Very concerned about my four year old

(29 Posts)
MissingTheMissletoe Mon 21-Dec-15 18:03:29

Hi there, wasn't very sure where else to get advice from. To cut a long story short, my son was diagnosed with symptoms of hypermobility in his legs octoberish time last year as he was always refusing to walk, even as far as the toilet, saying his legs were sore and wanted carried everywhere etc. The physiotherapist said he was bendier than average but only in his legs and an instep in his shoes seem to have helped with the pain. His movements have always been a bit jerky (if that makes sense? Not just in his legs either) but we put it down to the hypermobility.

He has also always had issues with making eye contact, his speech is under developed so although he can speak he either speaks in a really tiny voice and in broken sentences, or in a very loud voice but his speech is very unclear. The speech therapist said that it'll just be because my eldest talks so much that he never used to get a word in edgewise but it's still not sorted itself out now that she is told not to speak for him and she has to wait her turn to speak etc.

He doesn't really play with toys, prefers to sit and watch tv even though he's limited to two hours broken up over the day (was necessary to enforce a time limit as he would sit all day if he could). He frequently looks lost and listless and sad, the doctor said that was most likely just a phase he is going through but he has been like this for a couple years now (He used to be such a smiley happy wee boy!) He does still laugh and seem happy if I interact with him (which I do frequently) but for the most part he just looks lost and listless if left on his own.

He is constantly hungry, I swear he has hollow legs. Doctor said he just takes this after his dad though, fast metabolism and it doesn't really worry me, just adding it in case it is relevant. He has never settled into nursery, still forces himself to throw up to try get out of going. HE was originally in a large nursery but at the start of this school year we moved home and there was a smaller nursery closer which is linked to the primary school he will go to next year. He doesn't make friends, prefers to sit by himself or play by himself (though he does like playing with his older sister and me). He is a very quiet boy who is isolating himself from everyone apart from me and his sister.

And most recently, what has been worrying me the most has been that although he has been using the toilet on his own since he was three with no accidents or problems and has been dry through the night since he was three too he has suddenly started wetting the bed at night, wetting himself several times throughout the day even with constant reminders to go to the toilet and for some reason has started pooping in his bedroom (not in his underwear, actually pulling down his pants and trousers and pooping on his bed or down next to it. I thought it was the cat until I caught him in the act).

He also licks everything, from the insides of public bins to other children to the grass. I've shown him child friendly videos of germs and bacteria and what it can do to him an dhow it makes him sick but that just seemed to encourage him.

I've tried very hard to not make a big deal of things, tell him it's ok and not to worry etc but that seemed to have had no effect on him so I tried to tell him off for it but he just cries and runs away as soon as he thinks you're not happy with him. He's a very sensitive boy emotionally, cares very deeply if I am happy or not etc and the same with his sister, even cares about the cat a lot, but doesn't care about anyone else, not even someone he would call a friend.

He hates loud noises, is terrified of basic things like hair driers or the washing machine, hoover etc, right to the point where he will stand with his hands over his ears crying. The doctor also said that this was normal but I have never seen another child react like that at his age.

I'm sure there's other things that I am forgetting but I can't think straight right now. I'm just very worried about him and don't know what to do or where to go for advice. All I seem to get told by the doctor etc is that it is normal but it is seriously impairing his life and I know you shouldn't compare a child to other children but he really isn't like any other child I know of both in his social functions and developement.

Hoping that someone is going to come along and tell me that I'm being overly dramatic and finding problems where there is none though! Sorry for such a long post.

Hurr1cane Mon 21-Dec-15 18:09:24

Could he have sensory processing disorder? With all the licking things and not liking nursery (maybe the noise?) the hating loud noises. An occupational therapist could tell you that.

Also get him re referred to Speech therapy.

Hurr1cane Mon 21-Dec-15 18:09:53

The wetting and pooing could also be a sensory thing

Luxyelectro Mon 21-Dec-15 18:12:06

Any regression of skills needs a referral asap.
If he was reliably toilet trained and now isn't and it's a constant thing rather than a one off - then I would be sitting and shouting.

Trust your instinct. Don't be afraid to demand some help. I don't think you are being dramatic. I very much hope your son is fine but there are some horrible progressive diseases that are very very rare

Again. Trust your instinct

Hurr1cane Mon 21-Dec-15 18:15:21

Ok. I was hoping that ^ wouldn't come up yet but I'm going to inbox you now OP.

