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I have a patient 9mo old. Needs surgery for club feet. The patient also has a serious medical condition called epidermoylisis bullosa. This causes extreme blistering with any type of touch to the patient. The blistering also occurs in the airway and mouth. The skin will also have a very difficult time healing.
Looking for information as to if anyone has ever proformed surgery or treated a patient with this condition. Considering spinal anesthesia with breathing tube inserted through the nose. Intibation would have a high possibility of causing extreme bleeding and result in a trach

I can imagine that the club feet would be the least of her problems, poor little thing.

What country are you in? That may guide people how to answer more appropriately.

Also, as I'm sure you are aware there are varying levels of E.B. How bad is she, if she has EB to the extent of airways blistering, it will be unlikely that she will be able to walk even with padding therefore a foot position is not a huge issue, life maintenance/comfort will be more of the priority.

Also varied extremes of club foot positions and I presume stretching has not been effective thus far and that if her EB is that extreme ponsetti isn't worth considering?

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Cheers,
Cylie.... in a permanent state of confusion

located in the United States. I am just planning to consult with the actual surgeon. I will not be doing the surgery I do not feel that I have enough experience. I have personal experience with a child with EB but they did not survive. The EB does not seem to affect this patients feet as much. The type she has is serious but has mostly effected her torso and also her face. I too am not sure if the surgery is worth it but am just trying to provide the patient with all the information possible.

Hi Holls:
I can't help re: EB, I would assume that the anesthesia department would be calling the shots as far as type of anesthesia - which brings up another point........how did the child make it 9 months with a club foot in the USA without treatment?
Depending on the degree of deformity, if a tendoachilles and medial release is all that will be done perhaps no intubation is required.

Steve

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DrSArbes
Fellow American College of Foot & Ankle Surgeons
Board Certified Foot & Ankle Surgery, ABPS
Green Bay, Wisconsin, USA

The surgery was to risky for the patient until older and molding of the foot would have caused to much skin damage.
Anethesia is open to what ever we can come up with.

l have few clients with EB that we do special shoes for, positive outcomes are a result of a lot of work to produce the right fit, but we too see some improvements with age in most but not all cases.

What you guys are planning is massive, you are going to have a hard time helping this client, l wish you both all the best.

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David Sutton
C.Ped.CM
My location
www.bilbyshoes.com

Hi every one

I thought the that use of serial casting in clubfoot cases even with EB was the new gold standard. First thought of by an american orthopaedic surgeon in the 60's and very much forgotten. Then an English orthopod started doing the same thing for a charity in Africa and found very successful in the outcomes and with minimal EB complications on the foot could be a great option.

David

Think the guy was Ponseti
Ponseti IV. Congenital clubfoot: fundamentals of treatment. New York: Oxford University Press, 1996

cheers David

See this thread: Ponsetti Method for clubfoot

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thats a great link cheers Admin
And I got the spelling of the name wrong Opps