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

hi moose have been reading this thread earlier today and have just spotted tonight that you have cfs.do you think this might be the problem with your ds??
it does seem to run in lots of families.
i have been ill with me for nearly 9 years - it started shortly after my grandmother became ill with a v similar set of symptoms - shortly after i was diagnosed my next door neighbour also started showing the same symptoms.
as you are prob aware a lot of drs don't think me can affect children and my grandmother was told by her gp it doesn't affect old people.
i know when my dcs have been ill in the past they develop a v similar type of illness but so far they have been able to shake it off.
i would say swollen glands and severe fatigue are probably the key points to look for.
good luck in finding out what's wrong.

hi moosemama, do not eve get me started on education.

In the past two weeks i have been contemplating moving dd to a smaller school or homeeducating.

Our school has no time anymore for anyone ill. They are only concerned about the attendance records.

I just stopped it. She was bloated and in pain and i read the leaflet and googled. I just didn't think it was helping. She was eating well, and doing tiny soft poo's by then though. As long as they are doing something and there's no impaction then i am sure the body can sort itself out given the chance?

I will say though that dd is a fussy eater gets hardly any fruit or veg. Yet her poo is fine normally. It was the drug they gave her that caused the constipation and sickness.
xx

Just my thought.

just to add.

dd has swollen glands atm. she has been off school for 3 weeks with swine flu and then tonsillitis. severe headache is keeping her off now.

gp said there are some nasty viruses going round, so just a thought, because my dd has never been so ill. ( i had it too, took weeks to go, but no tonsillitis becuase they were taken out yrs ago!)

Thank you sharbie. Sorry I disappeared - I suddenly realised how late it was.

I have considered the me/cfs connection, but I dread the thought of him getting it - especially so young and think the chances of getting the GPs to even think about it are slim to none. There does seem to be a family connection on my side. I'm fairly certain both my younger sister and my Mum suffer with it, but have never been investigated. My younger sister has been through a lot of investigations of a mystery illness that caused her a lot of severe pain, but no-one ever suggested or looked into me. They've now put it down to neuropathic pain and she had pain blockers to try and manage it. Mum is like me, cycles of extreme fatigue, long post viral recovery even from the slightest illness, lots of muscle and joint pain, mental confusion etc. Mine started after a combination of an injury and illness followed by a period of intense stress in my life. I was bedridden for a few months the first time (21 years ago), but have learned to manage it, although it does have a huge impact on our family life.

I am hoping the Dr Natasha diet might help the whole family, including me, by healing and rebuilding the immune system via healthy gut health.

Piratecat, fortunately our school is very understanding regarding illness and being off school as long as we keep them fully informed and make sure everything is put in writing for his school records. I think this keeps the attendance/welfare officer off their backs. Its fighting for the SEN support my ds1 needs that has me so frustrated. That and a teacher that seems to think that somehow ds having autism is just an excuse for him to behave in a way she neither likes nor understands. Still, we have some good contacts and the support is coming on - its a constant uphill struggle though.

I have him off again today. I think he could have gone in - at a push, but probably wouldn't have lasted the day. I'm tempted to keep him home until after the holidays now and encourage him to get lots of sleep. He's in bed, upstairs on his own - which he hates, but I don't want him to make the connection between being tearful and tired and getting to stay at home and have a nice time with Mummy and dd. Dh was very short and snappy with him this morning - mainly because he was tearful and wimpy and saying he was too tired to get off the sofa and eat his breakfast, then too tired and cold to have a wash etc. I think he's struggling to understand what's wrong and somewhere in his mind he's thinking that if the test results were negative, perhaps he's faking it.
I know my little boy though and he'd much rather be at school with his best friend that upstairs on his own in a darkened room.

