Social Communication Pathway

[JanJan71]

My daughter has been put on a social communication pathway :( I'm heartbroken.
She was coming on so well and now this!

The switch came when she got a urine infection over 2 weeks ago and a high temp of 40.6. Sunday was normal, Monday forgotten everything. Her words gone. Her eye contact coming back but doesn't really respond when calling her name. She doesn’t laugh like she used to.

She has been referred to peds as still got urine infection and temp of 37.5 constantly. So could it be an infection or am I deluding myself? Got results today that urine infection cleared now

I've read about regression but what I've read about it is just a child hits all their miles stones and then they regress. My daughter was slightly delayed in walking and had launguage delay but nothing else.

Can she get back to how she was? Anyone experienced this?

Everyday seems hard and bleak :(

This sounds so tough OP, I'm sorry you and your DD are struggling. Can I ask how old she is?

I really don't have much experience but didn't want to not respond. My DS is 3 now and at 18 months had a stomach bug. After that he slowly stopped saying the 10 -15 words he had and stopped engaging and communicating. He doesn't play really at all now and hardly responds to his name. He can't follow instructions or speak at all and has sensory issues. We certainly pinpoint it like a "switch" but I wouldn't say it stopped so suddenly like your DD, more over a few months. I'm not sure if an infection can be the cause but if she is very young then she may just be recovering still. If her body is fighting a temperature etc maybe her energy is being directed there rather than to speech and communication?

18 months on and my DS is now 3. His speech has not come back (yet) and he is still having massive struggles. I know that's not helpful to you but I am still hopeful that with the right support then we can help him. I just wanted to share my experience.

And I'd like to add that its good you are already getting help and a referral. It took months before anyone took my concerns seriously despite him losing speech etc and over a year before we were able to get him referred.

Hi OP I hope your DD is feeling a bit better today. It's very overwhelming when you are told your child may be different and with illness on top of that it must be a very stressful time for you.

Like the PP my ds lost his speech over a couple of months at 2.5 years. I agree that it's good that you are being taken seriously and referred so quickly. We ended up waiting until my ds was 4 for a diagnosis. There was very much a wait and see approach in our LA.

We have put in quite a lot of early intervention and his speech suddenly started coming back at about 4. He's now 4.5 and although he doesn't speak like other children his age, I do think we are back to where he was when he lost his speech and communication and he seems to be coming out with more words everyday.

That sounds very worrying and to have a serious regression after a fever should surely result in some sort of neuro referral.

@zzzzz any thoughts?

Hi KoalasAteMyHomework, dd will be turning 3 next month. She has no sensory issues, occasionally goes on tiptoes. Just had speech delay. Peds said 9 months ago there was no red flags for her. Also Speech and Language said the same and now this has happened.

Sending hugs your way.

Hi Livpotter, can I ask what early interventions you have used on your ds? As any help would be really appreciative. I'm so glad for you.

Hi HardAsNails, saw the peds Neurodevelopmental paediatrician a couple of weeks ago and she said she has never had over one day change like that. I asked could she have a scan but she said no need. As didn't feel she needed it! I'm seeing the peds at the hospital next Friday for overall look at her health and will ask again there. As I feel something had gone wrong from the illness.

When I originally saw the GP for the urine infection I asked for antibiotics but she said she didn't have it. She did have a urine infection as by the Thursday the GP called me back and put her on antibiotics. I feel that if she had put her on the antibiotics when I asked that Monday she wouldn't of got so sick and wouldn't have got the 40.6 temp and wouldn't of regressed!!

My ds is very anxious and has a lot of sensory processing issues. Both were really bad at the time he lost his speech and because we had no idea that was the issue (we though he was just being a 2 year old!) we didn't really help the situation. As soon as we realised it was autism I read loads and stopped expecting him to act like a NT child.

He mainly did a lot of OT initially and we did have a private Salt for a while, which we stopped because I felt it wasn't helping. We put in visual support at home and really started engaging with things he enjoyed (mainly films). It's really been since he's felt happier and more regulated that his speech has developed I think.

I really hope the doctors can work out what's happening for you.

Hello

Sorry it's such a worrying time for you.

