3 year old developmental regression

[Lucyb88]

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?
Thank you.

[NeoMaxiZoomDweebie]

Did the HV refer you to a pediatrician? DId they plan to do any assesments in addition to MRI and bloods? I think I would push for that OP...mainly because of the social and motor skills issues. What you mention points to perhaps an ASD ...an autism spectrum disorder but of course I am in no position to diagnose....which is why you need an assesment done. Have you any help at home at all?

Once you get an assesment done then you should get some support

[Lucyb88]

hello, thank you for replying,
yes the health visitor referred me to the paediatrician, 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. No 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.

[NeoMaxiZoomDweebie]

Good God you sound like you've had no help at all really...you must post this in SN....Mumsnet will move it for you if you report your own post...it's a hard enough experience when your child has problems without being left to cope alone. I do hope you manage to sort things out but I know that the sN board will be full of advice...they're a fantastic bunch their and will know all about DLA too.

[Lucyb88]

We get the results from all the tests on Friday, do you think they may be able to diagnose him then? I am so worried incase it is something really bad that will only get worse, he becomes very frustrated over nothing sometimes and its upsetting to see him like this.

[Lucyb88]

Thank you so much for all your help.
How do I do that? sorry I am new to this only joined yesterday.

[mummytime]

I would think you are a prime candidate for Home Start. Do start to ask for help, you really are just the kind of person who needs it. Your local FE college might be able to help too if they run Child care courses, just having another adult around at times could be a huge help. Do go back and talk to your HV to see if she can suggest any further sources of help locally.

One of the big benefits of a diagnosis is that at least it will give you a name to google and seek information, advice and support from others who know what it is like for you.

To get this moved click the word report in one of your messages (preferably the first one) and type in the box that comes up that you would like it moved to the Special needs boards, the wise mums there will be able to give you a lot of help and advice.

[NeoMaxiZoomDweebie]

click this link and you will be on the special needs board...post again....can you copy and paste your original message?

[Lucyb88]

thank you so much xx

[Lucyb88]

so I had the results today which showed his MRI and his bloods are normal, but the consultant seemed very concerned and said some of the bloods hadn't come back yet, which were the ones he was hoping for. He said the bloods that were left to come back were to see if my son has Metabolic Storage disorder, because he has most symptoms and some of his characteristics are similar. I didn't know what this was as the doctor would not go into detail, so I ended up googling it like you do and now I have scared myself to death because I have now realised that it could be something life threatening.

[pleiadianpony]

Hi Lucyb88. Yes you can get DLA without a diagnosis.

I am not sure where you live but local schools for children with special needs may be able to point you in the direction of playgroups and organisations that can give you support. Voluntary Sector/charities. I wish you all the best and hope you can get some answers and solutions soon. Best support you can get will be meeting other families who are going through similar challenges.

I am so sorry that you are facing this. I can't imagine how hard that must be. Take care. xx

[NeoMaxiZoomDweebie]

Lucy I am so sorry you're having to go through this worry. There is a thread..or was...on the Special Needs board which is for support in people going through similar investigations.

I will see if I can find it and link.xxx

[Lucyb88]

ok thank you. the main thing the consultant is worried about is Hunter syndrome and I know just how serious this is.
I dont know how to feel about this, you just turn numb. Everyone says it will be fine and just carry on as normal but this isn't a normal situation, the reality is facing the fact our 3 year old little bot may have a life limiting disease

[NeoMaxiZoomDweebie]

Lucy I am going to send you a private message.

[NeoMaxiZoomDweebie]

Iv'e sent it now...have a look at the top of the screen for a red envelope...if yo cant see it let me knowxx

[Lucyb88]

thank you so much x