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Where do i go now??? UPDATE

Hi all,

I haven't posted on here for a long long time & i know i should as when i had my first concerns i found the advice i got on here was really supportive. Well i think the last time i posted on here my lil girl was about 1 & she was showing no signs of bearing weight, crawling, moving! We got referred to the Physio & the Paed 6 months ago & we have been getting little to no help tbh. On the appt 6 months ago they said she had GDD & Hypermobility & would check her in 6 months,
She crawled at 15 months, got her first tooth at 16 months & is now pulling up at 20 closer to walking at all but at least she is finally bearing weight. She has bilateral talipes also & her ankles just roll right over when she stands up (look awful but doesn't hurt her!!!) We have peidros but i find them hard to put on her & she also finds it hard to pull up to standing in them!
We had another appt last week...and lo & nehold what did they say!????lets wait another 6 months!!! WHAT!! i am there any advice you girls can give me or is waiting the best thing??

Lucy x x

[Modified by: lucyloo on 07 October 2010 09:40:55 ]


  • Hi Lucy, It's so frustrating but I really dont think they will do anything other than wait and see at the moment, Isaac is 3 1/2 now, he was initially referred tot he paed when he was 17 months old as he wasnt walking, he didnt crawl till he was 1, we are still being fobbed off and taking the wait and see approach, to be honest I dont really think alot will get done before he starts school, he is seeing an occupational therapist who has been a real help, also had input from a speech and language therapist and early support teacher, as yet we are still awaiting a diagnosis and Autism and aspergers have not been ruled out, he has also got hypermobile joints and low muscle tone, poor core stability and sensory processing problems. I find it really annoying that he has all the traits for things like aspergers but they will not diagnose him due to his age.

    Sorry if I cant be much help but I really dont think they will do a lot else at this stage. xxxxxxx
  • hi there
    i would let you know that my daughter has the same problems as the ones mentioned in your reply and has hypermobility she didnt walk (toddle) until 25 months and also was very late in getting her first tooth around 20 months, im still waiting for a diagnosis and help shes 7 years old nearly now i really hope you manage to the help you need i would strongly recommend you fight as much as you can for it. i wish you and your child lots of luck hun

    Lucy x
  • Hiya,
    Thanks so much for your replies. I feel like i have hit a brick wall at the moment & i still feel as though no one is listening to me & this has now been going on for a year...god forbid it goes on for another year, but by the looks of things it prob will.
    Hayley, how early did you see ASD traits in your son? I don't that is what is wrong with Emily, but i do not want to rule anything out at this stage!
    Lucy, your daughter sounds very very like my little girl. the late development, late teeth etc! does your girl have problems now? & what is being done/what has been done.

    Thanks for your help
    Lucy x
  • Lucy, if I'm honest I noticed odd little things when he was very young, he was a very discontent baby, he didnt like being held or put down, he hated his pram or being in the car and didnt like being in a sling either, he used to avoid eye contact, for example when I fed him, all my others when they were babies used to gaze up and look at me, but Isaac used to turn his eyes to avoid my gaze. As he got older it became more obvious to me that something wasnt quite right, he doesnt really play with toys, is obsessive about watching the same episode of mickey mouse over and over, he flaps his hands, runs on tiptoes and hums, he has the most explosive tantrums I have ever seen and he also shutsdown, this is where he becomes unresponsive to anything around him and just stares straight ahead.

    We have finally seen an occupational therapist with him and she is really on the ball, much more so than anyone else we have seen, she said she could immediately see that he has sensory processing problems (amongs other things) and has arranged for equipment at home to help him, like a major buggy, hand rail, special chair(breezi chair) and other stuff and given us loads of strategies on how to help him, has you little girl seen an OT yet, it might be worth asking for a referral now as the waiting lists can be huge, I think round here the waiting list is about 9 months although we were luck as Isaac was referred as urgent so we only had to wait 4 months.

    Hope that helps a bit xxxx
  • hi Lucy Yes my daughter still has problems on almost all aspects including learning difficulties and social communication/speech etc she has ocd/asd also traits of aspergers and sounds terrible but not the end of the world shes a happy girl and leads quite a "normal" life. My daughter has global developmental delays and so many other difficulties they are unable to give just one single diagnosis and it does sound like you could be in much the same boat, dont give up perserverence is the key
    best wishes
    lucy x
  • i would also like to add too the other reply you are getting....yes OT would be agood step forward they are very good and would help you tremendously x
  • Do you know if you could access regular physio like community physio in your area rather than the 6 month appts? My little boy is almost 3 and showed signs of floppiness from birth so luckily the ball was rolling for us quite early on, we see community physio who has come to the house every 4-6 weeks since he was about 13 weeks old, Occupational therapy who visit regularly and are always available over the phone when needed, wheelchair services etc. We have 6 monthly appts with a neurologist as we do not yet have a specific diagnosis but do get lots and lots of support. I find it so upsetting to see that things can be so different from area to area.

    My little boy had peidro boots and before he could stand they were very heavy but she will get used to them, our physio gave us a standing frame, which was very hard to get him into but once in it did help him to take weight through his legs while wearing his boots. Might be worth asking about. Paul started to take steps at about 21/22 months but he is almost 3 and still has significant mobility issues, mostly with posture and fatigue.

