ds regression and loss of speech fluency and vocabulary

[isthisrightornot]

ds had a drowning accident age 5 which involved lack of oxygen and a subsequent illness.
He had been fluent with language from toddlerhood but after this initially hardly spoke,and then his speech was very simple with a lot of pauses and searching for words and saying odd words which he made up.

He also was in his own world and didn't make eye contact,initiate conversation or sustain a conversation properly.

He was also hyperactive whereas he had been a calm,focused,talkative child.

The GPs didn't really take it seriously and when I eventually saw a paed he didn't think he was abnormal[he was talking by now but not like before] and found he had glue ear which I thought could have been the reason so it was left.I also questioned myself re looking for something being wrong because of the upset etc and wasn't sure if anyone would believe me.

Now I have a paed appt for a different reason and don't know whether to bring it up or if they will just think I am being over anxious and imagining things.

The thing was his communication skills were excellent from about 18 mos onwards and he had never had any problem with understanding or expressing himself coherently so I still don't really understand why his speech is still stilted,in a different tone and he can't find so many words ~ even now his speech is not as good as when he was 2 and I don't understand it.

Can anyone just tell me if they have experienced anything similar or just advise me whether to bring it up again[last time the GP said ~"Stop pressurising him to speak"~ as if I would],or just understand.

Thanks a lot

I have no idea but you could try contacting BIBIC as I think that's the sort of thing they might be able to help with (judging from the information pack I got from them the other day. DD has communication issues but always has done so completely different, but there was a case study where they had worked with a child who had drowned). I would mention it to your paed because if your child has had that sort of accident / any loss of oxygen I think you have a right to be concerned.

I don't have any advice as we are still not at the bottom of it, but my daughter is exactly the same, she is 3. Cannot link it to any accident but she spoke very well at 2 and then at about 2.9 she suddenly couldn't speak fluently and babbled, she still slurs her words and is nowhere near as clear as she was at 2.

She has had an EEG to rule out epilepsy (Landau Kleffner syndrome) which was clear but not totally conclusive as she did not go into a deep sleep.

It is a very worrying thing to happen.

I would definitely bring it up if I were you, our paed took it very seriously.

(my DD also is probably going to be diagnosed with ASD but its not clear that this is related as it was very late for an autistic regression and nothing else regressed.)

Thankyou for replying.

At the time I went back several times and in the end requested a paed referral myself ~ when he was seen he was probably within normal limits for his age group but only I had really the detail of knowing him and his speech really well before iyswim.

I have waited and waited for things to improve ~ and they have a bit but still not right somehow.

Fanjo I don't know how you felt when it happened but I found it very odd and frightening because communication was such a big part of dss personality.

oh I felt terrible, and odd, we had always thought of DD as bright and advanced with her speech and she suddenly was just babbling and slurring, it was/is distressing

The only other thing was he had fevers around that time which the GPs put down to his chest or viruses and some headaches and was putting things in his mouth etc which he did only transiently in babyhood.

Also he started grinding his teeth terribly in the night ~ I put this down to general illness or upset but don't know if could be possibly seizures.

Has her speech improved at all now?

it has,but only about 50%. Still waiting for an appt to have it investigated further.

I see, I hope she continues to improve.

I have the feeling deep down that something was missed ~ like an infection or abscess or similar.

I think I will ask about it again but I need to get the story and concerns straight in my ead.

head lol

I would like to suggest to you that you hang on to the paed (ie don't let them discharge you again). Even if you don't get the answers this time round, you might find it useful to have this contact long-term, because a few months or even years down the line you might want/need to delve deeper, get tests, ask for a referral etc.
Years ago with my ds we were faced with supposedly incurable progressive neurological condition and I looked our paed in the eye (in tears) and said I needed his help as I refused to give up hope and I was prepared to pursue any sensible route.
A few referrals drew a total blank, but then I found a research by a top specialist that appeared to give a chance of hope. I asked to be referred to him(totally out of the area with a 6 months wait) and it was so worth it, as my son's life has been turned around. It would have been quite impossible to get this referral via a GP then, maybe now it's easier.
Over the years, I also have been able to ask for various tests by going directly to the paed, rather than justifying every step to GPs, who have changed over the years. We still keep the annual appointments even now, sometimes we ask to be seen sooner. If I need to get in touch, I just pick up the phone to his office rather than go to GP.

Trust your gut feeling, you know your child better than anyone and if you feel something is not right, then they should listen.
Fevers can mess up neurology, so can post-jab reactions. Even with neurology, keep your eye on various developments not only in purely medical field as drs don't know everything and some are better than others.
good luck

Thanks nightcat ~ the paed said he thought he was entirely normal neurologically but if I needed to go back I could bypass the GP and go back to him ~but I felt nothing had really changed to justify this and when I saw him he seemed certain he was ok and explained the speech issues as quietness after the trauma.

But I don't feel that expains the apparent confusion and him trying to speak but not being able to properly.

The paed I saw then was the general paed ;the one I am seeing now is at the same hospital but deals with asthma and I don't know whether to bring it up or not.

Part of me thinks to bring it up and maybe he should have a CT scan and EEG but then another part kicks in with I've been through it with the paed already and I'm being over anxious,probably because of him being ill at the time.

I would ask for a full assessment by a developmental paediatrician & maybe a SALT assessment.
How old is your ds now? Do school ahve any concerns?

can't believe you were also accused of pressuring your child to speak! I've just posted about it on another thread about speech and behavioural changes, have a look.

Bottom line - don't listen to such nonsense and trust your instincts!

Hmm Health Professionals can be a bit arrogant/ignorant when it comes to this sort of thing sometimes ~ I couldn't believe how passive the GPs were ~ when I felt desperate about it they just nodded and said "mm I don't know really..."

ds has had tics ~ he had eye blinking and stammering before the accident and after the accident he started repeating everything that he said a second time in a whisper or out loud.He was repeating things several times at one point.

Now he is a lot better but he doesn't pronounce his words as well as before and he speaks slowly and in a stilted way.

Today he came up and told me that his sister had spilt the turnip juice[beetroot juice] now I don't think that is unusual exactly but he often describes things in a roundabout way which he never used to eg "house of glass in the garden or down there" for greenhouse[we've always had one and he always called it a greenhouse before ~ now,I can tell him it's a greenhouse and he still won't call it the right name.

His reading didn't change and his voice is more fluent when he reads.

Hmm, a lot of what you describe there sounds like my daughter who has a language disorder, for example repeating things (echolalia) and talking in a roundabout way (inability to say greenhouse).