I’ve been telling our medical teams for months that Evelyn’s knees are clicky.
“It’s just her low muscle tone. As she grows, it will improve” they all said. “Nothing to worry about.”
Until I was sitting at a physio appointment with Evelyn, talking about her knees when Evelyn began to click her knee in and out of joint.
“Hang on, is that the clickiness you’re talking about?” asked our lovely physiotherapist, while turning a little green. “That’s not normal. That’s not right. I’ve never seen anything like that before, ever. You need to get a referral to an Orthopaedic Surgeon for that.”
Oh. Right. Because dislocating knees in an 11 month old isn’t a good thing.
She’s learned to pull to standing, but her ankles are rolling in. We’re giving her another 6 weeks to encourage her muscle strength before she’ll have to start wearing support boots full time to keep her feet where they should be. Her hips seem fine, but because of the laxity of her knees, her feet end up turned backwards.
It’s a fine line, between wait and see, and actively intervene. We need to give her muscles a chance to strengthen, but we also need to be prepared for what happens if they don’t.
Evelyn choked yesterday, sitting at my feet. She’d been chewing on a rice cracker and I immediately assumed that something had gone down the wrong way. I held her while she spluttered, coughed and then stopped breathing entirely, her little eyes full of panic. I smacked her on the back, thanking everything for first aid training, and held her over my knees while she began to cough and breath again, finally vomiting in my lap.
Only, the thing is, there wasn’t anything large enough in her vomit to have caused a choking episode like that. She’s choked before on her own saliva and I can only pray that it isn’t getting worse. She’s stopped swallowing most foods, and I’m awaiting an appointment with a speech pathologist to discuss the choking/swallowing issues. We also see our Paediatrician soon, where we’ll discuss everything, before another EEG occurs later in the month.
It feels like we’re just running to play catch up right now. Her knees are dislocating, she tried to choke herself and she’s still having seizures overnight.
On the bright side, she can clap hands, wave bye bye and she woke me up this morning by very carefully biting me on the nose. Twice.
And she’s adorable.
OHHH she is so sweet and so adorable and it’s not right that they can’t figure this out right away. That just wait thing is just so wrong. The what ifs would drive me nuts. It seems like malpractice that they can send her home without a wheelchair or something, this shouldn’t happen. 🙁
I choke on my saliva too, so does my daughter. CMT, in our case. Never actually stopped breathing, it usually is just swallowed the wrong way. Got some good advice from the people at the hospital on how to cope if it gets worse. Hope you get some too. Your little guy had swallowing issues too. Man oh man. Sure gotta enjoy the delicious adorableness while it is in bed biting you on the nose!
I can’t believe she is almost a year old already!! And she is incredibly adorable!!
She sure is adorable. Not so sure about the nose biting, but at least her aim is good.
Hi Veronica, have been following your posts on little Evelyn for a while now- you’ve certainly had some challenges. As a fellow EDSer your post makes me think Evelyn takes after her Mum… May not explain her seizures but definitely explains the low muscle tone and dislocating knees. Has she been through the genetics clinic? Not sure who you saw but Prof Ravi Savarirayan is great. Good luck, Pip 🙂
Want to comment. Cannot think of anything to say. Will just send my love.
Oh you make some good looking little people!!! She is adorable. I continue to hope and pray that you get an answer, a path, a bit of information. The limbo time is the pits. I’ve been there and for us it was only 5 months….well….she’s nearly 5 and there is no real diagnosis…just the Cerebral Palsy box. But we get support and some information. Where the heck are all the magic wands huh?? xoxo
Hi Veronica,
Oh my she is just so adorable. On the choking front, I know she is a baby and I am all grown up, however I have always choked, have EDS and was a very prem baby. Recently I have been having loads of tests with regard to swallowing/choking. Have been told I should never never eat crackers/toast etc. That preferably it would be safer if I ate mushy food. Because I choked often as a baby/child I had a little bit of a phobia about it all, still do really. Anyway, following a swallowing test (sorry the medical name of the images they took of my swallow has flown from my mind) they found one of the things I suffer from is really really bad reflux (although I don’t have a hiatus hernia) which contributes to swallowing/choking episodes. I have weak swallow, and for some reason swallow twice each time. I was a reluctant eater, although as you know already undiagnosed with EDS at that time and didn’t have a lovely mother like you who noticed. Everything was put down to me being so premature at that time. Looking out for chest infections, which sometimes intially presented with wheezing has been something my father had to look for (he was more vigilant than my mother) after choking episodes. As the food often really had gone down the wrong way. I have been told now, that even biting a piece of bananna shouldn’t be done but cut up and combined with yoghurt. Its a bit like the knee issue I think, if one doesn’t give the chance for the muscles to get stronger by use is it the same with swallowing, I ask myself. But at the same time one doesn’t want ones baby/child in pain and as you know if one grows up in pain it often is not presented in a normal way as it is normal for the sufferor. I remember my daughter also with EDS saying to the consultant, aged 13 I never mentioned it because I thought it was normal to feel pain. I wonder whether baby hydrotherapy is an option for non-weight bearing exercise to help improve muscle tone. Its all so much more complicated in this case. I just know that whatever obstacles come her way, your darling girl has the best mother ever.
Evelyn certainly is adorable.
I remember you had the swallowing problems with Isaac too, so following the same procedures you used for him would probably help a lot. Awful about the knees though it explains why she didn’t crawl normally but pulled herself by elbowing along.
I think I have a similar problem here, but mine is 13 years old. We are heading to a surgeon’s consultation on August 1.
All related to hips, knees and ankles in our case too and reading your situation above I wonder if my Mr 13 was once similar.
In our case, I was told usually “they grow out of it by 12, but if they don’t….” so we are looking at “limb realignment” surgery.
Let us know how you go. Hopefully without to many head explosions…. 🙂
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