Hurr1cane Mon 21-Dec-15 18:15:50

(Not saying anything bad, Luxy is 100% right but really try not to panic)

MissingTheMissletoe Mon 21-Dec-15 18:19:23

He is very strange with sensory things, he likes to touch things and feel things but at the same time hates it with a passion if anyone but me or his sister touches him. He likes 'soft' noises but can't stand loud noises, he loves to taste and smell different things and is happiest when he's able to do that.

I was going to make another appointment with the doctor about the wetting and pooping etc but was worried that I was just going to be fobbed off with the 'it's just a phase' excuse again when I know my son, he used to hate it if he had an accident when he was first toilet training, couldn't stand the feeling of it on him but now he rarely tells me if he's wet himself and just sits in it even though his drawers are low enough that he can go into them and get changed by himself.

I've felt for a while that there was something not quite right but never really able to pinpoint what it is.

Hurr1cane Mon 21-Dec-15 18:21:10

Argh I can't work out how to PM on my phone. My DS had a severe regression of skills age 4, toiletting, walking, speech and fine motor skills.

He was referred for an emergency MRI scan on his brain.

5 years and many many many tests later we are still none the wiser to his diagnosis, although we do know that he can't metabolise fatty acids so has very long chain fatty acids and they're making little holes in his brain. He comes on, then regresses, but is steadily going backwards very very slowly. The condition has also caused him to develope a typical autism and sensory processing disorder. He has high arches and needs the insoles, he also now has seizures, reynauds, a heart condition, problems digesting food...

It may be that he isn't 'regressing' and he is just doing those things for sensory feedback, or doing them because he's really really anxious. Which is why I asked about SPD first.

The likely hood of it being a progressive disease like DSs is very very very rare.

If you're really worried I would recommend getting in touch with SWAN UK (I think they're shut for Christmas now) as they deal with undiagnosed children and support you through diagnosis.

livvylongpants Mon 21-Dec-15 18:21:15

If he's under 5 could you try your health visitor? Mines been a godsend whilst we are having issues with DS's development (autism)

Try giving her a call. write down all the information so you don;t get flustered and forget anything

Hurr1cane Mon 21-Dec-15 18:22:23

It could also be that he has regressive autism, which isn't as scary as what I've just said. So look into regressive autism, and sensory processing disorder, before you worry yourself x

BlueSmarties76 Mon 21-Dec-15 18:28:42

His problems sound complex, what doctors are you under the care of? Just a Paed?

So:
Eye contact and speech problems
Does not seek out human contact or friendship
Does not seek out toys to play with
sensory problems with the licking and sound
Eating lots, could that be sensory??
Anxiety / other psychological problems as he is vomiting deliberately to avoid nursery and deliberately pooing where he shouldn't.
Hypermobility

Has he been screened for Autism? I think several of those problems are common in Autism? Equally, it does sound like a lot of those problems could be some sort of other medical problem.

Tell us what things your doctors have investigated and ruled out?

MissingTheMissletoe Mon 21-Dec-15 18:32:25

Thank you smile I looked into the sensory disorder one and the symptoms of that sound a bit similar to what is going on with him just now, not sure about the rest of it though. Can't remember if I mentioned in my OP or not that he also lives more in a fantasy world than in reality half the time. He can tell me at length the adventures he's had with various disney characters (currently ariel and Flynn from tangled though it changes often) on his way home from nursery but isn't able to tell me what he has done at nursery, there's times when it feels like his fantasies are more real than reality to him. But aside from the house and nursery move a few months back there's been no big upheaval in his life, he likes his routine and gets upset if it's changed without notice and this was going on before we even moved house/nursery.

Think seeing the doctor again is our best bet, the health visitor isn't involved again, not even sure of who she is lol.

Moomazoo Mon 21-Dec-15 18:35:17

I've got one with severe sensory issues !
Speak to SALT about sensory processing disorder!

Hurr1cane Mon 21-Dec-15 18:35:35

Can be distinguish between fantasy and reality though?

