taking dd to drs with these symptoms, which have gone on for months-I would welcome anyone's thoughts

[hazeyjane]

very pale
dark shadows under eyes
tired/irritable/weepy]
terrible breath
yellow coating on tongue
poor teeth (dentist said weak enamel)
spots, especially on legs hands and round mouth (she scratches them and they bleed a lot)
sore bottom
loose poos
very waxy ears (has trouble hearing)
constantly stuffed up nose
cold sores round her mouth
she has lost weight, but eats a lot and is always hungry

She is 5 years old, but looks like a junkie

Last time I took her, the dr said to have her ears syringed (but nurse said too young), and that she probably had a virus. I took her back and she said she probably just needed some sleep. But this has been going on for months and months.

Annoyingly, she has just come down with a virus, and looks even worse than normal, so I think the dr is going to focus on that.

These symptoms aren't normal though, are they?

You need to get to the bottom of this. It may well be that she's just had a bad run of viruses, but I'd want her seen by paeds, and a couple of blood tests too (eg is she anaemic?) Any family history of bowel disease/crohn's?

As far as the ears go - I worked in ENT a while back and bog standard olive oil's actually the best way to go as not irritant like some of the other drops you can get. Once it's runny enough, the wax will come out.

It sounds like a coeliac type thing to me (not medical but experience thereof).

The trouble is getting the diagnosis means continuing to eat the very thing that could be making her ill.

Would be worth doing a food diary and seeing if she has stomach ache that relates.

Poor thing, she must feel wretched.

My two year old has been referred to a paed for tests to see if she has coeliacs disease. The symptoms that led the doctor to be concerned were:

very pale
lethargic
tired/irritable
(these first three all turned out to be down to aneamia which is one of the symptoms of coeliacs)
loose poos which are quite pale
mouth ulcers (she does not have bad breath but the doc asked about it as it is a symptom)
loss of weight
stomach pains

Dental enamel defects are also a known symptom of coeliacs. My MiL has coeliacs and has had a lot of dental work as a result.

If I were you I would insist on a paed referall and test for coeliacs.

These things may not be linked to one another. Some people do have dark pigmentation under the eyes, but it could be caused by an illness or simply tiredness.

The skin related stuff could be due to malnutrition and diseases such as coeliac can cause the body to be malnourished as can a host of other things which need to be ruled in/out.

Mouth sores can sometimes be scurvy - my sister had this because she didn't eat enough fruit and veg, i.e. Vitamin C when she was small despite it being offered. They could be due to poor condition in general such as one experiences after having a run of colds or viruses.

As non doctors I don't know that we can help piece this all together for you as the symptoms are quite wide and varied but do sound as though your child is run down at least. Have you tried giving that tonic stuff that HVs often prescribe, begins with M I think and may be very old fashioned but it might help.

I wonder if this warrants a host of blood tests ordered by GP. It's not much fun taking little ones for blood tests (as we have just done with our DD) but may well be needed if the symptoms don't paint a clear picture.

Hope you get some answers soon.

With Coeliac disease (which is an auto immune condition and not an allergy or intolerance) a blood test will confirm either way (though a small number of people will require a second type of test in order to confirm if the standard one is negative) and it is important to continue to eat gluten containing foods until testing takes place.

As everyone else has said, in children it can affect teeth, it causes loose stools and mucousy stools, tummy pain, tiredness... Essentially the body can eat lots of healthy food but the way it passes through the digestive system means that the nutrients aren't removed fully so it's like being on the crappiest nutrient devoid diet and so you will have symptoms of a person who isn't getting all the nutrition he needs.

Thankyou, I suppose I just wanted to know that I'm not being a neurotic mother!

They are the sort of symptoms that can be explained away by tiredness, viruses etc, but it has gone on for such a long time and she looks so ragged that I just feel as though there must be something else.

Dh has had a bad reaction to wheat in the past when he is stressed, and my mum and sister have IBS, but as far as I know there is no history of coeliac in our families. She does eat a lot of wheat, she has been very fussy in the past so I guess i have fallen into a pattern of giving her what I know she will eat -cereal, sandwiches for lunch, pasta for tea.

Her teeth are awful, and kind of discoloured, it is interesting to see that this can be a symptom. I worry that people think I don't look after her properly, or give her tons of sweets!

She has vitamins every day, and I have tried her with Minadex, and she does eat a lot of fruit and veg.