It didn't help that ds1 was in tears just before he went out as well, because he hadn't realised he's finished with the lovely Ed Psych he's been working with since last October and he thought he was seeing her this morning. He's had it explained by both her and us regularly over the last few weeks and we all thought he understood and was ok with it, but it seems we were wrong. He had really bonded with her and made such a lot of progress, but the damn funding has run out and she's not allowed to see him as a private client because its against policy.

I wish I had a magic wand that could sort all this out. Instead I'm going to do what I can and spend the day sourcing healthy food and probiotics etc and setting us up for an organic box scheme.

Hi Moosemama, understand if you think syptoms do not match but there is just one thing left niggling me... It was that your ds symptoms started suddenly in September.

My dd was similar. Everything was fine with no dietry issues and then suddenly she got ill with a non specific virus and we had problems ever since. Severe bloating and flatulence, constipation, stomache cramps, aching muscles in her legs, fatigue. She was referred to a paed and they did all sorts of tests, coeliac etc, and all came back negetive.

Decided to try completely GF and found this helped her immensely. Carried on like this for about a year then symptoms started to appear again. Was referred to dietician who suggested we cut out all sucrose from her diet. Tried this and found it helped.

She was diagnosed as having IBS and we were left just about managing her condition by following a very strict diet. Then somebody mentioned the newspaper article I linked to previously.

I took her to the clinic and she was diagnosed with Giardia - by the way dd has also never been abroad! She was given a herbal treatment to take for a week. I can honestly say that this has completly now sorted out all her problems. She now eats normally and is fine.

Just wanted to give you those extra details and I won't post anymore about this unless you ask. I really hope you manage to get this sorted soon.

that is good about the school. i have had only negatives. Even though i have always kept them informed.

I have had my request for homework ignored, and promises not fulfilled of a call from the school counsellor and two occasions. Last straw was being called in by the head to see the EWO and asked 'so what are you going to DO' about the fact your child gets ill.

that's why i go ape when she gets ill. They have been rubbish.

I do hope you get some postive results form the roads you are choosing. xx

PyjamaLlama, thank you for coming back to me. That's really interesting. I was told that you couldn't get giardia if you hadn't been abroad, but just googled and found you can catch it off someone else if they are infected and have poor hygiene, so of course schools are a prime suspect.

Its interesting that your daughter had constipation as they list diarrhoea, but not constipation as a symptom on most sites, so I wonder if the constipation is an atypical presentation.

Thank you again, I will definitely look into it a bit more and will go and read the article again - I was very tired and over-emotional last night.

Piratecat, I live in dread of a visit from the EWO, because both boys have dreadful attendance records from a combination of general ill health and lots of hospital appoinments and assessments. I haven't had a week when I haven't had at least one of them home for a half day or more since Christmas!

I hate the whole EWO thing and have heard ridiculous stories of their involvement with families. In our school, any episode of vomiting or diarrhea and they insist you keep them off for 48 hrs. Fair enough, I understand the reasons behind this, but I would be livid if they then told me off for the number of days my dcs had off, when half of them are due to their own policy. I always state in my letter that I have kept them off for 48 hours following the last episode 'in accordance with school policy' and hope that will cover me, but I've heard of plenty of people - even some who have chronically ill or disabled dcs, who've been told they need to do something about attendance, when its clearly beyond their control. They just don't seem to be capable of exercising common sense and dealing with each case individually.

We didn't give ds movicol this morning. I made some home made applesauce, which he ate - after a huge fight about not wanting it, despite him usually loving it for pudding - then passed normal stools within the hour. He's been asleep nearly all morning though.

Many parasites occur when stomach acid is suppressed and unhealthy diet can do that. Interestingly, wormwood is used in some countries to stimulate stomach acid, so it could explain the improvement in treating parasites. There are loads of possible parasite & fungal infections and unfortunately if you go to drs you get fairly toxic meds to kill them off, but they can also affect us. Unless you create a healthy gut flora to keep the bad guys in check and rebuild digestion, there is no quick fix or magic wand.
In the link where Natasha's lecture is, there are also lectures no 1 & 2 that give 11 principles of healthy diet, very worth watching too, as the advice is not based on marketing of any products or quest for profits. Some products that we have been brainwashed to regard as health foods are not at all healthy, apparently rats fed on the cardboard box in which breakfast cereal arrived lived longer than those fed on the cereal itself. We are not rats, but high-carb diet feeds all sorts of unwelcome bugs.

