2 year old, with brain condtion and possibly autism, constant screaming

[Harleyfreya]

Hello, my daughter is 2 and recently been diagnosed with a brain condtion cerebellar hypoplasia, its so rare, that there dosnt seem to much information out there on this, and seems more common in cats than humans.

Any way I have done a separate post discussing that, we have thought my daughter also may be autistic for a while now, she flaps her hands alot, rocks backwards and forwards constantly, covers her ears and lowers her head during any loud noise ect, and many other traits the typical traits she has, she also dosnt say mummy,daddy or much at all. And can't understand many instructions,basic instruction( referral to speech therapy been sent), preschool recently spoke to me saying they thought she may have autism, and I'm glad someone else has noticed and not just us, she has contacted the health visitor and yet to hear back, though her 2 year check is coming up and I'll mention this.

Things are getting more and more difficult, she's started screaming, screaming and screaming, wakes up at between 3-5am and just screams high pitched ect, she won't lay in our or her own bed, and specifically will only stop if I'm sat upright and she's sat on My knee, if I lay down or herself she'll scream, the whole of school run she screams, whole way back, I try carrying her, and pushing the double pushchair breaking my arm( I have a 6 month old and 6 year old also) and she'll sometimes stop then start screaming again high pitched, and people just stare it drives me insane!... she's non mobile due to her condtion so she's unable to walk, I dread school run, I dread preschool pick up as she'll scream, anywhere we go she'll scream.

In the house if I go toilet or the kitchen to make food ect she'll scream, it's constant, is this a autistic trait? Typical 2 year behaviour? I don't no, but she spends alot of time screaming

I can't begin to imagine how you are coping with all of that @Harleyfreya.

My DD is on the pathway and whilst she did like to be with me all of the time, I can't remember screaming if I left the room but thinking back, I probably took her with me most of the time

Thank you for your reply @SiouxsieSiouxStiletto , I do take her every where with me, impossible to not do so lol, she's with me all day apart from when at preschool, when I say, when I leave the room, could be just to quickly get something, babies bottle, snacks or what ever, she's never left unattended. The kitchen is right next to the living room, so she'd sit at the stare gate if that makes sense, within sight, I'm going to speak to her health visitor and hopefully get her on the pathway and seen ect💖

It could be related to sensory differences or frustration because of her communication difficulties. As well as a referral to SALT, has DD seen an OT? For sensory difficulties some people find this booklet and this website helpful, also The Out of Sync Child book - not all the suggestions will be appropriate for DD, but some of them may be.

What support is preschool providing? Has an EHCNA request been made?

I don’t know enough about cerebellar hypoplasia to know if this would be the case with DD, but be aware sometimes traits of autism are attributed to other conditions (such as genetic or neurological conditions) rather than autism itself.

Does your little one have hypotonia as per of her condition?
it sounds like she could be in pain?
My son has hypotonia and when he was younger he had silent reflux and this caused him a lot of pain and he would scream and scream unless being held upright he only seemed to calm after eating or drinking milk. He would also scream and wake up at night probably because the stomach acid was going back up his throat when he was asleep.
Have you had her eyesight and heating checked aswell? If she has hearing loss or problems with her eyesight this could be causing her to be clingy.
Also have you found a cause for her condition? Offered any blood tests or been referred to a geneticist?
in the mean time could you arrange the double buggy so she is facing you when your in the school run and maybe this could help with the screaming.

Hello thanks for your reply, yes she also has been diagnosed with hypertonia also, and awaiting results from genetic testing, had bloods/urine and mri ect, we have out first paediatric appointment tomorrow, and a neurologist appoiment in April ( guess they don't rush ey) no plans been made yet, but I'm assuming we'll know more tomorrow about what care/plan freya will receive ect.

She's had her sight and hearing tested no problems, also the screaming has just came on randomly, like over night a switch has gone off and she's changed, I'll mention above about her possibly being in pain at the app tomorrow, her pushchair faces me already, but I do change it and no difference lol. She wants to be carried lol xxx

Thank you for your reply some very useful information here, no referrals have been made yet, but first appointment tomorrow to see the paediatric, which hopefully a plan will be put in place and I'll be given the relevant information/help ect @YellowRosesWithRedTips

Ask for a portage referral If you don’t have this all ready hopefully your county has this (you should be able to google portage services in Bedfordshire for example and see what comes up)
they would be very helpful in helping Freya to start communicating with you and sharing joint attention.
they are also really helpful in linking services and therapies in a manageable way at home and can help you later on with preschool/school
mine helped me with my sons echp and dla
i would also ask about physio and occupational therapy aswell to help with the hypotonia

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. What support is the preschool already providing?

If you are able to get Portage input, that would be good, but depending on where you live, it may not be an option. Some areas no longer provide support to those in nursery/preschool.