Hurr1cane Mon 21-Dec-15 18:35:40

He**

Hurr1cane Mon 21-Dec-15 18:37:18

When you see the GP. Take the list that blue wrote, and add about inflexibility of thought (upset by small routine changes) and the fantasy world and ask for a referral to a paediatrician

MissingTheMissletoe Mon 21-Dec-15 18:39:58

I'm not sure @Hurr1cane as when I ask him what he's done that day and he tells me about his fantasies and I have to tell him that was just in his imagination he gets a bit confused and tries to repeat it when I ask him what he has done again. Currently he's super excited about ariels birthday party he says he's invited to (I checked with his teacher, there's no child by that name there or one that has a party coming up) so I'm not sure if it's something he's imagined or maybe seen on tv (he does watch the disney channel but mostly jake and the neverland pirates or princess sophia).

Hurr1cane Mon 21-Dec-15 18:42:30

It doesn't sound like he can then. Which is a sign of autism. Some think that autism means no imagination, but it doesn't necessarily, it can mean a massive imagination but, especially when younger, a difficulty in separating fantasy and reality.

It sounds like he is able to talk to you and tell you things though which is good.

Does he generally understand and answer? Or could it be that he's not understanding the question and is just making something up to keep you happy?

MissingTheMissletoe Mon 21-Dec-15 18:48:04

Sorry @Blue, just seen your post. He's just seen the regular gp at our practice, he did see a physiotherapist a few times when they were diagnosing hypermobility but he didn't continue with that as she said other than the insteps there was nothing she could do for him and that he would grow out of it.

The doctors haven't investgated anything apart from the hypermobility and that was because they could see he was in a lot of pain when moving. They've not investigated autism, but two of his uncles have autism and they were a lot different from my son (although as far as I understand it it's not the same for everyone?)

Basically I've only really been told that different things are just phases, except in the case of his legs and speech (which has come on a bit since he's had the chance to talk for himself instead of my dd answering for him or me just letting him have what he wanted when he was pointing and crying).

It's not that he's anxious about going to nursery, it's more that he doesn't like me not staying with him while he is there. Once he gets in and away from me and has calmed down with his screaming and crying he is alright, but it's the journey there and actually having to leave me that is causing him to get so upset. His dad also has a fast metabolism, and my daughter does too so I've always just put it down to something they all share, and the doctor didn't think it was an issue at all as he is healthy in that respect.

MissingTheMissletoe Mon 21-Dec-15 18:52:08

He does generally understand, he's met the developmental milestones for that aspect of it no problem, you ask him how he feels and he can tell you, ask him to do something and he will (sometimes, if he can be bothered) do it, ask him what he wants to do or what he's played with or where he's been he can answer (normally after giving you the fantasy version and me reminding him that's just in his imagination). I've never really thought about autism more because he's such a quiet easy child, doesn't have too many issues so long as his routine isn't suddenly changed (which I can understand as I don't really like sudden change either).

Hurr1cane Mon 21-Dec-15 19:06:00

My DS is a very easy child. Good as gold. But he has a typical autism. It might be nothing, but with the regression of skills (that could well just be sensory or anxiety related) he needs seeing sooner rather than later really

MissingTheMissletoe Mon 21-Dec-15 19:13:44

I will take him to the doctors as soon as possible (gp surgery is one where you have to phone every morning to get an appointment rather than pre booking, can be brutal trying to get one) and also find out who my health visitor is and see if I can get an appointment with her too. Thanks for all the advice smile

Hurr1cane Mon 21-Dec-15 19:18:29

It was my health visitor that got me the appointment initially thinking back

livvylongpants Mon 21-Dec-15 20:20:50

my son is also a good quiet child and we are awaiting a diagnosis of autism. not saying you sons autistic but how a child acts is personal to that child alone.

I would definately recommend the health visitor as a good port of call, they are not just for newborns.

Has your nursery mentioned anything to you

BlueSmarties76 Mon 21-Dec-15 20:53:05

Thanks for elaborating OP, that was interesting to read. Upset at changes in routine (as Hurr1cane said, inflexibility of thought) are also common in Autism.

IMAGINATION and autism is something people get confused about. It does NOT in any way mean DC have difficulty being imaginative in the usual sense, that criteria refers to SOCIAL imagination ie. The ability to understand what others are feeling and to infer meanings / read between the lines when somebody is talking.... So nothing whatsoever to do with an overactive or underactive imagination. Hurr1cane smile

So OP, I think you ought to ask the GP for a referral to the Paed. Plus I think you ought to see a different SALT, they sound shit! No point in seeing the health visitor, this is outside of her remit. You need a Paed to assess and diagnose.

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