Does anyone have a child with Macrodactly or know of anyone who has?

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User - posted on 02/13/2009

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Hi there. I don't have a child with Macrodactly, but I think you should check into a Shriner's Hospital, if one in your area, for answers.



My daughter has Arthrogryposis, and we use Scottish Rite Hospital in Dallas.



Those kind of hospitals have seen every kind of rare disorder known to man.



Good luck!

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Jaime - posted on 02/15/2009

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Polydactyl is a duplicated digit. My daughter had a duplicated thumb on her right hand ( kinda looked like a lobster claw) She had her 1st surgery at 1yr. They removed the inner thumb, put a pin in the remaining thumb to try and straighten. The 2nd surgery was when 6 months later. They had to widen the web space ( space in between the thumb and pointer finger) and try and straighten the thumb again. The thumb still leans towards her pointer finger, she does not have any movement in the 1st joint on her thumb but does have the ability to touch each of her other fingers with her thumb (pinser grasp) She is amazing at the things she accomplishes with her hands. We are expecting another surgery in the next couple of years for cosmetic reconstruction.

Think of a cat with and extra toe and that is polydactyl.

We use the Hospital for Sick children in Toronto Ontario. They have the best doctors from across the world.

Donna - posted on 02/14/2009

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Quoting Karen:



Hi there. I don't have a child with Macrodactly, but I think you should check into a Shriner's Hospital, if one in your area, for answers.






My daughter has Arthrogryposis, and we use Scottish Rite Hospital in Dallas.






Those kind of hospitals have seen every kind of rare disorder known to man.






Good luck!





Thanks Karen



I live in Australia and I have heard that Shriner's is the best. We have to see the specialist on 26th Feb 09 and see what he says about my son's hand and depending on how bad it is. We are considering looking at seeing a doctor overseas. They have a lot more knowledge then they do here, here they only see a hand disorder once every two years and thats not common enough for me.



 



Thanks so much for your advice :)

Donna - posted on 02/14/2009

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Quoting Jaime:

My middle daughter was born with polydactly on her right hand. She has had 2 seperate surgeries. The first when she was 1 to remove on thumb and straighten. The 2nd to try and straighten her thumb and lengthen the web space . She is now 4 years old and I am amazed at the things she can accomplish with her right hand.


How old was your daughter Jaime when she had her first surgery? I'm not sure what polydactly is so I might look it up. Do you know if its similar?

Jaime - posted on 02/13/2009

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My middle daughter was born with polydactly on her right hand. She has had 2 seperate surgeries. The first when she was 1 to remove on thumb and straighten. The 2nd to try and straighten her thumb and lengthen the web space . She is now 4 years old and I am amazed at the things she can accomplish with her right hand.

Kira - posted on 02/13/2009

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I really hope this answers some questions for you.






Kira










































































































































































What is macrodactyly?
 
Macrodactyly is an uncommon birth defect in which toes or fingers are abnormally large due to overgrowth of underlying bone and soft tissue-particularly the nerves, fat and skin of the involved digit or digits. 


As with the majority of birth defects, scientists do not know why macrodactyly occurs, but information that is known about the condition indicates that it does not result from the mother's lifestyle or anything the mother did during her pregnancy.






Macrodactyly is more commonly considered static, with the enlarged digit (finger or toe) continuing to grow at the same rate as the normal digits of the hand, but it can be progressive, with the affected digits growing faster than the rest of the hand. In the static type, the involved digits are generally about 1 1D2 times the normal length and width of the normal digits. If the condition is progressive, the involved digit or digits can become enormous.






Hands are more commonly involved than feet. Most of the time, only one hand or one foot is affected, but usually more than one digit is involved. It may coexist with syndactyly, a condition in which two fingers or toes are fused together.






Macrodactyly can be associated with other conditions or can occur on its own. Although it is a benign condition, it is deforming and can be cosmetically displeasing to the child and family. Surgery, usually involving multiple procedures, can help the problem.




 
What causes macrodactyly?
 
Several theories exist about the cause of macrodactyly. Some believe that the condition is due to an abnormal nerve supply to the affected digit while others blame an abnormality in the blood vessels and blood supply in the area. Although neither theory have been proven, some evidence does suggest that nerves have some control over the growth of tissue. 


Although it occurs at birth, macrodactyly is not an inherited condition. It can occur in association with neurofibromatosis and vascular malformations. Children with multiple echondromatosis, Maffuci syndrome and tuberous sclerosis can have enlarged digits.




 
How is macrodactyly diagnosed?
 
Most cases of macrodactyly are apparent soon after birth, although occasionally, the progressive type may not be detected until later in infancy, when relentless enlargement occurs. Your baby's doctor will want to perform the following diagnostic tests of the affected area to note the underlying layers of tissue that are enlarged: 

X-rays- a diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film. 


 





Magnetic Resonance Imaging (MRI) - a diagnostic procedure that uses a combination of large magnets, radiofrequencies and a computer to produce detailed images of organs and structures within the body. 

 
Treatment
 
Specific treatment for macrodactyly will be determined by your child's physician based on: 

your child's age, overall health, and medical history 
whether the condition is static or progressive 
the severity of the condition 
any associated conditions 
your child's tolerance for specific medications, procedures, or therapies 
your opinion or preference 

 
The goals of treatment also depend on whether the macrodactyly occurs in the hand or foot. For instance, if in the hand, the goal would be optimal function, and hand function can tolerate a digit with a certain degree of increased width and length. In the foot, however, even the slightest amount of enlarged width may make shoe wearing difficult. 


In mild cases, treatment for macrodactyly may involve observation or, in the case of an enlarged foot, shoe modification alone. Most of the time, however, surgery is required. It is important to understand that surgery to correct macrodactyly is complex because it involves multiple layers of tissue. It may take several different surgical procedures to achieve the desired result. Size altering surgery will involve extensive observation and planning, because doctors will want to be able to plot the rate of growth of your child's normal digits versus the enlarged digits. Your child's doctor may recommend some combination of the following surgical procedures:






 





Soft tissue debulking: To help correct width, this procedure involves the surgical removal of the thickened layers of skin and fat and the replacement of skin with skin grafts harvested from healthy skin in the proximal region. This procedure is usually performed in several stages around three months apart. It is more often used to treat the milder forms of macrodactyly or as a part of the treatment of the more progressive forms. 


 





Shortening procedures: To help correct length, shortening procedures usually involve either surgical excision (removal) of one of the phalanges of the finger or toe, or removal of a metacarpal (hand bone) or metatarsal (foot bone). 


 





Ray resection: Surgical removal of the entire digit or digits is sometimes necessary, particularly when the condition is progressive. It is also an option if there is excessive widening of the forefoot, where digital shortening and debulking procedure may not be effective. 

 
What is the long-term outlook for a child with macrodactyly?
 
The long-term outlook for a child treated for macrodactyly varies from child to child, depending on how severe the problem is. Generally speaking, you and your child can expect an overall improvement in appearance and function. However, it is rare to attain perfect size and function of the involved digit(s).
 



   





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