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Developmental Pelvic Dysplasia


Forum: Children with Special Needs

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  #1  
March 21st, 2006, 04:17 PM
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Join Date: Mar 2006
Location: Offutt AFB, Nebraska
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Hi. We are a military family stationed at Offutt AFB in Nebraska. Our daughter was born with Developmental Pevlic Dysplasia. We are seeing a pediatric Orthopedist who put her in a Wheaton-Pavlik harness/brace for the next 3 months ~ we do routine ultrasounds to check the positioning of her hips, the brace is slowly moving her hips into place (like braces do on teeth).

For those who don't know of the condition: the ball/sockets in the hips are not formed correctly and must be corrected at birth otherwise it can cause a lifetime of problems and may result in limping, crutches or wheelchair.

I've had the "why me/her" blues, but thankfully have gotten my act together. A sad part of this condition is that Della can't wear any of the 0-3 month clothes (especially onesies) because of the positioning of her hips make it impossible to put clothes on her (also her shoulders are imoblized), so she she is in 3/6 month clothes for the time being. Also, I can't put her in a snugly or sling. Also, it's hard when I change her diaper in public and people gasp when they see the harness and I feel obligated to explain her condition and why she has to wear it.


Anywhoo....just curious if anyone has a child with this condition and has experienced the same issues that we are dealing with. TIA!!!

P.S. Here is a picture of Della in her brace/harness:

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  #2  
March 21st, 2006, 06:07 PM
LuckyGirlx4's Avatar Mega Super Mommy
Join Date: Jun 2004
Posts: 2,993
Quote:
Hi. We are a military family stationed at Offutt AFB in Nebraska. Our daughter was born with Developmental Pevlic Dysplasia. We are seeing a pediatric Orthopedist who put her in a Wheaton-Pavlik harness/brace for the next 3 months ~ we do routine ultrasounds to check the positioning of her hips, the brace is slowly moving her hips into place (like braces do on teeth).

For those who don't know of the condition: the ball/sockets in the hips are not formed correctly and must be corrected at birth otherwise it can cause a lifetime of problems and may result in limping, crutches or wheelchair.

I've had the "why me/her" blues, but thankfully have gotten my act together. A sad part of this condition is that Della can't wear any of the 0-3 month clothes (especially onesies) because of the positioning of her hips make it impossible to put clothes on her (also her shoulders are imoblized), so she she is in 3/6 month clothes for the time being. Also, I can't put her in a snugly or sling. Also, it's hard when I change her diaper in public and people gasp when they see the harness and I feel obligated to explain her condition and why she has to wear it.


Anywhoo....just curious if anyone has a child with this condition and has experienced the same issues that we are dealing with. TIA!!!

P.S. Here is a picture of Della in her brace/harness:

[/b]
Aww she's beautiful ! Welcome to our board! I'm Krista, Mom to 3. My daughter Anika is our special needs baby (well she's almost 4- but still my baby ). She has not deal with hip dysplasia, but I HAVE dealt with the stares in public since she was born. Anika was born 2 months early and had a complicated delivery. As a result she now has mild Cerebral Palsy(mostly low tone, but has some high toned areas), reflux- has a g-tube, lots of breathing issues (Bronchio pulminary dysplasia, laryngolamacial, trachealmalacia, asthma, etc.), and she has some kind of other problem that's yet to be diagnosed where she has horrible pain in hips, knees, and back- it's probably and arthritis-type thing but we are sitll unsure of exactly what "it" is. As an infant, she had an apnea monitor attached to her 24/7- so wires were hanging out of all of her clothes and i had a box showing her heart rate, and she had an NG tube taped to her face and going up her nose- aside from that she was extremely floppy and very very small for her age. I know the gasp you're talking about- and no you're not obligated to explain anything. I finally just smiled and spoke to them ignoring thier stares. I appreciated it when they were bold enough to ask, and not just gawk at her. I've also gone through the "why me, why hers" and sometimes it comes back and goes away again.
I'm glad you've found our board, I'm here if you ever need anything and I hope you'll stick around
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  #3  
March 21st, 2006, 07:44 PM
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Location: Offutt AFB, Nebraska
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Krista ~ thanks for replying. Anika sounds like a tough cookie!!!!! Yeah, that stare/gasp issue is new and is like an open wound sometimes, ya know?!?
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  #4  
March 21st, 2006, 08:37 PM
LuckyGirlx4's Avatar Mega Super Mommy
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Quote:
Krista ~ thanks for replying. Anika sounds like a tough cookie!!!!! Yeah, that stare/gasp issue is new and is like an open wound sometimes, ya know?!?[/b]

Yes, it certainly is! Anika is a tough cookie indeed. ((((hugs)))))
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  #5  
March 22nd, 2006, 01:32 PM
Chunky Monkey's Avatar Platinum Supermommy
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Aww she is such a darling!

Having a child with any disability is hard, I know. I have one with ADHD & one with autism. I have spent my failr share of time wondering why this has happened & I have learned to accept that God doesn't give us more than we can handle. And I am not a religious person but I am spiritual.

I do not have a child with a physical handicap like you do but I do get the stares and stuff in public from narrow minded people who tell me when my autistic son is throwing a temper tantrum I need to "pull down his pants right there and tan his hide." How rude for them not to understand his disability. And I never once tanned any of my other children's hides so why would I do that to him??
You should not have to feel obligated to tell total strangers about the braces if you don't want to. It is totally your decision. I feel like I spend my fair share of time explaining my son's behavior to other people & it is really frustrating. I feel if I don't explain, they will think I am a bad parent or something.

I am glad the braces on her legs are putting the joints in place. I don't know anything about this but will it get better? Or is this something she is going to live with for the rest of her life? Find out if there are any support groups in your area for this certain disability. I tell you what...our local autism society has been a blessing to us! They have given me a lot of advice and stuff!

I wish you the best of luck with this & feel free to talk to any of the ladies on here. Oh BTW, I have a lot respect for military families. My BIL is in the Navy.
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  #6  
March 23rd, 2006, 02:52 PM
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Join Date: Mar 2006
Location: Offutt AFB, Nebraska
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Quote:
I am glad the braces on her legs are putting the joints in place. I don't know anything about this but will it get better? Or is this something she is going to live with for the rest of her life? Find out if there are any support groups in your area for this certain disability. I tell you what...our local autism society has been a blessing to us! They have given me a lot of advice and stuff![/b]
Thanks for the encouragement This condition is usually 100% treatable if caught and corrected at birth (they had Della in her brace by 9 days old). Her Ortho said that once the hips are in place, they should be fine for the rest of her life, with the exception of some mild arthritis that is reported in some cases.....at first it was so scary not knowing much about the conditon.

It's very common, 1 in 1000 births are affected. Also it affects 1 in every 500 girls whereas it's 1 in every 2,000 boys, so girls are a prime target for it.

I can't wait for the day she graduates!!! Also, thanks for supporting our military...it means a lot to all of us!!!!
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  #7  
March 28th, 2006, 12:04 PM
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I also want to welcome you to this board and know what sometimes people just do not understand you gotta do what you gotta do to make your child well or healthy in their life. I know it is hard that you can't enjoy some of the joys of her being an infant now but guess what it will be well worth it when she becomes a young lady...and you are a great mom for doing what you are doing now for her.

Hoping to know you more.
-Dori
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  #8  
March 31st, 2006, 10:20 AM
jessjillmama's Avatar ***Staying Positive***
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Location: Coushatta, La
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Welcome to the group!! Your little girl is so cute!! Congrats on her! Glad everything is going well and they caught it so she can do everything like normal once its all fixed up.
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