Hypermobility?

[BigWeeHag]

Just back from Podiatrist with DS1 - she has said that he is very hypermobile, and flat footed, is turning in one foot (which is why I took him) and a whole long list.

She said he also has hypermobile ankles and knees, and she suspects all over.

And that he is probably in pain a lot of the time, and that this is probably why he is always knackered and needs a buggy.

Getting inserts and have bought boots as advised, and will also be seeking a referral to the NHS podiatrist and physio (although the podiatrist was really surprised that the physio missed this at the MDT because it is very obvious apparently.)

Anyone any advice? Good exercises etc?

Dd otoh is dark and Spanish looking and still has EDS; ds is blond but not doughy, tans easily, but very thin and angular (what is described as Marfan habitus in the textbooks).

The genetic testing they did on them was mainly a team of genethicists walking around them and prodding and poking rather than blood tests.

pants I just lost connection and a long post! Cory, could you tell me more about hypermobility syndrome causing bladder problems please? My 12yo DD was dxd with hypermobility syndrome when she was 9 months old, as she was still as floppy as a newborn baby and couldn't support her head. She is still having issues with wetting, but our PCT has no enuresis clinic. No-one has told me about a possible connection between the two, so you have got me intrigued. OT at my hospital referred us to a geneticist 4 years ago (only one person in 3 generations on my mums' side hasn't been dxd hypermobility syndrome, that's my DS1), everyone else HAS. But the geneticist came to my local hospital, think she was visiting from GOSH. Despite the fact that both DD and DS2 were there, she refused to do any tests. Even though DS2 was almost 3yo at that point and not even crawling. She said that 'their faces don't look typical of genetic problems, so we won't bother testing them'.

'their faces don't look typical of genetic problems, so we won't bother testing them'.

(and no, that's not because of hypermobile jaw muscles either)

about the incontinence thing:

you don't often read of this in connection with hypermobility syndrome, but both urologist (who I believe is very good) and her paed agreed that this was the most likely cause of dd's problems: after all, it makes sense that if you have a weakness in the connective tissue, it could affect your bladder muscles just as easily as some other part of your body

ds has no similar problem and I've never had them either (though my hypermpobility is confined to my hands and fingers anyway).

but apparently can happen

Dam looks like I have some reAding to do ,I don't think ds features would lend them to a paticulary dx but hope see someone who is more aware of hidden problems am rethinking that maybe addenbrooks better option for genectist now since ds neuro and ds orthapeadic are based there

Yeah...I had to pick my jaw up off the floor too! TBH I'm thinking of trying to get in touch with GOSH directly as I am already concerned about the baby I'm carrying...it wasn't moving round at all in my womb during my scan (just like DD and DS2, whereas DS1 was doing backflips on my 12 weeks scan). The sonographer had to spend almost 40 mins trying to get it to move so that it coukd be measured. The only other thing the geneticist said to me was that any future dc, given the incidence of hypermobility syndrome in my family, that each baby would have a 50% chance of having hypermobility syndrome as well...

Dont think there is a genetic test for Ehler Danlos type 3 (formally just called hypermobility) but again not my area of knowledge so you guys probably know better tbh...certainly not all EDS children have dysmorphic (odd features) features at all. Marfans syndrome children generally have longish faces and large arm span.They can have cardiac issues too
HTH

If it's type 3 I'm nit to worried pretty sure me and all dc would fit the bill though ds2 is already being investigatedfor marfan but think ds3 is something more question is what

Genethicists told dd (Ehlers Danlos III) that she might want to come back in 5 years time as they may have deloped tests then. Atm all they can do is the old Beighton/Brighton score+ look at the skin and obviously cardiac tests to rule out the cardiac types.

"I am already concerned about the baby I'm carrying...it wasn't moving round at all in my womb during my scan"

That is interesting, never heard that before, but I was intensively monitored during pregnancy and always had enormous problems getting dd to move- I'd be strapped to that wretched monitor for hours on end.

Ah yes me dd ds1 and ds 2 scored between 7-8 ds 3scored perfect 9 out 9 for me I just would like to know what on dealing with so least get some idea of prognosis ds also fits the dislocation to as so do I but nit like he does he had 32 dislocations and he's not 5 to next week

am going to ask but got to wait to September be seen

Cory over time have your dc feet started turning in ds always rolled to the side badly hence afos but without them his feet turn in almost 90 degrees like club feet often that way in the morning