Concerned about three year old

[AliceAnneB]

DS3 had very bad reflux as a baby and was a proper screamer. He turned into a very (at least IMO!) high needs toddler. Now that he's three the meltdowns are getting even worse. I've just endured a 1.5 hour tantrum because I refused to move off the sofa. I've been trying all morning to get him out the door tithe park and have failed. Putting on trousers = massive meltdown. Shoes = assume meltdown. He hates going out but I go crazy in the house all the time and just end up on my phone! If I physically force him into his clothes and out the door he cries until he's shaking and there's just not point. Lately I've just had it and I feel like I'm not handling well. If he melts down I take him up to his room and wait it out either with him or outside the door if I can't take it after awhile. Nothing seems to help. The GP didn't think he was ASD but I'm not so sure. We have found a private psych end who hopefuly will do an eval. I used to try and validate his frustration and his feelings but I've just had it. I find myself saying horrible things like "what's wrong with you!?". I'm losing my temper and just feel awful. But how do other people cope with these meltdowns. Is it remotely normal to still endure hours and hours every day of screaming with a three year old?

Yes he goes to a Montessori nursery three mornings a week and they think he's borderline and have said give it awhile and see. They describe him as intense and unhappy. That just breaks my heart. He is not affectionate at all. He will not hug my husband or show him any affection. Lately I get a random gentle stroke which is new and really really nice! He doesn't seem to have empathy. He attacks our two cats given half a chance. I spend all day on guard and have a lovely burn on my arm from diving to interfere in the cats behalf while cooking. He will kick them and punch them even though I know he likes them. For what it's worth he doesn't do this to the dog. He does do pretend play. He doesn't flap or anything. He does not handle change.

Does he have any ongoing dietary issues from his reflux? About half of cases are caused by cows milk protein intolerance which lifts by 12 months in half of children but can persist, albeit at a lower level, for much longer in others. Behavioural issues are one of the strongest symptoms, and can manifest as ASD symptoms, when really the children are just miserable with rotten permanent tummy ache, and if it doesn't cause discomfort it can cause in attentiveness. Dd is dairy and soya intolerant but is growing out of them v slowly at almost four. She is a crazed space cadet if she eats potatoes too often... Like tonight.

GPs cannot diagnose nor rule out autism. go back and demand a referral to a developmental paed.

Nursery suggested a private ENT because he is nearly always sick. Snot is a constant. The rare days when he doesn't have a cold he is like a different kid. So we did private ENT at a huge cost as GP just said he's a toddler they get sick. He had a course of prednisone and antibiotics over Christmas that cleared him up but soon as school started again it all came back. The ENT wanted a follow up but it's hugely expensive. I was hoping the GP would refer to ENT but they won't. How do I figure out what he might be allergic to? I am lactose intolerant. Who would do food allergy testing?

Hi alice that sounds tough.Firstly I would say change GP''s if you can,get someone more sympathetic and insist on a referral to an ENt.Is your son on any medication?my son was taking medication for his asthma until very recently,but after we took him off it he has been a changed child.I would echo previous posters re the intolerances.Make sure there is no physical cause for this to start with.It is so difficult and draining for you,you have my sympathies.

Constant snot is a classic cmpi symptom, the attachment issues can stem from you being unable to stop his pain when he was tiny, and your lactose' intolerance... You probably have issues with the protein in cows milk rather than the lactose sugar. And it runs in families. As it's not an antibody mediated immune response but a slower acting one like hay fever, it won't show up in blood tests, only elimination diets are really accurate. In a newborn it takes three weeks of strict elimination to test. At his age his gut will have sustained more significant damage and will need time to heal, 1-2 months might be needed. And it has to be strict - not just cutting out the obvious, you need to read the labels of everything... From crisps to gravy granules, milk is added to all sorts. You need to invest in a good calcium supplement like osteocare liquid, and I'd cut out soya too as 30-50 of cmpi kids can't tolerate it either.

As far as allergy testing. Try the dairy first as his and your symptoms are a huge red flag, plus it's by far the most common one. If after 1-2 months of dairy and soya free you give him a trial of dairy and it all goes to pot again you have your answer. If you're on FB there's heaps of cmpi groups who can help you find everything from dairy free yoghurts, milks (koko or oatly are great), birthday cakes to ice cream. If this is the cause of CDs behaviour it's actually wonderful news, you can totally help him. Good luck x

Thank you so much catlady. The idea of going dairy free sort of fills me with dread. DH eats more cheese than anyone I know and DS loves it to. He still drinks lots and lots of milk (goats). What would I offer as a substitute to that? What about butter? Sorry I know this sounds stupid I'm just worried it will cause more tantrums but I'm willing to try. It's going to take getting DH on board but what I will do about DSS I don't know. My stepson is so picky that he will not eat a sandwich. He will only eat a hot grilled cheese. Done. What I'm going to make him I have no idea. If DS sees the cheese I will have massive meltdowns.

