Bilateral Infantile Blount's Disease ***UPDATED Post #1***

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1aBABY's picture
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Bilateral Infantile Blount's Disease ***UPDATED Post #1***

UPDATE:
Friday we went back to the doctor and got more x-rays. Both DH and I had prepared ourselves for the worse news. I even had a list of questions related to the braces, surgery and general questions about the disease. When Dr. K entered the room she was all smiles, sat down and said "his legs look great!" Our response was "What do you mean?" She explained that his legs had straightened and that he look fantastic. Three months ago the angles of his legs were at 82 and 85 degrees. Nomal is between 87 - 90 degrees. Today his right leg was at 87 degrees and his left was at 90 degrees.

Tears of Joy! I think I'm still in shock! We could not be more happy right now. I'm so thankful that our little boy no longer needs to wear those awful braces and surgery is not needed. I'm so happy that he will be "normal" amongst his classmates at school. He will be able to ride the bikes in the gym....I could go on and on.

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I can't believe I never new this board existed! I've been a member of prg.or for 5 years and I just came across this board...I'm glad I found it!

My name is Dawn and my son Josh will be 3 in October. At 18 months he was diagnosed with Blount's Disease. It's a growth disorder that effects his tibia bones from growing correctly. Instead of growing straight they are bowed. If no treatment is performed the bones will continue to bow and eventually could disable him for life. At 18 months he was put into KAFO braces which basically fit him from just under his hip to the bottom of his foot. They prevent him from bending his knees. He wore those for 14 months (a very long 14 months I might add). There was some progress after about 12 months, however, not much. At his last appointment in May the doctor decided to take off the braces to see what would happen naturally. Next Friday (Aug. 5) we go in for xrays and determine what the next step will be. The doctor indicated at the last appointment that we would have to make the decision to perform surgery before he turned 3 1/2 (April '12). I'm terrified as to what is to come.

This disease is not common and I haven't been able to find much information online or a very good support system with other parents going through the same thing.

I hope to get to know each of you! Smile

jgriffith's picture
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Welcome! I just found this board myself, but it's kinda slow!

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Welcome,

I admit that the board is kindof slow, on the other hand it is a very tight-knit group that does come back here on a regular basis. We all support each other and have many great suggestions to get through the tight spots.

Glad you found us!

I'm a step-mom to a 12yo who has a prosthetic heart valve, aortic stenosis, has high frequency hearing loss and is mostly deaf in one ear, and suffers most terribly from being over-protected by his biological parents (and mostly his biomom). He will be having a Cardiac Catheter procedure on August 4th.

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Glad you finally found this board! The ladies here are a wonderful source of support and encouragement.

I hope you get some really good news at your appointment on the 5th. Please update and let us know how it went!

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Welcome!! Ditto what Sarah said. These are an amazing group of ladies. And although we don't have the same medical issues with our children they can all understand and sympathize.

I'm Angela. And I actually have two special needs kiddos. Dakota is mildly autistic and Eli was born with congenital heart defects. He's had lots of surgeries and is currently wearing a monitor to see if we can catch some episodes he's having.

Anyway welcome to the group.

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Hi Dawn! Glad you found this board! I agree, a great group of ladies!

1aBABY's picture
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Thanks for the warm welcome ladies.

kerina313's picture
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Welcome to the group. I've heard of the disease -- think there was a family on TLC that talked about it. I understand about not being able to find much on these things.

My eldest is a VATER/VACTREL child. When she was first diagnosed there were quite a few sites out there that talked about it. Now .. not so much. Her issues are heart, kidney and spine. Luckily for us she's doing really well and keeps us hopping.

My next was a T-18 baby. Never thought I'd have 2 in a row. She gave us 2 wonderful days with her.

3 months after we lost Sarah, I found out I was pregnant again.. this time with twins! My boy is completely healthy and definitely keeps us on our toes. My girl Sam has a brain condition called Agenesis of Corpus Callosum. She's basically missing the bundle of nerves that connect/communicate between the two hemispheres. And now she's been diagnosed with Congential Estrophia.

So the other ladies were right in that we may not be a very "active" board, but we usually gather around when there are issues.

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Welcome to the board! I hope you get good information on your appointment!

Tommy was born with an incomplete unilateral cleft lip. It was surgically repaired when he was 4 months old. He ended up with an extra baby tooth and had that removed. Now he has braces on to move the other baby tooth into place. Through the x-rays for the braces we learned that he also has 2 adult teeth in that location (which is actually good news because we thought there might not be one since 2 had erupted in the same spot).

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What great news!!! I hope the trend continues. Do you have a follow up appointment?

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Yay!!

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Welcome to the board. I'm glad you got such great news!

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What a great update!!

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That is fantastic news!!! Congrats!!