Teenage son pain and exhaustion - please help

[SuzanneHH]

Hi,
It's been awhile since I have posted on here. A couple of years ago CM was diagnosed with HMS but not as profound as my own HMS. As a child he never really suffered from any of the normal problems but he is now a teenager in his 10th year at school and he is spending more time at home than at school.
I wasn't worried to begin with, he had an extreme reaction to his first big growth spurt. He slept for 20 hours a day for 2 weeks and then bounced back. We checked with the doc and she said it does happen even with normal kids and not to be too worried about it.

So life went on for a couple of months and then wham another growth spurt, another 2 weeks off school. (thankfully CM is doing really well at school, so missing a few weeks wasn't such a concern, the weeks he missed he quickly caught up on).
Then he started complaining about knee pain and was bearing more weight on his left leg. We let it for a couple of weeks, but instead of it going away it got worse, so back to the doctors we go. This was easily diagnosed it's a knee complaint common in teenagers, especially boys. He has been on ibuprofen for about a month now.

There seems to be no sign of him getting better, he is sleeping heavily again and I'm not sure if that could be the painkillers or another growth spurt.

My partner asked me if I thought he was trying to pull a quick one. It was a fair question, we've only been together a couple of years so he really doesn't know CM well. But, I have to confess I had thought the same question and feel a little guilty. If he was doing badly at school or having issues with his peers, then it would be a question I would look at more carefully. There was one time where I thought he was trying to pull a quick one, so I forced him to go to school. He burst into tears as we were driving there and I knew he wasn't faking the pain he was in.
Physically he has gone from an averagely plump boy to a tall rake thin teenager. He looks almost anorexic but I know he is eating, but he just isn't putting on any weight.

I wish there was some way I could wave a magic wand and make all the pain and exhaustion go away. I am going to the doctors again with CM, this time I think I should push for him to see a specialist of some sort.
I don't know if this has anything to do with the HMS, hence why I am writing to you all here, to see if anyone else has had the same experience with their teenagers.

I am finding it hard seeing my son suffer like this, and I feel so helpless.

Any advice would be appreciated.

Thanks

Suzanne

[cyberbarn]

Hi Suzanne,

We just got back from a dietician and I can really feel for you, your problems are very similar to ours!

Hi,
I wasn't worried to begin with, he had an extreme reaction to his first big growth spurt. He slept for 20 hours a day for 2 weeks and then bounced back. We checked with the doc and she said it does happen even with normal kids and not to be too worried about it.

We had this too, and thought it would pass, but when it didn't we started down the road appointments. Peter hadn't been formally dxed with HMS (just got the EDS3 though last week finally) and also has Aspergers so we were always balancing the anxiety of appointments with the expected outcome, so we left it at first. But after a year when the fatigue just didn't go away, we started seeing doctors.

So life went on for a couple of months and then wham another growth spurt, another 2 weeks off school. (thankfully CM is doing really well at school, so missing a few weeks wasn't such a concern, the weeks he missed he quickly caught up on).

Luckily we home educate but it is clear that they are on the look out for those kids that are struggling with school. It can be hard to tease out the difference between not wanting to go to school and not having the energy or having too much pain, but we know our children best.

There seems to be no sign of him getting better, he is sleeping heavily again and I'm not sure if that could be the painkillers or another growth spurt.

Peter has been tired and sleeping a lot now for nearly two years. He refuses to take painkillers. I think that is where the autism affects things, he doesn't think he is in pain but I can tell he is by his behaviour. We are now having physio to try to strengthen his muscles so that he is in less pain, which we hope then will allow him to take more exercise and then he will eat more, feel happier and so on.

It is as if his HMS has morphed into Chronic Fatigue/ME. And yet he doesn't tick all the boxes for that. The paed has said in her letter that she feels that there is a multifactorial element and the fatigue isn't down to just one thing, so can't be treated in a traditional way.

My partner asked me if I thought he was trying to pull a quick one. It was a fair question, we've only been together a couple of years so he really doesn't know CM well. But, I have to confess I had thought the same question and feel a little guilty. If he was doing badly at school or having issues with his peers, then it would be a question I would look at more carefully. There was one time where I thought he was trying to pull a quick one, so I forced him to go to school. He burst into tears as we were driving there and I knew he wasn't faking the pain he was in.

