Odd question,ive got a paed app,for one of my DC...

[BettyFRIGGden]

(I normally post under FriggFRIGG,dickens name change)

Anyhow,I have finally got a paed app for my DS,it's about a possible gluten allergie.
Thing is,I've been trying to get a paed ap for him-delayed speech,and one for DD about some behaviour/sensory stuff (I've had other threads about her,that someone may remember...)

It's taking ages and she hasn't even been referred yet,we are at the end of our tether,neither of us can control her anymore.

So,normally I wouldn't take her to appointments or anywhere I had to actually get something done,BUT is it worth taking her,and mentioning her problems to the paed...do they have any power of referral?could they start the ball rolling for her?
Is it worth mentioning DS's delayed speech?

Or should I just focus on the gluten allergy and wait forever for a separate referral for DS's speech and DD's issues?!

Is it an appointment with the paediatric gastroenterology dept, or a community paediatrician?
IME, with similar issues, gastro only deal with gastro issues. Community paediatricians can make further referrals to multidisciplines SALT, gastro, CAMHS etc.

I dont think it's a specialist paed,but I'll ask,obviously if it's a gastro paed I won't bother asking about behavioural issues,but if I see a community one,do you think it's worth a mention.
I really don't know what to do with her anymore,I feel like I'm losing the plot.

why hasn't your dd been referred yet? is it your gp not referring, or is she languishing on a waiting list somewhere?

I would mention delayed speech - but then I am coming form a biomedical approach to ASD. there is a school of thought (NOT saying your ds has ASD, btw) that gluten sensitvity (and casein - the protein found in dairy) can particularly affect people on the spectrum, and in some cases, family members too. eg dd1 is off the scale for ASD gluten sensitvity, and dh and my dss are also sensitive (not to the same degree)

dd1 had hugely delayed speech (she still does, as she has a speech disorder) - once we removed gluten from ehr diet, her speech became to develop (she was under 3 - had about 4 unclear words and lots of jargon before removing gluten; within a few weeks of going gluten free was picking up words like nobodies business, along with other improvements)

Peachy (used to post here a lot, not sure what name she is using these days) has posted before about her casein sensitivity - 2 out of her 4 boys are on the spectrum, and a third underoging investigation - anyway, she has said she feels like she is functioning through a fog if she has casein - can't think straight, can't function properly etc.

a word of caution: some paeds will dismiss this entirely. it may not be applicable to your ds anyway. just wanted to throw soem info into the mix (sorry if speaking out of turn)

I would take her and mention everything about DS and DD. you might think that it was a waste of time but quite often referrals don't have to follow a set path.
In the worst case scenario it will go onto his/her medical notes which might give you something to chase about. Hope I am making sense.

The NHS is supposed to be about patient confidentiality but IME it does not apply within NHS. I was speaking to my GP about something this morning and she has been in touch with my sons paed talking about me which made me go a bit .
So if you can get some support and take them together and pour your heart out (this bit is necessary IME, it speeds things up) you may find you will get somewhere. After all you have got nothing to loose.

On first referrals they usually take quite a full medical history too - which would be an ideal place to add all the info that you want them to know.
I'm only speaking from the experience of gastro being involved with food intolerances and not being able to refer within our own pct to other services when I queried the part that dyspraxia might be playing with intolerances and IBS. I had to go back with a referral to comm. paeds to re-route.
Now this might just be our very wonderful PCT [sacrcasm emoticon] - but consultants seem to have their own hierarchical system in place.
Just reminded me of Ninja's joke 'what's the difference between god and a consultant? God doesn't think he's a consultant'

Thankyou bother much,it is funny you mention the gluten/casein ,DP was looking at this last night,he is Convinced that this is the answer.however we are not allowed tO interfere with ds's diet until he has had his tests next week.

As for DD she is languishing on a list,it diesnt help that her preschOol think I'm unhinged as she does well at school and is ahead of her Peers.

I will mention everything and pour my heart out if there is any have whatsoever of it making the finest difference to either of their referals!
Thank you for the help and info,it is all much appreciated.

When DS3 went to his asthma appointments with a specialist paed the first time we went she took a detailed family history - not just for asthma related symptoms but noted down DS1s AS, DS2 possible ASD etc, so it could be very worthwhile taking both DC along to help.

good idea to get tests (especially since you are at this stage nw anyway)

hope the paed listens, but do be prepared to have the dietary changes gluten'casein thing pooh-poohed. it happens.

in your dd's case - phone the place handling her rferral. call them every week, and enquire whehte rthere is a late cancellation, or any change in the list, etc. be polite but firm.

they'll bump you up just so yuo stop annoying them

Okay I'll take her with me then...hopefully DP can take time off work to come with us or else in going to have a hell of a time trying to keep her occupied...I'm having enough trouble trying to get her to eat half a cheese sandwich in a kid friendly cafe.why do I do it to myself!!

Okay I'll take her with me then...hopefully DP can take time off work to come with us or else in going to have a hell of a time trying to keep her occupied...I'm having enough trouble trying to get her to eat half a cheese sandwich in a kid friendly cafe.why do I do it to myself!!

Oh thanks for the nagging tip...I'm quite good at nagging

I'm not sure why that posted twice,or where the wink came from?!