is there something wrong with my little boy??

Emily - posted on 04/01/2012 ( 6 moms have responded )

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please bear with me this may be a long one!! im concerned about my 20 month old son. he has so far been developementally late on most things. he never rolled, sat up at 10 months, started bum shuffling at 12 months refused to weight bear of any kind until 15 months and only started walking 2 weeks ago at over 19 months. he has seen a physio and been diagnosed with joint hypermobility syndrome and all his joints are very wobbly altho tbh it doesnt seem to affect him much apart from he falls quite alot and gets very tired as using his muscles alot. im not sure if these things are linked to the probs we are currently having...please read the following and let me know what do you think?

my son has alot of behaviours that on their own can be seen just as regular toddler behaviours but these behaviours are in the extreme and when put all together are pinging up a few red flags in my mind. anyway here goes...

CANT CONCENTRATE - isnt interested in puzzles, books t.v, or any toys except cars and trains and jumps from one activity to the next but never really seems to do anything. he has only just started showing an interest in feeding himself but most of the meal is spent in extreme tantrums as he cant get the food in quick enough but he wont let me help.

ALWAYS MOVING - very accident prone - has had fingers exrayed and head glued three times already. constantly climbing always running-not walking. runs in very tight circles all the time. alsways over excited. never sits still always fidgets squirming throwing himself around. when trying to hold him eg if he is sat on my lap he will throw his head backwards ive had 2 full on black eyes! if im holding him on my hip he throws himself backwards and i cant keep hold of him.

SLEEP DISTURBANCES - he is barricaded into his bed because he climbs and does somersaults when put in bed. because i have made it so he cant get out i just leave him to settle himself. it doesnt usually take more than 20 mins and no crying. while he is asleep he is very restless and wakes himself up by hitting walls etc 4 or 5 times a night i have to go into him.

EXCESSIVE CRYING - gets very worked up over nothing and has extreme tantrums-he bites himself and screams and throws himself around. im the only one who can calm him and its difficult i have to hold him very tight rock him and shush him. he is overly emotional and very angry alot of the time.

IMPULSIVENESS - he hits out alot but if u watch him its not because hes angry or not getting his way or 'to hurt anyone' its more like he cant control his arms. he constantly headbutts people in a hyper way. he makes very loud noises alot of the time its like babble but at the top of his lungs none of it makes any sense

SPEECH - delayed - only word is bye and only sound is choo choo. doesnt make any animal noises and only knows a few facial bodyparts to point to but usually gets them wrong several times before finding the right one.

OTHER NOTICEABLE TRAITS-i dont feel like he understands basic comands certainly doesnt understand 'no' its not just a matter of choosing not to understand i honestly feel like there is no connection to what im saying. his only way of making himself understood is pointing and grunting he makes no effort to verbalise. he has no response to any kind of discipline or punishment despite me starting at about 8 months and being very consistant - his sister has had the same discipline methods and understands her boundaries. he has absolutely no sense of danger and a very high pain threshold eg he will put his hand on the hot oven front and i will pull it away and say 'no hot' and he will immediately do it again and again and again despite me moving him away. he doesnt seem to feel it to the point where he has burnt himself and gone back for more. he doesnt respond to panic in my voice - doesnt even flicker or look at me. he also seems to have little idea of personal space and for instance will get right in his sisters face and screech or poke her.

(BREATHE)!!!



he has a sister 13 months older and she has no problems walked at 11 months and is normal in her speech etc and other milestones. my sons ears have been tested and are fine. this is really starting to bring me down as i have been asked by several people if he has adhd. a health visitor (not mine) but a friend of mine who has 2 teanagers with adhd and autism also thinks all the above are all red flags. my day to day life is very hard dealing with his behaviour i seem to just be a referee between my kids. as i said these are all toddler behaviours but they are very extreme and toddlers dont usually do all of this together! my worry is not so much that adhd is a possibility but more that if this is the problem then no doctor will be interested until he is 5 or 6 which means i have another 4 years dealing with this behaiour with no support. i dont honestly think autism is the issue he is bright as a button has good eye contact and alot of his behaviour comes across as naughty. alot of my friends see bits of these behaviours and laugh because it looks funny or cute and cheeky but tbh i just dont find it funny because i see it a hundred times a day and every time i see it there is something niggling in the back of my mind that something isnt right i just cant quite put my finger on what it is. please let m know what your thoughts are thank you

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Iridescent - posted on 04/01/2012

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Also, since he already has a diagnosis of Joint Hypermobility, have you seen an orthopedic doctor to set up what type of splints/supports and any assistive devices he could be using? I have this as well, but not as bad as it sounds like your son. Many people with it do require ankle supports, hip, knee, sometimes walkers just to help build muscle strength, specific exercises taught by PT to reduce straining/prevent dislocation of the loose joints.