ive got one DB who was an absolute nightmare as a kid, i don't know how my DM didn't have some sort of breakdown with him. He was excluded from playgroup for kicking the worker in the face very hard. He refused to go in a buggy and would cling to lamp posts, as a baby he would nut the floor and walls when he got angry and smash all his friends toys, chuck bricks at people. He was brought up and disaplined the same as the rest of us were and the rest of us were fine. My DM had to watch him like a hawk with my youngest sibling as he would hurt him. I remember once my DM turned around as she was getting all their coats on when he was a toddler and he picked the baby up. Everyone looked in sheer terror. Everyone was thinking please, put him down and step away from the baby but we managed to get the baby off him. That's how bad he was. Hes in his 20s now, earns the most out of all of us and his child's an absolute joy. My mam seen specialists, changed diet etc but at the time they couldn't find anything wrong with him so it was put down to him being an angry, highly strung willful child. He's fine now

oops ignore spelling and typos' this was over 20 years ago so it is possible he had some kind of behaviour problem which wasn't picked up on then but would be today but he is fine now, you wouldn't believe he used to be the way he was

I hear you and I really feel for you. I would start by changing yor GP to someone who is supportive. Your son needs to be seen by an ENT and be assessed by a development pediatric specialist.

If it gives you any comfort DD is 'spirited' too and can give me an hour long tantrum given half the chance. My godmother is a recently retired special needs teacher and has been able to help me an awful lot. For us reward charts worked but we also looked at diet and environment.

Dd started school in September and her teacher has referred her to the in-house specialist. They have helped us calm DD down. We made a calming bottle and set routines up with pictures all over the house so it's really easy for dd to know what's coming next.

Hi Alice, could it be SPD Sensory processing disorder?

Google around and see what you find.

spdfoundation.net/about-sensory-processing-disorder/

My dd has some issues, she is dyslexic and the school think maybe on the autistic spectrum but I am not so sure about that. I think SPD or maybe ADD (attention Deficit Disorder). We are investigating now, she is 10.

Yes, agree, go back to your GP. You need to start the ball rolling on getting help.

If you want to go down the food route can you get some advice from GP/dietician etc. I don't know anything much but going non-diary. If you find it is cow's milk that is the problem you might be able to have milk products that are not from cows, so goat or ewe's milk. You might also want to try lactose-free cows milk. But if you are going to cut things out please do take advice because there are nutrients they need in diary etc.

Lots of info on line but it may be different for children, so please do check.
www.bbcgoodfood.com/howto/guide/spotlight-dairy-free

Sounds hard.

I must point out lack of empathy is NOT a symptom of ASD. At all.

That's interesting that lack of empathy isn't an ASD trait - I always thought it was.

I'm not worried in the slightest from a nutritional standpoint about cutting dairy. Half of our family are vegan and to say the very least are well educated lot in the nutritional department. DS eats a very good and varied diet. I feel like it's my one big win with him.

I suppose he could have sensory issues but I don't see much evidence but maybe he's too young to be able to tell me. He has really struggled to be able to tell me what's wrong.

He is very controlling of me. He has a total meltdown if I wear my hair differently or sit in a different spot than usually. If I wear a jumper he will literally try to tear it off me.

He doesn't mind loud noises. Bright lights don't seem to matter. But people touching him, he hates. ??. The lack of cuddles is the hardest part by far.

Your HV can refer you to community paeds - you don't need to go via the GP. He or she can also refer you to a dietician if you go down the no dairy route for support. I would try and see a different GP too though if you can. Did he have any kind of developmental assessment with a HV at around 2 years old?

If you're in the UK then for fake butter try Pure Sunflower spread or Vitelite both of which are Df and sf, for milk substitute try Oatly or Koko, oatly do a good cream substitute for cooking, violife make cheese substitutes which are passable but not amazing and Bessant and Drury make incredible coconut milk ice creams, oxo are Df and sf stock cubes, and Betty Crocker mixes are only trace dairy and soya so good quick fixes til you find your baking mojo. Hth.

OP demand a referral as others have said.

I find my 3yo who is stubborn very hard work, and she is very opinionated and awkward. But no, she doesn't tantrum for 1.5 hours. You are coping much better than I would, it sounds really hard

Good to know about the diet thing, Alice. Well done on having that dietary knowledge. I still think a good dietician might help but I am aware not all dieticians are so great.

Re the sensory thing, it may be because I have a friend whose child has a diagnosis of Aspergers and has sensory issues, but another of her children also has scensory issues but does not have Aspergers diagnosis.

My dd is fine with bright lights but it is material, close to her skin, like socks that were an issue, and clothes generally, and also loud noises. She also has tantrums, and is 10 so really well beyond the normal tantrum age.

FanjoForTheMammaries I am very interested to hear you say people with autism do not lack empathy. I would love to see the evidence. My daughter may be on the autistic spectrum and she sometimes displays empathy and sometimes a lack of it. This may well be because her dad is not terribly empathetic and I am very empathetic. It is just the way we are. I am sure it is controllable to some degree, I can learn to be less affected by the plight of others (and I have, at one time I could not read the paper without almost ending up in tears!) but I wonder if empathy like so many things, might vary from person to person.