Our school were good when they realised DS diahorrea was not "bug related" and didn't then insist on the 48 hour rule. DS was treated for Gardia for 18 months as he seemed to get worse after a trip to Cuba. He was on strong Anti-B's for most of the 18 months - 1 month on 1 month off ....

Moose, constipation can be early sign of gluten problems, it's only at its more severe end when you get diarrhea, which basically means that body is unable to absorb food at all.
Forget movicol, if you want a natural (and healthy) remedy, try flaxseeds, best if ground and added to food that contains some liquid, eg caserole or even mashed potatoes.

BTW, even with genetic link, you can still do a lot with good diet.

Regarding the constipation, I too read about diahorrea and asked about this when I made the appointment. They assured me that constipation was also a common symptom.

TBH at that time I was willing to give anything a go and I went to the appointment not really expecting much.

Gosh, I can't keep up! Thanks everyone.

Nightcat, that's the one of the most frustrating things. When my boys were little, we were so careful with their diets, they had ground flax and a few full linseeds on their breakfast every morning, added vegetarian omega oils daily, probiotics, vit and mineral supplements and a really healthy diet with very little sugar etc.

Things only started to change when they went to school and started comparing lunch boxes etc and then our lives got busier and more complicated, dd came along and somewhere along the line we just gave in to an easier life.

They still have a good diet compared to a lot of children, but nowhere near as good as it used to be and I'm so angry with myself for letting it get to this point and if I'm honest, feel totally overwhelmed about trying to get things properly back on track.

Ds is up and has eaten his lunch. He still looks very pale/green and has big circles under his eyes, but he's going to have to walk to the school with me to fetch ds1, as I don't have anyone to sit with him this afternoon.

I don't do GAPS 100%, maybe about 80% but the results are still great. But I only have 1 ds, so prob easier to control.
I have also trained him to look for the nicest most nutritious foods and try and ignore cheap fillers like crisps and noodles of all sorts - unless gf (usually done at home). It's an effort, but if they see that they feel better for it, your battle is done :)

Hi nightcat.

I have been reading Dr Natasha's website and have just read the section on the introductory diet.

I'm not convinced we're going to be able to do even 80% of the diet. I knew she was very anti vegetarian, which is an issue in itself and on top of that it will be an uphill struggle to get my boys to give up their cheese. I know it probably means that its more important that they do give it up, but it would definitely be too much for them to cope with if I did it straight away.

I think we'll have to start very slowly. I broached the subject of the whole family going gf this afternoon and ds2 was quite anti, mainly because he hates the gf bread. I told him I was hoping we wouldn't be eating much bread and suggested we get some pots for me to make up salads etc for his lunchbox. He's not at all keen, but said he'd give it a go.

As I said, its very frustrating, because up until the age of about 5 they weren't really aware of junk food, cakes and sweets and pretty much the only treats they got were home made ones. Rubbish food just wasn't on their radar, so they never asked for it. The problem these days is that they know what the commercial rubbish tastes like and feel hard done by if their friends have it but they can't. The only good thing is that they both say they prefer my baking to shop bought cakes.

I've bought some naked bars for them to try in the hope of easing them off sugary commercially stuff gently, so we'll see how that goes. I've also made some homemade apricot puree and more applesauce as natural sweeteners and laxitives (and of course for the iron in the apricots). At this point, any improvement in diet has got to be a bonus and I'm hoping they'll become more open to it and less resistant as they start to feel better and their tastebuds adjust.

