Is this SN?

[CoteDAzur]

Apologies for crashing the SN area. I would appreciate your help. Could anyone tell if this looks like a symptom of a SN condition?

I am first time mum to DD, almost 20 months, who is completely disinterested in getting up from where she is sitting. I have taken her to the pediatrician who said she is lazy (?) and a specialist physiotherapist who said her muscles and joints seem normal but that such a 5-minute examination means little and that only I, as her mother, could see problems (???).

But weeks and months go by and she is still not pulling up. She started walking in December and walks fairly well by now, follows me around the house, but if she falls she falls like a tree (not usually on her bum but face down or on her side), and she cannot get up on her own. When she bends down to pick something up, it's mostly from the waist, with minimum bending of knees. In fact, she does not put weight on her knees at all, which is probably why she can't figure out how to get up rising herself on one knee.

Can anyone help? Does this sound like anything you have ever seen or heard of?

I am sorry to be bothering you with this, which will probably seem silly and trivial to most of you, but I am worried sick and feel the professionals are not taking my worries seriously.

[Cappuccino]

can't say, but this treatment seems bizarre tbh

are you in the UK? (sorry wondered cos of your name) If so ask your hv if you can see someone at the local child development centre if you are worried

[Kelly1978]

I would request that the paed gets you a thorough assesment from a physiotherapist. ds's assesment took about 30-45 minutes, like you say 5 minutes is nothing.

[LIZS]

Have they ruled out hip problems (scan perhaps) ? Did she crawl ?

[CoteDAzur]

Yes, we live in France. So, no HV, no child development center, just pediatrician and whoever I can get her to refer us to.

DD never crawled. She hated tummy time, and I didn't insist. (Blame myself hugely for this now!)

There has been no scans yet. All I get is "all is normal" from manual examinations.

Personally, I doubt if there is a hip problem because she bends from the hip easily. It is the knees she doesn't bend much or doesn't put any weight on. I've been trying to get her up and down stairs, and she tries to go down without bending her knees at all, or very slightly, just by sliding her feet to the side. We don't have much luck going up yet, except with very low steps that have rails for her to pull up on one side (and me on the other side).

What can it possibly be?

[Kelly1978]

Have her fine motor skills developed normally? ds has motor problems, and it was even more noticeable in fine motor skills, and maybe that would help in finding out what it is. Have you tried anything that would encourage her to use her knees more, such as trampolining?

I was on the cote d'azur at easter, it was lovely.

[gess]

hyperflexible joints???? Makes it much harder work for children with this, so they can be slower physically. It sounds as if the physio should have been able to check this but there was a boy in ds1's multidisciplinary assessment group (took place over 6 Monday mornings) with this.

[gess]

oh yes that's the word I was searching for- hypermobility. I'm not very with it tonight!

[Kelly1978]

ds has hypermobility too, and the falling over like a tree does sound like him, but not the stiff joints. ds has extremely laxative joints and did have poor muscle tone too.

[CoteDAzur]

Well, the physio we saw two weeks ago said her muscle tone and joints were normal. I don't think there is any hypermobility in her joints. If anything, it looks like there is lack of mobility, especially in her knees. You know how kids squat so easily, practically sitting on their heels? DD doesn't (and won't, I tried to make her) do this at all.

I think her fine motor skills are OK. She's been putting little 1 centime coins into her piggy bank, picking little bits of dust off the balcony floor, etc.

I am beginning to think of just leaving her on her tummy and leaving the room for a while. See what she does. Is that cruel? Or necessary???

Kelly - Where were you in Easter? We were gone that weekend, but it has been quite lovely ever since. 23 C sunny today, everybody was at the beach.

Thank you all for your help. Thank you for not telling me off for the non-SN post.

And please let me know if any of this sounds like a symptom for a SN condition, so I can get some informed help. All this "She's fine, just lazy" is so unhelpful...

[gess]

I personally think if you've noticed a problem then its worth investigating further. I know nothing about mobility though. I was the first to notice ds1's problems becuase I was the one who saw him next to his peers, no one else had that comparison and they missed him iyswim.

[mymatemax]

Did the physio witness your dd trying to do the things she finds difficult or was it purely an examination?
If not I would seek a second opinion with a paed physio observing your daughters movement.
Even if they can't offer you a dx they should be able to offer you some exercises specifically to help with the things she struggles with.

[Kelly1978]

i agree with you that it doesn't sound like hypermobility. I think you really need another referral to get to the bottom of it, and you probably are going to have to kick up a fuss to get anywhere with it. It's hard enough getting help here, where we do have the other avenues to go down. Her fine motor skills sound good, so it must jsut be limited to her knees.

