Any ideas? (long)

[moosemama]

Ds2 (6) has been getting more and more run-down and depleted over the past couple of months.

He has had problems with constipation recently (for which he is on movicol) that developed after a series of d&v viruses at the beginning of the autumn term and I know the constipation makes him feel poorly, but this is something entirely different as far as I can tell.

He very pale and has dark circles under his eyes, gets regular cramps in his feet and calves and seems to just suddenly drop into a sort of total exhaustion where he just wants to lie down and close his eyes. He does still play, but not as often and regularly refuses to play with his brother because he's too tired or just wants to lie down.

Other than the bowel thing and the cramps, he has no specific symptoms, but is obviously unwell. He is usually such a happy, smiley, lively boy and he's barely recognisable at the moment.

In addition, we've noticed his cognitive function is becoming impaired. He is struggling to do school work that ordinarily he would have breezed through. The other day we were doing homework and I asked him what four minus one was and he couldn't do it, he just stared at me blankly, said I don't know and burst into tears. I jollied him along and reassured him and he did do it, but only by working it out on his fingers. He is having similar problems across the board with reading and spelling, almost as if he has some sort of mental confusion or brain fog.

Worst of all, he is aware that this is happening and is starting to label himself as stupid as a result. We've had lots of tears about how he is struggling in school every single day and just can't do the work. I've tried reassuring him that he's just a bit tired and it doesn't matter if he gets things wrong, as long as he's tried his best, but its not helping.

I have spoken with his teachers and they have noticed the same things happening at school and also that his achievement levels are dropping. They did try doing some confidence building work with him and have done lots of work on encouragement and praise, but its had no effect. They are also very concerned about him.

Back in November, at parents' evening, we were told he was doing really well, looking at moving up into the top group for numeracy and literacy and they had no concerns about him whatsoever, so this has all happened since then. Thinking back, it has probably been a slow decline, that we only really noticed when it started to get more severe. I think we probably put some of it down to end of term tiredness and Christmas at the end of last year.

I took him to the GP yesterday and they sent him straight to the hospital for a range of blood tests. Poor little soul, they couldn't find a vein in either arm and he ended up like a pincushion he had so many holes in his arms and to add insult to injury, the LA cream had worn off by the time they managed to get any blood out of him. He was so brave, especially as he is needle phobic already after a stint in hospital when he was seriously ill at the age of 4.

We have been through a similar thing with him once before, although that time there was an obvious cause. After being dangerously ill and hospitalised with pneumonia, he regressed emotionally and lost pretty much all the academic skills he had, having to start again from scratch learning letters and numbers etc at the age of 5. He was given additional support for a year and worked really hard to catch up to the point that he no longer needed additional support by the start of the summer term of year 1 and the only reason they didn't put him into the top groups for everything at the beginning of year 2, was that they didn't want to overface him and felt he would benefit from a term at the top of the middle group before moving him up. It feels like he is almost back at square one now though, being unable to do even basic sums and spellings, that he had no problem with this time last year.

The GP said if nothing shows up on the bloods it might be appropriate to refer him to CAMHS, as it could be psychological. Obviously I will do whatever it takes to help him get through this, but it just doesn't seem primarily psychological to me - he is so weak, pale and visibly ill.

Has anyone had any experience of anything similar. Obviously we are worried sick about him. The blood results aren't due for 5 days and other than possibly anaemia, I can't for the life of me think what could be wrong with him.

The bloods were for liver, kidneys, FBC, ESR and a coeliac screen (his brother has recently had a negative coeliac screen, but was advised to remain gluten free anyway due to obvious physical effects of eating wheat).

TIA

Coeliac disease sounds feasible. Have you been tested/have any symptoms?

Hi,

No, I don't have any symptoms, but my Mum reacts to wheat and is awaiting a coeliac test (she has had to go back onto eating gluten as she'd taken herself off it for a couple of months before the GP suggested the test) and dh has IBS that is definitely made worse by eating wheat products.

Would coeliacs cause constipation though? With ds1 its constant diarrhoea, same with Mum.

Ds2 has cyclical constipation and his abdomen fills up with wind to the extent that he looks 9 months pregnant and is in a lot of pain. This has only been the case since he had 3/4 d&v viruses over a six week period at the beginning of the autumn term though.

Bump?

hi moose

does your ds1 have any dietary issues?

have you tried a Sunderland test?

Peachy always used ot post about how casein affected her - lots of lethargy, it making her feel detached, and as htough she were behind a fog/veil etc.

Sunderland reckon the sibling rate with sensitivity ot gf/cf is higher than 50%, so might be worth a try?

dd2 was affected by gluten/casein when smaller. we kept her gf/cf (dd1 is majorly affected), and have only just introduced gluten again, and she is 4. she is still dairy free.