I also managed to pick up some crushed flax and whole linseeds today, so will start adding them into their breakfasts tomorrow. Have ordered a stack of organic fruit for juicing as well (fortunately they both love juices and smoothies).

Just looked at the price of the BioKult probiotics. I think it will have to be just for ds1 and 2 at the moment, as it would bankrupt us buying them for all five of us!

I friend of mine buys the vegicaps and some of the other stuff for her dcs, so I'll ask her where she gets them from and if its any cheaper.

I ordered a new water filter today and got dh to agree to buying a semi-permanent built in one until we get the work done on the kitchen.

So, at least I feel like something is moving in the right direction.

Is there anything else I've missed that's a glaring obviously thing to do straight away? I'm a bit tangled up in it all at the moment, so would appreciate any suggestions.

I think he's actually been very slightly better today - which is interesting, as he hasn't had any movicol for over 24 hours now. No bloating, pain or tears after his evening meal and he finished the lot without saying he was full and couldn't eat any more, despite me piling his plate pretty high. That said, the digestive pain and bloating comes and goes, so it could be just coincidence, or down to the extra sleep/rest.

I'm going to keep him off until after half term now and work on making sure he has lots of rest and a really good diet etc.

Have the phone consultation with the senior GP tomorrow and am feeling very nervous about it. Just hope I'm able to make myself heard that its not psychological and I don't want them to write him off because his bloods were so called normal.

Good luck with drs today.

We only gave up dairy briefly early on before I discovered goats dairy and we don't have a water filter. I don't give my ds high level of probiotics either, only about every other day. In a way we did a diet in slow motion and still do, but we avoid gluten at all costs although we have some rice (rice cakes or with main). I also give him only small portion of rice or potatoes with dinner, so the plate is full of other things. Even that has helped immensely.

We did juicing briefly, but only rarely now, I just make sure there is a large variety in foods, inc things like beetroot which he hated before.

We don't have any cereals or crisps in the house at all and no gf bread either. I only recently stretched myself to baking and that's only about every other week. I use honey as a sweetener and 50/50 honey/sugar when baking. I also make proper old fashioned soup at least once a week. We only use small amounts of meat, so I try and buy organic and esp like to give him wild venison and sometimes hide liver in soups or caseroles.
Nice thing to make is pancakes, I whizz up banana and raisins with egg batter, also add cinamon and ground flax and almonds. Sometimes i would shred apples into it as well. For your crowd it might take a while to feed them all, but maybe as a treat sometimes. I suppose it's just as nice to bake something.
I make raw shredded salad and add chopped up sauerkraut + some of the liquid for the probiotic effect (fermented) but you need sauerkraut w/o vinegar just with salt, you can get this in ethnic section of tesco.
As for vegetarian, it's only when I uderstood why, I realised that I was wrong allowing him to be vegeterian, it's to do with absorption of nutrients esp for growing children - in many cases (eg zinc) you can only get them from animal products and even if they are in some plants, we can't digest them well enough to benefit.
Carbs are full of flavourings as on their own they are just cheap tasteless fillers. Watch esp MSG.

What I found is that when we realised how much difference it has made, it was easy from then on.

Thanks nightcat. Have just sat down for the first time today and am waiting by the phone for the GP to call.

Ds seems a lot brighter this morning, says his poos are normal (that's two days in a row now ) and didn't feel the need to sleep all morning. He's actually playing with his little sister at the moment - albeit from his armchair rather than racing around.

He's had a couple of wobby/dizzy turns and still looks very pale, but on the whole its a big improvement, so it looks like the movicol was implicated at least in part of it.

