UK Mums/Dads - dietican appt for food intolerence - what to expect

[firsttimemummy]

I keep stealing other peoples' posts so thought I should make my own one! 

DS has been referred to the dietician for a possible cows milk intolerence (which I also have).  Since the appointment was made (and we have cut out cows milk) we are starting to try to figure out other food intolerences.  DS has ear infections and was only having breastmilk for a week (and food, but no other milks) and it was the first time in months and months he had a clear nose.  The morning after giving him cows milk again for dinner lead to more snotty noses, confirming my query about the intolerence (although not been medically confirmed yet).

Anyway, since then DS has still been having problems with his nappies - I can't remember that last time (Apart from 1 the other morning) he had normally formed poos, and he often has a red rash where the poo has touched his skin.  Although not diarrhoea the poo ranges from being a bit squidgy (but able to come off the nappy to be flushed, as he wears washable nappies) to being stuck to the nappy 

I have been keeping a food diary to help pinpoint what it could be - he has always reacted badly to orange juice (through my milk)and carrots.  So far we have eliminated fruit juice(no matter how diluted), soya milk, possibly eggs (he wouldnt eat them after a sickness bug when he was much younger and the first time we tried again recently he had spots on his face the next morning - maybe a cooincidence) and are now wondering about wheat ...

He is gaining weight well and is really active and sleeps well, so I am not concerned in that way.  He eats like a horse and would eat all day and night, given the chance - just like his dad!!!  It's just a question of finding the right foods to feed him that don't upset his insides!

I know that it could be so many things but was just wondering if anyone else has been to the dietician and what they actually do.  Can they arrange for allergy tests, etc (and if so, how long does this take, etc) and how often generally do you get to see them?  I would just like to be prepared as much as I can so that we get the best use out of her/his time.  Also, someone mentioned that if you get a diagnosis you can get vouchers to help buy speciality foods - can the dietician help with this?

For the last week I have been keeping a food/BM diary to take with us, and a note of what foods seem to irriate him.

[scarlettsmom]

Hi there,

I'm in the US, so am not too sure what the process is like over there.  However, can you ask your ped or GP for an allergist referral?  A dietitian typically can help when you know for certain what foods/nutrients you have to make up for.  but they won't necessarily be able to help pinpoint them (unless they direct you on an elimination diet).

How old is your LO?  Most testing is very iffy, but gets more accurate as the child gets older.  We had DD2 tested around 9 months, which I thought was very early, but it was pretty spot on.  

It's great you've already isolated some of the allergens/intolerances (milk, OJ).  VERY good news that aside from the congestion and/or yucky diapers he is happy and eating/sleeping well.  That is not usually case, so count your blessings!  And very happy for your LO - it's terrible to see them unhappy.

So - not a whole lot of information - but just wanted to say hello, welcome, and give what feedback I could!  

 

[firsttimemummy]

Thanks a lot - DS is 15 months old.  Have always thought there was something bothering him associated with food but never been serious enough to pinpoint.  Hopefully we will find some answers soon.  As you say, we are lucky that is is such a happy, good eater despite possible intolerences

[Lolly]

We saw a dietician with DS at about 7 months because of his reflux and some food issues. To be honest it wasn't a lot of help . When he had reaction to egg, we spoke to the pead and the dietician about it and had conflicting opinions - the pead said it's ok to have egg cooked in things like cakes but the dietician advised avoiding all egg (we went with the dietician). I have rung for advice with DD and we were supposed to see them for her when she was milk refusing but by the time we had an appointment we had her drinking milk again so didn't go.

It was the pead who arranged a skin prick test and egg challenge when he was 2 to check for to see if it was still an issue ( it wasn't thankfully!) not the dietician.

It may work differently in your area - you know what the NHS is like, but I don't know of anybody who has had extensive allergy testing. I'm not sure if the dietician will be able to refer for testing or if it will need a pead referral

This was probably not much help! Sorry!

Laura

[Mashi]

We also saw a dietician for DS's milk soy allergy and I have to agree with Laura that it wasn't much help. The dietician isn't there to do anything in the way of diagnosis but more to help you make sure that your LO gets the right nutrition on a limited diet. So in our case it was how to ensure he got his calcium without dairy or soy in his diet.  

The morning after giving him cows milk again for dinner lead to more snotty noses, confirming my query about the intolerence (although not been medically confirmed yet).

At this age, in the UK, a clinical diagnosis is usually how things are done - so any medical confirmation will be based on exactly what you did: look at the symptoms, remove the suspect, if things clear up then that's your clinical confirmation.  I know in the US the doctors tend to do allergy testing at a young age but it can be hard on LOs to go through it and there isn't a lot of need unless there are some suspicions that there may be some serious ones that you can't figure out.  And, the NHS is budget-restrained as well.  

I know that it could be so many things but was just wondering if anyone else has been to the dietician and what they actually do.  Can they arrange for allergy tests, etc (and if so, how long does this take, etc) and how often generally do you get to see them?  I would just like to be prepared as much as I can so that we get the best use out of her/his time.  Also, someone mentioned that if you get a diagnosis you can get vouchers to help buy speciality foods - can the dietician help with this?

