Active discussions

Please or to access all these features

Talk
SN children

Here are some suggested organisations that offer expert advice on special needs.

Original poster

nearly 4 year old with physical disability ... no diagnosis... struggling

33 replies

ditziness · 17/02/2013 20:56

DS is nearly four and has had difficulty with his mobility his whole little life. Getting more and more obvious that it's something that isn't going away. He walks as if he is drunk and falls over a lot. Like twenty times a day. He's covered in cuts and bruises. He can't walk very far, has no stamina. He's starting to become aware that he can't keep up with other kids his age. He's upset about it.

I'm struggling to cope. Don't know how to be. Sometimes he falls over i feel so sad for him and cuddle him and comfort him. Other times I feel frustrated and don't want to mollycoddle him just tell him to get up and carry on. Sometimes I feel so sad he can't keep up, sometimes I feel so jealous of other mothers whose kids are zooming about on scooters and running everywhere. Sometimes I hate having to carry him all the time, take the buggy everywhere. Sometimes I don't know what to say/do. I'm so scared for the future.

All tests so far are negative. only diagnosis "unknown muscle disorder"

OP posts:
Ineedmorepatience · 17/02/2013 21:01

Bless him ditzi that sounds really difficult.

Does he have physio?

Original poster
ditziness · 17/02/2013 21:13

he does, although it's not been very constant the last six months due to upheavals in our lives.

OP posts:
PolterGoose · 17/02/2013 21:29

This reply has been deleted

Message withdrawn at poster's request.

survivingwinter · 17/02/2013 21:35

How frustrating to have no dx Sad

Glad he's getting physio - are you working on balance/strengthening etc?

I can empathise as my 5y dd has mobility difficulties - she has very mild cerebral palsy and walks a bit squiffy and can't keep up with her peers etc. Her issues are mainly caused by low muscle tone and hypermobility.

Do you have any more tests they could do that might reveal cause?

bigbluebus · 17/02/2013 22:06

Have they tested for and ruled out Muscular Dystrophy? There are many different types of MD - the falling over a lot would fit with this - not sure about "walking as if he's drunk" though.

bookcase · 17/02/2013 22:37

Do you have a Genetics doctor? They should really keep going until they get answers. Have you heard of the DDD study? Here's a link to more info www.ddduk.org/ It might be worth asking genetics for a referral to the study or you can contact the study with your sons details and ask to join?

My DD2 is 3 and half and isn't walking yet and has other issues. We only recently got her diagnosis so I know how hard things can be. We've got her a wheelchair now because she doesn't like being in a pram, maybe wheelchair services could help you out with a lightweight chair to make it easier on you.

I would also recommend (if you're on Facebook) join the SWAN group - it stands for syndrome without a name and is a closed group for families with undiagnosed kids run by Genetic Alliance. There's always someone on there with similar experiences and great advice.

weegiemum · 17/02/2013 22:45

That's really hard. When my dd2 was 3 she started limping and for months I was nagging her not to be so silly - until she started having pain, dh took her to casualty one Saturday as she was crying and it turned out she had a serious degenerative hip condition that's taken 5 years to resolve (she's got a scan in 3 weeks to confirm it's better!). I had to take her everywhere in a buggy and later in a Maclaren Major as she outgrew the normal buggy. She spent 3 years at school in a wheelchair.
Dealing with a disability with young dc at school is hard. My dd was known at school as Rachel-in-the-wheelchair which really upset her.
I hope you can get a diagnosis soon - I found knowing what was wrong made a massive difference - I knew what would help, how I could make it easier etc...

Original poster
ditziness · 18/02/2013 07:58

I'm really glad I started this thread. Been reading about SWAN and DDdUK and it's helped to read of others in the same position.

No diagnosis, no blue badge, no nothing. Not really sure what to do. Got apaedetrician, physio, neurologist, geneticist and so far nothing conclusive. Apparently they've tested for cerebal palsy and muscular distrophy, but both negative. Along with ataxic conditions.

More wondering how tone with him.

OP posts:
Original poster
ditziness · 18/02/2013 08:05

How to be with him rather. Find myself getting annoyed and cringing when he falllls over. Not good

OP posts:
Original poster
ditziness · 18/02/2013 08:42

It's just so constant.
I feel so selfish sometimes.

OP posts:
PolterGoose · 18/02/2013 10:12

This reply has been deleted

Message withdrawn at poster's request.

