..
I have been looking forward to writing this email for four years. Not to gloat, but to encourage all of you who might be in the earliest stages of treating clubfoot and let you know that, yes, some day this will all be over!
In 2005, I went to my 20-week ultrasound for my second child with that usual euphoria over being able to "meet" my kid. I left devastated by the news that he would have unilateral clubfoot. My uncle was born with clubfoot in World War II Germany and was treated like a pariah -- he subsequently became the village idiot. I feared the worst. I called my pediatrician on a Friday night and got no reassurances about a "normal" life - he said the treatment consisted of castings and likely surgery, with stiffness, scar tissue, and arthritis to follow. His foot would never really be normal. There were plenty of orthopedic surgeons around who could take care of all this. His only silver lining was, "in the grand scheme of deformities, it could be a lot worse."
Through my tears, I hit the Internet. And that's when I found this group. I remember reading about Martin Egbert, who made it his mission to ensure that the world knew surgery wasn't the only option for his son Joshua. I studied dozens of photos of feet and casts and bars. I read about pressure blisters and unqualified doctors whose worked needed correction. I wrote to Dr. Ponseti and asked, "Surely in this metropolitan city of San Francisco there is SOMEONE who practices your method?" No dice - we'd have to drive 45-minutes to Walnut Creek to see a Kaiser doctor outside our network. It all sounded so overwhelming. But I talked to Dr Colburn before Farley was born and he gave all those reassurances I'd been seeking... "Don't worry, just enjoy your baby, come see me when you're ready - doesn't have to be minutes after he's born. He will be fine. We will fix this. Don't worry."
I detached myself from this second pregnancy anyway - could I love a kid with a deformity the way I loved my first? But when Farley arrived, I loved and studied that sweet little crooked foot. So tiny. So unique. And then he proved to be my little trooper. On day five, off to Dr Colburn we drove. Farley fell asleep during his first casting. And his second... and third... And seven weeks later, nary a peep during his tenotomy. His foot came out beautiful, if just a little wrinkled at the ankle. But lo, when I saw those Ponseti-Mitchell shoes for the first time, I cried all over again. Four years of wearing these? You gotta be kidding me! They're torturous! Buckles and metal! How would he ever move around? How would he sleep? 23 hours a day in these things? Would he ever learn to walk?
And yet, here we are, four years later, having complied with wearing those shoes every single night and nap (except on that flight to Sydney last year - we had to draw the line!)... The pipe insulation to keep him from killing all of his and his crib. The banging and kicking as he swung that thing around. Trying to get those things into a sling and figuring out how to breastfeed. The drudgery of having to explain them to babysitters and care providers. All those strange looks at playgrounds and airport security. The hot sticky humid nights when you couldn't believe you were putting socks and shoes on your child. The comedy of seeing your kid's foot resting high in the air as he slept. The panicked moments of returning back to the house to fetch them before we drove off again to preschool. The hundreds of dollars not covered by insurance. The removal for third "Mama, I have to go potty" delay tactic of the evening. The triumph of being able to buckle those things in complete darkness. The loving care of the Mitchell family who provided us about five different pairs over the years -- the obvious commitment they have to this treatment. The PRIDE of knowing that all of this was an investment in a normal life.
And so this week, we got the brilliant news... Farley is officially 100% corrected! He has one helluva beautiful, gorgeous and normal foot. We can finally retire our trusty Ponseti-Mitchells and enjoy the unbelievable novelty of sleeping in bare feet! And I can assure you that Farley runs, walks, hops, jumps, rides his bike, keeps up with his big brother, and NEVER complains. Yeah, he's going to have a slightly smaller calf when he hits puberty. But other than that, no one will ever know a thing about these last four years or how this little super hero stuck it out without so much as any pushback.