I have been using olive oil in her ears, but the wax seems to build up really quickly, and I spend half the day repeating myself because she can't hear me!

I will see what the dr says, but I know they are reluctant to take bloods from little ones, and it would be horrible for her.

No, you are not a neurotic mother. I have battled with gp's for 9 months trying to get help for my 20 month old daughter who was chronically sick with tonsils. They have absolutely no interest in getting to the bottom of what is going on, no interest in finding the inderlying cause and I hate to read your story now too.
Please go back to your GP and push really hard for a referral to a specialist. It is not acceptable that they are not doing more for your daughter. You have to be extremely tough and battle all the way I am afraid. It sounds like she is suffering and she needs more help. Good luck, be strong and demand more help for your dd!

Thankyou for your message, Oink.

I saw our family dr earlier (she was away for previous appointments), who listened to my list, looked dd over and made an appointment for a blood test next Tues and a referral to a paed to follow on.

I'm glad I posted earlier, as it made me realise that there could be something else going on.

We are in a big waiting process with our ds atm, with lots of hospital appointments coming up. I'm glad that the dr has taken us seriously as regards dd1, and taken steps, but feel we are going to have our own wing at the hospital soon!

Excellent work! Keep up the battle and never give in esp when you feel there is more going on with your dd.

Hope they find the underlying cause and she is on track to full health soon! :)

Glad to hear you've got a blood test and referral planned. I have two DSs with Coeliac Disease and the symptoms do seem pretty similar.

For the blood test you can have EMLA cream which numbs the area in about 30-45 mins or there is a spray which freezes the arm instantly then the blood test can be done.

Can I ask what the spots are like - are they blistery/itchy?

Best of luck with getting some answers.

poor kid sounds horrible I think you are right and there is something underlying glad you are going to be seen.

Just wondered if the coated tongue and sore bottom could be thrush. If it is it's probably as a result of the other problem rather than a cause but it might be worth checking If that can be treated then at least it'll be one less symptom for her to deal with.

booner, the spots seem them to start as lumps, and are definitely itchy, but they don't seem blistery or pus filled (yuk). Dd sctratches and picks at them and then they bleed profusely. The dr seemed non-plussed by them and said to continue with Aveeno (which sh has for eczema) and prescribed an antihistamine to stop her scratching them.

She also gave us the emla cream and said it might be an idea for dh to come along and help, as it would be pretty horrible for dd.

Can I ask, did your ds's always have symptoms, or did they accumulate over time? Also, were they always tired and lethargic, or were they sometimes quite hyper and 'jittery'? ( I hope you don't mind me asking.)

bumble34, good thought about the thrush. I will call the dr later and ask her. Dd did have thrush when she was a baby.

Gluten intolerance can also cause these symptoms, so bear that in mind in case the test is neg for celiac. And yes, the symptoms accumulate.
If she is eating wheat then she won't be absorbing the vits, that's the prob with gluten, it covers the gut with glu-like indigestible coating and she won't be able to absorb all you give her.
My ds had same symptoms (plus more), the tests were neg and despite that we went gf and it was totally mind-blowing if not miraculous how things have improved.
Thrush also linked to zinc deficiency which is caused by gluten.
And it could be as simple as gluten overload - before it goes autoimmune, coz the problems do build up the more you eat it - which is what drs advise to do .

Do keep a diary. Food, days when super tired, etc... Everything.

And just keep going to the Drs until they agree to a referral. Mention what you think it might be so there is a starting point.

Last year my DS2 was horribly sick for 3 months. The Dr's insisted it was viral. It wasn't and the diary keeping really helped cos the HV read it and made an educated guess and got them to refer us straight away.

Good luck. Let us boost your confidence if you have to do battle with Dr's. And please update on how your DD is. Hope things begin to improve for her quickly.

