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

My DS gets mouth ulcers if he has oats - last time he had a flapjack and within an hour had 5 ulcers

Child coeliacs are normally told to avoid oats and re-introduce them when stabilased.

If he has gluten (not often now though !!) he gets a rock solid pot belly and it stays like this for a few days.

Along with his damien attitude we find the simplest silly things upset him.

Nightcat, that link didn't go anywhere for me.

I have heard of Natasha Campbell Mc-Bride before though and read some of her online research docs. I keep meaning to buy her book - its on the list, but I am already in the middle of about 6 books at the moment.

It does make sense when you do a bit of background reading, especially when you add up ds1 with AS and gluten intolerance, ds2 and his plethora of symptoms and me with CFS. Dh also has allergy related asthma and IBS.

I was also listening to a lecture here given by Michael Goldberg, that someone linked me to via the ME/CFS support thread. That was also really interesting, relating to ASD, CFS, ADHD etc and the connection with an overactive immune response and inflammation in the system - particularly the brain. It did make me think that as coeliacs is an immune, rather than allergy related response, perhaps all these things are connected.

I think we really need a massive lifestyle overhaul. When my boys were tiny we lived so differently than we do now, everything was organic, paraben and sls free etc and we tried to stick to everything as natural as possible. It all started to fall apart when they started school and wanted to be the same as everyone else. We do try, but its an uphill struggle these days, especially with the ever surging costs of anything even remotely natural or good for you.

I would seriously love to get back to basics, but its easier said than done now they are older and ds1 in particular with his AS likes things the way he likes them - anything else results in major meltdowns.

I have even considered doing a dietetics/nutrition course, just so I can get my head around it all a little better.

Another concern I have is that we are in an old house that still has some lead water pipes. I really want them removed and replaced, but the plumbers advised us that we could displace more lead into the system by doing that and in some cases its safer to leave them in place. I know for a fact that we have cold and hot water pipes laid next to one another and that's a big no no with lead pipes. We always run the tap for ages before we use the water and run off two sinkfulls in the morning or if we have been out or not used it for more than four hours, but its not ideal by a long chalk.

We are hoping to have the kitchen slightly extended and refitted later this year and I was thinking of just moving in with Mum for a bit and asking them to replace every single water pipe, then flushing the system - not sure if this is even possible though and if it is, its going to be very expensive.

Another problem is the lack of medical support for all these theories. Mention them to your GP and they just roll their eyes and ask if you've been busy googling. It would be great to have some support for generally overhauling and improving our lifestyles with the aim of improving general health and specific conditions, but they seem to want to chop you up and treat everything separately, rather than taking a holistic approach. Its so short sighted, particularly when they are supposed to be all for preventing rather than treating health problems.

moose, apologies, something went wrong with my link, trying here again - please copy and paste it into your browser as I had tried a link but didn't seem to work (tested copy/paste and it was fine). Bear in mind, it goes on for 1.5hr and it gets better as it goes on :)
www.vimeo.com/10507542

Dr Natasha also has a website that covers a number of issues (mentioned also in link), I really recomend it, as I have tried and tested her approach and can happily say it works :)

I have watched your link with interest, I have learned a few things there too, but while all facts match with Dr Natasha's approach, overall he asks more questions and suggests more research, whereas Dr Natasha has taken it further by providing answers plus practical and workable advice.

I originally planned to see her with my ds (she has a clinic in Cambs) but after reading the book, we have done it all at home with me begging out an occasional test from our dr and paying for a couple of others.

I am also still reading tons as I find it fascinating, but nothing come close to her advice so far. I had been overwhelmed in the past not knowing where to start, what test, who would interpret, I did briefly consider chelation, but got scared - now I am glad I didn't pursue that any further.

I agree that drs are not generally interested in prevention and in my ds they were not even able to do anything anyway as he is/was so severe, so in a weird way I was free to do what I wanted (at one point I had discharged him from hospital against dr advice as I felt it was better to go home to die, thankfully he didn't and the treatment offered proved incorrect anyway).

Dr Natasha's book is a brilliant start and don't feel overwhelmed thinking of a major overhaul, it's actually quite simple. I am glad she is on your reading list

forgot to ask, please tell me what's on your reading list, might find it interesting?

just btw- you say:'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.'

...even just the two slices of bread he has on weekdays would count as a lot of gluten- when I had to do the 'gluten challenge' before my biopsy, I was told to eat 4 slices of bread a day for two weeks beforehand- given that I'm a moderately hefty woman, he's probably eating at least the same amount relative to his size (I tested positive- and couldn't manage to keep up to four slices in the second week as I felt so rotten.

