HMS fatigue in children

[Jobaz]

Thank U sooo much for your reply's & taking time to tell me everything.. I think this is what I need... to hear from people who are just like us....im just finding it so hard to accept this diagnosis because everytime i ask my son of he hurts anywhere .. he says NO... Itoday.. i can clearly see he'sknackered..despite pleny of sleep & I ask him how he feels.. he admits to feeling tired..but when I ask him where he hurts, he says he dosent hurt..he's just tired??? (he is only 2 & a half though.. so i know he may not truely understand?? althoug hes normally quick to say if somthing os hurting!)...he did ALOT of walking yest.. so i expected him to really hurt today?
Im just a very tired mummy... & i supppose I have thought or so long that somthng unthinkabe is wrong with him... its hard to accept this when the main symptom of pain seems to be missing.....so u are really helping me

please keep sending me your experiences... they are heping us so much to try & settle on that maybe Dr H has found ...at last...whats wrong with our darling boy?? who ...when well is such a happy child.. & whenill... is so unhappy
xxxxxxxxxxxxx

P.s/could I also add... when my son is bad...whingy,pale & tired... he eating goes completly downhill... he goes from being a good eater..happy to eat alot of food... to not even wanting the things he normally likes..he has breakfast,, then thats pretty much it?? anyone else found this?

[Retro]

Hi Jo,

It would be well worth reading though this section (including the GOSH subsection) for more family's experiences of HMS/HEDS including eating and digestion

Lindsey

[barkingmad]

Hi Jo,
I have EDS/HMS, as do my three children. My eldest suffers more from pain and subluxations then fatigue...altho he does get this.

My middle son has serious probs with fatigue which can mean he sits/lays down alot and sleeps alot, he is really really grumpy at times, he also is easy to spot when going into a flare up as he just looks so pale and awful and exhausted..He also gets lots of migraines. He does get pain but not as bad as the others. He has always been this way, ever since he could crawl. i used to worry that there was something life threateningly wrong with him, because he was so fatigued, lethargic and didnt want to do anything, he hated walking and running.

My youngest, daughter,, is the most active of the three never without bruises and scars easily,and even rips open a scar on her knee regularly, but always (like several times a day!!! ) complains of pain, sometimes the pain stops her from doing things...this is then when she also appears fatigued, she also tends to sublux her fingers when she is like this(I honestly dont know why )...at other times she complains but is able to carry on with normal activities.

When i was a child i can remember being told that i had growing pains...according to my mum i always complained. But i wasnt diagnosed until late and because we all were so flexible, including my mum,(siblings to) and complained of aches and pains it was never really picked up on. Everything was normal to us.

TBH all 3 are now ready for the summer break, I am struggling to keep them in school because they are so fatigued.This isnt just like being tired, they are completely drained.

My eldest gets time off when he is fatigued/or in severe pain or he has access to a learning support unit,where he can relax on beanbags and work, or his work is emailed home and when he is awake he does it. The other two, who are still at primary, have odd days off when they cant cope with school anymore.My middle son has at least a few days a month off, if not weeks sometimes.

It affects all four of us very differently.

What i would say...having met Dr Hassan with my eldest..is that I would trust him 100%. i was very impressed and he told me things about my son, that i didnt know He has also ,with Prof G, arranged a really good physio programme. And they have requested that the other two are seen at GOSH for assessment.

The only down side is that there are 4 of us with medical appointments,consults, OT, Orthotics, physio etc and i always feel like i am at hospital!

hope this helps,

Try not to worry too much as it does effect everyone very differently and can change for the better at times especially with physio etc Altho you cant stop having hypermobility.
Take care
donna x

[Jobaz]

Thank you all for taking time to reply... i feel totally screwed up at the moment... has he..hasent it.... watching every move.. its doing my head it...!! \its just gone on so long & i think it staken its toll ... i love to hear from anyone who can reassure..
Jo xxxxxxxxx

[Alison C]

Yes - hypermobility is a hidden disability. We all do a lot of watching and waiting to see how things develop with out little ones. HOWEVER a good starting point is a diagnosis, especially from the super HMS team at GOSH (they are world famous re their knowledge of HMS).

