Yr7 DS ill every weekend. What can I do?

[Tuhlulah]

Every weekend since term began my DS has been ill. He is 12, growing, tall and strong.

He gets through the school week and then on Saturday morning feels ill, usually with cold type symptoms. This weekend he had a cold, then yesterday had a really bad headache. This responded well to Brufen but not much to Paracetamol, implying it might be somehow to do with inflammation -sinusitis? Or migraine, as pain was at one point over one eye. He woke up at 4am on Sunday morning, couldn't sleep, then by 6.30am the pain had started, and eventually stopped at 6pmish.

Today he has the faint remnant of a headache, but had disturbed sleep (so he said, but DP said he heard him soundly sleeping) and doesn't feel on top of the world. I have sent him to school because if I kept him home every time he felt ill he's never go. We had terrible attendance last year (Yr6), less than 85%, because I did keep him home when he felt ill, and he had a couple of viruses that were long lasting. Also, I don't want him to fall behind in Yr 7 through absence; he is bright, but it's a lot of extra work to catch up, and it'll make him stressed if he has to catch up on loads.

DP and I have constant disagreements about all this. he thinks I am being too soft, that DS is a drama queen and should 'man up' and go to school when he is feeling crap, because that's life. I think he's being too inflexible. (THis morning I kindly reminded him of the time he said DS's testicular pain was just one of those things that men get; DS was being operated on by 10.30pm for twisted testicle.)

In short: why does DS get ill so much? Is it because he is just tired out by new school and getting up at 6.30am? And homework routines, all the new stuff? (But he was ill a lot last year, which I partly attributed to the stress of entrance exams, etc). Is it that his immunity is low? If so, how do I boost that? Or is it that he has a virus which has never really cleared up?

For example: He developed an ear infection in August. GP said no antibiotics. We went on holiday, all fine. On return, DS has ear infection in both ears which two separate lots of antibiotics couldn't get rid of. Another GP appointment, who says just a virus, but don't know what, and just ride it out. What he has now just seems to be a continuation of that.

I am baffled. Also feel it's all my fault. Feel guilty about sending him to school when he's not 100%. Feel worried he might have something sinister going on as yet undiagnosed.

Re diet, it could be better.We don't eat junk food, no fizzy drinks, few sweets. He does need to eat more fruit. He has just started cod liver oil (DP suggestion).

All advice gratefully received.

Ok, so we went to the paediatric department and saw registrar and the director of paediatrics. To cut a long story short -because we arrived at 9.20 and left at 12.00 -he didn't have to have extra blood test, they used blood they had. All blood tests results are normal, white cell count normal, no glandular fever. No horrendous diseases like Hodgkins or leukaemia.

However, upon examination and following taking history, we discovered he is hyper mobile. (I have known about this for a while, I know he can get more tired than other children because it makes more energy for him just to 'be', to stand up and move. But somehow didn't think it was relevant). He has just gone through growth spurt and is height is now off the chart, 1 in 250 boys his age are his height. Plus he is taller than might be expected for a child of his parents. (But he has tall extended family members).

So height plus hypermobility plus high palate and long limbs (luckily they didn't see his toes) raise possibility he may have Marfan's Syndrome. We have been referred to GOS for genetic testing. If he does have Marfans he doesn't have heart problems, doctors did emphasise that when we check it out on line we'd get scared. He doesn't have all of the indicators, but you don't need to.

So, children with hyper mobility tire more easily and because he has had a growth spurt, plus new school and new germs, plus an earlier start, he has just been unable to resist viruses and they are harder for him to fight. Night sweats and spleen all indicative of the virus he is fighting as opposed to any specific disease.

Marfans or not, regime is the same -exercise regime to strengthen muscles to help with hyper mobility, Vit K supplement (because that can be connected to the pain he feels in hip.

Await appointment from GOS for genetic testing, then back to director of paediatrics for follow up appointment.

