dd1 - 6 - tired, tearful, split nails, spots, dark circles.....

[hazeyjane]

....runny stools, always complaining of tummy ache, generally looks very tired, scrawny and unwell. She seems to have periods of a few weeks where she is like this. She had blood tests last year to see whether she was coeliac, which came back negative. The gp thought she probably had an underlying infection, but she has continued to have long periods where she is really under the weather, and it is starting to affect school.

Does anyone have any ideas?

I know this is really obvious, but just to rule it out - what's her diet like, does she take extra vitamins and minerals and how many hours does she sleep each night?

could it be an intollerance? you mentioned that she had blood test for coeliac, does she have wheat? even if not coeliac should could be intollerant - the only thing you could do is cut out foods you suspect and see if there is an improvement, GP may be able to offer guidance.

If you feel the 'diagnosis' of underlying infection isn't right or its been going on too long go with your gut instinct - you know your DD best x

thankyou.

Her diet is ok, she eats well, and has fruit and veg and isn't half as fussy as her younger sister. I give her a vitamin supplement, just the basic Boots one. She sleeps between 7 and 6.30ish, but she is a restless sleeper, sleepwalks and has nightmares.

I have thought about intolerances, and wondered about gluten, but if it was an intolerance i would have thought she would have the symptoms constantly, rather than intermittently. I have made an appointment to talk to our gp next week, she just looks so rough and is very down, it breaks my heart.

I can't help but just wanted to sympathise. Poor little thing, and poor you x

poor you OP

my DS 4.5 had been pale since starting school, exhausted really, so I took it way back to basics:

upped the rest time in afternoons,
upped the cuddles,
upped the positive tone of speech when talking with him,
upped the love and attention from me 150% basically

AND gave him a small omlette each day for breakfast

and a good hot chocolate for afternoon tea, then his regular other meals as usual

basically increased some healthy goodies in between his regular meals - milk and eggs

and just took the pressure off him a bit, he has a lot to deal with in a day for one so young

have made myself available 150% for chats and time together. simple things. no long afternoons out and about, just time together.

amazing but he has improved tremendously in 4 mths rosier cheeks, happier all round

is there anything else going on you could think of? school stuff? what does she do when she finished school? too many extra curriculars?

i would get 2nd opinion from doctor also

look after yourself too wont you

maybe a fruit allergy?

maybe start cutting out certain fruits a week at a time or other foods you think could be causing the upset and see?

go with YOUR gut instinct, it is usually right

have a think about food intollerances, I think it depends on quanitity of the offending food as to how they react - dh is wheat intollerant can have a couple of slices of bread and feel ok, is shocking after a bowl of pasta (stomach pain etc) - maybe a food diary - key is not to change too much (thats what I've done in the past and not known what has helped!)

All those symptoms point to coeliac disease for me (I have 3 DDs who are all coeliac). Blood tests can show a false negative for coeliac, particularly in children. I would go back to the GP and ask for a referral to a paediatrician and a repeat blood test at the same time. Then, even if the blood test is negative, ask the paediatrician to investigate further - this may involve an endoscopy, which is the sure-fire way to diagnose coeliac. The paediatrician may refer you to a dietician as well.

DD1 had very similar symptoms to what you describe - she had also not gained any weight for over a year by the time she was diagnosed. Her symptoms also used to come and go - in fact between receiving the results of her blood tests, which indicated coeliac disease, and her endoscopy (during which time she had to keep on eating normally), her symptoms completely disappeared, right up to the day before, when they returned with a vengeance. Within two weeks of the confirmed diagnosis (which we got on the day of her endoscopy), she was a changed child - masses of energy, eating with a relish I'd never seen before, no more awful constipation or chronic diarrhoea and no more vomiting.

Just a word of warning - if you do decide to remove gluten from her diet to see if it makes any difference and her health improves, you would then need to put her back on a gluten diet in order to have coeliac disease properly diagnosed. A formal diagnosis for coeliac disease is quite important, not least because you can then get gluten free food on prescription, but your DD would also have annual check-ups to ensure that she remains healthy.

Best of luck - I know how horrid it is to feel that there is something wrong, but not know how to put it right. Happy to help further if you have any other queries.

thankyou again for your replies.

Belleflowers - she is a very sensitive soul, and it has been a tough time for the family for the last year really. Ds (22 months) has been in and out of hospital and undergoing a variety of tests to determine whether he has a genetic condition which causes his developmental delays and other problems. I have definitely been stressed and distracted and dd2 has become more clingy as a result of me having had to stay in hospital with ds. I think that dd1 is the sort that bottles things up, she doesn't throw strops or have massive tantrums, but she will sob quietly and wake in the night having had awful nightmares. We have a really amazing gp, who really believes in treating us as a family, so I have called her and asked her to ring back. The school know about ds and the stress that it has put us under, so they let us take the dds out of school at the end of last term so that we could have a family break (ds was in hospital over half term and Christmas), and her teacher is very understanding. We only do one after school activity (swimming), otherwise i try and keep it low key, maybe have a friend over for tea ocassionally, but otherwise it is usually, snack, duvet on the sofa,cuddles and a film when they comes home from school.

incywincyspideragain - a food diary is a good idea, I will start this today.

tkband3 - it is interesting that the coeliac test is not conclusive, as I must admit that this was originally my gut instinct. Last year when she had the original test, she had been losing weight, and looking very skinny (she weighed less than her younger sister), her legs were also covered in tiny spots which would bleed a lot when she scratched them. She is starting to look a lot like that again, but a couple of months ago, she looked great, rosy cheeked, a little bit of a belly on her, no dark shadows and always smiling and laughing. She is like a shadow of that girl at the moment.