Have come over from friday night- All I can think of is anaemia. I have been very anaemic in the past and struggled to do anything-It did severely affect my energy and concentration

He was very brave to have all the tests done and hope you can find an answer soon

Are they testing for any other blood disorders

Crohns?

Sorry no answers, just wanted to post and say hope you get answers soon. So sorry for your ds suffering, hope he is well soon.

Thanks for replying.

Hi Silverfrog, ds1 is gf. He has had diarrhoea almost constantly since weaning. Got fobbed off with all the usual 'toddler diarrhoea' nonsense by the GP for years, until he was referred to the Paed for ASD assessment and he suggested having him tested for coeliacs.

The test was negative, but came a week after he'd had a bug which meant he barely ate anything - let alone gluten - for about 10 days.

We had removed gluten from his diet at the suggestion of another GP about 4 months before we saw the Paed and there was a definite improvement in both his stools and his behaviour. Unfortunately, this meant he had to go back onto gluten for the test and was so poorly with it that we actually asked them to either bring the test forward or cancel it, as we couldn't bear putting him through it. He was back on gluten for around three months before the test, but then had that 10 day period with hardly any food at all around a week before they did the bloods.

I haven't had the Sunderland test done, mainly because the positive effect of the period of being GF, followed by the deterioration after being put back on it was enough for the Paed to advise he should be treated as if he does have coeliacs.

We are having problems with him as well at the moment. He's been gf again since September and has gradually been getting more and more diarrhoea, until he's now back to bad attacks every day. I know I should get him tested for casein, but we are already a veggie family and I dread the thought of trying to get him to eat a gf/cf diet.

A bit off topic, but do you know if being gf for this long might make him more sensitive to cross-contamination from the foods that the rest of us eat that do contain gluten? Also, I think I read somewhere that after going gf, its quite common to develop secondary lactose intolerance - or have I got that muddled?

Ds2 has never had any dietary issues, he's always been a good eater and up until the repeated vomiting episodes, starting last September, has never had any digestive problems at all. Since then he's had cyclical constipation and bloating with lots of pain - which then causes reflux and reduced appetite. Despite being on 3 sachets of movicol a day, he still gets the constipation around every 7-8 days.

intothewest, thanks for coming over here to help. That's what his teacher said - that it reminds her of anaemia - and it does sort of fit, but not quite. I was anaemic on and off throughout my pregnancy with dd and it is horrible. He does have a vit and mineral supplement which includes iron every morning and although vegetarian he eats fortified cereals and bread and lots of dairy products and green vegetables, lentils etc. His diet is actually very good. I do wonder if the constipation/movicol etc could somehow be blocking him absorbing the nutrients he needs though?

amothersplace, they haven't said they are testing for any specific blood disorders. As far as I can tell they are just looking for general signs or inflammation, infection, anaemia and checking kidney, liver and coeliacs.

Mumsnut, I don't know anything about Crohns. Will I frighten myself if I google?

I am consoling myself with the fact that they've had his bloods for 24 hours now and if they'd found anything to scary I assume they would have been in touch, rather than leaving it to next week.

moose.., yes, you usually get a much stronger reaction on contamination if you have been gf, one dr I know described this that as the body gets healthier w/o gluten, it will let you know in a very obvious way when you eat something that disagrees.

On lactose etc intolerance, afaik, it's the other way round, gluten causes lactose/casein intolerance, so most people (assuming they recover on gf diet) can return to eat dairy OK (this happened to my ds); it's the way where the enzymes that digest dairy are excreted in the gut. However if the damage is severe then the ability to cope with dairy is not always restored.

Anaemia is one of the symproms associated with gluten intolerance/celiac. Don't hold your hopes too much on positive celiac test as we have been told that in children this can be false positive - in fact celiac is just a top of gluten-intolerance conditions, so if you know it helps, you can educate yourself and do the diet for everyone - that's what I did and not regret it for one second.

When I realised that severe damage by gluten can be irreversible and can affect other organs too (autoimmune conditions galore), I couldn't get off it fast enough.

Lots of reading on celiac.com and glutenfreeforum and they are not about celiac, they are about people who are affected by gluten in various ways. The blank stare etc is actually called brain fod in those circles.

GF diet is actually very healthy if you don't restrict yourself to cardboard-like substitutes but use real unprocessed foods.

Also, I would suggest to get copies of tests from dr so you can have a look yourself as they often state normal on borderline results but they can still mean something.

brain fog (typo!)

I think coeliac can show in various ways, so constipation doesn't rule it out.