Marfans is a dominant gene, only needs one parent to pass it on. I had never heard of it. I am so hoping it is only hyper mobility -it appears he gets that from me. (I though everybody could put both hands flat on the floor with knees straight?)

So, after he has fought off this round of viruses, we will begin a gentle exercise regime, maybe start with some fast walking on the heath, and swimming. Or maybe even a pilates class?

Sorry this is a bit garbled, but I am just a bit shell shocked.

Oh gosh op!
What a Day for you and your ds.
I have heard of marfans, and like the dr said, DO NOT google...
Hope it is "just" hyper mobility but glad that he is being seen and they are investigating everything for you x

Glad to hear it's not an awful disease!

Hypermobility is very relevant. I'm badly hypermobile (not Marfan's syndrome, although I have what my rheumathologist calls a 'Marfanoid habitus', ie a lot of physical features of it like the long limbs, very tall etc) and it really does affect my life. Today, for example, I should be in the uni library doing research but because I was there yesterday and their chairs are murder on my joints, I am not because everything hurts and I can't walk without yelping every second step.

Exercise is good. Swimming much, much better than fast walking for the hypermobile - walking is hard on the ankles, hips and knees, whereas swimming builds muscle and stamina without jolting the joints every time you put your feet down. Yoga is also good but find a teacher who understands hypermobility properly (and learn about it yourself first so you can make sure they do); a yoga class with a teacher who doesn't understand what is and isn't safe for a hypermobile beginner will do far more harm than good. Last time I started with a new yoga teacher who came highly recommended to me by someone who should've known better I couldn't walk for a week afterwards. Never went back before the class did me actual damage.

For now, until he's better, let him take it easy. Hypermobility makes life exhausting, and painful! It took me until I was 19 and at uni to realise that it is not actually normal to be in pain all the time. I just thought everyone felt like that.

Is your house nice and warm? Especially at this time of year, when the weather's on the turn, I find it creeps into my bones and everything is just that much harder and it actually starts to make me feel physically unwell if I am cold, which is generally more quickly than an average person feels the cold. Maybe crank up the thermostat a bit if you can. How is his mattress? A good mattress, or even just turning the one you have if you haven't lately, might help the disturbed sleep. Sorry if this all sounds really obvious, I'm just trying to think of small things that make me feel better and help me deal with the inconveniences of hypermobility :) Good supportive shoes. I wear boots only because my ankles are a wobbly disaster, might be a bit harder if you're having to comply with a school uniform policy though.

Building strength and stamina is the way forward, in combination with him learning to listen to his body so he doesn't push himself further than he should and end up in a cycle like he is now, of pushing himself to get through the week then crashing at the weekend. I didn't do either of those things early enough, which is why I have so many problems now. My mother, who is also hypermobile, learned them later than me, and has more problems still - so as you can see, the sooner the better! It is great that this has been picked up in your DS now, he is old enough to understand and listen to what his body is telling him but young enough to reap the benefit of early treatment. I understand you're shellshocked but really, it is going to be ok.

And one other thing - maybe have a word with your DH regarding policy on 'manning up'. The hardest thing I've found about hypermobility and the problems it causes is that it's invisible. To everyone who doesn't know me, I look like a healthy young woman. I constantly worry about being a slacker, or that people will think I am just making it up, and have at times pushed myself to do things when I shouldn't have because 'everyone is doing it, I should be able to do it, I should just man up, I'm not that unwell really' and then collapsed in an undignified injured heap at the end. I'm sure your Dh is a kind man who will take medical opinion seriously, but if he is a 'man up and get on with it' type he should be careful to make sure that that doesn't mean 'pretend there's nothing wrong at all', because that could give your DS the wrong message entirely.

Thank you both.

Yes, google is like Macbeth, it doth murder sleep.

