Delayed - 11 month old

[Lcfmmm]

My DD2 has been classed as delayed in multiple areas. She has been unsettled since birth, has never liked being held other than facing outright but only if we are standing. We have never been able to sit down and hold her. She arches her back a lot and has done this since very young.

When she was first born we had a lot of challenges around feeding, but whilst these things have improved over time other things started to pop up as the months have gone on. She was prescribed different milks and reflux meds, etc but these things never helped. Reflux meds actually made her worse.
She can now sit her self up from laying down.

She started to do this at 10.5 months. She has in the last week been trying to get on all fours, but then she’ll just go on her tummy and commando crawl. She’s been commando crawling since 8 months but she’s always been unhappy doing this and will cry when doing this. She also cries more when she does go on extended arms. Also in the last week she can pull to stand if the surface is low enough. She 9th centile for height and weight.

It’s been a really hard 11 months as we just want to see her happy and thriving, we are terribly worried about her. She has never babbled and even in the early months she never cooed but we put that down to how unsettled she has been. We have hoped that with every month things will get better, there just doesn’t seem to be an end in sight. She spends most of her waking hours crying, no matter what we do. We started to wonder if it’s partly her temperament as we read the term high needs baby but we worry she is in pain.

She’s had regular paediatrician appointments since she’s was 3 months old. She’s been assessed by Speach and language therapist for feeding (solids.) She was referred to physio and had her first appointment two weeks ago. They said she has some hypermobility in her ankles, wrists and hips. And they confirmed to us that she is delayed. She also had HV at 10 months where she scored low in all areas except fine motor skills.

DD1 is such a great big sister and adores her but If she sits and plays on the floor with her and touches her she’ll usually cry and throw herself back. I worry that I’m doing something wrong but I have tried to do everything the same that I did with DD1 who hit all her milestones and was such a happy baby. Also i don’t want to compare her to her sister because my first was very advance with speech and it exploded really quickly so i know that may not be the case for DD2. I just want to see her happy as she has spent the last 11 months extremely unsettled. I suppose I’m just looking for anyone who may have gone through anything similar and looking for positive stories of things getting better? Thank you if you read to this point and sorry it’s long.

Op, I know you will know this but comparison is the thief of joy. It’s so easy to do it, but your girls are different to eachother and can’t follow the same trajectory. We have 2 hugely different DD’s, admittedly I think it was probably easier for us as DD1 was delayed and DD2 isn’t, but all we can do is provide opportunities for them to learn and absorb.

I am not sure if this will reassure you, but DD1 didn’t meet any mile stones (except fine motor as well coincidentally). She is almost 4 now and though still a bit behind, she is thriving. Your DD is showing signs of progressing and that’s something to focus on. Is the physio going to continue to see her? We started with physio when DD1 was about 2, she didn’t walk or anything at that time. It felt like we might never get to where we are now, the days really are long when you spend them worrying. Does DD enjoy doing anything? Does she laugh etc?

@Btowngirl That is very true and I think that is one of the struggles that fact that DD1 wasn’t delayed but I do try my hardest not to compare. But you are so right they are so different.

It is reassuring and nice to hear from people who have had experiences like this so thank you for responding. It’s lovely to hear your daughter is thriving, I hope you don’t mind me asking was there a reason for your DD1 delays? Yes it’s definitely progress so I should probably focus on that more as she has progressed a lot in a short space. She is going to see the physio again in 2-3 months. She enjoys her baths and she has started to giggle more recently when we repeatedly do things which is also lovely to see as we haven’t had that until now.

Has your little one had genetic screening? Do you feel it’s time to seek other professional expertise beyond the pediatrician?

Have allergies and reflux been considered for the crying and back arching?

Has she had a hearing test?

@BreakingBroken No she hasn’t had any genetic screening. I don’t know if this sounds silly but would they test her at 11 months?

@Anditstartedagain Yes they were both things that were looked into first as doctors suspected silent reflux but medication actually made her bring up her bottles and she couldn’t keep anything down. She was put on Neocate but it made no difference. She has had a hearing test and that was fine.

Hello. When she is feeding is there a pattern to it, does she take more food in the morning and less as the day goes on? Does she ever vomit and is there any pattern to it? Has she seen a gastroenterologist? If it’s not reflux it could be worth seeing one if she is still uncomfortable after eating (crying screaming arching etc)

@Lcfmmm it's a blood test and may also mean blood tests for you and her father.
a brain mri is also possible
again i would push for further testing so that you have a better ability to plan for the future.