In the meantime I personally might try to get her climbing, swimming or on a little baby trampoline which might give her the exercise to get the knees moving. ds's physio said the best physio in the world is lots of trips to the park or soft paly where children can climb lots.

Good luck with getting some answers, and help for your dd. I know how frustrating it is to be concerned about an issue and having others dismiss you.

We were in Nice for 5 days, we went to Monaco and Cannes too, it was lovely, beatiful area! Wish I was still there.

[Kelly1978]

oh and I really wouldn't leave her on her tummy and leave the room if it distresses her, but that is jsut my opinion. I can understand you wanting to see if she can do it.

[CoteDAzur]

Physio just watched her as she was cowering from attention between my legs. She was observing but all she could possibly observe would be her standing, and she said "She stands well, does not search for things to hold on to". Which didn't rock my world, since I had already told her DD walks well and for long distances.

I called up DD's paediatrician yesterday and said "Well, it's been two months you told me 'She is just being lazy' and she still doesn't pull up?!?" and she said if I am all that worried, she would prescribe a blood test for muscle enzymes. Not sure if this is useful or if she is just trying to get rid of me? Surely if DD had problems with all her muscles she would not be able to walk or bend down? Not to mention hang on to the swing like a monkey for a half hour?

Does anyone know of this muscle enzyme test? If there are not enough enzymes, what would that be a symptom of? [Trying really hard not to Google it all and worry myself even more ]

There are specialists here called "psychomotriciens" who apparently deal with motor problems. I will try and find one that does toddlers and maybe get a referral after this blood test.

[CoteDAzur]

gess - I have the same feeling: that nobody else sees the difference. How can that be, though? Nobody knows of another 20-month old who won't pull up. What is your DS1's problem, if you don't mind me asking? Was it so subtle that nobody else noticed?

kelly - We live in Monaco, and yes it is very pleasant this time of year. Let me know if you plan to revisit, I would love to show you around.

What is a "baby trampoline"? I don't think we have anything like that around here. If you could just tell me the name of a/the manufacturer, I should be able to order it online. Thank you!

[Kelly1978]

cotedazur, i had a trampoline a bit like this sort of thing for ds1. I don't know if maybe carrefour would sell something similar? I have never heard of the muscle enzyme test, so no ideas there, sorry. I do think that the psychomotricien might be a very good idea though.

I so plan on going back to the cote d'azur again when the kids are a bit older, as I would love for them to see the area, but it will have to wait a while. Thank you for the offer anyway. You are very lucky living in monaco! We really enjoyed going there, ended up spending two days there. The Jardin Exotique was amazing.

[Kelly1978]

found this at amazon, they deliver to europe.

[gess]

cote- ds1 is severely autistic - aged 8 completely non-verbal! That's why I always say if you, the mother thinks there is some sort of problem then don't be put off persuing. I used to come away from the "there's nothing wrong with him and if there is its so mild to not need any help" and feel great- for about a day, then I'd start thinking things weren't right again. I wish I had pushed harder because we would probably have done things differently if we'd known.

[CoteDAzur]

kelly - I found a baby trampoline at the ToysRUs in Nice, thanks for the pointers. I will go get it tomorrow, and hopefully it will help DD build her leg muscles.

gess - That is incredible that they told you "nothing wrong with him" when he was autistic. It makes me so mad that so many of our worries about our children are judged as paranoias by doctors.

Thank you all for your insight. I have been trying to get DD to rise one one knee these past couple of days and it is not working at all. She keeps wiggling out of my arms and straightening her legs.

I will get that blood test done for the muscle enzymes and go from there I guess...

[CoteDAzur]

Hi everyone. I just wanted to give a little update. Today, days shy of 22 months, DD finally managed to get up on her own from sitting. She still walks funny, but (as every doctor I have taken her to in the last three months has said) she seems to be capable of this basic task.

One physiotherapist she has been seeing has helped a lot. Basically, she taught me how to position her towards her side so that she "would feel like" getting up on her hands and knees, so that she "might feel like" getting up to standing.

Thanks to all of you who have helped with your messages.

[ShinyHappyPeopleHoldingHands]

Fio, do you think DS has hypermobility? I have realised I am not clear about the definition of this or whether it applies to him.

Sorry for the treat crash Cote. I am glad DD is making good progress.

[ShinyHappyPeopleHoldingHands]

(thread crash!)