Hi all

Sorry I didn't get back to you last night nightcat. Will post my reading list when I get a chance.

Another crazy medical day here, ds1 had his OT assessment this morning. Dropped him back at school and called the eye clinic about the reappearance of a chalazion on ds2's eyelid. They can't see him until next Tuesday and we know from experience how much worse it will be by then, so was told to call the GP and ask for repeat prescription of the only antibiotics that work. Called the GP to be told that, as he hasn't been seen for this condition in the last 12 months they had to see him to prescribe. Ended up taking him out of school early to get him to the only available appointment - with one of my least favourite GPs.

Got there to be faced with opposition to the type of anti-biotics he needs, as she said they don't usually work for soft tissue infection. I had to explain all about him having tried every other type of possible anti-bs and the consultant at the hospital trying this one and finding it was the only thing that worked. Since then he has had to have those particular anti-bs straight away every time he gets a chalazion or they just spread and grow until his whole eyelid is swollen and he can't see out - that's exactly how he ended up with scar tissue on both eyelids. She did concede and say "we'll try them then" in the end.

While I was there I asked about his test results and she said they all came back fine, negative for coeliacs, but slightly low on iron - but the test results are measured against adult standards, so he's actually probably ok. I then listed all the problems he's been having, explained how exhausted he's been and how he's been struggling at school and she looked at me blankly and said

GP: "But his bloods aren't showing anything, his white cell count is normal etc"
Me: "Yes, by adult levels though, so how does that affect the results"
GP: "I'm not sure, I will look it up later".

So I asked what we can do now, if his bloods aren't showing anything, but he is obviously physically unwell and very run-down and

GP: "I don't really know - maybe we should do a urine test and weigh and measure him. So then I asked
Me "But you said he can't have a urine infection because his white cell count is normal so how will a urine test help".
GP: "Well we've not done one, so its worth a try."

Basically she doesn't know what's wrong and doesn't have a clue what to do next, so its thank you for coming and goodbye. I kept batting the question back to her about what options we have left and what else we can try and she basically shrugged her shoulders.

So, I'm keeping the telephone consultation with the senior partner of the practice tomorrow and I'm going to have to push hard now to get some answers. Wouldn't surprise me if we don't just get palmed off with - well he's probably just a bit run down - though.

I feel like there must be a big flashing light on my dcs' files saying "fussy mother, humour, then dismiss".

Meanwhile, I have an exhausted little boy, who cried because we had to walk a couple of hundred yards to the chemist and back after the doctors and then came home, crawled up the stairs because he was too tired to walk and sat on his bed crying because he was too tired to get changed out of his uniform.

Moose, that's b/c drs have little to offer in terms of nutrition advice sadly, I still think GAPS approach would take you to a better place. I had to get one good dr onto our side but it was me who suggested the tests as he had never had anyone with the condition before, but at least was not open minded aenough not to slam the door on us like some other drs did.
So you tested your ds for iron (lowish), but how about B vits, Mg, Zn (which is strongly linked with poor immunity). IME drs are not prepared to go on a journey with you if they can't give you a quick-fix tablet.

there are loads of people on here who had negative results for coeliac with blood tests, then got a pos on the biopsy (me included)

try having a look on Allergies- iirc there's a lot of coeliac stuff on there (tho not an allergy)

good luck, and keep shoving. It took me 7 years of gp visits before I (luckily) hit on the one gp in a busy practice who finally sent me up the right channel

Some doctors just fob you off - My GP was brilliant and was banging on the doors with me, it was only after both I and him threw our toys out and had a paddy that I got referred to a specialist (was seeing a general paed.) Then we got taken seriously, the first doc wasn't concerned as my DS is tall and "looked" healthy most of the time - I kept telling the doctor he looked like this because his fav meal in the whole world is steak, medium rare with a side order of cabbage/brocolli !!! He did/does eat 10-12 portions of fruit and veg a day. (With hindsight perhaps nthis is because it doesn't make his tummy hurt)

Thanks for the support, I really appreciate it. Am feeling very low and sad for my poor little boy this evening.

He's just spent half an hour on the toilet screaming in pain, his stomach is out like a balloon and he's completely worn out. Dh has just taken him up to bed with a hot water bottle for his tummy.

I will keep pushing and in the meantime make sure he has the healthiest diet I can possibly manage.

I'm think I'm going to order Doc Natasha's book and put all my other reading on the backburner for now. He can't carry on like this - I need to do something.