I would suspect that a dietician can not arrange for allergy tests, that would be a hospital consultant paed or paed GI - but it is probably dependent on your specific PCT.   For how often you get to see them, it's going to depend on what your dietician thinks - she may tell you to come back in a month, or 6 months, but it would really be to discuss the diet specifics and keeping LO eating to get the right dietary balance rather than to identify food sensitivities and such.  And again it will depend on your dietician and how busy she is - ours was a follow up appt at one year old to do the milk challenge but when we were moving abroad an needed to change the appt, we were told she only sees follow-up appiontments on one half day per week, every fortnight, 30 minute appts only, and so that was 6 appointments every fortnight that were available for follow-ups.  But that was our hospital and the system in my area, you may be luckier and have more pead dieticians in your area and they can see more patients, kwim?  In terms of the vouchers for specialty foods I would again suspect that is your GP or paed that will do that, as I don't think the dietician will do a diagnosis.  I know in our area the GP could prescribe gluten free breads for instance, a certain amount every month, and you picked them up as you would a prescription from the chemist.  It does not harm to ask the dietician if she can do that and if she can't to ask her advice on how to get them.  

How did you get the referral to the dietician in the first place? Who ever it is that referred you should also be the one to do more investigations as to what is causing the upset, or in the case of a GP be able to refer you to a paed?

[Jimbob]

I don't think a dietician is able to refer for allergy testing. We have seen the dietician several times with our ds. At first it was when multiple food allergies were confirmed by RAST tests. At this point she gave us lists which showed all the different names in which egg for example could be labeled as. We did not have to go too much into the rest of his diet at this point as he was put on neocate which covered all the nutrients he was lacking in his diet anyway. We then saw her for review every 6 months. We saw a different dietician when James developed a severe food aversion but that was not of much help.

To be honest it depends what you are expecting to get from the appointment. In my experience a child is usually refered under these circumstances to make sure they are getting a balanced diet that is not lacking in any key nutrients.

Kelly

[Mashi]

At this point she gave us lists which showed all the different names in which egg for example could be labeled as.

Yes, this for us too - not egg, but a booklet that listed all of the foods that were, or contained, milk and soy and thus needed to be avoided.  That, and telling me how much formula he needed to drink in a day seemed to be about all she really did!

[firsttimemummy]

Thanks for all that - think I will ring and make a doctor's appointment (it was the practice nurse that put in the referral, suggested by my health visitor) - DS was already referred by him to the eye hospital due to initial concerns about a genetic eye condition and we got an appointment really quickly with no fuss from the doctor about referring, despite it not being that serious

Will let you know how it goes.  Still looking forward to talking to dietician to make sure we are on the right track with what we are doing at the moment but wont hold my breath on getting too much information on the intolerences, just how to avoid the foods

[pamelamcgahon]

We saw the dietician a few weeks ago after seeing a GI for milk/soya protein allergy.  She took a history, weight, height etc.  SHe had sent a 3 day diary for me to keep so she went through this.  We have trouble giving hydrolysed milk as keira will often refuse to drink it so she sent a prescription request to the gp for 2 other milks - the same one we use,nutramigen but stage 2 and also neocate which was supposed to taste better so we could add it to food.  She said we needed to increase milk so gave me some weaning booklets with ideas in (all which i have tried before really) and said we'd go back in 6 weeks.  This was over 8 weeks ago and I had to ring last week to speak to her as we've not had an appointment through and milk has decreased rather than increased!  She was mortified at the advise of the GI!  She also mentioned it would be worth cheking how allergic she is to milk/soya but then never followed this up.  She basically said to avoid til she's 1.

As for buying food.  I never asked really but I did work in a chemist for a year and we had patients who had their bread on prescription and would have to come in often for it and we'd have to order it.  I guess you probably could get some commercial products on prescription but again this would be pct dependent - some wont even prescribe milk.  The dietician basically told me to cook from scratch and to read labels as there are non specialist things that you can find!  As far as i know you can only get vouchers if on benefits and they are about £6 per week for milk and veg.  SHe even told me i needed vitamin drops and to ask the hv who then charged me for them as I am not on benefits and couldn't produce a voucher!  You'd think you could at least get vitamins on prescription for children who can eat food with them in!

Apparently as I still have a maternity exemption certificate for prescriptions i should aske for my own soya milk to be prescribed but i have never bothered - basically worried in case they gave me one of the awful tasting brands as i can only really drink alpro blue and sainsbury's own blue - others are all vile for me!

Hope you find you appointment helpful enough.
x

[firsttimemummy]

Sorry you seem to be having a bad experience.  We went to dietician on Thursday but she was expecting us just to talk about the milk intolerence and gave us some reassurance about what we are doing is okay, with enough calcuim through other things, etc.  When I mentioned the possible wheat (as well as carrots, fruit juice) intolerence my Mum, who happened to be able to come too as DH was working away, mentioned my sister had a wheat intolerence, which I had forgotten!  The dietician said that as DS was still young she would prefer to get him referred and tested, rather than do an illimination diet (Also, as he may be uncomfortable with certain foods she would rather get it sorted).  I went to the doctor on Monday morning and he put in a referral without any pursuasion

Hopefully we will get our appointment through and I can let you know what the hospital says