What I had understood to be the 'issue' was that people on the autistic spectrum had more difficulty reading other people's emotions. I would love to know if this is wrong but I am aware of some information that says... sometimes... to the question 'Do people with Autism lack empathy?'

autism.about.com/od/SymptomsofAutism/f/Do-People-With-Autism-Lack-Empathy.htm

Because ASD is a spectrum it does make sense to me that there may be differences in people but of course we are looking for the general, what we can generally say about a condition. As I say this may effect my daughter so it is personal to me and not a judgement on anyone else or anyone's child.

Good luck OP.

How does he sleep?

DS1 was similar to what you describe, although probably a slightly milder version.

When he was 6yo I pieced it all together and found the root cause of his problems.

-He had gut issues - egg allergy, dairy intolerence and reflux (which I didn't know about until he was 5yo).

-He had a very restricted diet because as well as the restrictions for allergies, he was extremely fussy.
-He was also a mouth breather and snored with bouts of apnoea.

-His orofacial structure was distorted (not that you would notice unless you knew what to look for) and his nostrils and eustacian tubes were restricted.

-He had congestion in his ears with noise and some hearing loss.

All of this was the result of an undiagnosed posterior tongue tie and a high narrow palate.

It basically affected his ability to eat, breathe and sleep which unsurprisingly had a knock on effect on his behaviour.

He had appropriate treatment when he was 7yo (revision and early orthodontics) and is a different child now.

I would definitely encourage you to leave no stone unturned to make sure there is no physical cause behind his behaviour.

I really appreciate everyone's comments. The ENT found him to be 80% tongue tied and wanted a SALT assessment. The GP didn't put us on the list and told us to go private if we wanted it. He cant say a sh, sc or l sound at all and does pouch food. I think I'm going to try and find someone to do the speech assessment but then what? Do we have to pay privately to have the tongue tie fixed? Really at a loss here being an American. I don't quite get what services we (DS is British) are entitled to and how to get to them. Finally the last cold has cleared and we had a great day today and none of what I posted previously wouldn't apply at all. I feel like a crazy lady. How can he be so different when just his nose clears up? He still insisted on stepping on every single mangold cover but I can live with that!

If your child is entitled to NHS treatment, he is entitled to a referral to an ENT consultant, a SALT, a dietician and a developmental/ community paediatrician who can initiate a full neurodevelopmental assessment. You need to change GP and ask for all of those referrals to be made ASAP.

Children with ASD can have periods when their symptoms are more and less severe and this is usually linked to the other challenges they are facing. A child whose sleep is disrupted by a runny nose may show more sensory sensitivities and a child who feels anxious about having their nose wiped constantly may feel the need to be more controlling about other things in their environment.

I have two children with ASD and there are enough things in your posts to make me think that your child needs a full neurodevelopmental assessment. At the same time, it is worth ruling out other problems. Children can have ASD and lactose intolerance and the symptoms of the intolerance could easily make the ASD symptoms a lot worse.

No, it isn't normal for a three year old to scream for hours every day and you have every right to ask for decent medical help to find the reasons behind it. It is, however, perfectly normal to be at your wit's end and lose your temper. Try to plan some time to give yourself a break to recoup a little, even if it distresses him to be left with someone else for a while. He needs you to be healthy as much as you do.

We've had to go dairy free from time to time (and skip various other foods due to intolerance and allergies) I usually find the thing causing the problem is actually the one he's craving and asking for the most, a bit like an addiction - it causes harm but you want it anyway. We also use probiotics a lot which may be worth a try

IME as cruel as it seems going cold turkey is the quickest easiest route of cutting out anything. Tantrums are only on the first day with DS (who can also have hour long plus ones)

DS doesn't have ASD but does have traits and a family member recently figured out a lot of his meltdowns are due to being overwhelmed where although the instruction seems simple, age appropriate and fair he just can't quite cope with the reward not coming immediately eg "eat some peas and then you can have some pudding" at the end of a meal will cause a meltdown, on the other hand if he is given a small bit each time he eats a pea - meltdown avoided and he'll happily eat every pea on his plate!

I don't know if Iv explained myself all that well but I think a technique they sometimes use with ASD kids called ABS is along these lines of a small reward being given for every single step of a task - not just for the task being completed

80% tongue tie?

There's the first piece of your puzzle I reckon, but it's also possible that there are also other things going on.

If there is any way you can possibly go private to an expert, I would recommend that you do and the guy you need is Dr Levinkind in London.

With DS1 we saw one consultant for his allergies, another for ENT problems as well as audiology, a dietician, a general paediatrician for his gastric problems and his NHS dentist.

They all poo pooed me when I said his problems were stemming from his tongue tie and orofacial structure. (photos on my profile if you want to have a look)

Meltdowns over trousers and shoes happened with DS1 too. He used to get extremely distressed over it. There were other sensory things going on as well, he hated getting a spec of mud or a drop of water on him. Certain clothes were a complete no no from a very young age, and when he was old enough, he explained that he didn't like collars and buttons. There probably isn't a "proven" connection, but there are many parents of tied kids on the groups I have been on who have said similar about their kids.