    I would say fight as hard as you can and don't let anyone fob you off, you need the extra help and it is out there it is just rarely offered you have to search it out for yourself.

    good luck hope you are able to move things on
  • HI,
    Again all of your help has been great & have given me a few good pointers. 30S I sometimes feel as though they don't class Emily as much of a priority...they have said that they are happy with her devolpment (ish) as she is actually devoloping the right way just late!! look, i am not a dr but i just think for a 21 month old not bearing weight often as being very very wrong & wish they would stop stalling for yet another 6 months!! I know my daughter & swear she will not be walking by the time she is 26 months!! & then they'll start intervening more!! Why not now GRRRRRR makes me so blooming mad!
    I am going to phone the Health Visitor tomorrow & also make an appt at the drs, physio & Paed. I want to know what they can do!! no more mrs nice Lucy!!!
    Thanks Girls, i'll let you know how my 'arguments' get on image)
    x x
  • you're doing the irght thing, the normal range for walking is 12=18 months so 21 months isn't bad for walking but bearing weight is quite a bit further behind so in my opinion, and I'm no dr, she should be getting a little more attention.

    We attend a charity group where the community physios go, its called Wirral resource centre and toy library its on the net, if there was something like this in your area it'd be great, the gp should be able to tell you if there are any support groups too.

    hope you get a bit further soon x x x
  • Hi, well i finally feel like i am getting somewhere now. I went to the dr's & demanded to be referred to another Paed. He was really understanding & said that waiting for 6 months was too long. He then said he would give me a buzz as he knows all the paeds are now so blooming specialised that he would look to see if there were anyone speciaising in Emilys problems.
    He gave me a buzz & we now have an appt at the RVI in Newcastle next month to see a specialist. I am so happy image Also we have appts next week to get some more Peidros as i find it difficult to put the ones with laces on her feet & also have speech therapy!!!
    Just shows that if you pipe up & fight for will get it.
    Does anyone on here know anything about Ehlers Danlos syndrome. I am still convinced this is what Emily has....I haven't mentioned it to the Paed but will to the new Paed. Everyone (apart from my mum) says that she doesn't have a ''syndrome'' but i am convinced!! well you know what they know your child.....

    Lucy x x

    [Modified by: lucyloo on October 07, 2010 09:50 AM]

  • Sounds great I'm sure things will speed along a bit better now, apologies for my ignorance but what's your abbreviation RVI? I know Paul has had bloods and muscle sent to a specialist hospiotsl in Newcastle so wonder whether it may be the same.
  •'s the Royal Victoria Infirnary in Newcastle. Really great hospital so i am hoping they have a few more answers. They may not be able to do anything more at the moment but there's no harm in my putting my hopes up ay image
  • Hope keeps you going anyway, I should know Paul is almost 3 and still no definitive diagnosis, and I'm being investigated too, I think our Neurologists are in competition to get the amswer first haha

    its probably the same hospital I think they have the funding to specialise in testing for neuromuscular conditions.

    I had a look at the condition you mentioned, every time I check the symptoms for new conditions I hear about I can slot us both right into each one, but over the last few years I have realised that there are so may conditions that have similar traits it is very difficult to pinpoint any one, I understand why it takes so long to get a diagnosis, there are so many differect conditions to check off the list

    just as an example a few of the signs/symptoms my son and I show are:

    Very poor muscle tone from birth
    Delayed milestones
    Hypermobile joints
    Poor head controll
    Myopathis face
    Bylateral ptosis (drooping eyelids)
    High arched palete
    Silent aspiration of thin fluids (Thick and Easy prescribed)
    Nasal regurgitaion of foods
    Poor swallow
    Unable to fully close eyes when sleeping
    Paul has very elastic skin although I don't
    Bowel/digestive problems (treated with Movocol)
    Absent reflexes (mine are now only absent deep tendon reflexes)

    oh the list goes on this is probably about half of it but even this list could fit into so many of the conditions I have found online, I've stopped looking it stresses me out. Sometimes I wish I had pointed a few out to the Dr though, but never did, always just went in blank, so I think it is really good that you are going to tell the Paed what you think, it gives them a better idea I think about the day to day things that you deal with, which can help them build a better picture

    good luck with it all anyway and keep us updated

  • Good Morning,

    Well i pretty much have had a sleepless weekend following our terrible Friday!!!
    I went to see orthotics about her boots on Friday & our physio was there also. Emily hates it when people are fussing over her feet, so she kind of went all upset and started grabbing at me & standing up all the time...well this must be one of the only times that our physio has seen her stand up (i know....he's C%&p) well after him and the orthotist saw how badly her ankles roll they have now got us an URGENT appt to see the orthotic specialist!!! as its the worst case they have ever seen! WHAT!!
    She is now 21 months old & they are thinking now she should be in AFO's...i am soooo mad that they are only doing this now....WHAT if she hadn't stood up at the appointment, would we have been waiting another 6 months!! I am so upset as this is not what i expected for my little girl!
    Does anyone else little ones wear AFO's?

    L x
  • Aww that's awful, its terrible when your word isn't enough. I don't know what AFO's are I'm afraid but I'm sure you'll find some info in them if you do a search.

    Much love x x x
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