I think it would be great if you could see Mrs Sue Maillard, Specialist Physio in Paed Rheum who works alongside Dr H and Prof G. Has Dr H referred you already? She is very supportive and she could go over again where your son shows his hypermobility, and maybe recommend an exercise programme so that he has fewer days of needing a rest. Her exercise programme really helps children to strengthen and to feel less pain etc.

My son rarely said he felt achy when he was your son's age so please do not worry about the lack of pain comments by your son. My daughter says she is achy but she may pick this up from me and she is on the go all the time unlike my son. Everyone is so different with their HMS.

You seem to have had lots of blood tests etc to rule out any nasties - do you feel you have had all the tests available? Perhaps were you not given much time when you were told the tests were negative to discuss all the ins and outs - I find I need to ask more questions after an appt once you have got home and had time to think about it all. Do you have a supportive GP who could discuss all of this with you? You have been through so much.

Do you live near one of the local groups here? It may help to go to one of the meetings. Also there is a residential weekend coming up in Sept - see main website.

It is quite something to face a diagnosis after years or whatever of wondering what is going on with our little ones - I call it an emotional rollercoaster as you can feel fine one day and not the next whilst trying to get your head around things. This site is fab for giving support. Also I try to find things fun to do when I am worrying about things - I go shopping at the local mall! ALternatively I go out and see friends, take children somewhere like our local zoo - just to help me over the low times. Things do get better with time especially if you have a good support at home, within the medical world and here.

I hope this has helped. Your little boy is very lucky to have you as you have found out about HMS. Many children do not get diagnosed till much later and they have missed lots of physio.

Cheerio and please keep posting - we are all here for you and honestly we have all been where you are now.
Alison x

[Alison C]

You should receive a letter from Dr H to summarise his clinic assessment. This should really help to see things in print.

Did Dr H say that he thinks David Beckham has HMS? Sending you lots of positives.

Cheerio
Alison

[Jobaz]

Thank you so much Alison for all your help... you are very kind
Y es I got the letter ysterday & you are right..it did help a bit to see it in writing... & we are booked in for his first Physio session at GOS on 30th.
Ye she did mention that David Beckham was hypermobile... not sure he has the syndrome though?? has he?
We went out to Godstone farm in surrey today.. we were only there for half a day.. & Benjamin looked tired when we were there...but walked everywhere & ran alot...but we can see he's shattered now & hope we dont pay the price for it?!

Joanne xxxxxxxxx

[Jobaz]

Hi... Im back again... felt I really needed some support...
After my last message about going to the farm.. I was right... we have paid for it !
& for the first real time he has told me he is hurting!! On monday, he woke from his nap saying his legs hurt..crying....he walked a few paces & then just cried saying he couldnt walk!! however..after about 10 minutes.. he seemed alot better & then played in the garden (nothing energitic..just quietly with his diggers)...can they hurt like this one minute & then feel fine 10 minutes later?? is it a stiffness pain??? any views/experiences woyld be great.
so..... I think this is the last peice of the jigsaw.... I have finally seen the pain... im sad about this... but in a way I needed to see this part to be able to fully accept & deal with the diagnosis!??
My mother picked him up the other day... & he cried..came running to me saying nana hurt me???? my mum was so upset... but he pointed to his shoulders & elbows saying she hurt them?..she was only gentle picking him up...he did it with me again later that day... but then nothing... he was ok to be picked up? have any of you experienced this when picking up your child????? can certain bits of them hurt one minute & then be ok the next??
his grumpiness the last few days is off the planet.... after a 3 hour nap yesterday he was ok..ish.... but then after a couple of hours... he's being so bad tempered & miserable! do you see your children being this miserable??
we are also have real trouble getting him to bed at night!! no mater how tired he is... he's taken about 2 hours to settle down to sleep....he's just being so naughty... now Im sure alot of this is due to his age..but he is actually trying to get off to sleep as he goes quiet for about 15 minutes... then he starts up again?? somthings stopping him or bothering him!? i dont know what to do to help him?? we have tried calpol & neurofen.. but it ddnt really seem to do much?? do any of you have any tips/experiences for this getting to sleep problem? ...also.. the pain...what should I do to help him when he says hes hurting? any tips?