We are full of gratitude -- to Dr. Ignacio Ponseti, John Mitchell, Dr. Michael Colburn, and ALL OF YOU for your wisdom, support, sharing, questions, answers, and reassurance. You go through so many stages on this list -- from clueless, anxious and full of questions to confident elder who has many answers and provides the comfort. Thank you, thank you.
The only lingering sadness I have is for the hundreds (thousands?) of children whose parents and doctors don't know about this miracle treatment. That the Ponseti method isn't de rigeur all over the world and that I still have to explain it to doctors. We will continue to give generously to the Ponseti International Association for the Advancement of Clubfoot Treatment in hopes that, some day, this nail will stop attracting the hammer of surgery. Keep doing what you do here -- it's the first place people discover when they get that diagnosis for their baby. Without you, this road would be dark, uncertain and very lonely.
And for all of you just starting the journey, take heart. You are doing the best thing possible for your child. You're not taking the easy way out. Swell with pride. Hug that kid. And know that it's all going to be ok. It's not really all that hard. "Don't worry."
-End-
I guess to be like Nicki, we need to keep doing on what we need to do.This clubfoot children need our attention spiritually.Good Luck to all of us!!
This is an emotional yet inspirational statement quoted from a parent who had a clubfoot child and the child recently graduated from FAB.
From Nicky Dugan..
I have been looking forward to writing this email for four years. Not to gloat, but to encourage all of you who might be in the earliest stages of treating clubfoot and let you know that, yes, some day this will all be over!
In 2005, I went to my 20-week ultrasound for my second child with that usual euphoria over being able to "meet" my kid. I left devastated by the news that he would have unilateral clubfoot. My uncle was born with clubfoot in World War II Germany and was treated like a pariah -- he subsequently became the village idiot. I feared the worst. I called my pediatrician on a Friday night and got no reassurances about a "normal" life - he said the treatment consisted of castings and likely surgery, with stiffness, scar tissue, and arthritis to follow. His foot would never really be normal. There were plenty of orthopedic surgeons around who could take care of all this. His only silver lining was, "in the grand scheme of deformities, it could be a lot worse."
Through my tears, I hit the Internet. And that's when I found this group. I remember reading about Martin Egbert, who made it his mission to ensure that the world knew surgery wasn't the only option for his son Joshua. I studied dozens of photos of feet and casts and bars. I read about pressure blisters and unqualified doctors whose worked needed correction. I wrote to Dr. Ponseti and asked, "Surely in this metropolitan city of San Francisco there is SOMEONE who practices your method?" No dice - we'd have to drive 45-minutes to Walnut Creek to see a Kaiser doctor outside our network. It all sounded so overwhelming. But I talked to Dr Colburn before Farley was born and he gave all those reassurances I'd been seeking... "Don't worry, just enjoy your baby, come see me when you're ready - doesn't have to be minutes after he's born. He will be fine. We will fix this. Don't worry."
I detached myself from this second pregnancy anyway - could I love a kid with a deformity the way I loved my first? But when Farley arrived, I loved and studied that sweet little crooked foot. So tiny. So unique. And then he proved to be my little trooper. On day five, off to Dr Colburn we drove. Farley fell asleep during his first casting. And his second... and third... And seven weeks later, nary a peep during his tenotomy. His foot came out beautiful, if just a little wrinkled at the ankle. But lo, when I saw those Ponseti-Mitchell shoes for the first time, I cried all over again. Four years of wearing these? You gotta be kidding me! They're torturous! Buckles and metal! How would he ever move around? How would he sleep? 23 hours a day in these things? Would he ever learn to walk?
