L I test normal, now what?

[PurpleDana]

Just got my dd's lactose intolerance results back and they were normal. I know I should be relieved and it is good news, but I can't help feeling like we are back at square one. We are battling to treat / minimise her eczema and reflux but not the cause. And she is still suffering so much.
We have an appt with dermatologist but it's not til feb. I've booked to go back to gp 10th jan.
Does anyone have any advice about what else we could do?

What are your daughters symptoms and have you had any other tests or tried eliminating any other foods? Lactose intolerance is actually quite rare in the west - cows milk allergy is a lot more common, and a common underlying cause of reflux. What age is yr daughter?

Our health team won't let us do skin prick tests until we have tried elimination diets and food diaries - they say they are not reliable enough and can give false positives/negatives. We sussed out dairy, soya and egg allergies with elimination diet and thorough food diary.

Basically we cut out all common allergens and ate plain food for a few weeks, then introduced allergens one by one and noted any side effects. It's a pain but a reliable way to find out what's causing the problem.

Hope that's helpful! Give me a shout if you need any recipe ideas or anything x

She's 17wks. Formula fed so nothing to eliminate yet! I asked about cmpa but it was dismissed. Would that not have been tested through the same stool sample?
Previous diagnosis of eczema and reflux so we have gaviscon, zerobase and hydrocortisone cream. Also had antibiotics as her skin looked infected.
Eczema is spreading very rapidly.
Reflux - excessive sickiness, continually, uncomfortable during feeds and afterwards, screaming, rigidness, fussiness, wind, unsatisfactory weight-gain...
The pain accompanying the reflux has lessened due to the gaviscon bit she is still very sicky

Sounds like you are having a rough time. Try to remember once y have this sorted she will recover totally from her symptoms and won't remember a thing about it!

Sounds v like my daughters' cmp allergy symptoms. And reflux often symptomatic of cmp allergy. Stool sample wouldn't have picked this up - it looks for presence of lactose as if LI the lactose will come straight back out in poo. Cmp is different. Best way of telling is to eliminate it from diet. Your daughter is too young to try soya formula (6 months plus) but yr doc could prescribe a formula that has the cmp broken down - nutramigen is usually the first port of call, or neocate. You can buy these yourself from chemist but v expensive - one tin of neocate is about £40.

GPs tend to have v little knowledge about allergies in my experience. I would be asking for referral to dietician - your health visitor or your Gp can do this. You may be able to self refer too. Dietician may recommend the special formula.

With my daughters, I spoke to a dietician at a weaning fair and she told me to ask the Gp for nutramigen. I did and doc prescribed it for me. It helped a bit but my first daughter ended up on soya formula as she was also allergic to nutramigen and neocate. Second daughter allergic to soya but could handle neocate.

Worth phoning doc and asking for a script? Allergy milks wouldn't harm your daughter, just might not help if it's not cmp allergy causing probs. they are nutritionally complete but have the cmp broken down. worth a shot?

I agree it's worth a shot, convincing the doctors is a different story! They look at u like u are so neurotic! Senior Prescribing Nurse who I have seen the last 2 times and has been the most helpful told me that nothing will be prescribed unless we have a positive test result or recommendation from dermatologist (who we won't see until feb)

Can you pick your most persuadable Gp and insist? Maybe cry? Prob won't be too hard!
Failing that try hv?

I will definitely try. But as I mentioned, first available appt for gp is 8th jan. Would it be worth trying infasoy in the meantime?
It's so frustrating cos if it was an adult or an older child with tummy troubles and severe eczema, I know the first thing gp would say is cut out dairy!

You could try infasoy or wysoy. Trouble is, one in ten kids with cmp allergy are also allergic to soya. But then any allergic reaction to soya is unlikely to be any worse than what you are going through already.
Dieticians advise no soya til six months, because it is an allergen. I think the earlier they are exposed to allergens the more likely they are to become allergic to them. But I'm not sure what evidence there is for that.

And my first daughter was on wysoy from about 20 weeks - we had a gung-ho gp who tried her on that first (before dietician whipped her off it). Turned out it ws the right thing for her and she returned to it soon after, and stayed on it til she was two.

In short, if it was me and I absolutely couldn't get a prescription from anyone medical, I would consider paying for a tin of nutramigen myself, to establish if it is in fact cmp allergy. After a few days on that, if it works, I would present that as evidence over the phone to the doc, or to an out of hours doc if yr Gp won't listen, and try to get a prescription to get more. Let me just double check what kind of nutramigen. Your chemist will prob have to order it in for you.

The kind to ask for is nutramigen lipil 1. Had a quick google - can get it on amazon for £14 a tin. I wouldn't dream of doing that because god knows where it comes from, but might give you an idea of what a chemist would charge.
All the best!

Ps don't expect the eczema to clear up straight away - can take a couple of weeks after exposure to allergen to start to clear up. But if it's dairy that is bothering your baby the gastric symptoms could start to improve straight away. My daughter improved like magic within 24 hours of switching from dairy to soya formula - poo went from green diarrhoea to brown porridge within hours, and wind, wriggling etc all calmed down overnight.

Fantastic. Thanks auntierosemary, so helpful :-)
I think we'll go for the soy tomoro, then if no change try and get hold of some nutramigen.

Good luck! Comeback and give us an update. Fingers crossed for you x