Hypermobile DC- what were they like as toddlers

[AtWitsEnd21]

Hello there,

My DS was referred to a paediatrician as a result of being very late to pull to stand. He was/is quite the conundrum; he never crawled, walked at 12m, bum shuffled thereafter, can run, kick a ball, throw. He had difficult in transitions- getting up from sitting and moving up stairs. This has improved significantly, although the stairs is still tricky. He was very late pulling to stand- 21m. After lots of work at home he is now totally proficient at pulling up using whatever he can to help himself up. He still has difficulty getting up from the floor on his own.

He is with two physios who have agreed he probably inherited my hypermobility and not to worry he will catch up and his progress has been great.

The paediatrician we saw was practically hysterical when we saw her. She raised her voice at me saying repeatedly can you not see how far behind he is. She referred him to a neuro disability team and went so far as to mention muscular dystrophy. Both physios were appalled at her manner and the referral saying he had none of the clinical indications for MD or a neuro muscular disease. This was a deeply traumatic experience. The call from the team came yesterday and I’m sick with nerves.

Really I’m looking for peoples experiences of a toddler with hypermobility, how did they present?

Hi OP. I'm sorry the paediatrician was unpleasant, that must have been a horrible experience. I think it's a good thing, though, that they're taking it seriously. Hopefully it's just a case of ruling things out, but either way it's better to know for sure rather than just guessing.

As for your question, my DD is hypermobile but I don't remember her having particular issues as a toddler. She crawled early and met all the usual milestones. It was more things like using a knife or learning to swim that she struggled with because of her hypermobility. All kids are different, though. Do you know anything about how you were as a toddler, are you able to ask your parents?

My DC2 is hypermobile. Diagnosed in early 20s with ADHD and autism. I actually only realized in the ADHD assessment just how hypermobile they are. I always knew DC2 could do the splits but I didn't know they could bend their thumbs back to touch their forearm and do weird things with their arms.

As a small kid, DC2 was incredibly athletic. Started walking at 12 months and had a beautiful fluid running style well before starting school. In school, they usually won sprinting races.

That paediatrician sounds awful. I wonder if it might be worth asking your GP to refer you elsewhere? The NHS does allow you to get a second opinion.

Aches and pains for mine.
Trampolines caused a lot of pain/injury.
Lots of growing pains. Lots!
Oh and constipation.

No problems with milestones.

My DD has hypermobility - not noted until secondary school age. She has a lot of joint pain and has partially dislocated her shoulder a few times. However the physio exercises were v. helpful.

Agree that the paed doctor hysteria sounds extremely unprofessional. Was the doctor a consultant?? Extraordinary if so 🙄

We once took our 3 year old son to A and E as he wouldn't weight bear on his leg/unable to walk. The paed doctor ( a senior registrar) told us it was most likely Perthe's disease - sent me into a rabbit hole of worry... but on seeing the consultant 2 days later, it turned out he needed antibiotics for an infection in his hip cavity, and his long term mobility was not affected.

Paediatrician sounds a bit bonkers?

DD was pretty average as a toddler. A keen crawler but less enthusiastic about standing and walking.

Her ankles were noticeably a bit bendy and wonky.

We only really started having physio type issues at primary school age.

Discouraged her from gymnastics and ballet. Encouraged swimming and cycling.

I’m so sorry you went through that worry! My other DS was incorrectly diagnosed with septic arthritis and was almost put through surgery for no reason so I understand your experience!!

My own hypermobility was not diagnosed until my 20s after chronic hip pain. DS is so flexible, he can completely bend himself in two and I suspect he has the same issue.

No she was not a consultantant she was a community paediatrician. I tried to explain that DS has been improving exponentially over months and his physios (we see one privately and publicly) felt that he was a typical bum shuffler on his own developmental path, with an a-typical presenting gross motor delay (in that he met all other milestones on time and had a deficit in one particular area) but with no red flags. When I said this her response was well I’m a doctor and they are just physiotherapists! It was utterly horrifying when she brought up muscular dystrophy. I’m absolutely sick with worry over this appointment. DS is so headstrong and easily frustrated which hasn’t helped. I just want this awful appointment to be over.

Dts are hypermobile.
bit niche but when they started horse riding they really struggled as their ankles were all over the place, we had to upgrade them to knee length boots fairly quickly.

they wore DM boots in primary.

they finally got a trampoline in lockdown and both hated it, het their backs / knees / ankles.

didnt ride a bike until 8, again painful and wobbled all over the place.

they are older teens now and don’t mention it so much. They still ride, it’s been good for them and building strength.

Thanks so much. Yes totally bonkers, the whole appointment was distressing. She cut me off repeatedly when i tried to explain DS progress. My DH wants to make a complaint once we have the hospital appointment over with.

Thats interesting that you say that, the physio has recommended gymnastics for strength building. However she did say that hypermobility is very different in boys as it largely resolves with testosterone with the onset of puberty.

Thanks so much for that. Did they meet their early motor milestones on time? DS has met them all- sitting, rolling, standing, walking- on time or early but was very late pulling up. We were in a habit of pulling him up and I think he largely became reliant on us and in this regard we did not help the situation.

I think female and male gymnastics is very different, yes!

She actually said the conversations she has with parents of girls and boys are vastly different because of the role of hormones! But what does this experienced, senior physiotherapist know, according to the doctor nothing!