Intolerant Children - seeing the experts - For Bet

[Pam]

Bet wrote
My daughter who is 4 and allergic to milk and soya has an appt with a paediatrician (and possibly a dietician) tomorrow so we can discuss her problems as we recently realised she has an allergy to soya as well as milk.

For the last few weeks I have had to put up with my mother-in-laws constant questions and unhelpful remarks about my daughters 'allergy' - as in has she really got one? She keeps going on about the urgency of sorting her diet out because 'she cant be getting the right foods at the moment' and 'I really need to sort her diet out with someone who is qualified so she can start eating properly'.

Whatever I say she just wont listen and I really feel like I am incapable of looking after her properly and that the 'allergy' is all made up in my own mind. Why should I have to put up with her ignorance? Does anyone else have to suffer the same? She makes me feel so inadequate.

Also, has anyone else been referred to a paediatrician with their child? I'm not sure what to expect or what help they can be. As far as I'm aware there is no cure and the only treatment is total elimination. My husband keeps going on about possible other problems with her which affect her ability to digest food - ie problems with her gut - but from everything I've read / researched so far Charlotte is a classic case of a milk / soya allergic child.

Has anyone got any good advise because I really feel like I need some at present!!!!!!!!!!!

Thanks,

Bet (stressed out and trying hard not to scream)!!

I've put this on a separate thread because it would be more easily seen than in Lan's diary. I will reply to it better later but I've just come home from a weekend away and have loads to do right now.

I am all too familiar with doubting relatives (and professionals), the self doubt, what if's and all the rest of the guilty feelings. We've done the doctors, dieticians but never been offered the paediatrician (but from previous experience they're not worth seeing anyway). So I've got lots to say and promise I will do within the next 24 hours. Watch this space.

[Pam]

In the very early days my daughter did nothing but cry. A health visitor suggested trying soya milk and she changed overnight. When I gradually started introducing milk into her diet during weaning from 6 months on there was nothing specific to say that she was still having problems but constipation was a constant problem and tantrums in the morning and at night were a real nuisance. We had a couple of major screaming fits in an afternoon, so much so that I booked emergency appointments at the doctors on both occasions, but was still no wiser. It wasn't until she was prescribed lactulose for constipation and had a violent reaction (major pain and screaming fit) that everything came together and I realised that I'd been feeding her all these evil foods for nearly a year.

Fortunately the doctor I saw was quite sypathetic and referred her to the dietician and prescribed more soya formula. Although the dietician gave me some useful lists of what not to eat she wasn't really much use and gave me some very bad advice (adding extra sugar and fat to my daughter's diet to make up for what she wasn't eating as she was a faddy eater). In the end I lost faith in the dietician, she knew less about dairy free living than I did and offered potentially dangerous advice. I stopped reporting to her, didn't follow her advice and consequently haven't heard from her for 2 years.

My experiences with paediatricians aren't much better. Both my boys were in special care after birth and were booked for follow up appointments as a matter of course. In both cases I went through the nightmare of getting to the hospital only to see one of the paediatrician's underlings (a different one every time we went) who had the baby weighed, went through his history, asked why we were there, said "fine" and told us to go back 3 months later. There was really no benefit in seeing them. A friend with a very slim 5 year old was referred to the paediatrician because the HV thought she was underweight, but the paediatrician more or less laughed and said my friend was offering a balanced diet and it was no reflection on her that her daughter was so petite.

The only real bonus of seeing someone higher up (eg paediatrician/dietician) is that they can ask the doctor to prescribe special milk so that you don't have to pay for it as some doctors are reluctant to part with any of their budget for such things. A dietician will also keep an eye on your daughter's calorie and calcium intake and advise you on how to ensure the intake is correct.

Going back to relatives, even my own husband didn't believe me about the hysterical screaming and pain that milk caused. He was either at work or out with his friends whenever she had a bad reaction. If you don't trust relatives, then provide your own food and ask that they don't give anything else. Encourage them to take an interest and look out for special foods for you and get them reading labels too. Also take advantage of manufacturers leaflets and information booklets, Alpro (Provamel) do some good ones as do most of the baby formula manufacturers. I know you are past that stage but you would probably still find the info useful.

If you want to know any more, ask here, someone is bound to be able to help.

[Lan]

Hi Bet,

I am so sorry to hear of your situation and can totally sympathise. I have been dairy free for 8 years now and still have to face the ignorance of others.

I have had people squirting air freshener around my room while I'm eating, as they think it smells badly (lot's of dairy free foods have garlic in) and people just making absolutely stupid comments about being dairy free. I.E i wish I could have an allergy, so I could lose weight easier. How stupid is that?

Please stick to your guns with your mother-in-law and let her read this forum, maybe then she will see what she is putting you through. She probably doesn't realise the strain and anxiety she is causing and needs an eye opener. My advice would be to keep patient and keep plodding on, as my mother recognised the food problem before I did, and I was 19!!!

I know it is hard but I find a good sense of humour is the best way to get you through. I am not trying to make a joke of your situation, but I know a good sense of humour has got me through some pretty rough times. I just try and ignore people and have a laugh afterwards at their sheer ignorance. This however took me sometime to achieve, as normally I would just feel really down and inadequate afterwards.

I hope you're situation improves and if you need anymore help, please do not hesitate to contact us.

Kind Regards and Take Care.


Lan.

P.S. Remember to keep your head up high and believe in yourself.

:hug:

[ann]

my daughter is 7 now and whilst very happy and bright and gorgeous ( well if her mother cant believe it who can!) she is severely allergic to milk. When she was weaned we gave her just the tip of a teaspoon of yoghurt and she went into anaphylactic shock. It wasnt until then that we were believed as we were fobbed off with colic as the excuse for her crying for so long (especially ass she was breast fed until then- but now i think it was the milk i was drinking making her allergic early on.

She too was a tiny baby and was tube fed formula at one point when i was too ill to feed her. Not sure if that was a problem.

She now sees a fantastic paed. doc. in newcastle. But to be honest the tests they do are a bit basic. Sometimes she gets blood tests which they say are not so reliable .

Other times they drip a bit of milk on her hand - if she doesnt react, they put a bit on her lip- if no reaction (never got this far yet) - they put some on her tongue, and so it goes until she drinks some without a reaction!

Anyway at first it is hard but you soon become a true dairy free expert. It does take a bit more planning ( kids parties I try to find out whats being served and provide similar dairy free- ask for a plate the same as the others are havinh)

Also you become really assertive when its for your kids- I think i have been in every restaurant kitchen in the Uk and read every packet they are going to serve her- but hey, now when we play tea shops my youngest ( who is always the waitress) is asked by my eldest if she can have a word with the chef to chek for nuts and dairy.

Keep watching this site - its really useful.
Dont worry about the mother in law- I bet her kids were potty trained at 6 months too!

Sounds to me like you are doing fine- being a parent is harder than the paid job i tell you- so just smile