Hi, could I suggest that for the bloodtest you buy a new playbook for ther with lots of noisy buttons (ideally something from a TV series she likes). When they have to do the bloodtest sit her on your lap with her head over your shoulder, the doctor will check both arms to see where they find a vein easiest. Say the doctor wants her right arm and probably lays it flat on a table to easier get to the vein, then you put her head over your left shoulder (hold it with your hand so she cannot look at what the doctor is doing) and ask a nurse or ideally your husband to hold the book behind you well within dd's reach and ask her to push the buttons (tell her which buttons you want her to push so she has to listen and focus on you, say, push trumpet, push rock guitar, you know,whatever the buttons are). Key is LOTS OF LOTS DISTRACTION, I had to do this many times as dd had to have canulas. It was exhausting, but it worked, literally dd did not give a peep. Also, big hug and if possible a present for being so brave afterwards. I like books which are noisy because it drowns out the doctor and nurse talking to each other. I would beforehand (not right before) but may be a few hours before explain to her that she will see the doctor who needs to check her to make her better. What was most difficult for us, that dd had heard other kids screaming when they were in the little side room where they inserted cannulas and took blood. So she did feel anxious going in, but I just kept saying 'mommy stays with you, you stay with mommy, we are going to look at this really new and exciting book, have you ever heard of xxxx (she had), oh, mommy does not know it, can you push this button? and what is that button? oh, try that one?' and keep doing that until the doctor is ready. While in hospital, there was another mother beside herself when her ds had taken his cannula out, the nurse and mom asked if I could hold him while they put in a new cannula and I did the same with him, it worked and he barely noticed the cannula and certainly didn't cry). So try to be prepared, many noisy books are for pre-school children (zingzillas etc.) I don't think that that matters if you cannot find anything else, because they might actually find it quite reassuring. Good luck and hopefully you will now find out what is bothering your dd.

I have a coeliac ds and your list of symptoms rang a few bells.
There's a skin condition called dermatitis herprtiformis which causes intense itching and is associated with coeliac as well. Google it and see if it looks similar. Ds 2 doesn't have this, but I've read about it.
Ds2 was diagnosed with coeliac just before his 2nd birthday.

Hope you get a diagnosis soon, whatever it is.

hazeyjane, we've had two different experiences but both boys were eventually diagnosed with Coeliac Disease.

My eldest started aged 4.9 with intensely itchy (looked like small raised blisters in groups) rash on arms and legs. Then my youngest started with it aged 2.5- could not work out what it was. I am now pretty convinced it was dermatitis herpetiformis.

My youngest then started nursery and got as we thought all the usual colds, viruses etc and was constantly run down with running nose.

Over about 9 months he went from being pink and healthy with enough toddler chubbiness and energy to

very pale
dark circles under eyes
seriously lacking in energy - said his legs hurt and needed carrying everywhere and upstairs to bed
lack of flesh anywhere, legs were emaciated, flat buttocks,
Very irritable, prone to bursting into tears a lot.
Unsociable, like to sit on my knee when we were out.
really bloated stomach, loose acrid stools and lots of wind
Said his tummy hurt
Poor appetite or interest in trying new foods
waking up several times a night

He did have bursts of energy because he loves football but then had to lie down.

All this was a slow decline and over the winter time but when you stood back and properly looked at him you could tell that there was something going on. When we got referred his weight was the same as it had been 12 months previously.

Our doctor's mother has coeliac disease so she referred him for tests and it came back positive.

Only when the youngest was improving on the gluten free diet did we notice that our eldest was looking quite pale with dark circles under his eyes. He had absolutely no digestive symptoms and wasn't losing weight or looking thin but as coeliac disease can be hereditary he was tested as well and also came out positive.

Happy to answer any other questions. I have a terrible memory and I think a diary would be a great idea to keep a track of things and refer back to.

Don't get fobbed off and also make sure you know what they are testing for or have tested for with the blood tests.

dikkertjedap - good tips about the blood test. A new book is a brilliant idea and I am going to get her a present for afterwards. Fortunately our gp is very good, and has booked an appointment with the nurse at the same time, so she can assist.

Booner - thankyou for all the info about your ds's. The bit on your list about tired legs rings bells, dd often cries about her legs hurting and lies at the bottom of the stairs crying wanting to be carried up. Also thankyou for reminding me to ask what the blood tests are for! The dr mentioned coeliacs, but I'm guessing they will test other things too?

bumply - I googled the dermatitis, and the spots individually do look very similar, i think she scratches them so quickly that I don't notice whether they are blistered or not, but her spots are individual, and not in clusters, so not sure.

Pancakeflipper - good idea about the diary, I have to keep one for ds, so I will start one for dd1.

Thankyou everyone.

Just to update you, dd1 had her blood test this morning - red blood count, thyroid, inflammation markers and coeliac test.

Dr said all but the coeliac test should be back by the end of the week, and she would call me.

Dd1 was amazing, watched the whole procedure and didn't even cry. I was so proud of her, the dr needed some of the chocolate eggs that I had bought dd though, I think she found the whole thing far more traumatic!