I must say aswell... im hating the way certain people judge & try & diagnose us..& beleive it or not..family members are the worst!! they see him for a couple of hours one day...he's so happy to see them that he pushes himself & is full of life... they then leave & he's in a terrible way...takes hours to settle to sleep & then is like a dead duck the next day... im so sick of them saying ..."oh...all toddlers are like that... its a phase...nothing wrong with him..looks ok to me....some of them really think that he's just a norml child & we just make a big deal of it?? Im lucky I have mu hubby at home all day (he works from home) & my mum comes to stay for long periods of time (1 week at a time as she lives a long way away) & so... I have these to see the REAL child..to see just how awfull he can be after pushing himself!!...but im so down & fed up of judgemental people.instead of support..they just add to my problems.....

Im sorry to ask so many questions .... hope someone can enlighten me or give me any tips xxxxxxxxxxxxxxx

[Alison C]

Hello

Firstly I would mention this to your team at GOSH when you next go - or have you just been?!

We all face the relatives-factor, as I call it! And others. You just need to keep explaining how things are, mention the website, show leaflets etc. Sometimes I realise now that people are trying to be positive to help us feel happy but it can have the opposite effect!

Re pain and sleep - some children with HMS can seem to have dyspraxia ie problems with sensory processing so that they avoid or crave sensations. My son used to dislike the deep touch of cuddles (I am wondering whether this could be the case for your son?) but then this changed and now he loves them! He used to dislike hair combing, teeth brushing, rubbing dry with towels and so on. This has all changed. He used to try to avoid light touch eg paint, water play. With OT advice, this all diminished in time using sensory integration therapy ideas. He continues to dislike loud sounds. It was not pain really but discomfort. He can be tricky to get to sleep - he is helped by having a duvet around him and a blanket - to provide sensory feedback - and he puts his head touching the headboard - this could all be to get a sense of where he is eg proprioception. (nb he loves beanbags to relax even tho they do not give good posture!). I remove the blanket as he overheats (another HMS thing!). We did try a memory foam mattress overlay however this did made him hot however gave him comfort.

Sorry if this is a bit muddled - Tombliboos are on TV!

Yes my children say they are in pain one moment and then not the next. Watch out for red herrings too! They soon learn to say they are in pain to get chocolate, cuddles, more attention - you have to judge if their pain is real. Mostly the pain is real. I know it is tricky but try not to ask too often if chilldren are in pain - rely on your gut feelings by watching them at play etc.

Back to the Night Garden!

Cheerio and good luck with GOSH
Alison

[ratty]

hi. i can associate with most of the replies on this post!!!!!!! my son seems to be in a relapse at the moment and its worrying me sick!!!!!! he has no energy and isnt eating right and sleeping loads. hes been complaining of chest pains too which is worrying me as he has a murmur so am gonna get it checked out. im dreading him going back to school as i dont think hell cope at all. hes back to using his buggy when we go out too and have had to get erpair man out today who says its knackered basically!!! hes gonna try to organise a wheelchair for him now. so hopefully .......
not be on here for ages!!!!