And yet, here we are, four years later, having complied with wearing those shoes every single night and nap (except on that flight to Sydney last year - we had to draw the line!)... The pipe insulation to keep him from killing all of his and his crib. The banging and kicking as he swung that thing around. Trying to get those things into a sling and figuring out how to breastfeed. The drudgery of having to explain them to babysitters and care providers. All those strange looks at playgrounds and airport security. The hot sticky humid nights when you couldn't believe you were putting socks and shoes on your child. The comedy of seeing your kid's foot resting high in the air as he slept. The panicked moments of returning back to the house to fetch them before we drove off again to preschool. The hundreds of dollars not covered by insurance. The removal for third "Mama, I have to go potty" delay tactic of the evening. The triumph of being able to buckle those things in complete darkness. The loving care of the Mitchell family who provided us about five different pairs over the years -- the obvious commitment they have to this treatment. The PRIDE of knowing that all of this was an investment in a normal life.
And so this week, we got the brilliant news... Farley is officially 100% corrected! He has one helluva beautiful, gorgeous and normal foot. We can finally retire our trusty Ponseti-Mitchells and enjoy the unbelievable novelty of sleeping in bare feet! And I can assure you that Farley runs, walks, hops, jumps, rides his bike, keeps up with his big brother, and NEVER complains. Yeah, he's going to have a slightly smaller calf when he hits puberty. But other than that, no one will ever know a thing about these last four years or how this little super hero stuck it out without so much as any pushback.
We are full of gratitude -- to Dr. Ignacio Ponseti, John Mitchell, Dr. Michael Colburn, and ALL OF YOU for your wisdom, support, sharing, questions, answers, and reassurance. You go through so many stages on this list -- from clueless, anxious and full of questions to confident elder who has many answers and provides the comfort. Thank you, thank you.
The only lingering sadness I have is for the hundreds (thousands?) of children whose parents and doctors don't know about this miracle treatment. That the Ponseti method isn't de rigeur all over the world and that I still have to explain it to doctors. We will continue to give generously to the Ponseti International Association for the Advancement of Clubfoot Treatment in hopes that, some day, this nail will stop attracting the hammer of surgery. Keep doing what you do here -- it's the first place people discover when they get that diagnosis for their baby. Without you, this road would be dark, uncertain and very lonely.
And for all of you just starting the journey, take heart. You are doing the best thing possible for your child. You're not taking the easy way out. Swell with pride. Hug that kid. And know that it's all going to be ok. It's not really all that hard. "Don't worry."
-End-
I guess to be like Nicki, we need to keep doing on what we need to do.This clubfoot children need our attention spiritually.Good Luck to all of us!!
Tuesday, June 2, 2009
Happy Birthday Dr Ponseti
He is a great man, a great doctor, the greatest inventor for clubfoot treatment..
He replied my email within 24 hours,
He consoled me when I was frustrated with Malaysian Doctors,
He assured me that Dania would be able to walk as normal kid..
He is the one who open a new journey for us..
Now, he is retiring, but his effort towards this treatment will not be forgotten,
at least not me & Dania..
Dr Ponseti and Mrs Ponseti,
Thank you so much for your kindness, warm-hearted and assistance..
We pray for your good health, happiness & longevity..
Happy 95th Birthday Dr Ponseti..
Best wishes from us in Malaysia
Monday, May 18, 2009
Resistance vs Responsibility
Today I just got to know on how US parents went through financial difficulty in order to get the best non-surgical treatment for their clubfoot children. In States, they have Shriners, Ronald McDonald house, church houses, Kiwanis, charity flights e.g. Angel flight to fly them to Iowa Hospital, St Louis Hospital.
See, Mazila told me once, she had no choice but to stay with Dr Lyn Azura. She said if she got money, of course she will be flying to Bangkok like us. The good news is Dr Amnuay wants to sponsor their flight, accomodation & treatment. There are angels in Bangkok rather than here!
Dr Amnuay told me this clubfoot thingy is just a small issue in Thailand’s medical field.They have gone through a lot of resistance, challenges and egoism among the big doctors. At least they do have some physicians who cares about a child like Dania.
I think in Malaysia, this clubfoot is still considered as a small issue.
