HMS fatigue in children

[Hatty]

Hello again

We have just been told by specialist that Evelyn (2y 2m, she of the biro mark and the duckling feet) is not actually very badly hypermobile any more after a year of physio, and therefore the level of hypermobility she has does NOT explain the amount of tiredness she experiences. Before we start subjecting the poor child to lots more blood tests and panicking about lupus (which I have) I want to find out the level of tiredness your little ones experience. I start wondering if I'm imagining it, but I'm not: she is just not like other toddlers (her brother, her many friends). It is hard to calibrate because we are so good now at pacing life together: she asks when she needs a rest. How do I describe it? Her character is extremely adventurous, energetic and determined: it is not just that she is a lazy toddler, quite the reverse! She always wants to walk/climb run etc, except that:
1. After insisting on walking somewhere, once we've got about 500 yards she starts stumbling and then asks to go in the pushchair, where she lies still and floppy with her blankie.
2. If I don't have a pushchair and she really does too much, she will end up crying in my arms for up to an hour.
3. If she has a very active morning, the afternoon she will be floppy and ask to lie on the sofa.
4. If she overdoes it repeatedly (eg weekend away: we went swimming 3 times even though I dragged her out amid much protest after 10 minutes) then the next day and a half or so she is really floppy, wants to lie on my lap with her blankie, cries a lot.
5. She always asks to go to bed, both at naptime (12.30-3.30) and at bedtime (7.30), but it seems to be not so much the actual sleep as the physical rest that she requires.

Does this sound similar? She's being investigated by a cardiologist as she has a heart murmur, it appears, but she is never breathless/blue lipped etc so it seems unlikely to me that this is the problem. I don't want to put her through a battery of bloodtests etc if, as I have believed until now, it is just her joint hypermobility that means she has to work harder and therefore gets more tired than other children. The thing is, I don't think her potential exhaustion has reduced, although her bendyness has (wrists back and shoulder still very, hips now much better), but we are better at managing it.

How do your little ones compare in tiredness levels? I would love to hear from you!
xHatty

[Eloise]

Hi, I have no experience on toddlers but I am am just going to say what my logic thinks!

Even if her HMS is under control as in she has strengthened the muscles supporting her joints, because she actually has HMS which is genetic and doesn't ever go away, she will still always have to work 3 times harder than "nomal" people to use these muscles to support her joints. Hence - she will be 3 times as tired as someone else - or only able to do a third of what another person does to get exhausted!

The stumbling when the muscles are tiring is very common - at 30 I still do this! All what you listed sounds very common. It sounds as though you both are going to have to find a way of pacing and making sure she doesn't overdo things. FInding a balance of physical and non-physical activities each day.

[dorimossop]

hiya,
my little fella doesnt have a dx. typical day starts with me waking him up at 8. he goes to nursery at 9. if i dont take the car to pick him up at half 11 he gets really upset because he is just too tired too walk the five mins home. i end up having to carry him (not good for me.) we get home and he is usually too tired to eat lunch and has a couple of hours kip on the sofa. come 6 pm hes asking for his shower so he can go to bed! bed at 7 asleep by 5 past.
weekends he will sometimes sleep all the way through till lunch time and still want to go to bed at the normal time.
this is the normal pattern although its been a bit hit and miss for a while due to his cough.
hes 3 and a half.

dori.

[Alison C]

GOSH say you cannot get less hypermobile - you can strengthen within the hypermobile range you have. So just wondering whether you have had the same person assessing your daughter's hypermobile range?

I think everyone is different with their HMS - we are all made differently. I agree with HMS you do have to work harder to move so can get tired - we pace ourselves so my little ones do not get as tired as others do here - fors and against this really - no right answer - I often feel my ones should do more and get tired/achy.

My gut feeling is you should have an assessment at a HMS CLinic if you can.