Original poster
ditziness · 18/02/2013 10:56

Thank you! Not quite sure though how getting DLA will help though. As the problem isn't financial, it's emotional and practical and a problem for DS. At the moment we are trying to treat him as normally as possible and not make a big deal of it. Bar sympathy and empathy that his falls must hurt and be frustrating and annoying. Don't want to make him
More disabled than he is

OP posts:
Original poster
ditziness · 18/02/2013 11:10

Just don't know what to do. Fight for a diagnosis and make that the focus? Or concentrate on accepting and helping him be who he is?

OP posts:
thereonthestair · 18/02/2013 13:39

I would say apply for DLA anyway. If you get it then you can use some of the money to help with the emotional and practical. Go prvate for tests, pay for help with physio, around the house, buy a trike, buy an ipad to keep ds entertained when he can't walk around. MY Ds has cerebral palsy. we don't need the money but since we have had it we spend it all, just on making the rest of life a bit easier,

Original poster
ditziness · 18/02/2013 13:44

So how would I apply for DLA?

OP posts:
thereonthestair · 18/02/2013 13:53

Phone up and ask for the forms.

Look at the Cerebra guide on line. i am rubbish at links but someone will link it for you.

take it slowly one step at a time. personally I didn't mind it, and it didn't take me too long, but I had a diagnosis and am a lawyer. However many people find it hard and if you do go to CAB or get advice from a health visitor if you have one. Expect it to take time. Expect it to be depressing. Fill it in on the worst day you have (but always remember you are telling the story of the bad day and not all days are like that. Put details in of everytime DS falls over, everytime you put him in a buggy, everytime ha can't do what you want) Copy all of the medical reports you have had, all the physio and ot exercises you have, everyhting you can think of

post lots of questions on here everytime you get stuck and aren't sure what to say - we will helpSmile

PolterGoose · 18/02/2013 14:18

This reply has been deleted

Message withdrawn at poster's request.

survivingwinter · 18/02/2013 14:50

I get what you're saying. If this condition is for the long term it's only natural to have to go through a hard period of acceptance that he's different. That's really tough to come to terms with and you're not being selfish.

It's hard to watch our kids falling over and struggling with what other kids take for granted. Finding things he can do without struggling that will help his confidence and mobility improve are key and as others have said - that's what the DLA can be useful for.

My dd goes riding - great therapy and something that children with mobility issues can really enjoy and potentially excel at!

Original poster
ditziness · 18/02/2013 15:24

I would like to get a car and get him music lessons

OP posts:
PolterGoose · 18/02/2013 15:55

This reply has been deleted

Message withdrawn at poster's request.

Original poster
ditziness · 18/02/2013 17:41

thank you.

OP posts:
babiki · 18/02/2013 19:23

Ditziness if you get mobility component of DLA you can get a car via the motability scheme. Have a look at Family Fund, they would probably fund music lessons. There are many things you can pay for with the extra money, such as Hydrotherapy, Bobath therapy, special needs gum classes... I have also a little undiagnosed boy, he walks now though. The anger and grieving is totally normal xx

Original poster
ditziness · 18/02/2013 21:08

I do feel so angry sometimes. The thing that pisses me off is that I seem to direct it at him. At my little living 3 year boy who has to cope with all this crap. And his mummy getting angry too! I hate myself.

But then when he falls over something on the floor for the tenth time when I keep telling him not to throw his toys all over the floor, and to look where he's going. Or he falls on his baby sister, when he knows not to run close to her. Or when he runs off and won't stop and then falls over 200 meters away and lies screaming for me. Or demands I take his bike out within, and then won't ride it because he falls off it too much, so I have to carry it and his sister and him home. Aaagh

OP posts:
samira837 · 19/02/2013 11:12

Hi have u lookt at gluten 1 transport defect?!! It's a really rare genetics disorder my DS2 have just been dx with this is balance is bad did have fits Ect. Just rund 300 kids dx with this as many dr don't look for this plz look it up online Let me know thx

buildingmycorestrength · 19/02/2013 13:52

Bless you, it sounds very hard. Sad

I wonder if some of it is about adjusting your expectations and learning what is reasonable to ask of him? 3 is a VERY HARD AGE! I found a parenting class so helpful for dealing with some discipline issues which were driving me actually mad. I think it sounds even more important for you all to have some support because of his additional needs.

I am absolutely not saying that you are doing anything wrong, though.