To think my toddler is regressing?

[SinkGirl]

My twin boys are 19 months old.
Twin 1 was the bigger twin, spent two weeks in nicu
Twin 2 was much smaller and was diagnosed with a complex illness, spent two months in there

From an early age, twin 1 was further ahead physically while twin 2 was better at cognitive things. He was really into things like ball posting and shape sorting, and had more consonant sounds earlier on. He would copy me clapping and making specific noises or faces while twin 1 didn’t.

For the last few months I’ve been concerned as twin 1 has caught up and overtaken him on the cognitive side. Twin 2 has stopped clapping, stopped mimicking, stopped being able to concentrate on any toy and not interested in anything other than chewing on things and walking up and down the room. Neither have really progressed vocally for a while.

I don’t know whether he can’t do those things any more or whether he’s just not interested. He can’t / won’t stack blocks, he’s no longer interested in shape sorters, I’ve tried new toys etc, he’s just not interested.

Twin 1 Is progressing all the time, he’s amazing with Duplo and blocks for example. When they were younger twin 2 seemed so bright and alert, I’m starting to worry that something is going on. The only thing he’s interested in right now is messing with his feet, toes, nose and ears, and running up and down. Eating anything he can find on floor. He does have a bad squint which has worsened in recent months but the consultant appt isn’t for another two months. He is still making eye contact and clearly he can see but I’m wondering if that could be the cause.

Is this normal? Anything I can do to engage him?

Thanks everyone. I will speak to them on Thursday.

I just have so much guilt about so many things. Right now I’m really hoping this is because I’m a shitty parent and not because there’s something wrong because at least I can try to fix that.

It does sound similar to my dd from 24 months who was later diagnosed with asd. It was still relatively subtle and a slowing down rather than regressing. It was a really hard few years until she was diagnosed aged 5. It happened around the time dd2 was born and I thought I was just a crap parent who couldn't handle 2 kids. It was very painful seeing dd not developing at the breakneck speed her peers did so I understand your worry. ASD is not the end of the world, of course it isn't, but it is difficult for Dr being different. Her little sister is 2 years younger, NT and I feel like she's sailing through life. So I understand the comparison and the guilt. I do feel less guilty now I now she has ASD and it's not my parenting that has affected her.

If I only had one baby, I wouldn’t be seeing constant comparisons shoved in my face hour by hour. I would have been able to be there round the clock when he was in nicu, I would have been able to give him my undivided attention, I wouldn’t have had to leave them in swings while strapped to a pump, maybe they’d know how to point and what a telephone is, I would have gotten them out more and maybe they’d be waving hello to people right now.

I don’t know if it is my fault or I just want it to be my fault.

I’m sorry.

I don’t think that this is your fault at all.

Does he have a metabolic disorder? The foot pricking made me think of this. Are they identical twins? Is so did they have twin to twin transfusion syndrome?

Sink don’t beat yourself up. You are doing your best. I have twins and it’s so very easy to say you would do more with just one. Yes you would, we did (3 under 5 now) do more before we had twins but their relationship with one another gives them a different dimension to their lives. An only would not have had this!

Is there a twin group local to you, ours isn’t advertised well, can you ask around? It’s a great support.

They’re fraternal twins, he had IUGR. He had hyperinsulinism but that diagnosis was changed a few months ago to Ketotic hypoglycaemia.

Are you a member of either of these facebook groups?

Children’s Hyperinsulinism UK
Ketotic Hypoglycaemia

There are a number of parents who are going through the same issues. Please contact them for further advice.

Yes thank you, I’m in both - thank god for the parents there who’ve given me a lot more info and help than his doctors so far. Seeing the paed on Thursday because of the KH, haven’t seen them since his dx was changed and they’ve told me almost nothing - it’s only the fb group that has helped me understand what’s going on!

Just wanted to thank everyone for their advice. We saw the paediatrician today - I think I was hoping deep down that she would tell me it’s all perfectly normal and he’s fine, but obviously that’s not what happened. She’s referring him on to another consultant specialising in child development and their team. Hopefully we won’t be waiting too long. The more closely I watch him, the more I think the squint may be playing a role - it’s constant now in one eye or the other, and I’m sure there’s no way one could have perfect vision with such a squint. I suspect that although he can see its much more difficult to operate toys etc and may be hard to concentrate. Or maybe I’m grasping at straws. Who knows.

Thanks for the update op. I hope you’re feeling ok. Let us know how you go when you get the referral.

Just found this really old thread of mine and wanted to post an update for anyone who is searching for stuff on regression and comes across this.

We’ve had a very difficult year.

DT2 (who showed signs of regression) was shortly after this diagnosed with a visual impairment and a specific type of brain damage. In December he was diagnosed with ASD.

In February DT1 was also diagnosed with ASD. He too regressed but very slowly and only in social skills and the communication skills never came.

They are both still non verbal.

They are both making good progress with support from portage and some SALT.

If anyone else experiences a regression like this, please push for assessment right away. The earlier the intervention can happen, the better. The book An Early Start For Your Child With Autism helped me no end in the beginning.

and hugs to anyone in a similar boat

Thanks for the update OP. (I was worried reading your original thread not realising it was old). Sounds like your instincts were spot on and your DT have got early intervention and are in a good situation now. How kind of you to post an update to help others in a similar situation.

Looking back it is painfully obvious that something was very wrong but I think it’s difficult when it’s your first to know for sure. Very few things cause such an obvious regression and fortunately we were able to rule out the other things.

If anyone finds themselves in this situation and wants to chat, just drop me a message

Of course it'd difficult OP but you did notice and you did get them help in good time. I'm sorry to hear you've had such a difficult year. You sound really lovely offering help to others in a similar boat.

Sorry to read your update OP but glad your darling boys are getting help.

I really empathise with this. Early intervention made a world of difference to ds and I hope it will for your dts too.

Thanks everyone. We are okay. They are really making progress - not in the typical way but in their own ways and I’m coming to terms with that. They are wonderful boys, everyone who gets to know them loves them, if they decide you’re worth their attention and affection then you know you’re very special! I’m sure it’s going to be hard for a long time, but we are getting there. I know I felt completely terrified when I posted this, and I don’t feel so terrified now (most of the time) - still worried about their future but we are doing the best we can.

If anyone who encouraged me to seek help sees this, sending lots of thanks to you all