Welcome to the Guilt Club! Many mothers belong! I have questioned Peter too, especially around the time we got the wheelchair for him. Was I making it look like he was worse than he really was? Was he making it all up because he was lazy? But then we realise that yes, they really are in that much pain or are that tired. I was so relieved in a weird sort of way when Peter fell asleep at the table during a robotics meeting in front of all the other mums! I felt that I was vindicated in my believe that there was something not right about my son!

Physically he has gone from an averagely plump boy to a tall rake thin teenager. He looks almost anorexic but I know he is eating, but he just isn't putting on any weight.

Have you measured how many calories he is actually taking in? I did that and was shocked that even though I though Peter was eating he was only getting about half the calories that he should have been taking in. He has a self restricted diet because of the autism, so today the dietician has said that he needs to start taking a supplement as his weight has dropped on the centile chart. She said that if kids stay on the same centile then she isn't worried, but if their position on the chart drops then it is time to get more calories in. And more calories means more energy for them to help fight the fatigue.

I wish there was some way I could wave a magic wand and make all the pain and exhaustion go away.

Oh yes please. It hurts us to see our children hurting and to feel helpless.

I am going to the doctors again with CM, this time I think I should push for him to see a specialist of some sort.
I don't know if this has anything to do with the HMS, hence why I am writing to you all here, to see if anyone else has had the same experience with their teenagers.

Yes, our paed seemed to think it was all related but it was a discussion with the head of paed physio in our county that gave me hope. She said in her experience these kids do grow out of it. It just seems a matter of keeping them going, keeping their calorie (and calcium) intake good, getting them to exercise to strengthen and sometimes lengthen the muscles that are affected with the growth spurts, and keeping their spirits up.

And I am reminded of a boy that I had a crush on when I was about 13. He was 16 and was a maintenance boy at the summer camp I was working at. He had been a strong worker the year before, but that summer he slept all summer. I am not joking! He was tall, skinny, and probably hypermobile although I can't be sure as it was many years ago. They let him sleep his way though the summer and the next year he was fine again.

I am finding it hard seeing my son suffer like this, and I feel so helpless.

I have no easy answers, but you are not alone, and it helps to hear from others who are in a similar position. So thank you for sharing with us!

Cheers,
Jennifer

[SuzanneHH]

Thank you Jennifer!

I am so glad I posted here. I didn't realise how much this was actually affecting me. It's forums like this that ease the isolation. HMS is one of those disabilities that you can't see clearly. So people doubt your ailments. And when it is affecting your child, it throws up all sorts of emotions.

I shall keep in touch and let you know how it goes. I'll keep a record of CM's calories intake, that's a really good idea.

[Eloise]

Hi Suzanne,

I want to say well done for looking out for your son - he is really lucky to have a mum like you looking out for him. I know as a teenager I was quite often told off for being lazy - but I think the teachers realised that I wasn't when I slept through most Math lessons (but still did well).

I would just like to point out as a Pharmacist that the ibuprofen won't be causing any of the tiredness, neither does paracetamol if he needs to have that as well. So it looks like unfortunately it is the pain and exhaustion of HMS that is probably to blame. Again, I would like to agree with Jennifer that you need to actually look at his calorie intake. Growth sputs do require ALOT of energy and calories, and if he is tired most of the time, he probably won't be eating as much as someone full of energy.

Trust your gut instincts on how he is feeling - you know him best. Yes, kids can seem to brighten up for a short while when faced with something really interesting (but don't we all) but then will often collapse more than double afterwards. So pacing is really important to ensure he does the right things, i.e. eating, physio, a little school work, but also make sure he has some things of interest and relaxation so keep his mood up.

Keep going - your doing a great job

[barkingmad]

Hi Suzanne,

I want to echo what the others have said as well.

Every thing you said I could relate to happening to me when I was a teenager and now watching my kids go through their teenage years...and my niece actually as well.