Naoko, thank you for your common sense advice. Thank goodness I have always bought good shoes, supportive inside with proper shaped insoles. But with long pianist toes (Oh, how I used to joke about them until I saw google images of Manfan sufferers' feet!) it's never been easy to get good shoes, although I have always sought out the best I could. So I can rest easy no damage caused there. Winter shoes are normally boots, so good ankle support. Sandals are always difficult.

And as for cold, we rarely have the heating on because DS and DH never feel cold, whereas I am always freezing! Bed -I will turn the mattress tomorrow. And I will look for a pilates class, and take the walking slowly. I have just read about burst blood vessels so I certainly won't be pushing it. I have a cross trainer -what do you think about that? For building stamina slowly, and it's not bad for joint stress, because the foot isn't meant to move off the plate. ???

DH, bless him, is worried and trying not to think too much about it whereas I am obsessed. He feels terribly guilty that he had the 'man up' attitude. In many respects he is right, and I sympathise with him because DS is a lazy little sod sometimes -because we have always treated him like a prince, and DH was the one who set the tone for this. He means terribly well, but is flawed, like we all are. And scared. High anxiety means he needs to be able to control things, and of course this is out of his control. I can't worry about him too much just now.

DS fits some of the profile, not much, and I am still desperately hoping he doesn't have it. I will have to take the hypermobility more seriously. That in itself sounds pretty bad, Naoko. DS isn't suffering like you

And (1) he doesn't have the diagnosis yet and (2) he may not have it severely, although I read that all symptoms get worse as people age and (3) we will just have to cope with it, whatever 'it' turns out to be, and be thankful it isn't worse. We are lucky we got early treatment.

In the meantime I am meant to be writing up my PhD dissertation!

Agree with the swimming.
Also, Pilates would be good for core strength.

....and do post on the sn boards re the hypermobility.
Some very knowledgable people on there....

A cross trainer should be ok, it's the only machine in the gym I've never managed to injure myself on and if even I can't hurt myself on one of those they really must be pretty gentle :o

Hypermobility, if it is just that rather than fullblown Marfan's, does affect people differently, as you've already noted. It is perfectly possible that it won't affect your DS very severely at all, and all he'll have to do is be a bit aware of needing to listen to his body and make sure to build strength. So try not to worry until you know more! I know that's hard, I'm a worrier too.

I too should be writing up my PhD dissertation. Which is obviously why I'm on MN instead....

Because everyone was so kind I though i would update.

DS seems to have made a good recovery from the current virus, good colour, good appetite. He is taking all the supplements without a quibble, so maybe they have made a contribution. Am getting him up 15 minutes later, and getting him in bed with lights off by 8.30pm, and most nights he has been asleep very soon after. More meat and protein in his diet, pro-biotic yoghurt and fruit (not easy, that one). Less crap (like sugar-laden 'yoghurts), more real food.

He says he feels a lot better and has more energy. Today he has some PE at school, and as this is low key (badminton) we are OK with that -he likes it and not much running around. However, I have vetoed the football until I know his spleen is actually not tender.

In the meantime I have found a local pilates class -we will probably do a couple of one to one sessions (as we are both a bit nalco) and then move into the mat classes, once a week. If I like it I will keep it up (being a bit bendy myself it may help) but I am only going to get him into it. Plus it is expensive, so it's vital he does it, but I may have to do without. We'll see. And after half term, swimming once a week too.

Have stopped stressing about the Marfans. I spent all weekend getting him to do various tests -he can do all the Marfans ones, but his arm span isn't greater than his height. I drove myself mad with it, but now I have accepted you need genetic testing to identify if you actually have that as opposed to something like hyper-mobility with Marfan habitus (?), so I have no chance with a tape measure and the internet to guide me.

But I am so pleased he is getting back to normal.

x

Just wondered OP have you tried garlic capsules for DS. Must admit b sure if they recommend for children. But I have sinus problems with ops in the past, and the garlic keeps the problems away now. I have recommended it to loads of people who have also said that it keeps their health better. Good luck