I really struggle with the veggie thing, I used to think I was giving them everything they needed so it was ok, but as you say there are certain nutrients we struggle to absorb from vegetable matter. Unfortunately they've both read the same book at school about farming and meat production and are now adamant they never want to eat meat. I was quite angry about it actually, as they both read it off their class bookshelf when they were in year one and I had intended to wait until they were old enough to understand it, then explain it all and help them to make an informed choice - but it was too late once they'd read that book. I used to be strict about things like fish oils and would only give them vegetarian omegas, but I think I might be a bit sneaky with the old cod liver oil and omegas and see if it has any effect. Not quite sure how I'm going to disguise the taste though.

Neither of them are big on potato, but they do love their pasta. I've been gradually reducing the amount of pasta and increasing the sauce, as that's always home made and chok full of vegetables.

They both love salad though, and we all love home made veggie soups, stews and broths again with a wide variety of vegetables, so that's a plus.

I really enjoy cooking and baking in particular, so finding healthy alternatives I can make myself isn't really a problem. The only thing I don't like cooking is pancakes funnily enough, dh has that particular role in our household and the boys love them. I do sometimes do drop scone/pancake ones though and when I was low carbing myself recently I made up a great recipe for little pancakes using ground almonds instead of flour. Actually ground almonds make a great flour substitute in lots of recipes and really improve the texture of cakes.

Do you know if this agave syrup stuff is a good idea, or is it better to stick to honey for sweetening?

Oh, come on doc ring, I'm getting jittery waiting by the phone!

I do use agave syrup sometimes, another thing worth considering is jellies (at least there will be some gelatine in that, not sure if I want to know how produced tho), the problem is that quite recently they use glucose instead of sugar so I am on the lookout for non-glucose ones. My mum used to make meat/fish in jelly too, but I am no expert, I make a fish-type around Christmas.

When I make soup I use org chicken or duck legs as a base for stock.
Generally I am convinced that food is better than meds and going gf will make a big difference :) don't worry about ditching movicol, it's not nutritious in itself.

Doctor didn't ring, so I rang them and it turned out the receptionist had accidentally entered under next Thursday instead of today.

The doctor who was supposed to call was out on call by then, so they got another doctor to call me and he was no help at all, basically saying there was nothing he could do but book ds in to see the first doctor again tomorrow.

So we are no further on. We have an appointment at 5.00 tomorrow, to discuss if there's anything else we can do.

Hi,

Just thought I'd update.

We went to the GPs on Friday evening. Made sure I told him about my mycoplasmic illness and how nothing showed in my bloods. He argued a bit, but did enter it in the notes and listen to ds's chest.

He was totally unaware that the symptoms ds has/d are listed as side effects for movicol!

He said as we had seen a small improvement in ds since stopping the movicol. He'd like us to bring him back in a week and if he's continued to improve we will put it down to the movicol but continue to monitor him. If there's no improvement, he will definitely refer him for further investigation.

Dh and I discussed it and decided as we are home pretty much all week with ds resting lots, its not much of a test of his stamina etc. So we're taking him back after he's done a couple of days back at school to see if he copes with a full school day any better.

Meantime, ds is much happier in himself, but has pretty much slobbed about for almost a fortnight now, excluding dr and hospital trips. We did have to walk from the hospital to the car after his eye appoinment on Tuesday and he said it made his legs hurt and he was quite breathless, so I'm not convinced he's out of the woods yet.

We haven't gone GF yet, as we want to do things a step at a time so we can see which things make a difference to him. We have significantly upped our game in terms of diet though. We're using the water filter, eating only organic fruit and veg, keeping a better grasp on the amount of carbs we/he eats and keeping a tight reign on his sugar intake (not mine though unfortunately ). Oh - and he's getting added ground flax, vegetarian omega oil blend, probiotics and a good quality vit/min supplement as well.

So, its still a case of watch and wait, but at least I feel like we are being proactive in trying to get him back to full health now.

Poor love - hope he feels better soon

Thank you.

Any improvement on the food front should be worth it :)

moosemama i was thinking about you and your boy this morning. how is it going?

can't believe it WAS the movical, but can iyswim.

are there any other improvements??