4 year olds struggle with speech

[TheOnlyDadOnMNet]

Hi,

We have a 4 year old with developmental delays who has had a difficult start in life. He has had persistent and severe problems with glue ear making him practically deaf which we have recently solved by eliminating gluten from his diet. Upon further digging we found that gluten (or something related) has been irritating his gut leading to inflammation (we think causing the glue ear) but also preventing him from digesting his food properly and from getting the correct nutrition from it. This is something that runs in my family but until now we had not realised was an issue as it never effected me. The result of this beside the glue ear was stunted growth, a broken foot when he was 3 (low vitamin D and subsequently thin bones) brain fog/zoning out, pale skin and a myriad of other symptoms and issues that have now improved greatly.

Since removing gluten, working hard at his diet and giving him supplements his development has kicked in, physically he has shot up and he has colour in his cheeks for the first time in years. Cognitively he has switched on and he wants to explore everything. He is amazed at things that last year he would have wondered by without a second glance.

The one area of huge frustration for all of us is his speech. He is constantly taking and trying to communicate but his speech is very unclear. We can sometimes understand him but most of the time we are just picking the odd word out. People who don't know him would understand very little. This is especially evident when he is upset and desperately trying to tell us why. I don't know if this is because of the hearing problems, the physical developmental issues he had or a combination of both.

We have tried getting help from paediatricians and audiologists but as usual with something like this they are having none of it. The paediatricians totally ignore any possible impact of nutritional issues on his development and don't even believe me when I tell them about his deficiencies despite the overwhelming evidence. The audiologists refuse to acknowledge that the glue ear was linked to gluten and insist he has probably just grown out of it despite the timing and the fact that the glue ear "magically" comes back if we ever introduce gluten back into his diet.

I just wondered if anybody else has had a similar experience or is in a similar position? We've only been working on this for around 6 weeks and he has made significant improvement in that time. We hope that given time and with some therapy he will be able to make the developmental leaps needed to grasp speech and to start communicating properly. But it's all new to us.

Thanks!

What you’ve written is v interesting. My son (6) has had very delayed speech and other problems learning to read write etc.

He made no progress with NHS speech therapy because we didn’t see them often enough but as soon as we started weekly sessions with a private salt he made absolute leaps of progress and is now understood by everyone. If you can find some money I can’t recccomend it highly enough.

My son also started life with gluten/dairy intolerance and made huge improvements when we cut it out and gave him vitamin supplements and omega 3 and has grown A LOT! And lost his pastey look

Have you ever read the book by robin pauc?

Hi, no but i've just googled it and it seems similar to a lot of information that I've read on the internet about nutrition and learning difficulties. I'll have another look later. Thanks for advice RE speech therapy. We are planning to increase what we are doing. Actually until we cut gluten and started the new diet our son was very un-receptive to learning and so I am not sure regular therapy will have had much impact. Now he is much much better and so we feel he will really benefit now and the time is right.

How is your son now and how is he with other children? Our son struggles to communicate with and understand children so he tends to avoid them. We are hoping that as his speech and language gets better he will want to interact more.

Is your child under SALT? Ds2 had severe delay and disordered speech (diagnosed asd). His glue ear resolved and wih intensive speech therapy we have seen a at results.

Health care professionals refused to discuss diet impact with us. I cut out dairy from ds diet amd immediately his nose stopped running, he stopped falling asleep every lunchtime and much less pasty. We also are cutting out wheat but not brave enough yet to go fully gluten free

Hi, we are under NHS SALT but the appointments are so infrequent that they have no impact. We have just started working with somebody privately and plan to do that more often. Also looking to start some play therapy.

It really bugs me how some doctors and paediatricians seem so ignorant about diet. If a young child has an underlying condition stopping them from getting appropriate nutrition it can have a huge impact on their development. But because they never look they are unlikely to ever find anything.

Gluten free isnt that bad! There are loads of easy meals you can make. We just batch cook and then freeze.

I agree gluten free isn’t that bad. If you join the celiac charity they send you a book with all the food in each supermarket that are gluten free, it doesn’t always have to be the expensive free from brands (things like Tesco rice crispies or beans are fine but not Kellogg’s)

Just to answer your question - my son was looking like he was on the spectrum because he was avoiding eye contact and playing repetitively in the corner with cars in nursery... but it all came down to him being self conscious about his voice and has gone away as his speech has got better and his confidence has grown. We did a really detailed assessment with his private salt, a celf test and that was a really good way to pinpoint his difficulties and work on them

I’ve read lots on the diet stuff now. There’s a book called the gaps diet that is very in depth

A probiotic (we used optibac) really helped his tummy too

Our problem is dairy and gluten free. At home it's fine, grandparents are not on board which is hard and we eat out lots so trying to tell set asd 6 yr old he can't have his favourite foods that hes used to leads to another meltdown. Dairy free we have found manageable but combing the two is very hard anywhere but home

We're lucky I suppose in that our son is a pretty good eater although he has become a bit more fussy since we fixed his diet. Before that he was starving all the time and would eat anything. Even sand and dirt (pica)! Children's parties can be a bit of a nightmare as pretty much everything has dairy and gluten in it and he tries snatching cake. It does sound hard if the grandparents aren't supportive. You could try keeping him at home for a couple of weeks during the holidays and cutting gluten out then. We saw an impact almost immediately with things like sleep. Perhaps if it works for you then you could use that to try and get a bit more support? Or if it doesn't work then at least you know you have tried it.

abc12345 we have been using probiotics as well, plus now kefir. We have a GAPS diet recipe book which we use. Haven't seen the need to go on the full diet because it is quite extreme and a one size fits all approach, but we find the recipes useful due the highly nutritious and easy to digest food in them.

