Confusing Dietician

[James' mum]

Hello everyone,

I am new to this website and am so pleased that I came across it as we are in a right pickle!

My son James (12weeks) was diagnosed as lactose intolerant at 8 weeks after a hospital admission due to symptoms of reflux (a chocking style cough), diarrohea and sickness. I was recommended to put him on SMA LF and luckily saw a locum dr at the surgery who prescribed it (a decent quota I might add!) He was a different baby and we finally started enjoying him.

However dietician has finally been in touch and fussed about the fact that he hasn't had any official testing. She told us to take him off SMA LF and instead use Enfamil AR which is for refulx babies. Well the result was a total disaster was back came screaming, in awful pain, James. I rang her after the weekend and told her results. She then decided (having NEVER seen James) that he was milk intolerant too and put him on Nutramigen, a hypoallergenic formula. He was projectile vomiting from the first feed and was disguisted by the taste. In desperation we then put him on SMA White only to have him screaming again!

Now we have gone back to SMA LF and he is settling down again after the upset but I daren't tell the dietician that we went against her advise, ridiculous isn't it?! She really rocked our confidence with James and made us wonder if we had made up lactose intolerance!

Really I just wanted to know if it is normal to have such strange reactions even to the hypoallergenic formula and whether it seems we are right to keep him on SMA LF. Also if anyone has any advice as to whether this is likely to be a permanent condition that would be great. Oh and anything on weaning, don't ask much do I?!

I also have a 2 year old daughter and we have never dealt with anything like this before. I would just be grateful for any advice or tips anyone is able to give.

Thanks for reading this huge message,
Rachel

P.S James is a very big boy (born 10lbs 15ozs now over 19lbs!) and hence takes lots of bottles a day (is only able to go 2.5hrs between feeds, day and night). Would it make sense that SMA LF does not fill him up as much as a 'traditional' milk like SMA White would have done?

THANK YOU!

[matt]

i've no experience of feeding children the various types so can't give advice there.

i would personnally let the dietician know. write down exact (or as near as possible) times and days as to the various feeds and the reactions. then you are armed with a basic exclusion diet with reintroductions and reactions. she can't ignore that or if she does go over her head. you also need to give the same info to your gp. one or the other should then prescribe the one you are getting on well with. again if they don't get 2nd opinion.
it's not like you ignored their advice you tried got a bad reaction and tried something else. the fault lies with them for not telling you to do this and reassuring you.
you do have to try these things just to establish whether certain things cause reactions. it isn't pleasant but it needs to be done.

have faith and stay calm and get on the phone to them today.
good luck.

[Pam]

I'll second what Matt says, write a diary so that you have all the facts clear in your mind when you report back.

I've found that dieticians can be surprisingly unknowledgeable when it comes to milk intolerances, by the time I got to see one with my daughter, I knew more about it than the dietician did and apart from providing a good list of milk derivatives she was little help to us. My health authority don't do any testing as these tests are not particularly reliable especially for intolerances where the reaction may not be as specific as an allergy. We were simply told to try exclusion and reintroduction (which is basically what you have done).

I would stick to your guns, see the GP for more SMA LF and tell him what happened and report back to the dietician. I'm surprised at the reaction to Nutramigen as this is supposed to be a 'safe' formula, though I have heard that it tastes and smells foul.

There's no saying whether he will grow out of this problem, a lot of people are stuck with it for life or may find that they can tolerate smaller amounts later on. Sometimes people can be struck with a temporary lactose intolerance after a stomach upset where the gut rejects all milk products until it manages to rebalance itself and then gradual reintroduction causes no further problems.

As he grows up, if he is still needing to avoid milk you will find that you need to think about what you feed him more and do a lot more label checking. Most manufactured baby foods are labelled with the main allergens so it will be easy to see which contain milk. You can convert most conventional recipes to dairy free by subsitituting soya milk and dairy free spread so with a little bit of planning you will manage.

[nikkie]

Hi im also a mother of a 8 month old who has a milk and lactose intolarance,
i do know how your feeling with this its hard when you know he is ill or something is wrong and some poeple think your worrying to much ! for two months when my son ellis was born it was a battle zone screaming, vomiting poo a diferent colour eg: (he had white hard bits in it) sorry if that sounds bad but i just knew so in the end i took him to hospital they kept him in and after all that they told me that they didnt think he had any allergys he was fine my doctor at the time also did not want to do a allergy test as he has reports from the hospital so in the end i found a allergy support group they were great told me i could get the test done my self so i did it cost me £40 but it was very well worth it as i knew what to give him he was on wysoy at the time and it was going right through him so i tryed cow and gate infasoya can by it in boots he has been great on it but as you know every baby is different i have been told that most kids do grow out of these type of allergys i know a freind whos child had it then at 4 years old it all changed and he eats everything and anything all i do with ellis is every now and then i try him with stuff containing milk he can manage a yogurt as it hasnt got alot of lactose in it but anything else he brings up so i just stick to soya stuff it would help to get him tested as you will know then what is ok for him hope it all gos well x

[Lan]

Hi James mum,

I would definitely stick to your guns. When I was diagnosed as intolerant to milk and allergic to caffeine and citrus it was due to my mum.

