Developmental disorders/learning disabilities/genetic syndromes & more support group

[Boo44]

Hi girls I know a few of you have experience with seizures and I wonder if you could advise me on this - a friend of mine's son is 2yrs 3 months and nursery told her that he had a 'funny turn' yesterday where he was playing ok then lay down with his eyes closed and wouldn't respond to them for a minute or so. My friend wasn't too worried as apparently he does this almost every other day, usually when he's grumpy or upset or tired, he will just lie very still with his eyes closed until he's ready to respond again, eg if they tickle his tummy or something he will smile and be ok again.
Also for 2 weeks he's been waking around midnight crying and having like a full blown tantrum kicking his legs and very upset, and refuses to let his parents calm him, it can last for up to 2hrs until he will respond to them trying to comfort him. This is completely new.
Other things are he doesnt like others touching his toys (normal 2 yr old stuff) but will throw his head back and scream. And he is probably speech delayed, although he can speak words he generally chooses not to.

Do you think the lying down and the night 'tantrums' could both be seizures?

 

[sequeena]

Doesn't sound like it to me. The laying down thing is similar to my son he kneels down and puts his head in hands for as long as 45 minutes. He does it because he needs to reset himself. The night time thing is probably night terrors or nightmares of.some sort.

 

[Reid]

We had some huge positives the last 2 days. Yesterday I got a call from lo current nursery saying they had just been informed there was a space at the specialist nursery so they have set a meeting up with all involved which will be Wednesday coming to discuss options ect
Plus yesterday we went to Bruce teeth before bed and I had got new toothpaste with Thomas the tank on it I said to lo look that's Thomas I pointed again and said who's that he said not just Thomas but ats Thomas was super proud and to top it all off I went into the bathroom today to find a poo he done his 1st poo in the big toilet all by himself no steps or anything I never need so happy to walk into the toilet and find poo lol I really feel were off to a good start thus year xx

Yeah I'd agree with above
My son's had a few what I can only guess are really scary nightmares to the point he's shaking crying and he won't leave my side the worse 1 it took about an hour to calm he he was really freaked it's horrible.

 

[RachA]

It's the small things isn't it Lynne?! You must be really proud of him.
Really good about the preschool too

Esther's got a review next Monday. She doesn't come under the child development centre anymore as she's at school so her review is at a clinic (where she had her initial assessment which showed she was behind by a lot).

 

[Reid]

It's the small things isn't it Lynne?! You must be really proud of him.
Really good about the preschool too

Esther's got a review next Monday. She doesn't come under the child development centre anymore as she's at school so her review is at a clinic (where she had her initial assessment which showed she was behind by a lot).

It sure is and I am soooo proud of him.
I'm looking forward to the meeting to see exactly what they can offer him to help with his development
How often do you take Esther for assessments?
Let us know how she gets on xx

 

[RachA]

Very exciting. I'm sure they'll be able to do loads.

Esther was having an assessment every 6 months. She was due one in Oct/Nov but due to starting school she comes under a different team and I'm assuming they didn't have an earlier available date. I think from now on she'll be assessed once a year but we can call for an assessment earlier if we are concerned; the school can too.
Thanks-I will do.

 

[Boo44]

Thanks everyone I guess I thought it must be more than that x

 

[annanouska]

It sounds unlikely to be a seizure as it sounds like he has a degree of control,over the situation, if his speech is delayed maybe it's his way of communicating he needs quiet time. That said the best thing to do would be to video if possible or keep a diary. It does sound night terror ish of a sleep time but everyone thought my son was having night terrors and they were seizures. Is he vacant stares right through U seems in a completely different world kind of thing?

Nothing new going on here, his communication is improving well...a bit weirdly at times but well. His sensory issues are bad tho and nobody is too bothered by them, ot said he doesn't do it permanently so its behavioural not sensory no it's because he's not stressed In your controlled environment!nhe sees the specialist feb I hope to get more answers on the brain blobs!

 

[sequeena]

If only these kids were performing monkeys. I know doctors can only act on what they see but it's so frustrating when they won't accept what we say.

Thomas and yogurt = nightmare but it's the only thing he wants right now. All he does for the first 5 minutes of having a yogurt is cry and screech bbecause he doesn't like the texture - what??????

We did have his yearly appointment with his plastic surgeon come in the post today. His thumb is so loose now. I don't want to do surgery again as the last lot didn't work but I don't know what the options would be? Thomas won't tolerate a splint.

 

[annanouska]

Does he like frozen yoghurt? I freeze yoghurts in the pot then pop out he seems to like tha! It's very hard isn't it, marcus is so much improved on medications so I think ppl don't see the real him at times. He spent an hour repeating sorry daddy today over and over again for no reason x

 

[sequeena]

He won't do anything frozen either. He's the only child I know who won't have ice cream in summer. He would sign for it but once he picks it he realises he doesn't like it

Poor Marcus. It does make you wonder what goes on in their heads.

 

[annanouska]

Marcus is like a computer that works ok but sometimes gets stuck on that screen of doom and freezes and no matter what u can't reset it then it randomly works again!