I agree with you guys. Kids party’s are a nightmare. With the help of a dietician we did an exclusion diet for years (the slightest crumb would cause so much trouble!!) but we managed to reintroduce it all successfully in the end. Now I cook dairy/gluten free at home but I am relaxed about the odd slice of cake at a party.

I think the gaps diet is v extreme too but the book I read was so interesting, it explained all the symptoms you can have and the reasons why

So I'm guessing your son isn't celiac if he can have the odd treat now. If you don't mind me asking did you ever have any sort of diagnosis for the gluten/dairy intolerance? What would happen if he had some gluten? I think our son will be OK if he was to eat the odd bit of bread but it is the cumulative effect it has on his digestive system that causes all the problems. I asked a paediatrician about it and he was no help at all so we're working with a dietitian privately who has been excellent and everything is backed up scientifically. At the moment we're in the gut repair phase so given time I think he will be OK with the odd treat here and there too.

Yes kids parties are an A-Z of food not to feed a kid of needs to be gluten/dairy free!

No he’s not celiac, that was the first thing we ruled out.
We managed to get referred to a dietician on the NHS because of his reflux/colic/constipation/diarrhoea/failure to thrive when he was little. We cut things out one by one until we found the culprits in our case dairy, soya, wheat, gluten, eggs). The dietician said it was an intellerance not an allergy.
He was then happy and we gave him a break from these things, gave him probiotics, vitamins, omega 3 and a really good diet and then tried reintroducing one thing at a time. Each time we tried he would cry for nights in pain, stop going to the toilet, be withdrawn etc etc but then one day after his 4th birthday we reintroduced something and it was fine. We managed to do that with everything! The dietician said his gut had matured and repaired in that time.
I’m still a bit suspicious of those foods and I’d got in the habit of pasta alternates etc so I’ve carried on at home.
I’ve googled it until I was nearly mad, no one really knows but I think antibiotics might have killed off his good bacteria. They also think csections are no good because the good bacteria gets passed to the baby when they travel down the birth canal. All just theories though...

Thanks for your comments. I'm glad you answered this thread because your story is very similar to ours. Our son was a c-section birth and he had antibiotics on the day he was born which we suspect has had an impact by wiping out his good bacteria. You're right that there's not a lot of concrete information out there about this kind of things. I think some people are just more susceptible to these kinds of intolerance. Things like c-sections births and antibiotics can then trigger it in these people.

I never thought that eating the wrong things caused him pain but actually last week we had a few days where he had diarrhoea. We linked it to some colouring on a fish in a home made fish pie we made him. At the same time he was also up a lot in the nights and very unsettled at bed time. He also developed a small rash. We thought it was because he had a bug but thinking back I think it will have been discomfort from eating the wrong food. Since then he has slept fine.

Well we'll keep on going! This has all left him very delayed but now we are starting to see him tick off developmental milestones so we know it is working. He's never looked healthier. How long was it from cutting out the cutting out these foods until he was able to eat them again? Our dietitian thinks it will take around 6 months for his gut to heal but I think it will be longer. I doubt we will ever go back to regularly giving him gluten and dairy until he is at an age where he can describe to us how it is making him feel.

Now we just have to fight the paediatricians who insist that food intolerance and diet will have no effect on a child's development.

I think we cut everything out by the time he was 18m and we didn’t have any joy reintroducing until he turned 4 but it did take us a long time to get to the bottom of it because it was so many different foods.
By the time he was 2.5 I’d started to worry about speech but I put it down to the years of not sleeping. Now I think there was more to it.

I really do think a probiotic helped a lot (we started that in the 6 months prior to everything being Ok)

It does get complicated. It seems that once you cut out the food that is causing the problem all sorts of food insensitivities are revealed. We worked out this week that sweet potato causes problems. We now also know that whenever he eats something that doesn't agree with him he will toss and turn for 2-3 nights and keep waking crying. It's definitely 3 steps forward 2 steps back.

Great to hear your story and the similarities with ours. I think the speech delay comes from lack of suitable nutrition to the brain. Once nutrition is restored through supplements and ultimately gut repair the brain is able to develop as it should and with therapy catch up (fingers crossed). There is a lot about this on the internet but most of it seems to be in America.

abc12345 did you son ever have problems with peas (frozen)? We've had a good few nights then out of the blue our son was up crying again last night. Plus no "bedtime poo" so probably blocked up. The only thing he ate yesterday which he doesn't have often was peas. I thought they would be harmless enough but maybe not. He also had onion and garlic in a stew but he has that in other things with no obvious bad effects....

No problem with peas. It was gluten, soya, eggs, dairy and oats for us...
I hope he feels better soon