My DS is autistic and did have delayed social and interaction anyway:

But between 9 and 13 months he had a serious of non-febrile seizures, and following all of those he seemed to lose a lot of the skills he had gained.
But he did re-gain them eventually (sometimes very quickly - the worse after a cluster of seizures when he become very unresponsive and quiet for a few weeks).
In hindsight I think being so very poorly took it out of him, and as a PP had said concentrating on making a recovery whilst also using lots of communication skills was too much.

Over 40 is a very high temp and she must have been feeling horrible poor thing.

Hi zzzzz, no seizure we have seen so I don't think so although she could of when asleep. She was at home when unwell. She finished her antibiotics the other day. Urine infection has cleared. Spoke to peds about her illness and regression but didn't really comment tbh; just took a note of it. All she said was that she hadn't ever come across regression happening over night but had heard of regression happening over long term illness. My ds had urine infection for around 6 weeks on and off so couldn't really say that was long term. I will mention about seizures when go to peds next Friday and see what they say.
I'm so happy for you that your dd is doing so well this gives me such hope. X

Hi livpotter, is op occupational therapy? My ds likes watching peppa pig and I sit beside her which she likes! Is that what you mean by watching films? Thank you.

Hi Marshmallow09er, I'm so glad that your ds has regained all skills, this gives me such hope. X

She seems better today. Much more eye contact, responding well and interacting more with me and her 2 brothers.
I'm praying xx

I'm glad your ds is feeling a bit better.

Yes Ot is occupational therapy.

Initially just sitting and watching things with him (he's always more relaxed when something he enjoys is on), then I started to take things he liked from movies and try to use them in real life, like reenacting scenes or saying phrase he liked, or drawing characters from tv shows with him. I just try and use the things he loves to help me engage with him more. It just happens my ds's main obsessions come from films but it could be whatever he's interested in really.

Hi livpotter, thanks for that.
Really bad night last night kept on screaming most of the night; like having night tremors! Having rally bad wind but I'll check her urine again :(

I agree with zzzz

Hi zzzzz, been back to GP out of hours this morning all ok. Tummy soft. She done a big poo before we left which was quite firm. Going to do another urine sample to take to doctors tomorrow. GP said all seems ok with her and looks very healthy etc but take urine tomorrow.
She seems ok now. Gave her calpol and nurophen today. Temp 37.5.
I just hope it doesn't happen again tonight :(

Fingers crossed and thanks zzzzz.
I'll keep you all updated xxx

I hope you both get a better night's sleep tonight!

Hope you all get some sleep tonight x

How is she doing today OP? Sorry you've had such a stressful time.

Hi livpotter, KoalasAteMyHomework, Lighttripper, last night & night before were absolute hell tbh...she screamed most of both nights and I was hanging :( very bad. It was awful. Worse she has ever been non stop and I mean non stop screaming at top of her lungs.
Gave her infacol and gripe water and she did eventually nod off around 330ish last night. Today good, seems in good form. No screaming and tonight gone down easy. Been giving her infacol through the day so it must of been bad gas all this time. :(

Taken urine down to doctors today and that has been sent off.

Got Speach & Launguage tomorrow just myself and husband to chat about how to help her more.

Got peds on Friday.

I'll keep you updated what they say xxx

Hope you had a better night Janjan

Poor thing. Hope the better day turned into a better night and it means she is getting over the illness at least. Do let us know how it goes with the Paed team on Friday!

Hey OP hope she had a good night and the chat with speech and language is useful x

Hi all, went to S&L and they have given me some advice on how to communicate more with dd like more structure in play, picnic with toys and brushing,, brushing teeth, going to bed with dolly routine, combing hair and feeding baby which she does! Anything she likes extend on this, help me with chores, different books look at as maybe bored with ones she has already, turn taking and more...some good tips!
Saw peds at hospital and he was really good. Listened to all my concerns. Redone bloods, urine, will be doing an MRI as all this came on so sudden and also said to have a genetic testing done. Which I will go back to other neurologist peds for. She did mention this before but said ds didn’t need it as had no odd/obvious moles on her body and her face had no dysmorphism!! If she won’t do it go back to the hospital peds as it should be done.
He said she was well developed and healthy child.
So see what comes back!
Ds seems nearly back to normal which is amazing news. 😊😊

Sorry meant to say dd not ds! 🤪