At 19 I became ill and my mother was certain it was food where as I thought it was alcohol. She helped me fight against doctors who thought I was making it up. I would never even have thought about foods if it wasn't for my mum, and at that time food allergies/intolerances were not common.

Mothers know best and please believe that.

Kind Regards,

Lan. :D

[James' mum]

Thank you so much to you all for your help! It's amazing how sometimes you just need someone to tell you that you are doing the right thing, particularly when dealing with what is still a young baby.

Today was my daughter Lauren's 2nd birthday so I didn't get a chance to ring the dietician but will do tomorrow now I am feeling a little stronger! James is thankfully starting to settle down having had a couple of days to get the strange milks out of his system. I am still amazed that the dietician was so free with giving me different milks without even seeing James, I can only presume that she thinks all babies conform to the same symptoms.

I forgot to mention in last post that I ended up at drs with James yesterday to get advice re putting him back on SMA LF. It was the most useless hour of my life as had a wait for 50mins (due to James screaming) only for dr to tell me there was nothing he could say as it was not his speciality! I thought drs were supposed to have come idea about everything or at least were meant to TRY and help!

Anyway, thank you so much again, this website is fantastic and you are all so very kind and helpful.

Rachel

[Pam]

Unfortunately GPs are jacks of all trades as far as sickness goes. Unless they have a special interest they are not experts in food intolerances, so he was probably right in saying that it was not his speciality. I have come across some very disbelieving GPs and I'm sure some of them think you are just a neurotic mum and give you the prescription so that you will go away. I also find that a lot of dieticians will quote text book at you but will not really be aware of real life food intolerances, they seem to think that if the symptoms are not 'classic' then the intolerance is not real. They often fail to realise that intolerance symptoms can be anything from diarrhoea to constipation, lethargy to hyperactivity, weight loss to weight gain, headaches, exzema, irritability etc. (the list is endless).

The best way forward is for you to keep food diaries and keep a note of any changes, or introduction of new foods (a bit of a pain but it will be helpful). Stick with your gut feelings, you have now proved that changing milks caused problems and the dietician should take this on board. Hopefully the dietician will listen to your observations and will now help you to move forward in a more constructive way. If you really find that you are not getting the help you need, then contact Allergy UK who can help you to find professionals who do take food intolerances seriously. Keep coming back here too, most of us have been through the process of trying to persuade someone that an intolerance is real and we have all picked up lots of information about suitable foods and where to buy them, so as James gets older you should be able to deal with his problem more easily (and it does get easier, honestly).

[Lan]

Hi Rachel,

Would like to say happy birthday to Lauren for yesterday. Hope she had a great day,.

Kind Regards,


Lan. :lol2:

[James' mum]

Thank you very much.

Lauren had a fantastic day, really enjoyed the fuss and a little party with a few friends in the afternoon.

Also had success with dietician. She was far more understanding than I gave her credit for. She checked that I had got SMA LF on prescription (and said she would have arranged it to be on prescription if not!) and has now given me a thickener to try with James' milk to try and keep a bit more of it down. It's called Thick&Easy and it doesn't contain any lactose etc so shouldn't upset him. It doesn't seem to thicken the milk much but neither does it seem to particularly upset him so we'll stick with it and see what happens! I am getting pretty fed up with changing clothes every few hours due to being sicked on so am willing to give anything a go!

Thank you to you all once again for your kindness and help,
Rachel

[Pam]

If thick and easy is anything like Gaviscon powder it thickens up when it gets into the gut. I think the enzymes in our bodies do something and react with it so that it bulks up. My boys used to need gaviscon powder in their milk to stop them being sick, but if they only partially drank a bottle the rest would get really thick, maybe from their saliva. It seemed to do the trick and they definitley filled up easier with it. I used to feed the boys with towels draped all over to catch the huge amount of undigested milk that came straight back out again (I'm sure it doubled in quantity before it came back), strangely though, my daughter who is the milk intolerant one was never a sicky baby.

[James' mum]

Hello again!

James used to have Gaviscon powder but it never quite did the trick, apparantly it doesn't always for babies with severe reflux as it sometimes sits on the surface of the milk rather than thickening the milk itself. This thick&easy stuff is intended for old people who have difficulty in swallowing.

Unfortunately the dietician didn't tell us when to add it, eg before or after bottle is heated/made up. I wonder if I am doing it wrong and that is why it doesn't seem to thicken the milk at all. We tried adding more to just plain water as an experiment and it certainly thickened that! I can't ring until Tuesday due to the b.h which is a bit of a pain.

On the up side have just put James down for a nap in his cot and for the first time ever he has gone down without the usual 15mins of screaming!

I still can't believe how wonderfully helpful, kind and reassuring you all are, may I thank you once again!

Rachel