It's not a bad thing he won't have ice cream I guess after the meltdown will he eat is yoghurt? Really good if he does shows he's challanging himself. Does he find other things like cold custard angel delight type things hard to cope with too? We are going through if he doesn't even like the look of it won't touch it phase. I'm just cooking a roast, I think he may contemplate a potato then meltdown as there's not enough carrots lol x

 

[sequeena]

He does eventually though sometimes I have to feed him. He won't do custard and the like not even jelly. Bless him he can't even have gravy on a sunday dinner

These bloody kids.

 

[annanouska]

marcus just had a compete breakdown throwing everything smashing glasses etc...transpires he wanted an apple. A sodding apple

We've been dumped by everyone hv doesn't see us now the disability HV doesn't either, he doesn't do group slt now as so,embody goes into nursery! He still sees his consultant and hopefully this extra one in feb. Just seems weird that he was doing so much now isn't. I'm continuing to raise him as if he does have ASD alongside his other issues and its healing a lot he responds to the techniques and tools well. His speech is doing very well for him, far from an average child but huge leaps for us. He does still seem to randomly repeat over and over for an hour or two somehting odd. His new phrase is hello, hello, how are u! Wonder who picks up he's a Mr tumble geek lol.

 

[sequeena]

Oh hugs xxx

The hv dumped us too and the disability hv doesn't seem that bothered so I know how you feel about that

 

[Reid]

Oh that's rotten you've both been dumped by the hv so is that it then no more support??
I had the meeting about my son going to the new nursery was not very happy when I arrived to be told the nursery manager couldn't get out after all the fuss they made I originally told them I couldn't get the day off work 2 staff members were on holiday and 1 had that day for a dental app so she cancelled her app and swapped days with me and then the manager couldn't make it pft.. anyway I learned that there is another child as well as mine in for this 1 space that's come up there will be a big meeting at the end of this month to decide who gets it.
In the meantime there going to arrange for me to go along to the nursery to see it and meet the staff because none of my questions could be answered today a bit miffed but not much I can do xx

 

[Thurinius]

A positive day for us. The special needs hv came to assess my ds. She was sooo nice and so good with him and I really think she saw the best of him. She saw what I see every day, a really happy smiley clever little boy. She got him interacting with her and playing with her.
She said that she can see that he really wants to communicate but his language isn't good enough. And she can see he really wants to interact and play but can't read the social clues like over four year olds can. Such as at one point she stopped playing and just sat and my ds clearly wanted to play with some more toys and kept peering at her toy bag and shuffling from foot to foot but didn't actually initiate anything until,she finally said 'more toys?' At which point he smiled and said 'more toys'
And the thus afternoon we had his one hour visit to his new nursery, this was so successful that he's going again tomorrow for another hour visit

 

[annanouska]

with good intervention those things may pick up quickly. If language is an issue sometimes social. Yes and interaction can suffer too. Have u tried to introduce sign at all? It really is amazing. Since signing my son can pick up verbal words much better. We were at the doctor and I Moët repeating Dr to him to prepare him and he just looked blank but I signed stop. Look. Listen. The signed and said doctor to which he copied sign and said doc-a which I was really proud of. It seems to really help him.

We are doing 4 weeks of 1-2-1 play therapy then i think that's it. Hilarious as she said yesterday, I cna deff see where your coming from that he learns things disjointed and is a bit muddled in things....really?! You didn't notice months ago?!!

 

[RachA]

A positive day for us. The special needs hv came to assess my ds. She was sooo nice and so good with him and I really think she saw the best of him. She saw what I see every day, a really happy smiley clever little boy. She got him interacting with her and playing with her.
She said that she can see that he really wants to communicate but his language isn't good enough. And she can see he really wants to interact and play but can't read the social clues like over four year olds can. Such as at one point she stopped playing and just sat and my ds clearly wanted to play with some more toys and kept peering at her toy bag and shuffling from foot to foot but didn't actually initiate anything until,she finally said 'more toys?' At which point he smiled and said 'more toys'
And the thus afternoon we had his one hour visit to his new nursery, this was so successful that he's going again tomorrow for another hour visit

He sounds like Esther. She won't just say what she wants. She will look at what she wants and look back at me or whoever and just keep doing this until she's asked 'would you like this?'. She will also say "what esther want?' and she just repeats it until someone says what it is that she wants. Sometimes i just don't have a clue what she wants and i get an hour of 'What Esther want?' She knows what she wants but she just can't seem to bring the words to her mind.

 

[Thurinius]

He sounds like Esther. She won't just say what she wants. She will look at what she wants and look back at me or whoever and just keep doing this until she's asked 'would you like this?'. She will also say "what esther want?' and she just repeats it until someone says what it is that she wants. Sometimes i just don't have a clue what she wants and i get an hour of 'What Esther want?' She knows what she wants but she just can't seem to bring the words to her mind.

Very much the same. Yesterday my son was sitting on his bed smiling away, bouncing up and down and clearly very very happy about something.
So I asked him what was making him happy, but he doesn't have the language to reply so he just smiled and smiled and giggled and giggled.
Would love to know what it was that was so smile inducing.