Hip dysplasia

[Trot]

My 4 year old daughter has to have an operation to correct hip dysplasia. She'll be in a spica cast (which I now know is waist to toe) for six weeks so she'll be on her back the whole time . Has anyone else been through this??? Mostly, I'd like to speak to someone who knows how to keep her entertained and motivated for this time. Any thoughts?? Anyone??

Bumping for you.

A useful source of info is the Steps website www.steps-charity.org.uk which gives lots of practical ideas and support. I've no experience of a spica as DD wore a hip brace instead but there are similarities. I'll confess I had a major panic beforehand but we were amazed at how well she coped and keeping her entertained wasn't a real problem.
The practicalities of car seats & so on can be tricky but the website above is helpful. Good luck!

Trot how did it go? My 4 year old son has to have exactly the same - an open op then a hip spica cast for 6 weeks - booked to go into hospital in 3 weeks - I hope everything went well for your daughter and yourself - I cant seem to find anyone else with a child of this age or similar as all seem to be a lot younger. Have been in touch a lot with Steps but would love to hear from you x

Dd1 was 13m when she went into hospital. She was in for 2 weeks in traction and then had the op, her spica cast was on for 6 weeks and she then had a brace for 8 months
It was very hard but STEPS helped us loads. They lent us a fab chair that she could sit on with a tray. We also used a special double buggy with no middle bar for going out.
You will find the most bizzare ways of getting her around I promise xx

Dear All

I am mum to Siomha born 26/1/2007 - At 14 months (yes MONTHS) she was diagnosed with a dislocated hip (Developmental Dysplasia of the hip) and her hip socket had not formed at the dislocation had been from birth. She was operated on in Great Ormond Street for 7 hours last September. Her surgeon created a new socket from her pelvis.

Please sign a non political petition which is encouraging the Department of Health to meet with late diagnosed parents so ensure what happened to Siomha is rare.

petitions.number10.gov.uk/NewbornHips

We have been up to the Houses of Parliaments with a Early Day Motion (which 107 MPs have signed)

edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=37901&SESSION=899

and have pushing and pushing for media coverage. This condition is not necessarily hereditary and can come about through breech positioning.

I am absolutely delighted that your daughters hip was detected and as importantly TREATED early - as this is key.

Please, please sign. It takes about a minute

Many thanks Oonagh

siomha-has-ddh.blogspot.com/

news.bbc.co.uk/1/hi/health/7893294.stm

news.bbc.co.uk/1/hi/england/some rset/8047730.stm

news.bbc.co.uk/1/hi/health/7926696.stm

Just wanted to say thanks for the info about that petition pinkoona

I was diagnosed with CDH at 18 months and had 2.5 years of treatment including vaious casts. 3 ops and traction. That was in the '70s and i still have a pin in my hip now but have lived a completely normal life since then!

I have been VERY lucky with my own daughter, born last summer. In my particular area babies born to mothers with a history of DDH are routinely scanned at 6 weeks and thank goodness because her DDH was not picked up at birth which must be the case for many babies. The scan showed a problem and she was treated with a Pavlick harness for 3 months. Fingers crossed this has rectified the problem. I know that DDH can be treated so much more easily with early diagnosis.

I will sign the petition and send my support to all of you who are dealing with the treatment involved with late diagnosis. Hope you're little'uns get mended soon!

Hello, my daughter of 18 months was diagnosed with DDH in June and will be operated on 18th August. I am absolutely dreading it as she is a very active toddler, running climbing etc. I am also worried about the hygiene front so any tips on how to make her life more comfortable would be welcome. Thanks

Hi
My daughter is 16 months and has the same thing as Siomha, her hip has been dislocated since birth and the socket is not formed. She has to have an operation in 3 weeks to reform the socket and put the hip back in. I am dreading it. Can anyone tell me how they cope with the pain - I mean no-one has mentioned that but there must be some pain after such a big op??

I am going to check out the Steps website - thanks for the tips.
Nikki

Ds (4 1/2) has his hip op in 3 weeks too! Will be armpits to toes. Semi-reclined position. STEPS are a fab source for information. OT are in process of sorting out a sling for a hoist so we can move him around at home. We also have a large beanbag for him to lie on. Hopefully his school (special school) will be able to lend us a chair (bed on wheels basically) for the time he's in his cast. Don't expect him to fit in our car while he's in his cast.
Having seen one of his classmates 5 1/2 weeks post-op I expect him to be quite ill while he's in the cast and for a while once it's off. His classmate spent a lot of time on her tummy at school. Have to say I don't know until he's in the cast whether he can weight-bear and if so in which positions. Our physio is worried about pressure sores and says we will need to change his position frequently (he marks very easily). Surgeon has said she'll pad the cast out a bit to try and avoid too many problems.
Ds will hate it. If we manage to get the chair from school intend to take him for a long walk each day. Otherwise think TV will be our friend. SALT thinks we can do a lot of work on his communication (he doesn't talk). Have also bought various interesting games from ELC and bubbles and balloons and a couple of new balls to try and work on hand skills. Might do some face-painting / hair dye as well.
Has taken us 6 months from point of learning that his hip was badly dislocated.
Happy to compare notes down the road. Feel like I'll have a lot to learn.

how's it going? my LO is having the op in a week and half then 12 weeks in a spica (she's 2 1/2). Keen to hear how you're coping now

Hi all. i wanted to tell our story about HDD. my little girl was breech from 21 weeks. we had to option to get her turned but they said it was very stressful for the baby and i could of gone into labor, so i went for a ELCS which i had at 39+2 days, all went well we had a healthy little girl Isla weighing in at 6 pound 7.5 oz! we got told that her hips will b scanned at 4 weeks which they were. we were told that her right hip was under measurement but should correct itself and to have her rescanned at 6 weeks. we had her rescanned and it was still under. At about 20 weeks we seen the consultant and they said her hip was at 39 degrees and should be at 60. she was put in a pavlik harness we wasn't really told anything apart from how to put it on and she could only take it off for an hour a day! she had that on for a month and back to the consultant and it went from 39 degrees to 53! she wore the harness for another month with just an hour off and wen we went back it was up to 63 degrees so we could wean her out of it. for the first 2 weeks she could have 6 hours off and for the last 2 weeks she could have it off for 12 hours a day. she has now been out of the harness for 2 months and she is now crawling at 8 months old! i cant think of what you are going though having it picked up late! we are really lucky to have it picked up at birth! i hope all is going well with you all. we are back in 3 months to have her hip x-rayed hopefully to say all clear and thats it!please feel free to ask me questions or if you would like me to aske question i will be more than happy to! i know what some of u are going through plase stick with it it does come good in the end i know it doesnt feel like it but it does. thanks for reading tara xx