Another avenue I'm going to investigate is mycoplasmic infection. I was nearly killed by a mycoplasmic infection myself when I was a child. Round after round of bloods that came back apparently normal, hundreds of visits to the GP with my Mum in tears telling them I was dying in front of her eyes, only to be told they couldn't find anything wrong - until finally, after 6 months, I collapsed and was rushed into hospital. They still couldn't find anything, but one particular Paed Registrar didn't want to let go of it and asked for an additional set of xrays from a new angle - there it was, both lungs 3/4 full of mycoplasmic pneumonae. If he hadn't done that I would have been dead within a couple of days.

It does rather beg the question whether or not my dcs might react in a similar way to mycoplasmic infection. Its usually a mild illness, community acquired and most children never even know they've had it. mine was an extremely unusual case.

Mycoplasma don't show up on standard blood tests and are very good at camouflage and tricking the body, hence normal rbcs and white cell counts. We are currently trying to ascertain whether my system becoming systemically infected with Mycoplasma could have been the root cause of my CFS. There are definitely a number of ME/CFS specialists around the world that seem to back up the theory, but trying to get anyone to listen in the UK - well I think we all know where that goes.

Anyway, thanks again for all your support. Its dh's 40th birthday today and the poor guy booked the day off work, only to spend it ferrying various dcs around to different doctors. We're going to have a takeaway (I know - healthy diet - but its literally once or twice a year for us and the dcs not even that) and see if we can find a film to watch to take our minds off it all, so at least he's had a bit of a birthday - not sure its going to work though to be honest.

Get his thyroid checked as well. Exhaustion, constipation, brain fog, muscle cramp all symptoms hypothyroidism

Moose, myco-stuff - are you taking probiotics?? Is your ds taking probiotics??
Coz the only safe way to get these under control is through the good guys pushing them out (see Dr Natasha's book - lecture also talks about it).
My ds had fungal stuff for years - until the diet, probiotics & Zn cleared it.

On chalazion, I looked it up as I hadn't come across it before, but it says it's not viral or bacterial, so no idea how a/bs are helping? But make sure he gets probiotics too.

Sorry you are having a rough day, but Happy Birthday MooseMan

Thanks moneytree. I can't remember whether or not they tested his thyroid. Will check tomorrow.

Nightcat, the chalazion isn't viral or bacterial, is basically a blockage that produces a cyst like lump. Ds hasn't had one that hasn't become infected and caused cellulitis though and at one point they were cropping from eye to eye within a couple of weeks of each other.

We did probiotics for quite a long time last year, but then the shop I was getting them from shut down. Can you reccommend a good brand I can buy online?

Must go, dd is refusing to go to sleep for dh - we'll never get to eat at this rate.

gluten can damage thyroid via autoimmunity link

Now you said it's a cyst, I recall a friend's dd had one and it was removed rather than treated?

As for probiotics, after reading GAPS book, I buy Bio-Kult

Well, we've given up on the idea of a meal and a film. Neither of us feel like eating now - so its just a cup of decaff and a slice of birthday cake for us. Good job dh is having a big birthday party in a couple of weeks, otherwise his big four o would have been a total washout.

Thanks nightcat. I will go in search of some bio-kult in preparation for improving our diets in general.

They do remove chalazions in some cases, but as his tend to crop repeatedly it would be pointless, as he would just get another, then another - moving from one eye to the other. They're odd things, as they're not infectious, but still occur in crops across both eyes.

We've only been close to having one removed once, when it was the size of a large sprout and not responding to antibiotics. Poor boy was just starting nursery and looked really scary to the other children. Fortunately, it responded to a final course of anti-b's and they cancelled the op.

So frustrating, he had them incessantly for a year or so and we were told most children grow out of them, so when they stopped we hoped that was it. I can't believe they're back, seriously hoping this is a one off and not a repeat performance.

Do you think these chalazion lumps flare up when your ds is unwell/run down? Could it be due to low immunity? Random inflammation issues in various parts of the body can be linked to gluten/autoimmune damage, interestingly the girl I mentioned earlier does have autoimmune problems which are possibly gluten related.

I would consider emailing Natasha to ask if there is anything she could link it too, there must be an email somewhere on her GAPS.me website.

I definitely think that's the case and said so directly to the GP today. I'm acutely aware that the senior GP mentioned referring him to CAMHS if the bloods didn't show anything, because obviously then it must be psychological.

Having suffered with CFS my whole adult life and pretty much avoided doctors, despite having the dx on my medical records, I can't stand the thought of them labelling ds as having a psychosomatic illness. I know what that feels like and he's already worried that no-one believes how poorly he feels.