@Hazelmaybe Hi, she takes around the same amount all day. She never vomits. She did have a barium swallow X-ray and the result of that was she had slow transit through the oesophagus. She was referred to see a gastroenterologist but they said it wasn’t a concern as there were no structures, hernias or vomiting. They then referred to speech and language who have done a feeding assessment.

It’s a while since my children were little but Neocate still contains cow milk protein, it’s just broken down. There are other formula which are completely dairy free.

If she has some slow transition through the oesophagus it wouldn’t be unreasonable to wonder if she had slow transit in other areas, is she constipated? it does sound like she doesn’t like any pressure on her stomach? Is she maintaining her growth curve?

Trust your intuition, if you think she is in pain keep pushing and telling the. Take videos of her screaming and show them eg after feeding, or during feeding. Sometimes when they see it then they take you more seriously. Sorry you’re going through this it’s very hard.

Has she seen a community Paediatrician? They generally specialise in developmental delay / similar issues. They can tie everything together - SALT, physio etc. It is so hard with developmental concerns as you just don’t know if they’re going to start talking / walking etc tomorrow or never and uncertainty is difficult to manage. My advice is to take each day as it comes and not look too far ahead if you can x

@Hazelmaybe She did suffer with constipation as a newborn but doesn’t anymore. Yes she has always stuck to her growth curve. Thank you for your kind words. We will keep pushing.

@Gratedcamembert No she hasn’t seen a Community paediatrician. We see a consultant paediatrician at the hospital. That will be something we will look into, thank you x

Hi @Lcfmmm how are you getting on now? Any updates. I see so many similarities between your little one and my youngest son.

Hi @pinklemonade18, she’s now 17 months. She has made massive progress with gross motor skills. Shortly after I wrote this post, she began crawling on all fours. As soon as she did that the same day she pulled to stand. She started taking steps at 13 months. By 14 months she was walking. She now walks very well, but she does tire quickly due to hypermobility. She is eating really well now. She brings us toys, books and she even climbs on us for a cuddle which I never thought she’d do, as she hated being held. She still doesn’t have any words but is making more sounds now. Her mood shifted when she started walking but she can still be quite unsettled which seems to be when she tires quickly from all the walking. She’s made so much progress but we are still worried about the lack of words but we have things in place to support her. Her fine motor skills are really good.

How old is your youngest son?

@Lcfmmm thanks for your reply! I’m so glad she’s doing better and has made lots of progress. Totally understand the worry about the words. Although I have a few friends with children who didn’t talk until later and are fine now. It’s so hard not to worry though isn’t it?

He is nearly 1. Born a month early because he was small. Completely miserable from very early on. Some difficulties feeding. Has always hated tummy time, mostly needing to be held etc. I suspected possible intolerances but was dismissed for months. Cut out dairy and soya from 4 months and was so much happier. But more and more miserable over time again, which I think coincided a lot with weaning. He seems intolerant to so many foods. He’s like a different child when he’s not eaten anything he reacts to, but because it seems to be sooo many foods, it’s rare for him to not be unhappy. Have seen allergy team and he’s got no immediate allergies so they weren’t much help.

had his 10-12m check recently and behind in gross motor skills. Not surprising as he isn’t crawling or pulling up to stand.

He does babble.

I just feel so sad about it all and so sad for him. So much of his first year he’s been miserable / uncomfortable. Our eldest was a very different baby (although he didn’t crawl until 11m and walked at 17m!). But very easy baby, talked early, just very content etc. x

It really is hard not to worry, especially when you have an older child. I try so hard not to compare. But all we wanted was to see our little girl happy.

Your little boy really does sound so similar. My daughter was prescribed Neocate and feeding improved almost immediately so made me think it was intolerance/cmpa but then she began to be very unsettled again and weaning was really difficult. It seemed to make everything worse and we had to keep stopping and starting as she just didn’t seem to tolerate it but she’s now such a foodie and really motivated by food.

From 12 months + they start to make some big leaps and hopefully walking starts to make things a little easier. We just wanted to see her happy. It really is so hard seeing them so uncomfortable and unsettled. We still have worries which is really hard but walking did shift her and made such a difference. I hope things get better for you and your little one, it really is so hard and I completely resonate with you about feeling sad and sad for them during the first year. It’s been so difficult. My first was also, so content and hit all milestones on time or early. Also spoke super early. Wishing you all the best x

@pinklemonade18 Also, my daughter was in the black section for gross motor at her 10-12 month review and then progressed so quickly x