I remember a doctor told me via my personal blog that I should be thankful that my daughter do not have hole-in-heart problem. This is not about thankful or whatever you want to name it, this is about the credibility of a physician and their responsibility to their patient
>to cure their sickness,
>to ease their pain,
>to treat their illness with the CORRECT method without prejudice, without any modification, and without any delays.
Anyhow, in my personal opinion, whether you are rich or not, it is your responsibility to seek for the best treatment and work out all the possibilities to assist your child to get a better life.
The rest, is in God willing.
To Malaysian Orthopedics Association delegates who are going to Sutera Harbor this week, Selamat Bersidang.
Note : I can't wait to meet up my neurosurgeon coming July for annual MRI.Yippi yeahhh!!
See, Mazila told me once, she had no choice but to stay with Dr Lyn Azura. She said if she got money, of course she will be flying to Bangkok like us. The good news is Dr Amnuay wants to sponsor their flight, accomodation & treatment. There are angels in Bangkok rather than here!
Dr Amnuay told me this clubfoot thingy is just a small issue in Thailand’s medical field.They have gone through a lot of resistance, challenges and egoism among the big doctors. At least they do have some physicians who cares about a child like Dania.
I think in Malaysia, this clubfoot is still considered as a small issue.
I remember a doctor told me via my personal blog that I should be thankful that my daughter do not have hole-in-heart problem. This is not about thankful or whatever you want to name it, this is about the credibility of a physician and their responsibility to their patient
>to cure their sickness,
>to ease their pain,
>to treat their illness with the CORRECT method without prejudice, without any modification, and without any delays.
Anyhow, in my personal opinion, whether you are rich or not, it is your responsibility to seek for the best treatment and work out all the possibilities to assist your child to get a better life.
The rest, is in God willing.
To Malaysian Orthopedics Association delegates who are going to Sutera Harbor this week, Selamat Bersidang.
Note : I can't wait to meet up my neurosurgeon coming July for annual MRI.Yippi yeahhh!!
Saturday, May 16, 2009
Surgery vs Non-surgical
Today I've read about something that I've almost let it happen to Dania about a year ago.
This clubfoot patient went through casting from 3 days old to 11 months, 2 weeks on and 2 weeks off.When she was 14 months she had the Achilles lengthen and bones moves around with the pin to hold everything together.Now she is 10 1/2 and she has a screw planted in her bone which stayed for a year. According to the parent their orthopedics had plan B where they plan take out some of the growth plate, to stop the growth.
This clubfoot patient went through casting from 3 days old to 11 months, 2 weeks on and 2 weeks off.When she was 14 months she had the Achilles lengthen and bones moves around with the pin to hold everything together.Now she is 10 1/2 and she has a screw planted in her bone which stayed for a year. According to the parent their orthopedics had plan B where they plan take out some of the growth plate, to stop the growth.
Fuhhssss....,'screw' sounds scary to me...Why is this parents allow such painful treatment to his child? I think I know...When a nurse took off the operation's clips from my head a year ago, I was so scared and as expected, it was a painful experience to me. Then when Dania's early physicians plan to have 3rd surgery on her feet, I feel something is so wrong. Furthermore the physicians said they only can decide which part they want to cut on the day of operation itself. Scary eh?? They also are not sure what they wanted to do.
What if my neurosurgeon told me that he do not know which part to start to remove the tumor and he can only decide on the operation day itself? I think I'm going to faint again..
As one of my circle of clubfoot friend said which I most agreed is 'one of the greatest aspects of the Ponseti method is that it is gentle and not painful. '
Below photos are our experience from Ponseti method and the outcome...no screw no pain,only 2 scar from previous modified Ponseti method..to see the scar, double click at the most right photo..Btw, Dania clubfoot feet is at her right foot...:)
Note : Dania is 25 months old...still follow up at Bumrungrad Bangkok under supervision of Dr Amnuay Jirasirikul, the certified physician of Ponseti Method..
Subscribe to:
Posts (Atom)