He has always been such a happy livewire in our house and its awful seeing him like this. I am very much aware of the mind/body connection and do understand the link and that psychological factors can and do affect physical health, but I am so sure that's not what we are seeing here.

I pointed out to the GP that he currently has and recently had a regular list of very real physical conditions, all of which are associated with low immunity and/or being very run down. She did agree with that, but then basically said, there's nothing else she can do.

I've just been disussing it with dh and we think we've come to the conclusion that we should all go gf pretty much straight away in the first instance, then read the book, do some further research and make changes to our diets as we go along.

I've just been reading some truly scary stuff about mycoplasmic infections and hope to God its not that, although we are apparently prime candidates, as its transmissible and as far as I can tell, there's no way they can have got rid of systemic mycoplasma from my system with the treatment I received back then.

hi moose,sorry to hear your little one is suffering ,sorry don't have any advice to give,but thinking about you,and hope he is better soon.

Hi have a look at this article from The telegraph: www.willowherbalcentre.co.uk/press.htmlthis
I wonder if some of these symptoms match any of those for your ds.

Sorry, messed up that link - new to this! Should be: www.willowherbalcentre.co.uk/press.html

Right will try one more time and if doesn't work will give up! www.willowherbalcentre.co.uk/press.html

Hi crazypanda, thanks for your message.

PyjamaLlama, it doesn't sound that similar to what ds has, but thank you for thinking of us. As I understand it Giardia is usually picked up abroad and the furthest ds has ever been is Ireland.

Dh might have had a breakthrough. He's been looking up the information on Movicol, which ds has been on for a few months now.

One of the primary side effects is excessive fatigue. The other side effects match with his bloating, abdominal and stomach pain, headaches etc and their own advice suggests that it should only be used short-term for a few weeks and is unsuitable for long-term medication.

I can't understand why the GPs keep telling us its a benign drug, which is safe to use long-term, or why they haven't connected his symptoms to the known side effects. Add to that that it can cause some pretty serious health problems if a reaction does occur and frankly I'm appalled that the doctors haven't even considered it as a cause.

Also, the side effects are almost identical to the symptoms he had when he started on the drug in the first place - so there's actually no point in him being on it at all.

Angry as I am, I will actually be so relieved if it is the movicol and we can sort it out just by taking him off it.

We're still going to read Doc Natasha's book and overhaul our diets even if it does turn out to be that though, if nothing else, this has been a huge wake up call for us.

moosemama, i just read your thread and my heart goes out to you and you ds. I am so at gp's myself at the moment and have been reading so much on here lately about lack of interest, care, suggestions.

I hope you find out soon why your little one is in such a bad way. I had a few months last yr where dd was in pain, nothing like your son, but it was her hip, and it was a bloody nightmare. Lack of communication from hospital, trips to a+e and no diagnosis for weeks. Basically left to believe it was 'just oneof those things.

grrr

i feel for you, and as suggested below, if the coeliac test can come back neg but you can still be positive whats the bloody point of that.

It's awful to see the life force go out of your child. They end up so sad, and you end up frustrated. Sometimes i got cross with her, becuase it was so draining. Not to a huge extent but it was just when i got to the end of my rope.

I have my fingers crossed for you, for an explanation or improvement.

you may not believe this but i was thinking about the movicol.

dd had to have it last year as when she went into hosp, the morphine made her constipated. In the end the movicol seemed to make her more constipated and bloated. The hospital couldn't make up their minds how often she should have it, whether to stop it gradually or just stop. i got different advice form different docs.

In the end they were coming to the ward on their rounds asking after her bloody constipation not her hip problem. jeez.

Dd was in a right state on it, and i remember now thinking it wasn't helping, but so much was going on in the hosp. anyhow, i don't know whether her poo's got better naturally or becuase we stopped the movical iyswim. but she did get back to normal.

Thank you Piratecat. It is draining and despite being really worried about him I have snapped a couple of times when he's been really whingey, then instantly hated myself afterwards.

Did you just stop the movicol overnight or phase it out gradually? Dh is all for stopping it as of now, but I'm not sure if that's the right thing to do.

Just realised when talking to dh, that neither doctor gave him a physical examination. They didn't even check if his glands were up, despite me telling them the gland under his left ear was enlarged the first time we took him in. How the hell can he have had an inflammed gland, but no raised white count and how on earth can a doctor diagnose and assess without an examination.

Honestly, I have so little faith in the medical and educational system in this country at the moment. I shouldn't need to be here speculating about what might be wrong and reading through stacks of research etc, I should be able to trust them to do their jobs properly, but I can't.