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developmental regression! please help

20 replies

Lucyb88 · 12/06/2013 09:26

Hello I am growing increasingly concerned for my 3 year old who has been having a lot of problems which began to surface about a year ago. He has trouble with walking and he's movements are very rigid, fine motor skills, socializing, speech and behaviour is very negative. I have been seeking help and got no where until I informed he's health visitor of these problems. She dealt with it wonderfully and 2 weeks later I saw the consultant, he has hd bloods for various things and an MRI test, we get the results on 14/06/13, this Friday. My issue is that I have a 4 month old baby aswell and my 3 year olds behaviour is becoming very bad, I cant do anything (even go to the toilet, or talk on the phone) without him doing something naughty or screaming and throwing things. I have no idea where to go for support without people thinking that I cant cope. I just need some pressure taken off me, my family all work and im becoming a bit stressed. Anyone have any ideas what might be wrong with him and how I can get support?
He has seen physiotherapist who said the same as the consultant (about he's unusual gait, constant falling over, walking, rigid movements etc.) she said that its not a physical problem, its a block from his brain telling his body the wrong messages, that's another reason why he had an mri. He is on the waiting list to see a speech therapist and an occupational therapist. I've had no help at all I feel pretty much a recluse at the moment, everyday things like shopping are an absolute nightmare, my son cant walk long distances without becoming very tired and frustrated. I have a buggy board but this doesn't solve the problem. He is toilet trained but I cant let him go by himself because he falls down the stairs without assistance, this is partly to do with the fact that his brain runs in overdrive and he cant focus, but mostly its a physical problem as he kind of crawls up the stairs.
Also can I claim DLA For children without a diagnoses?
Thank you.

OP posts:
Ineedmorepatience · 12/06/2013 09:36

Sorry you are having to go through this. To answer your last question first, yes you can apply for DLA without a diagnosis but first get the guide from cerebra.It tells you how to fill the form in.

Are you in England? If so contact your nearest childrens/sure start centre and tell them what you wrote on here. They should assign you a family support worker who can help you with forms and signpost you to other services. They should even be able to get your ds a place at a preschool for a few hours a week to give you a break.

Good luck and keep coming on here, it will keep you sane (ish) Smile

armani · 12/06/2013 09:40

Hi, sorry to hear you are going through this. With regards to dla, yes you can apply without diagnosis. If you have any reports from pead, doctors, physio etc then include them with the form.

Your ds symptoms sound very similar to my dds, she is 7.
Have the doctors not explained why they have done an MRI or blood tests?
Once the consultant has these results they can refer your son for the support eg salt, ot, physio etc he needs.
Has he been assessed by an OT at all?

Lucyb88 · 12/06/2013 09:45

thank you, my son does go to pre school, but that's the only break I get, thank you and I am so glad I found this site, I was nearly ripping my hair out! /emo/te/1.gif

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Lucyb88 · 12/06/2013 09:46

thank you, my son does go to pre school, but that's the only break I get, thank you and I am so glad I found this site, I was nearly ripping my hair out! thank you

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Lucyb88 · 12/06/2013 09:51

nope, he hasn't been assessed by an OT yet, still waiting. The system is very slow. They didn't explain what they were looking for and couldn't give me any idea as to what it might be, so I have no idea what to expect and like any parent you expect the worse. I will let you know the outcome is on Friday, hopefully the consultant will have some idea what is going on so we can get my son the help he deserves. Just by knowing what it is will help me and my partner to understand the problem rather than become frustrated because we don't know what is wrong.

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armani · 12/06/2013 10:02

That's terrible they haven't explained anything to you, I would be on the phone to then asking for an explanation, explain how worried you are .
Has the physio mentioned any increased/ decreased tone in muscles? Any tightening?

StarlightMcKenzie · 12/06/2013 10:14

Yes you can get dla without a dx but you'll be sensible to get a number from the local surestart centre of someone that can help you with the form as it's a bugger.

Search your local homestart organisation too, or ask the HV to refer you. You'll get one or two visits a week from a volunteer for a couple of hours so you can wash your hair, clean, go out to the park with an extra pair of hands or whatever is needed.

StarlightMcKenzie · 12/06/2013 10:15

And research portage. Your area may have a service and if so, ask them how to be referred, then get on with that too.