I think if kids are getting enough sleep then dark circles tends to mean some sort of intolerance/allergy. Good luck

In a rush to go out, but got to answer this quickly because I have just been through something similar with my dd.

Last July she started looking very tired even after sleeping for 12 hours. Her behaviour quickly deteriorated and she became anti-social, grumpy, teary etc. When I monitored her sleep she was very, very restless and would wake up instantly if I so much as tried to tuck her in. She had a blood test done which came back normal except for very low levels of ferritin.

We were then referred to a sleep neurologist who ruled out sleep seizures. She then had her adenoids and tonsils removed because we thought she had sleep apnoea.

Her symptoms were getting worse - very pale, patchy skin, small pimply spots on her face, deep circles around her eyes, complaining of a sore tummy, sore legs and arms, loose stools, hair thinner. My GP was totally useless. I researched myself and in a last ditch attempt persuaded the GP to test for Coeliac. Unfortunately, at this stage my dd was completely unco-operative and refused to let them take blood over several appointments. The GP told us to try out a gluten free diet for a month (this is not recommended as you will have to re-introduce gluten in order to get an accurate blood test or biopsy). We are now two months into the gf diet and she is a different child - rosy cheeks, happy, energetic, glowing skin, bright eyes, no aches and pains. I can't tell you how happy I am to see her looking like this again.

In my mind it is obviously either coeliac or a strong intolerance to gluten. It started after an 11 hour overnight flight - apparently a stressful experience can trigger coeliac. She has basically been suffering from malnourishment for the last 7/8 months. Your dd's symptoms sound so similar to what we have been through and I know what an awful worry it is to see them like this. Hope it helps and good luck xx

thankyou asante, somehow i missed your post. i am so glad that your dd is doing well on a gluten free diet - they do sound similar. it is interesting what you say about stress triggering this, for dd i would say she started having these symproms when we first started noticing there were problems with ds.

i took dd1 to the dr, and she has referred her to the community paed to have her checked over, she thinks there may be some glue ear, and noticed that dd had a coating on her tongue and quite smelly breath, she weighed her and saw hat she hadn't put much weight on since this time last year. she will see a paed who we know via ds, so she will have an understanding of all the stuff that has been going on over the year for us as a family.

if it was something like an intolerance or coeliac, would it go in waves like this? ie she can seem ok for a few weeks and then slump for a few weeks?

Sorry for not coming back to this before...

Before DD1 was diagnosed, her symptoms definitely came in waves - to the extent that I was able to convince myself that there was nothing wrong with her...until the next bout of vomiting/constipation/diarrhoea. Between the positive blood test and the endoscopy, she seemed very well indeed - and I was completely sceptical about the blood test and even questioned whether or not it was worth doing the endoscopy - then the day before the procedure, the symptoms came back with a vengeance!

By the time DD1 was diagnosed, she hadn't gained any weight in over a year. What we thought was her cute little tubby belly, was actually evidence of malnutrition - her body simply wasn't retaining any nutrients from any of the food she ate due to the damage caused by the coeliac disease. Yet, as I said before, within two weeks she was a changed child, with boundless energy and an appetite I'd never seen before - I used to have to leave the room whilst she ate, because it made me cry with joy to see her eat with enthusiasm for the first time in her life.

The connection with stress is also interesting...I'm convinced that DD1 was coeliac from birth (her symptoms first became apparent after I introduced gluten into her diet at 6 months), however I had twins when she was just 20 months old. Despite my and DH's best efforts, this must have been emotionally very difficult for such a young child - to suddenly have to share her parents with two demanding babies, although it may just be coincidence and her symptoms were just gradually increasing as the damage to her gut increased. However once she was diagnosed and established on a g-f diet, she became much less clingy and sensitive. Her confidence grew and now, despite being one of the youngest, she is one of the most emotionally mature, independent and confident children in her class.

Hope my ramblings are of some use! Best of luck with the paed - come back and let us know how you get on!

P.S. - are you a Nick Drake fan? We used to play Nick Drake to DD1 all the time - she used to go to sleep to his albums and her favourite was hazey jane!

Thankyou again tkband3

Yes I am a big Nick Drake fan, I was listening to hazeyjane, when I joined Mumsnet.

Your dd sounds very similar to dd1, I had dd2 when she was 14 months old, and whilst they are very close and adore each other, i do worry that she had to deal with a lot of upheavel at such a young age (we also moved towns when dd2 was 6 weeks old - it was chaos!)

She was very 'colicky' when she was tiny, although looking back I wonder if she had reflux like her brother (ds has awful reflux), she always struggled to gain weight, and was very fussy when she was being weaned.

I will let you know how we get on with the paed. Thankyou for being so helpful.