[gila]

I have no kids and it's been a loooooong time since I was one- but I do remember I always was a marathon/endless sleeper- never ever woke up parents in the morning, they always had to wake me up- mum was happy with this whilst a baby, but later on it did become a problem at times... she had to carry me around at times till I was 'way too old' for being carried...
and despite sleeping 'forever' and being v v tired... I had real problems with getting to sleep... I so remember my mum always saying: what is it with you? first you dont want to go to sleep, then you dont want to wake up...
I dont remember 'pain as such', just getting v easily tired out/exhausted.
I was an utter, downright dangerous klutz, learning musical instruments, learning swimming and gentle(!) gymnastics seemed to help that though.
I got every infection and childhood disease going, for a while it was like perma sore throat and ear infections, even got pneumonia...
from about 8 or 9 things 'normalized', apart from sleeping.
in teenage hood I had probs with fainting all over the place, got put on blood pressure raising meds for a while (was in germany), but nothing else.

then I had a normal life till my late 30's !

sorry for 'butting in' as a non-parent, just thought it might give a ray of hope that there can be 'normal' times ahead...
xxg

[Jobaz]

here is my latest email to Dr hasson at GOS.. what do you think? He has now come back saying that this is not normal for HMS (including the level of fatigue?).. im very concerned... any idea's on maybe what else is going on or have your young children ever been as bad at this?

" Dear Monique (dr hassons sec)
1) Since the appointment with Dr Hasson we have seen Sue who has advised that Benjamin is too young for start proper physio. She & has advised us to pace him, doing 1 hour exercise/activity a day ( no more… & no less) to try & strengthen him & to avoid any boom & bust & we will see her again in around 6 months, but that that’s all we can do
We have done this without fail each day & will continue to do so, however, 8/10 days he is struggling to cope with this. We feel his ability to actually walk is getting worse, with most days after 5 minutes saying he can’t walk & begging to be carried..saying he hurts. Of course we try distraction & even bribery, but we can see he is really struggling, walking so slow & not his usual running bouncy self & very pale …& eventually even bribery doesn’t work & we have to carry him.
He also said today despite a 12hours sleep last night that he was very tired, he seems constantly tired & spends a lot of the day wanting to just lay around. He also complained today that the sofa was hurting him & got really agitated & looked very uncomfortable pointing to his arms & back etc.. saying the sofa was hurting him. Strange thing to say..mentioned in case relevant in some way?
We have paced him & never ever overdo it with him & so are worried he’s actually getting weaker despite sticking to this regime. We are hoping you will say this is normal & not to worry & that he’s just having a bad period, however thought it important to point out his decline? Is there any more we can do to help him?

2) The other worry we have at the moment is Benjamin has been ‘Dry’ in the day since the beginning of April & is not a child who has accidents. However for the past 2 weeks or so he has been having several (2 or more a day). Today for example he has had 5 weeing accidents…not just dribbles… whole wee’s. It seems to be when he’s in a relaxed state & despite having been to the toilet not long before, he will just sit there & wet himself. He says sorry & that it was an accident & he forgot? I am aware this could be a phase, but doubt it, as Nothing has changed to spark this off? (I got a midstream sample off him today & it’s gone to the lab to check for infection..just to rule out)
I wanted to make you aware of this & am very worried to why this has suddenly started to happen? Is it related to HMS or could it be a sign of something else going on? (family members have been mentioning Diabetes & Muscular dystrophy! Helpful …Not! Are they right to be concerned?)

3) We have noticed the last couple of weeks He has been obsessed with Smells, this is probably of NO relevance atal but thought I would mention. He gets quite upset at strong smells- e.g.: garlic, dog, cooking etc.... despite having smelt it all his life he actually puts his head out of our window saying he doesn’t like it & makes a real fuss!

[Alison C]

I can see there is HMS going on re pain and discomfort but it does sound more than experienced by my children. Does Dr H suggest who you should see next? We have not had the wee issue. Maybe go back to Dr H and ask his advice where to go next. If you are getting nowhere, I suggest rather a drastic step and go to an AE dept of a children's hospital for advice as I sense you are extremely concerned.