Sorry rambling - it is too hot!
Alison

[Clarabel]

Having to use muscle power to hold yourself together rather than having the usual natural structures is exhausting. Yes she has improved the muscles around the problem joints but now she has to use them. It's like a non-HMS person having to spend the whole day with both arms out in front at shoulder height... knackering! My DD is still young but she does have extremely tired days where she will just heap in my arms crying. She isn't tired sleepy, but she is exhausted. I am not sure how you go about pacing a 20 month old! When she doesn't want to sit down, she doesn't! I want to break the boom or bust cycle, it's so hard to plan anything as she often gets up from nap unfit for anything and crying for hours. The afternoon is a wash.

[Hatty]

Thank you so much for your replies. Although the geneticist who assessed her sees a huge number of Ehlers Danos children, I don't think she really understands the daily life with children who ónly' have HMS aspect: which you do. I genuinely think that this is 'all' that is wrong, and that we should not be subjecting her to a million tests to 'explain' why she is tired, when it is obvious from this website that it is quite normal. I think her character is relevant, and because she is such a very feisty and determined little girl, she seems fine just until the minute she drops. Everyone always says 'but she looks fine!' which as someone with lupus is something I'm used to myself.

So of course I will go to the cardiologist appt, and of course I will listen to everything I am advised, but I think the best course is to keep a close eye on her, continue to 'exercise' her without letting her overdo it too much, and keep our fingers crossed for the future...

Easier said than done though!

Thanks and hugs to you all,

xHatty

[Alison C]

Sorry to go on about GOSH - yes I am a GOSH fan! - but is there any way you can get a referral to GOSH? Well worth the stress in asking for it!

Cheerio
Alison

[loudmouth]

My son is 4 1/2,and he cant manage the 10min walk home from pre school,he has to go in the buggy which he HATES its not laziness ignore anyone who says that they just dont get it. My daughter has HMS as well and she still cant walk to school..we have to catch the bus.i think for her age and HMS your daughter sounds fine,at that age,my son hadn't started walking,he was still crawling,of course she will get more tired than your average toddler,she has to work twice as hard.give her hugs from all of us.

[TED]

My daughter who is now 9 has always been tired. I cant remember her EVER being any different. As a toddler she never wanted to walk anywhere. She preferred sit down activities more than run around ones. I always had to take the buggy to nursery/home again even though the nursery was along the street. She could not cope every morning at nursery and only went the days she could manage and at that stage still took naps. So she was a very fatigued toddler and still is a fatigued child!!!!!!

My other 3 were & are not that way as toddlers they have had a totally different way. They have all been kind of hyper. Two are older now my eldest is 11 as a toddler was hyper and now with the hormones is experiencing a lot of fatigue. My 6 year old goes goes goes............ then mega flops. And my 18 month old never seems to STOP....... She does not take a nap anymore and goes all day and is a nightmare to get to sleep at night. For me it is SOOOOOOO exhausting and I have fatigue... believe it or not....???!!!!

TED

[loudmouth]

i can believe that,Ted.my 10 yr old was/is the same,she never does a full lesson of P.E.My 6 yr old is another ball game though......he didn't sleep through the night 'til he was 5 1/4,so I know that feeling.

[bobbles]

My DD is very nearly 6 (yr1 at school), and about 60-70% of the time she still falls asleep in the car on the way home from school.

Last year when she was in reception class, and at the start of the school year sep-nov, she used to struggle just to get through the day at school without falling asleep in the afternoon, she still struggles now sometimes, but school are very good about it.

We too have trouble covering long distances, she is very active, but suddenly just "crashes" and collapses in a heap saying her legs are too sore and achey and she can't carry on, quite often she's in tears at this point - I've seen her try to crawl home on her hands and knees when she's been too tired to walk and she's been forced to go on by someone who doesn't fully understand her situation.

Thanksfully, since she's been doing her physio this has really improved greatly, and we have also been given a wheelchair for trips and days out, when there would be a lot of walking involved.

