very persistent allergic rhinits in 9 year old dd - any suggestions?

[geekgirl]

posting this here as well as in the Allergies forum - apologies!

dd1 (9) has been suffering with a permanently stuffy nose, itchy eyes and eczema around her eyes for about 2 years now.
She was a very atopic baby & toddler with moderate eczema and a monthly outbreak of hives, but then had a bit of a break from it all for a few years.
Anyway - this rhinitis is being perplexingly resistant to treatment - we've tried steroid spray (helped a little bit for a couple of weeks, then stopped working), sodium cromoglicate (ditto), oral antihistamines (still taking those, but with little effect on her nose - they do help with itchy skin she gets when she's been outside).
She's been seen by ENT and is due to have allergy testing in a couple of weeks.

I've just got her mite-proof bedding & mattress cover, removed her curtains, and generally cleared her room of soft toys, cushions etc. but it seems to have made no difference yet.

It affects her sleep quite badly as she is totally bunged up when she goes to bed, she tends to sleep in a cloud of Carvol which helps a little bit at least. Apparently it's also bad at school...

We have a cat (I know, I know) but we got him long after her symptoms started, and she doesn't seem to react to him (neither do I, and I have a proper cat allergy).

She's been given a Sinus Rinse kit and uses it religiously but doesn't think that it actually helps.

I am at a loss as to what exactly she is allergic to?! The ENT consultant said that the skin prick test isn't very accurate and comes up with a lot of false negatives, so I'm not holding out much hope for an answer from that.
I wonder whether it could be a food allergy as well as an airborne allergy, but apparently food allergies don't show up in skin prick testing very well?

She also gets 'chest tightness' occasionally where she feels like she can get enough air, but only had a wheezy asthma-type episode once for which I gave her some of my salbutamol and it settled down eventually. I checked her peak flow a few months ago and it was normal.

I've not really mentioned it to the GP because the proper wheeziness only happened once and generally it doesn't appear to be a big issue. The ENT consultant said she should be 'checked for asthma' - am I meant to take her to the GP? How can they 'check for asthma'?

Any suggestions or comments would be most gratefully received - I'm at my wits' end with it and she is so snuffly.

Bumping for you.

I do so hope the allergy testing helps. My child has only mild symptoms but I've had it since my 20s. After I had DS2 and my immune system was weakened, it became completely out of control for several months and made life absolutely miserable.

I take it you are avoiding otrivine and similar sprays because of their feedback effort (from the oxymetazoline tetrachloride)? There is a condition called rhinitus medicalosum (or similar Latin) which occurs when you keep using otrivine/sinex.

Where are her symptoms least bad? Mine ease up most by the sea in warmish weather.

Can I just add that my rhinitus turned into an anxiety issue in the end. I started getting panic attacks and was referred to a psychologist who unfortunately prescribed breathing exercises- duh!!!!!!!! as the mental health nurse said! So you may just want to keep an eye on how she feels about it/monitor your own responses to it, etc.

There are treatments - in the very early stages - to actually "cure" rhinitus now. It would probably involve both of you giving up your summer holidays because it involves complete withdrawal of all allergens (!) then they are reintroduced tiny bit by tiny bit. A lot to expect of a 9 year old.

I was going to suggest the sinus rinse/nasal washing but see you have had no joy. I did try the traditional type before finding one called nasopure worked well nasopure there are lots of helpful articles on their website aswell. The reason I found this one better is that you can squeeze the bottle to really push all the build up of mucous out.

Another thought is have you heard of medinose I have found that has made a very big difference with my hayfever - my 5 year old uses it too and it really works, he gets in worse in summer.It uses infared light - I think the full info is on Amazon or directly on the medinose website if interested.

Also if you are near a garden centre or pound shop, consider buying a plant spray bottle, fill with water and turn the nozzle to fine mist setting and spray your daughter, yourself, cats, furniture, around windows, furniture etc. to create a light rain to wash or dampen the allergen down. If really bad get her in the shower, wash her hair and change her clothes. That's why the sea is so good for sneezy people.

Coat inside of nostrils and eyelids (seperate pots) with balm, best not use vasaline there are lots of natural wax based ones that you can get in health food shops that will help act as a filter.

Lastly, you mention she has a wheezy episode, my dc2 has had a similar experience as he also has a condition called hypotonia and hypermobility (low muscle tone and high flexible joints) and having looked at how he breathes we realised he always has his jaw open so is a mouth breather he had a constant runny nose and got colds straight onto his chest and this method has re-taught him how to breathe correctly. There is a special and very simple book for children which I got from Amazon ABC book which we have both found fab.

I have had hayfever for nearly 30 years and found the gp's not really interested (unless they suffer with it too), I have tried all the conventional methods including steroid injections and all the hippy crap which I advise to avoid like the plague!

Hope some of this may help.

hello lingle, thanks for the message - that's really interesting, I didn't know about a possible cure. As you said though, not sure how feasible it would be?!

I haven't really worked out when she's better, although IIRC she was fine when we went to the Baltic for a week last year - don't recall any snuffliness. It does seem to come in ebbs and flows, thinking about it.

We don't use decongestant sprays - I've tried them occasionally and always get terrible rebound without fail so won't use them on me or the children.

My teenage cousin really suffers with dreadful eczema, asthma and hayfever and did a 4 week 'recuperation' in the Alps a couple of years ago - all organic food, lots of activities and low allergens - it did her a world of good but unfortunately after a couple of months back home she was back to 'normal'.

I wish I could just bloody work out what it is that sets dd1's nose off, although TBH I don't know what else I could do if it's dustmites...

Dairy! We have just switched to Soya (a week ago) and not a sign of green runny nose, night time cough all gone! It had been TERRIBLE for 9 months!

Ros, sorry hadn't refreshed last night so didn't see your message until I posted again - thanks for the many helpful suggestions. I think I might give the Medinose & the ointment up the nose a try.

The nasopure looks like it works in the same way like the Sinus Rinse we're using. I use it myself for sinusitis that just wouldn't shift and found it really pleasant (how weird am I?) and effective. I think maybe I'm expecting results too quickly for dd1.

having figured out that it ebbs and flows, it might be worth keeping records - but bear in mind the need not to make her more anxious. My ENT consultant said it varies a lot over the course of a lifetime.

Hi Geekgirl, not weird at all my dc2 has used the nasopure and finds it fine to use as he doesn't need to do weird contortions with his head to get it through the other nostril, I"m sure you know this but we've found very warm water with a little seasalt seems to help the cleansing effect rather than cold.

I think I read on the neti website somewhere that it may also be useful to make the 'k' sound while rinsing so as block the water from being swallowed.

Not sure what the price is on the medinose website compared to amazon but so confident are they, they offer a full refund if you don't get results - I can't remember if it's 30 days or 90 days.

Best of luck