It's a long shot but does anyone have a child with Sticklers Syndrome?

[AliceK]

Would welcome some advice

xxx

[QualityCare]

No sorry, but have had a child with severe treachers collins syndrome which appears to have some similarities to sticklers syndrome, he had severe facial deformities, eating problems and had severe hearing loss so wore hearing aids (when he hadn't removed them and hidden them) and l had a radio aid, apart from the stares when we were out, encouraging him to eat which because of his deformities took ages and encouraging his language he wasn't any different from other children. I had a v good relationship with his parents so when l could l attended hosp appts with them.

[AliceK]

No sorry, but have had a child with severe treachers collins syndrome which appears to have some similarities to sticklers syndrome, he had severe facial deformities, eating problems and had severe hearing loss so wore hearing aids (when he hadn't removed them and hidden them) and l had a radio aid, apart from the stares when we were out, encouraging him to eat which because of his deformities took ages and encouraging his language he wasn't any different from other children. I had a v good relationship with his parents so when l could l attended hosp appts with them.

Thanks.
I've not heard of that syndrome but it does sound very similar to sticklers. My DD (aged 4) has sticklers, she has all of the above problems, wears hearing aids, glasses (is Very short sighted) and eating is a nightmare but that's also linked to her having been born with a cleft palate but it also causes joint problems and I'm concerned that she may just now be starting to experience joint pain. She was up in the night in tears with pain in her leg and the same this morning although the pain seemed to be subsiding by the time I got to school. I suppose I just hate seeing her in pain and worrying that this might be a common thing now. Have left a msg for her peadiatrician to call me when she gets back from hols. Just wondering what the next step is and if we can get her a body scan to see what's going on. I hate the thought that she is in pain :(

xxxx

[sarah707]

Isn't arthritis common with the syndrome? When she moves around from sitting does she seem stiff?

hugs xx

[AliceK]

Isn't arthritis common with the syndrome? When she moves around from sitting does she seem stiff?

hugs xx

Yes it is, osteoarthritis I think. This is what is concerning me today. Is this the onset of pain relating to her condition? She has been in tears this evening with the pain :(

xxx

[sarah707]

Can you be referred to a specialist paeds pain management nurse? There should be someone with an emergency appointment :(

[AliceK]

Can you be referred to a specialist paeds pain management nurse? There should be someone with an emergency appointment :(

She is under a peadiatrician and I tried to call her today but she is on hols. I am going to see how she is in the morning and then will take her to the Dr's if she is still in pain. I've given her painkillers and a bath and she is asleep at the moment. Poor little love.
Thanks for your help Sarah

xx