HTH
Sharon xx

[sarahlou123]

hi hatty
korey has moments of going totally crazy running round with his cousin's, chasing each other, racing cars, etc but a lot of time in the afternoon he curl's up on my bed & watches tv in a sort of 'zoned out' fashion. occassionally he falls asleep if he's had a busy morning. korey also has really bad circles under his eye's even though he goes to sleep at 8pm (in bed at 7:15pm but doesnt go to sleep straight away cos he isnt always sleepy)
tierney has day's where she wakes in the morning & crys & grizzles & clings to me all day! we've had several of these recently & i'm exhausted. she's not sleeping very well at night at the min at all either.

korey stumbles at the time too so i've just invested in a double buggy. he stumbles more when he's tired though

hope that helps a little
luv sarahlou xx


Mod edit - quote removed

[Jobaz]

Hi All

I am new to this forum & so please forgive me if I get anything wrong.
My Son is 2 & a half & we have been trying to figure out what is wrong with him for the last 18months. He has had probobaly had 20 sets of bloods done & seen 4 different paed's! & we just get no answer or diagnosis.. its been really hard... we have even had to go through docs saying he may have leukemia etc... (thankfully he hasent!)
Finally the infectious disease paed suggested we see a Rhumatologist to just SEE if he could find anything wrong... after listening to the list of symptoms & seeing that all the bloods were normal he examined my son & said he was extreemly hypermobile (if 10 out of 10 were the worst he had seen- then he said my son was 8 out of 10 )& combined with his symptoms he has hypermobility syndrome!
We were in shock?? We had never even noticed our son was so bendy? he has never shown any dislocation or joint problems & he has never actually said much about pain? other than he 'sometimes' askes to be carried & says his knees hurt & shoulders hurt (but not often atal.. & only when he's having a real down period when he's so tired).
The real reason & symptoms we have had for this last year is 'episodes' of extreeme tiredness & grumpiness... some days he just sits all day & watches Tv, moaning & whinging & clinging to me & dosent seem. to have any energy to even play..cant bear us even talking to him.. other days he will walk & run & run..like there isent a bother on him? Then... BANG hes miserable & knackerd again.. even sleep does nothing for him when hes like this, often he wakes up even more tired & miserable than when he went to bed.... & has very disturbed sleep.
We have just returned from a holiday where he was ok for the first couple of days.. then he didnt want to really walk.. wanted to go everywhere in the pram (when he's well, i have to bribe him with jelly babies to even get him in the pram!)- he just stod in the swimming pool & just moaned & groaned & just acted like a complete brat (tired) & was just so unhappy & tired for the rest of the holiday.

so.. we saw Nathan Hasson on Monday & out of the blue.. he thinks my son has HMS.... I really really want to beleive that this is the answer to all my childs symptoms... but I am confused & wondered if anyone can PLEASE help with the confusion I have... as you can imagine... having him unwell for 18months & no one knowing what was the problem & at times having to consider serious illnesses... Im at my witts end....

The things im confused with after reading many posts on this forum are: (& I hope some of you can help)
1) (apart from every now & again saying his knees & shoulders hurt) dosent seem in pain? & even when having a bad episode he will walk normally & not limp,dislocate or complain of ANY specific pain? (maybe when he's grumpy & tired he IS actually in pain?? who knows..maybe he's too young to explain to me..but hes very forward with his speech & I would think he would say if he really hurt??)

2)Is it possible for him to have completly normal days where he can run & run & run... & then to just wake up one day so tired & miserable, so pale & washed out? Is it possible for him to have been a normal happy energetic toddler for a 3 month period & then crash again? (can they have flair up's & be completly normal inbetween?)

3)Is it true that toddlers with HMS suffer worse when they get childhood illnesses & catch them more easily?... my son seems to be completly Tired & miserable if he gets just a sniffle when his friends seem to cope with it fine?& it seems to last much longer & really run him down...to the point where we are scared to mix him with other kids for the fear of what catching somthing will do to him!