If it is coeliac, the main advantage of getting the full diagnosis (which for DS2 was biopsy in addition to the blood test) is that you can then get gluten free products by prescription - free for children obviously.

DS2 had gastroenteritis at about 10 months old, and we think this triggered his coeliac symptoms. He was very lethargic, stopped trying to walk, looked really pale with almost translucent skin. He had vomiting rather than diarrhea and lost a lot of weight. It took ages to get a diagnosis because he'd been a large baby before that, and no-one took seriously the fact that his 'average' size wasn't right for him.

I didn't have any issues with lactose intolerance post diagnosis and going on gf diet, but I believe it can occur.

DS2 perked up amazing quickly after going on a gf diet once we'd got the diagnosis and is now a fighting fit nearly 9 year old and is the fourth tallest in his class despite being the youngest.

If you have someone with coeliac in the family there's a 1 in 10 chance that someone else in the family also has it. My Mum was diagnosed in her 70s, but had been very anaemic as a child.

Hope you get a result of some sort so you can start dealing with it.

Thanks Silverfrog, that helps a lot. I did read up on it all right back when we started out with ds1, but I'm very vague myself at the moment and can't seem to remember it properly.

Our diet is already pretty healthy and we don't eat a lot of wheat based products. (Well the dc's don't, I am nowhere near as good with my own diet as I am with theirs) The only thing ds1 has that's processed gf is bread for his sandwiches at school and pasta. In fact we've all switched to gf pasta, as its easier than having to store and keep separate two different types.

I sometimes buy gf treats for his lunch box if I'm ill or too busy to bake, but he generally prefers my homemade stuff anyway. Obviously all our condiments, stock cubes etc are all gf already, so ds2 can't be getting that much gluten in his diet, other than him having normal bread for his lunchbox monday to friday.

I was actually thinking of getting a copy of ds1's test results, as they just said he was negative, but didn't elaborate. I'm even tempted to go the whole hog and get copies of all our medical records, as I often feel they fail to join the dots, make connections and see patterns which when looked at as an overall picture, would probably be more obvious across the full medical history. (Eg none of my current doctors have looked far enough back in my notes to notice that I was dx with PVFS/CFS twenty years ago, so they never take it into consideration when I see them and I usually feel like there's no point in keep trying to get them to listen.)

I know they're restricted on time, but it drives me nuts that they just take two seconds to look at the on-screen info from the previous appointment each time, instead of taking the previous medical history into consideration.

Thank you Bumply, that's really interesting - I always assumed the constipation meant he couldn't have coeliacs.

Ds1 needed a new uniform after one term at school for the first time ever after he went gf. Prior to that he'd never grown out of his uniform or shoes across a whole school year! He used to be the smallest in his year and got bullied a fair bit for it, but he's now caught up and overtaken a couple of the other boys in a matter of months. I'm a bit at having to buy him new shoes already this year though!

I got half way down your first post and yelled "coeliac"

anemia is a common side effect, I believe, due to poor absorption

trouble is it can have so many other symptoms-that-look-like-something-else that it's quite tricky to diagnose, ime

(the blood test tells you very little, I think, and can come back negative when the biopsy gives you a positive)

Thank you SpringHeeledJack.

I am starting to think that regardless of the blood results, we should try him completely off gluten and see if he improves.

I might hold off just until the results though, as if by some miracle they do come back positive for coeliacs, they will want to do a biopsy. Although .... (sorry, thinking aloud here) I'm not sure I'd want to put him through a biopsy just to prove the dx - we don't get prescription food for ds1 and he does ok, so I would probably just take him gf anyway.

could it be the iron in the vitamin supplements that is making him constipated? they do to a lot of people.

Hiya, moosemama, can't add much to the advice already given but just wanted to say that when my ds was suffering from chronic constipation he was pale with dark circles, very "away with the fairies", seemed miserable and in pain sometimes, and intensely fatigued. He is 4 and has suspected ASD and it is hard to tell his exact symptoms as he is not very good at using language to describe/understand what he is feeling, but I do know that since his constipation has improved he is much more "with it" and energetic - like a different boy.

I knew someone who suffers from coeliac disease and I remember she was nervous even being close to someone eating a biscuit - she told me she could not take communion at church from a communal cup in case someone had dipped a wafer in it. Also that there is gluten in the most unlikely things like soy sauce. So accidental ingestion of gluten is obviously a constant risk - poor her! (and poor you )

I have been looking into GF/CF issues myself, and found Luke Jackson's book on the topic very helpful as it was written from the perspective of a young person on the diet and gave me a good idea of what was involved. I can understand you don't want to commit yourself to adding yet another layer of complication and stress to your life without some evidence it will help as the diet does seem to be a lot of work, although people I know on restricted diets say it soon becomes second nature.

