DS 20mths,speech delay,iron deficancy,gluten intolerance,possible partial deafness

[FriggFRIGG]

Oh,and he has to have an op on his teste,as it hasnt decened yet.
Does it add up to anything? Or lots of separate conditions?!
Some could be interconnected,I get that,but I guess I'm just trying to make sence of it all.
It doesn't seem fair,he's such a sweetheart,always cheery.
It feels like we've been collecting diagnoses for months,and now,the final blow,he might be partially deaf.and that will be why he hasn't ever copied noises or spoken a single word.
How could I not know?
And we won't find out 'for certain' for 3 months!
We're seeing his paed next week,I don't know what to say,except to beg for SALT.
Sorry,muddled post...wasn't sure where to put this either...

Sorry, I can't answer your questions, but just wanted to say it sounds like you've had a hard time of it.

I hope your DS will be okay and the Paed appointment goes well.

Thankyou mama

Oh, poor wee scone, so glad for him that despite it all he is cheery in himself.

Hope you find answers, not knowing is hard.

One thing I discovered as a parent is all children have something, often numerous things. I never realised this before, and I have been a child myself ;)

Write all symptoms down and tell them you are worried/ or perhaps hoping for a syndrome, to at least make things clearer to comprehend.

I haven't heard that turn of phrase since we left Edinburgh
And thankyou,I will ask the paed.

Hah! I live just outside Edinburgh lol.

Don't be hard on yourself, I don't see why you'd particularly pick up the partial deafness, especially as you've had a lot else to worry about. He'll be OK cos he's got a lovely mum looking out for him.

Oh Frigg my For Sale boards friend, that's rubbish news.

The deafness and speech delay must be connected surely. I was deaf when I was born. Had medication and op around 2.5ish (my mum had to fight to convince paeds that I had some hearing; she knew I reacted to her bangles clanging together when she leaned over me; they said I was congentally deaf). Although speech, language etc was delayed I always went to mainstream school and had "caught up" with my peers once I'd learnt to read at 7. Beg for SALT !!!

Could the gluten intolerance be causing this? I know that my deafness was due to ear infection and very thick mucus blocking my ear tubes. I also know that dairy intolerance can cause excess mucus - does gluten intolerance have a similar effect? Could it be related to this, or am I clutching at straws for you?

And the gluten intolerance - if he's not digesting properly, then this could be the root of the iron deficiency no?

Has he got full blown Coeliac disease? I know a little boy who was "failing to thrive" until he was diagnosed as coeliac and treated accordingly.

Why the three month wait? Aaargh!

Awh,thanks.
I feel a bit cruddy,as when we went in to the audiologist she asked if we had any conserves about his hearing,and I said "no,not at all,I'm sure he can hear fine,he just isn't talking yet so we had to check before he can access SALT"
And then he didn't hear the high pitched noises...
They are going to re test him in 3 months...

The thing is,I was going to get DD tested,as she's always saying "eh?" turning up the tv/radio when it's perfectly loud enough already,she speaks at a yell most of the time,and I often find myself saying she just never listens,but why would they both have hearing problems?!

My son is intolerant to gluten. He is also intolerant to dairy. He may be intolerant to both as it is very common to have a problem with both.
Ds2 also didn't speak at 2. He was unresponsive but he has audio processing problems rather thsn poor hearing.

I removed gluten and dairy, improved his diet and that helped him enormously.
He is 15 now. His diagnosis, once we tied up all the constituent parts, was autism. I think his food issues and his behaviours are linked and that it is a bit more complicated that that

Why don't you post this in sn? There are loads of people with hearing issues and diet issues there.

Oh hello bikerunski!
Right,the coeliac thing,he has been tested,it came back neg,so they said it must be an intolerance,but I'm going to ask for a Re-do when he's 2+ as I've heard there can be false negs for under twos.
The hearing,no,no mucus build up,they checked,his ears are clean,and look perfectly heathy.
And yes,I'm pretty certain the gluten intolerance is causing the iron defiency as he has lots of iron in his diet.
Your story has really helped me though,thankyou.

No idea but it sounds like an overwhelming time with so many things to consider. Are they going to investigate genetic testing? It isn't that it magically solves problems but it may help explain what's at the root of these symptoms. Might be a sledgehammer to crack a nut, so not sure if this is an appropriate suggestion even!

I agree investigating SALT now is a great idea, as is getting the support he needs in place will benefit him and help you to help him.

For gawds sake don't be "blaming" yourself for not picking up on things he's still so little and they do all develop at different rates. Good luck with the appointment, he sounds lovely x

X-posted. Ask in SN about auditory processing.

pag we have removed gluten,but he is still showing some symptoms,so dairy could be the issue,thankyou,I'll remove it for a few weeks and see what happens.
We are going through the DX process with DD (possible Aspergers) so I have been 'looking' for signs with DS BUT I'm almost certain he's NT,his eye contact is brilliant,he actually plays with toys (which is a revelation for us!) rather than just 'sorting' them into 'collections' he follows instructions etc.....so this seems like....something....else,although,of course the spectrum is huge,so I could be wrong.

Okay,I'll post in SN tonight.

It's a fricking puzzle isn't it.
DS is at a school specific for asd and I am still not sure he 'fits' because so many of his behaviours are wrapped around food issues. [sigh]

Yes - get the folk in sn on to it. They are much smarter than me general chat

Thanks for moving this MNHQ.
I would much appreciate any advice on any of DS's issues.

hi, DS1 was a bit like this at 20mths, including the testicle! though as far as I know this is entirely unconnected to his other problems and is very common. He had a minor speech delay, some behavioural problems, absence seizures and I've always been convinced he has some food intolerances/allergies though never had this confirmed. he is a fussy eater.

fast forward a couple of years and we do have a definite diagnosis made through a blood test. it is a rare condition which is chromosomal and may or may not cause him problems (I probably have it too, but have no symptoms).

he's doing really well so we are quite hopeful. speech is fantastic, absence seizures gone, has friends etc. have worked quite hard on improving his diet but have not actually gone gluten free, though would consider it in the future if he got worse again.

HTH

That's very interesting,I don't suppose you would tell me the name of the condition? Also,what are absence seizures?
Im so glad he's doing well now

HI, I PMed you.

I think it is unlikely they have the same thing but I just wanted to respond to let you know that things often improve - even genetic, chromosomal conditions.

Hi thanks,I've just seen that.
It's just interesting to see that a bunch of symptoms that look like separate conditions could be linked.
And It is good to hear about any improvements really.