4)he has got an 'innocent' heart mumur (scan has confirmed this).. is this conected to this condition?

I suppose what I am actually saying is that... after reading all he posts about dislocation of joints & extreem pain etc.... its made me wonder if they have got the diagnosis right?? Im sure dr hasson knows his stuff..but... like i said.. we didnt even notice our son was bendy.. is it possible to have HMS.. but TIREDNESS to be the main symptom & no specific pain that we know of??

Please help
Thank u so much
xx

[jakerleen]

Hiya

It think that all sounds a lot like Dom when he was little. When they are that young they find it hard to articulate what pain actually is, plus remember if he's been living with it for as long as he can remember he will think all of it is normal.

Both of mine could have periods with loads of energy then just drop for days .............. in fact it's exactly the same now, the both get run down and pick everything that's going up ........... then kindly pass it on lol. That disturbed sleep pattern is typical hun, my son shouts in his sleep and wakes up all the time, he didn't sleep a full night until he was 3 years old. Dom would ask to be picked up too and was fine in the buggy, he is still very clingy and has bouts of feeling tired and sad, he will be 11 in just over 2 weeks.

I think you will find that there's no "definite" formula for them, they can have any of a range of symptoms at varying times. Although everything you have on your plate I can hand on heart say I have had on mine too. Cassie is didn't have one sprain until last year! I have ahad a heart murmur since I was very young.

Curiosity is there anyone else in the family who is hypermobile? You, hubby grandparents etc?

Much love

Jackie xxxxxxxxxxxxxxx

[Alison C]

Hello and welcome!

I would trust what Dr H says completely.

I have two children with HMS and I have it too. So here goes to answer your questions from our experience:

- joint pain/subluxations etc
My son started to say he was in pain from 4 yrs onwards but not very much - I suspect that he is in pain but this is what he knows as normal so cannot see that it is pain. As you say, look out for paleness, being grumpy, not wanting to play (preferring tv!), disturbed nights (night time pains are very common). My daughter is more vocal about her pain but maybe she is picking up on what is said around the house. She is more achy as she is more active. The more you do, the more achy you can be - eg if out shopping for 3 hrs or so, I expect to need to chill in the afternoon or the next day. We should "pace" ourselves. GOSH have a fab exercise programme which has helped them to have less pain by strengthening the right muscles - did Dr H offer this? Growth spurts can make them less co-ordinated and more achy (or pale).
My son has subluxations of his thumb/fingers without him realising eg when writing - touch wood, no other subluxations have happened.

- viruses etc
Interesting - sounds like us but I have not read about this. In fact, I spoke to the local physio this week and she said that when your immune system is being challenged by colds, this can make you more achy and less active, asking for the buggy rather than walk. Dr H is used to meeting children who prefer to use the buggy and the exercise programme helps to change this. It is good in some ways he is getting colds before he goes to school as my son had very little colds before he started school, and then caught lots! Has he had chicken pox yet? Many of us here find the scars stay - Dr H likes to look for these as part of his diagnosis - but the scars are whitish (paper like).

- murmurs
My daughter has a normal flow murmur. Many here do have murmurs but it is "mitral valve prolapse" and other valve things which are common. My son has aortic root dilation (dilatation). Search heart at this website. Annual echocardiograms are good to check the valves.

- tiredness
Yes my son was more tired than most. Fatigue is common. One thing to look out for - play - how much does he use his hands and how does he hold the pencil (this may show to others how bendy he is). Listen out for the pitter patter of his feet - when more tired, in pain he may make more sounds.

- being bendy
It is tricky to spot when one's child is bendy esp if you are as we all think that our bendyness is normal! Maybe see if anyone in the family has had subluxations etc.

What a worry that leukaemia was once suggested. I can see why you are asking your questions but please Dr H is fab and I would trust him 100%.

Cheerio
Alison