10 month old not sitting up independently

[Cockermummy88]

Really looking for support here☺️.
My 10 month old boy isn’t sitting unaided. He went for a dermatology appointment and a paediatric consultant was brought in due to him not sitting up (the derm consultant was concerned about this). His head measured out of proportion with his body and now he has been referred to physio and for and MRI scan. We had to have bloods taken that day. It was an awful shock. Until then I could convince myself he was a late learner. Now I am beside myself with worry. He loves playing on his belly, however I have been worried for months about him not sitting/waving/pointing. I’ve just had that “feeling” for a while. I raised concerns a few times with HV and GP but was told to wait and see. If I hadn’t have gone to dermatology that day, I wonder how long I would have been fobbed off for. It just goes to show, you should follow your instinct and not take one “professionals” opinion. Fingers crossed for my little boy.

Hi OP. I stumbled across this thread as I was looking for people whose babies weren’t sitting up.
And I was wondering how you and your boy are?

@k2331
Sorry for asking, but what was your childs diagnosis?
@Cockermummy88 Do you have any update?

Hi there! We still have no diagnosis, sorry to say. We are awaiting results from genetic tests but these are taking a life time! I have a feeling they are lost and no one will admit itStill battling for our little boy and trying to access the care that he needs. However, with physio he is now sitting up. He started doing so in July (at 16 months old). He has hyper mobility in his ankles and he has orthotics to help him stand. The next step is a standing frame but we are hoping to avoid this if his shoes help.

How are you doing?

[quote ttrrii]@k2331
Sorry for asking, but what was your childs diagnosis?
@Cockermummy88 Do you have any update?[/quote]
Hi @ttrrii
It was a genetic syndrome my little boy was diagnosed with after a genetic screening (blood test) x

@Cockermummy88
I’m on a similar position. 10 months old not sitting and reffered to genetic testing cause his social development is behind also. Not pointing, following my poing etc. Hows your little ones social development going?
@k2331 Would you mind telling me ehat the syndrome is?

@ttrrii it’s called Potocki Lupski Syndrome, it’s a duplication of part of chromosome 17. It is quite rare but if you are really concerned then genetic testing is worth doing. My little one is delayed in all aspects, not just physical x

@k2331
Thank you for answering! How is he doing now? When did he start sitting?
My little boy is not sitting or crawling, he goes to crawling position and commando crawls. He is socially behind also. No pointing etc, but responds to name and smiles alot. Eye contact with strangers is a bit odd. He smiles at them and then quicky turns his head away and then smiles at them again - kind of shy giggling or smth? But after 20-30 minutes he can maintain eye contact with new peole he has just met. But i have to say, something really seems “off” or different with his behavior and development. He is my second child and i see so many “red flags”.

My son definitely wasn't pointing at 10 months. He didn't start gesturing until 14 months, around the same time he sat unaided. Around then he started clapping and becoming "interested". He is now 17 months and has been trying to say a couple of words in the past few weeks, but really isn't keen on trying to talk. I think he prefers sign language which helps him communicate. He has good comprehension of what I am saying though. I feel he is late doing everything, both physical and social. The first step for us was physio, and continues to be the most helpful thing for us whilst we wait for test results. The physio would be the same if he did receive a diagnosis, so it feels like the perfect thins we can do for him, for now. Have you been referred to physio, or are they encouraging you to wait until 12 months? X

Sorry, timelines all wrong. I saw a bit of a leap in development at 16/17 months, not 14 months. I also wanted to mention play therapy sessions. These are available in our area and have really helped his social and play skills. These are part of his care within the NHS, and have been great for us.

@Cockermummy88
I actually live in Estonia and we are going to physio since he was 3 months old, right now 2 times a week. He started rolling 4 months, commando crawling 7 months and going to crawling position 7 months. Now at 10 months he is still doing all these things but nothing new 🤷‍♀️. I will see physio again tomorrow but todays visit at neurologist just was so frightening - hearing that i have to do some genetic tests. I just thought he was lazy. But yes, I have had that weird gut feeling for a long time that something is not right.