Lucyb88 · 12/06/2013 10:26

yeah she mentioned increased muscle tone, what does this mean? I mean what can it be causing his physical problems? anyone have any ideas, I mentioned dyspraxia to the consultant and he said that its not dyspraxia. thanks again everyone.

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armani · 12/06/2013 10:39

My dd has increased tone in her legs, is very clumsy, complains when walking etc and is being investigated for cerebral palsy or possible genetic neurological conditions, which sounds like what they are testing for in your son. The MRI usually indicates if there is any level of damage to the brain. I must stress I'm not a doctor so I could be wrong but it sounds very similar to the process my dd is going through.

The increased tone in your ds muscles could explain his rigid movements, although its not that his muscles are not formed properly rather the brain is not telling them to work properly if that makes any sense.
Did you have any complications during pregnancy or birth?

armani · 12/06/2013 10:46

My dd also has speech problems, mostly regarding her clarity. What problems does your ds have with his speech?

Lucyb88 · 12/06/2013 10:48

I had to have an emergency C-section as he wasn't getting enough oxygen and when they delivered him the cord was wrapped around his body squeezing him. He is constantly falling over (mainly hitting he's head) he has been up a and e countless times bc he has hurt himself badly. It wouldn't surprise me at all if he has damaged he's brain from the constant trauma to his head. I feel sorry for him as he wants to do what every kid is doing at hes age but he physically cant without a repercussion. Poor thing. How old is your dd? and does she have behavioural problems along with what she already has?

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Lucyb88 · 12/06/2013 10:51

He has a wide vocabulary but just cant pronounce them, all of his words tend to run into each other rather than him breaking between words. He struggles to maintain close friendships or play with his peers because his speech is a barrier.

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armani · 12/06/2013 10:55

If there is brain damage it is likely it was caused during pregnancy or delivery, or the first few months of life rather than from him falling over etc. the falls are most probably a result of the rigid movements, caused by the brain not communicating with the muscles properly.

My dd is 7 and yes she has behavioural problems. She is very hyperactive, always on the go, she literally doesn't stop from the minute she wakes until she sleeps. She is being investigated for adhd, as these disorders usually co exists alongside neurological issues. Is your son hyper? Into everything? Dd also gets very angry and frustrated and lashes out, hits etc.

armani · 12/06/2013 11:03

Sounds very similar to my dds speech. This could be because of the muscles in the face not being told to work properly by the brain, the same process as the muscles in the legs.

My dd has dx of phonological disorder, which means her speech sounds have not developed in a pattern as that of her peers were, they are developing disorderly.

Lucyb88 · 12/06/2013 11:10

ah bless her, sounds like your doing a good job with her, you should be proud! Yes he is very hyper, doesn't stop from morning until sleep and is into everything, I cant teach him things or talk to him about things for more than a couple of seconds because he loses concentration. He is very angry and becomes frustrated within seconds. He is also very OCD, he puts everything in his mouth, wont wear socks, has to have certain things his way or he gets angry. Did you say they were testing her for cerebral palsy?

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Lucyb88 · 12/06/2013 11:15

my son also used to have seizures, he would just drop on the floor and go out cold, he was seen about this and had an eeg and this showed nothing so he was dismissed, but the other day he had one again, a bit like an absence this time though, he hadn't had one for 1year before this. I'm going to mention this recent one to the consultant as I think it can be very relevant .

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armani · 12/06/2013 11:33

Yes definitely mention the seizures to the consultant as they are a sign aswel. Your ds sounds very similar to my dd she also puts everything in her mouth and refuses to wear socks or shoes! It takes me ages to put them on she screams and gets really distressed.

I have never met another child who presents so similarly to dd! I know how hard it can be, I have been pushed to the limit so many times.

Hubertthesausagedog · 12/06/2013 16:01

uim x

AgnesDiPesto · 12/06/2013 17:04

You can ask for a disabled child assessment and carers assessment from social services. I know how having a social worker sounds and some families do have a bad experience with social care but our worker has been great. Really understanding. We now get a sitter service some direct payments to hire a carer to give us a break and extra help in holidays. Contact a family have lots useful leaflets you can download about entitlements. Contact your local carer charity if you have one they can advise and often fill out DLA forms.

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