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Regression outcomes

(9 Posts)
Lymphy Tue 28-Jun-16 20:38:46

Hi,
im quite new to MN and only my second post, I have a 16 mo little boy, myself and nursery I recently raised concerns in relation to his development to cut a long story short he has been assessed today by HV and had observed visit at nursery, he is being referred to paeds and audiology, HV said today there is a problem and his demonstrating quite a few traits of development delay and/or ASD however with him being so young it can be difficult to diagnose ( a diagnosis is the last thing on my mind I just want the best for him) Paeds is the place to go. One of the hardest thing to see is the regression he's demonstrating, actually it's heartbreaking, he use to babble a lot that's much more reduced, he would belly laugh so hard he fall backwards that's also stopped bath time use yo be a riot now they are silent, he could shake his head "no" and tell me how old he was by holding up his finger. He doesn't point, say single words, interact with children or adults, eye contact is poor, he doesn't walk ( we are nearly there though), pull himself to standing. When he is upset he doesn't seek comfort. We have worked hard and in the last week he's been feeding himself with a spoon😄😄 I'm wondering in children who have shown a regression if those skills can return, I know I'm asking the impossible it's just so gut wrenching to think I'll never hear the word "mum". Any experiences greatly appreciated, thank you for reading, xx

Lymphy Tue 28-Jun-16 21:02:42

I've just re read and the grammar is terrible, apologies!

Laurajay84 Tue 28-Jun-16 21:13:37

This post bought a tear to my eye and I just had to respond. My DS is 3 years and 1 month (and was diagnosed two months ago), but when he was 19 months he regressed so much that it felt like we had lost him at the time. He went from being a lively, active child that babbled and laughed all the time, to a child that was unrecognisable - not noticing when I came into a room (he would ignore me), zero eye contact, constantly running up and down and flapping, lost all of his play skills (was no longer interested in toys). It was a terrible time and I still have trouble looking at photos and videos from before his regression.

Thankfully, I can say now, 18 months later, we have the most gorgeous little boy who is easy going and affectionate. He loves to learn and has known all of his alphabet, numbers, colours, shapes, since before he was 2 years old. He plays with toys and loves books (although is still lacking imaginative play). He is a fantastic eater, and will try everything i give him. He sleeps through the night and would never do anything naughty on purpose.

I can't believe how far he has come and I'm now excited for his future. Most importantly, he is incredible and we would not swap him for any other child. I regularly tell my husband that I would have ten children if they were like DS grin

Don't ever give up hope. You don't realise how much things can change in a year. I would recommend lots of interaction, lots of laughter, and take pride in all the tiny steps of progress that your child makes.

Lymphy Tue 28-Jun-16 21:24:42

Thankyou, I'm reading your response through tears!! I'm so thrilled for you and your little one! I feel exactly as you did like he's ebbing away, I sound like a stroppy teenager but it's so unfair. He was my miracle baby after having chemo and being told I'd be lucky to conceive, it just seems so unfair! He's my world and I love his bones I really hope he progresses like yours did Thankyou you've know clue how reading that has helped
Xx

Ineedmorepatience Wed 29-Jun-16 09:45:48

My friends little girl had a massive regression, lost all her language and was struggling massively, she has autism and a phonological language disorder.

She has come a long way in the last 12 months, she is 5 now and is doing well. Its taken a lot of work though and many struggles to make sure her needs are met in school.

Good luck flowers

Mumoftwinsandanother Wed 29-Jun-16 11:59:46

I'm so sorry you are going through this. I went through something similar with my DS (he was a bit older though). It feels like the end of the world, like you've lost them. I want to reiterate what Laurajay says. I really don't feel that anymore, DS is growing up lovely, different but lovely and I love the bones of him and am so proud of how well he is doing. He talks again, he plays with toys and imaginatively. He is doing quite well at school (not age related expectations but making progress/making friends (sort of - he is only little)).
It is harder work, just in the sense that clubs and group teaching that suit NT children may not suit my son so I have to stay with him at groups we go to, the teacher has had to adjust things so he is happier in the classroom (although so far the school have been more than willing to do that). All the very best I hope it goes well for you and once the initial grief is over (and it is heartbreaking to see your child struggle with anything) I hope you will start to feel happy again.

Lymphy Wed 29-Jun-16 18:35:53

Oh my goodness, Thankyou for the lovely positive stories and support, honestly I can't tell you how it feels to have heard from people who have experienced this! I've looked and looked for outcomes for regression in younger children but haven't found a great deal, so I'm so pleased to read these! I'm starting to look at it all a bit differently today, this time last week he could/would not touch wet food or attempt to feed himself with a spoon at all, he would refuse a drink would not hold a sippy cup or any cup, this week he had eaten all meals with a spoon, this morning he stuck his hands into his weetabix and made a huge mess (I've never been so happy to clean up weetabix!!) he has been holding and drinking water from a little shot glass, then this morning he held both handles of his cup and drank, he even made an "ahh" sound after, I do it with my cup of tea so it's going in, all this progress makes me think, hey he's clearly capable of learning and doing, so he can potentially do the same vocally, and pointing ect, I don't want to get to excited though. My HV rang today, I had to fill out an exhaustive questionnaire for the paediatric team about him, in one section it asked what my expectations are, I simply asked for any help in getting my boy back, she said they would do all they could then sounded teary herself which made me feel as though she really does care, I'm so happy to read the positive outcomes xxx

Mumoftwinsandanother Thu 30-Jun-16 20:58:01

Another thing to remember is (as with all children) progress is 2 steps forward 1 step back sometimes. Its normal, they are doing really well and then they get tired/ill/start teething again and then they go silent whereas before they were talking or they refuse to use a spoon at all. A day or so later all is well again. This happens with all children but ordinarily you don't think my child is losing skills, you just think my child is grumpy/quiet because they are tired. When you first realise that your child has/may have a neuro-developmental disorder for a while you can't help but analyse every little thing they do and worry like hell each time they seem to slip back or go a little quiet. It might take a while to regain equilibrium on that but ime it does come back (along with the happiness) once you have cycled through the grief for a bit. Best wishes

Lymphy Fri 01-Jul-16 20:40:25

Thankyou, he has been unwell, he had a horrendous cough and cold that progressed to an ear infection at the very end of May he was then admitted at the beginning of June with a bacterial pneumonia, he was in a week and given IV antibiotics and fluids, this last week if the first he's not had a cough or runny nose, I'm kind of clutching at straws thinking this is the reason why, they still think there is a problem but these recent bouts of illness will surely have had an impact, it's been over weeks but a week in child development is quite a lot xx

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