I do hope you find a solution soon and can put your mind at rest as it is so distressing to see your child unwell and not know what to do to help them.

diddldidi, I don't think there'd be enough iron in his supplements to cause the constipation. Its usually only high dose iron that does that.

FickleFreckle, thank you for sharing your experience. That's what I thought initially, that the constipation was making him feel really unwell. I have a friend whose daughter suffers from chronic constipation and she's often really ill and weak with it. The odd thing is that ds2's constipation isn't consistent. I was in the toilets with him at the hospital the other day and his stools seemed completely normal, three hours later and he was at home, on the toilet screaming in pain, telling me he couldn't poo and his upper abdomen was swollen and full of gas again. If I had't been in the cubicle with him at the hospital and seen it with my own eyes, I wouldn't have believed it and would have assumed the first time must have been overflow.

We're fairly up on hidden gluten because of ds1. We buy gf tamari instead of soy sauce, gluten free vinegar and ketchup, gf free stock cubes etc - I am a seasoned label reader these days. We are even lucky enough to have a local chip shop that has a separate fryer for gf food and does gf batter and chips.

It wouldn't be a huge step for ds2 to go gf, as we already have everything in because of ds1.

Pixie, thank you for your kind words, they are really appreciated.

Hmm, well I have him home again today. Painful legs and ankles , exhaustion, stomach and headache and generally pale and unwell. He managed to go to a birthday party yesterday morning, but was wiped out for the rest of the day, didn't even want to play with his brother.

He slept from 8.30 until 11.15 this morning and is now a little brighter, has come downstairs but says his legs still hurt and he still has a headache.

Not sure what to do really, there's no way he'd handle a full day at school, but he can't keep missing lessons, especially as he's already struggling. I'm really worried that he'll fall behind and it will knock his confidence even further.

Think I might see if he's up to doing a bit of one of his Lex Wizard Books with me a little later.

coeliacs

I think he should be tested for coeliacs too. My DS had diaherra but in some it does cause constipation. I think my mum has it to (and hers would be constipation/anemia)

When DS was diag. with coeliac he changed so quickly - he sundenly shot up and grew a shoe size, if he has gluten he is ill with dark eyes, pale, tired and "Damien" attitude !!!

More votes for coeliacs then, thank you. Its is sounding more and more like that. I'm concerned he will test negative though, as he doesn't eat a lot of gluten related products due to his brother already being gf.

notapizzaeater, that sounds just like him, pale, tired, big dark circles under his eyes. Ds1 was the same when we took him off gluten despite a negative coeliac result. He needed new school shoes and trousers within a few weeks, whereas before both had always lasted him a whole school year!

Not sure about the Damien attitude, but he is unusually short tempered for him (he's generally such a placid and gentle boy, but definitely has less patience). His tearfulness and oversensitivity is off the scale though.

I have just sat down and written some notes on his health since September last year and its quite eye opening. He's had:

• repeated episodes of vomiting (at the time presumed to be viruses, but looking back, he didn't have the diarrhoea that the other children at his school had and he had it
  repeatedly every 7-10 days for a couple of months).

• one impaction, regular constipation (every 7-10 days despite being on movicol)

• bloating (think 9 months pregnant) accompanied by lots of gut and stomach pain

• loss of appetite

• symptoms of reflux

• headaches

• one truly horrible, enormous tongue ulcer that covered half his tongue and went right the way through

• two smaller, but still significant tongue ulcers

• aching/painful legs and ankles

• regular leg and foot cramps (distinct from the above pain)

• exhaustion, tearfulness, over-sensitivity/mental fog/confusion

I have also discovered today that he has a chalazion on his eyelid for the first time in two years. He used to suffer really badly with them and needed regular high dosage antibiotics to get rid of them each time. I'm now wondering if this is why his astigmatism seemed to have worsened when we saw the consultant optician last week, as it will be putting pressure on the eyeball. I think they might have missed it as its actually within the boundaries of the scar tissue from his worst ever chalazion.

Poor kid, he is so run down. I wish his bloods would hurry up and come back so we can get on with sorting it all out.

Moose, my ds was ticking some of your boxes plus others that landed us at the neurologist.

What worked in the end was gf and GAPS diet plus probiotics, have a listen to [[
www.vimeo.com/10507542 THIS LECTURE]], it's excellent and it might help you (relevant as you mentioned antibiotics!).

This dr also wrote a book called Gut and Psychology Syndrome, in one chapter she specifically describes why in some cases gf is not enough and she also explains not only what the diet is about but also why.