How was your sons eye contact with people he did not know?

He is doing well! He just turned 2 and is such a happy boy. He recently started being able to pull up and stand on the sofa and cruise sideways but no attempt to stand unaided and we are a long way from taking steps. He’s a fast crawler though. Socially he is behind and the same with his communication. He definitely understands more and I’m sure knows what certain words that I say mean but makes no attempt to say any words himself. He is loud though and babbles a lot! He laughs a lot and likes people but wary of other kids especially if they get too close. Have you been referred to physio? If not definitely push for that. At the end of the day any diagnosis doesn’t make a huge difference, it’s the early intervention that helps xx

they are so resilient and will find their own way regardless of any challenge. You must be very proud. I know I am when something big happens! And yes, early intervention is key. The main obstacle was me, and my mood and learning how to cope with the challenges thrown at us. And people saying boys are lazy! That's not helpful.

He is ok with eye contact, but is incredibly wary of strangers. I think this is partly because he is a lockdown baby and the fact that his interactions with strangers have been negative (blood tests, MRI, hospital visits etc.). His main challenge is Hypermobility. He has to use a lot of strength to get anywhere and becomes tired.

Has the physio helped in any way?

@Onestep2021

Hi OP. I stumbled across this thread as I was looking for people whose babies weren’t sitting up. And I was wondering how you and your boy are?

Hi there. Sorry I've not been back here for a while.

How are you?

@Cockermummy88
My son is also hypermobile and i think thats why gross motor development is so slow. Physio does not think that there is anything wrong with his genes, cause he is progressing every time and she thinks he will start crawling soon. Today he only needed a little support. Physio also thinks that social development is behind because he is putting all his effort trying to crawl. Idk if thats true. Today went to a friends house and he wasnt afraid of her and her family members, happily smiled at everybody.

@ttrrii I think I would agree with that! My LO was using so much effort physically and could only lay in restricted positions which slowed his development. Once he sat, he really became interested in the world. It was a huge leap. I really hope this is the case for you too

Not sure if anyone is out there still but I promised updates. As before, LO sat at around 16 months old. He eventually walked one week after his first birthday. He is very wobbly and falls a lot and benefits from his orthotics. All bloods/MRI have not detected anything. The next step is neuromuscular biopsy but I’m unsure whether to put him through the stress of that as his confidence with people is only just getting better. The final diagnosis is hyper mobility and low tone. The low tone has improved with physio and age. The hyper mobility is still there in his ankles mainly, and doesn’t seem to be caused by anything.

What was the outcome OP?

Hi!

So, all we have concluded so far is that the little man has hyper mobility only. No cause has been found. We have a very delayed appointment with neuromuscular but we think we may have the initial appt and then be discharged. We have had our final physio appointment and also been discharged from there with more orthotics. He is doing so well, and can now run! We have some clumsy accidents and his legs get tired but he is doing so well. Are you ok @Poppybloom55 ?

Thank you. Good to hear he’s doing well :-)

My little boy is 9 months tomorrow but he’s still not sitting. He attends physio at two hospitals, and we’ve seen countless paediatricians and orthopaedics, but they don’t seem to give away much. They just keep telling us to stick with the physio, which we are, but every appointment they say “oh he’ll be sitting very soon, he’s so close” and it just doesn’t seem to be happening. I can’t help but worry. Especially when other babies his age are beginning to crawl and pull themselves into standing.

I understand the frustration. And it’s impossible to know what is round the corner. What triggered the tests for us was an abnormal head measurement, combined with no sitting. Despite that, no body through out all of the months of tests and upset did any doctor have advice other than keep up with the physio for his low tone. They must feel confident that it is just a delay with no cause and I truly hope this is the case for you, as it was for us.

I found it very helpful once under paediatric care to not have a health visitor checking in. I couldn’t bare the developmental questionnaires. They are just awful and irrelevant to parents who are in this situation.

Of course you will worry, he’s your little one and you just want to see him keeping up with others. It’s very hard feeling left behind and feeling anxious when comparing to other babies. 💐