Thinking of you
Alison

[Finarda]

My children don't have fatigue nearly as severe as your son. However, they definitely do have fatigue - in fact my daughter's school admin asked me specifically if there was anything she should know about Alex as she was often very pale and tired looking and would come to her reporting that she just didn't feel well (headache or dizzy or tired).

One piece of advice that the pediatrician advised us was that we shouldn't keep asking our daughter if she had problems (pain, heartburn, reflux etc) but instead she told my daughter to tell us every single time she had a problem. After a few days of this we realised how bad she was. I also doubted reflux in my son as he'd never complained about it and I'd never seen any evidence of it until I tried the same with him - it helped that he was closeby one time he had reflux and spat it up onto the floor!

With my 4 year old, it's only been this year that he's really started to complain about the pain up and down his legs. Before that he would just ask to be carried a lot. I also put that down to him just being lazy or wanting a snuggle. The trick with him is to find out which is which as he will fake it as often as he thinks he can get away with too!

Is there anyone else in the family who is flexible or who has had joint problems? This might tend to make you more or less convinced if he truly has HMS. However, it may be unlikely but it doesn't necessarily rule out other issues at the same time.

It's good that you followed up with your doc if you're still concerned. My philosophy is "go with your gut instincts".

Good luck,
Fiona

[Hatty]

Hi there

I'm so sorry to hear of the horrible time you are going through, and I wanted to give our experience which sounds similar but (so far!) has a happy ending! It sounds to me like your little one has HMS, I must say, in that it sounds so much like our story...
Evelyn was diagnosed at about 14 months with HMS (I had known there was something 'funny' about her from birth) but didn't really start having problems (except delayed development) until she was walking at about 20 months. We then had a period when she was exhausted all the time: she'd be playing energetically and then just suddenly flop herself down and cry and cry. Or she'd have a busy day and the next day not want to move at all. She started physio at 2 (she's very focused and unusually could follow the instructions so it was possible to start that early) and we learned how to deal with the situation and to pace her, basically. I was worried sick (quite literally) about her for a long time, especially since I had lupus and we thought she might have a connective tissue disorder (she has thin skin, an innocent heart murmur, scars fairly easily but luckily it turns out there's nothing else going on). I worried so much about the exhaustion and the idea that my baby was in pain, and the fact that people would always say 'oh she looks fine to me' when I saw the other side.

BUT she is doing fine now! The key for us was learning about pacing. Hypermobile children MUST exercise. Basically they don't have the passive stability, so they must build up active stability (muscle), and the sooner they start the better. However, they need to learn to listen to their bodies and to take rest periods. Evelyn would play for a bit and then say 'tiny sleepies', and would sit in her pushchair or lie down on the sofa for a rest. She has a blankie and if we had that with us, it helped her to relax. Her wonderful physio was really helpful, and also it matters that your lifestyle is adapted a bit: walk to shop, pushchair back, dance to music, then have a rest, whatever. We go swimming (for VERY short period of time) once a week, and Evelyn now does ballet weekly instead of physio. The awful exhaustion has almost gone unless she does way too much: basically she has built up enough muscle to keep her going. It is very noticeable (and apparently this is very common) that when she is ill she just flops and turns into a ragdoll, basically when her muscles feel weak it all goes.

Anyway, all children are different, but the most important things we have learned are:
Keep alternating movement and rest in tiny doses with little ones
Don't overdo it because the child looks fine: take the pushchair for the return journey!
Have a comfort object to help them relax in rest periods
Try not to worry yourself too sick, ask for support and advice: a good children's physio is absolutely worth anything
Keep moving!
Paracetamol and warm baths can help sore little legs

Do remember that it's great that you are on the case: plenty of children are just labelled 'grumpy' or 'lazy' or 'clumsy' because their parents haven't realized that they have this problem.

Re sleep, I recommend a wonderful book called 'the no-cry sleep solution for toddlers' by Elizabeth Pantley, wonderful practical empathetic book.

Good luck!

xHatty