Iridescent - posted on 04/01/2012

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You can always request a referral to Neurology and an evaluation for Ehlers-Danlos Syndrome with Joint Hypermobility. Ask when you set the appointment up for it specifically though. It does tend to go with other delays throughout the entire body. The cause is often genetic, but not always, and there are a few ways the different types are inherited. Other than that, keep working with him.

Rachel - posted on 04/01/2012

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I have read what you say and i would deffinately have him seen by a speech therapist for starters. and also maybe an occupational therapist. keep talking to him. never stop that. I currently have a 22 month old little girl she was not behind on anything except her speech she was actually advanced on most things just cant talk. My sister has a little boy who has been behind in just about everything and he has a nurse and a physical therapist and he also is in speech therapy. What you have said about your son may be signs of autism i would keep watching him and have him tested just keep trying to talk to him. I work with people with disabilities and we have to take extra precautions to make sure they are always safe do not let them near fire or even the oven or stove. also things that you would not think are dangerous may be for them. start looking up autism and activities that you can do to interact with him and keep him busy. he sounds like a very interesting little boy. also if your doctor does not want to do anything until he is 6 you need to find a new doctor because the early children are diagnosed the better off they are. Good luck i hope this helped, Just take it one day at a time and try to stay calm with him. it really is not his fault he has a disability which is hard to hear about your child. Another thing you need to stop doing is do not compare him to your other children he is an individual and may not hit the same milestones at the same time. this was hard for me to learn with my son who is now 5 and my little girl who is 2. she did everything so soon and i just could not understand why she would not talk not a word until she was atleast 18 months old and it would stress me out because she would get frustrated and could not communicate. good luck with your little boy and keep looking for ways to help him. if he is into cars and trains make sure he always has cars and different trains or rotate some of them to keep them new. good luck

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Iridescent - posted on 04/01/2012

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That is terrible! I am sorry you're struggling with doctors, but am familiar with it.



The problem if it is joint hyperflexibility is it causes two separate things. 1 - it makes it harder to do things, like walk, because the joints slip and slide over each other. The leg bone doesn't really stay right on the ankle/foot like it's supposed to, so it rolls a lot. This can happen in any joint, and because of it high impact activities (running, jumping) are discouraged and low impact activities (walking, stretching, swimming) are encouraged to prevent further damage. 2 - the muscles are so lax naturally that they don't hold a joint in place, but having it slip out of place or roll, stretch, etc, causes it to stretch even further and build up scar tissue within the muscle and joint. So if it's severe, modifications like Lateral Ankle Supports, or even MAFO's, are used to allow movement and prevent over-movement, preventing accidental further damage. I fall almost daily, just walking. Stairs - I fall almost every time I'm on a staircase. Not because I'm not paying attention or being careful! Simply because my joints do not hold me up. I use ACE wraps a lot but that's really not acceptable or safe long-term for this problem. This is why I'd suggest finding a doctor familiar with this specific disorder - to prevent long term damage that can't be reversed.

Emily - posted on 04/01/2012

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Ps we r also having doc probs. Our gp wasnt interested in mobility probs said hed walk in his own time. Our hv referred us to a paed doc who was great. She referred us on to a physio and also a dietician as he was very sicky and had reflux and explosive nappies. He is being tested for wheat allergies. After this we slipped thru the net. The paed doc said he would be seen again in 6 months but ive had no appointment thru so i phoned up and asked to speak to dr soandso that we saw last time only to be told we didnt see the doc that the apppointment was meant to be with we had seen a temp as the one we were meant to see had been off sick. I said ok well regardless who we saw i needed another appointment and they said the full time paed was on long term sick and their dept was being staffed by several loocum paeds and they wrre so busy and backlogged they had no spare appointments. Apparently they can do nothing more. This appointment that im trying to book would be the one tgat i was going to bring up these behavioural issues but i cant seem to get an appointment! Anyway hv is coming nect week to do another developemental check so will chat to her she will see what he is like anyway!

Emily - posted on 04/01/2012

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Hi iridescent the physio said that there were no specific excercises to do with him as long as we keep him active soft play that sort of thing because thry will all increase his stability and muscle tone. They also said he doesnt need any supports and to give him light shoes so if his ankles do roll over they wont break lije they would in sturdy boot type ones. Tbh now hes finally on his feet he seems,to be coping ok with it. The physio described it as he would feel like someone who was walking on icesketes for the first time and thats how unsteady he,would feel and thats y it took him so long to walk because if u could bum shuffle as fast as he could....y wobble around on feet! I have never heard of ehlers-danlos syndrome will have to c what that is all about. Thank you!

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