I keep reminding myself that the children dont know how I was when I was a teenger so it is unlikely that they are 'pulling a fast one' (I have queried that to myself many times) as they seem to match my own childhood symptoms.

Keep doing what you are. Encourage healthy eating and look at possibly finding some high calorie snacks, nuts, some cereal bars, you can get high cal shakes as well. But be careful because you dont want him to go the otherway.

Try to keep him to a normal sleeping pattern, even if he is tired it is best to not let him sleep during the day (having said that I would be sick if I didnt sleep when I needed it, so perhaps try limited a snooze to an hour in the afternoon and adjust accordingly. My eldest has ASD as well as EDS and his sleep pattern is honestly appalling. I am ashamed to say he doesnt do what he should and with his ASD trying to enforce good sleep hygiene is a nightmare but so much research has suggested that poor sleep patterns contribute in a huge way to the fatigue and chronic pain aspects of long term conditions so if your son will allow you to guide him then try to do as above.

Please dont feel guilty or alone because you arent many of us can relate to the difficulties you are facing.

[christianne]

Hi Suzanne
I know I am late to the party but, like Donna (barkingmad), wanted to say I feel for you and can empathise with your situation which echoes that of so many of us on here.(What a great reply Jennifer!) My 13 year old definitely is more tired (and in more pain) when he has a growth spurt and he is yet to have the nightmarishly huge boy to man growth spurt. My suggestion for CM would be to take more painkillers? If he is in a lot of pain then that will make him exhausted - there is a direct correlation with how much pain my son is in compared with how tired he is as a result. Have you tried adding paracetamol and if you have and that hasn't helped, try buprenorphine patches or tramadol, if CM is in a lot of pain it could be the ibuprofen isn't enough.

The guilt club - yes I think, talking to other mums with affected kids ,we all experience that - either wondering if they are exaggerating it or even if we know they are not,we end up thinking that it is best to try and chivvy them on to try and go to school - sometimes when we do that we then see their pale faces come in and them flop crying with exhaustion at the end of the day, or they end up being sent home ill with pain. I think we do have to trust our gut instincts - we know our children best.

Have you thought about pacing, as Eloise suggests? Maybe CM could go to school part time when he is on a bad phase? My son goes to school part time and this is what is working as a pacing strategy for him, otherwise it was boom and bust - he would manage a day or two and then be off. He, like CM, is bright and is coping not too badly with the catching up on what he has missed.
My other suggestion is to see GOSH again (if you have done in the past - or get a referral there if not). They often end up doing a second course of rehab for kids when they reach their teens and find they worsen as their muscles and ligaments struggle to catch up with growth spurts. Maybe increasing CM's muscle strength will help?

Anyway, hope it helps knowing you are not alone. There are times when I feel exactly the same - isolated and as if I am the only one with a child that can't do all the normal things. Especially when the disability can't be seen by others and they don't understand. The magic wand thing, i would be rich if I had a pound for every time I had wished that!

Christianne

[SuzanneHH]

Hi Caroline,
Thank you for your message and it's never too late to join the party.
In fact your timing could not have been better. CM has been in so much pain so I took him back to the Docs. He's now taking Ibuprofen and co-codamol. We are going to see the children's specialist in Reading soon. Mainly to do with the Osgood Schlatter's disease, as it is his left knee that is giving him the most distress. I think I may push to be referred to the HMS specialist in London. We used to be under Prof. Bird but as both of us were managing well, we were signed off. We are now closer to London so I think it would be better to go there, if we can.

He's also got two peculiar lumps on the sides of his feet, the doc thought they were bunions but the x-rays didn't show anything unusual. It looks very strange and at the moment red and irritated. Hoping the reading specialist may be able to throw some light on what they actually are, as there is no obvious bone involvement. I think our Dr has lost the novelty of two unusual patients, I'm starting to worry when I go to see her, thinking that she thinks I'm an over protective mother. That might just be me feeling guilty about what Christian is going through; but I am considering changing doctors. Although there is the risk we could get someone worse.

CM has managed to get into school today, he has his first science exam, which counts towards 50% of his grade, the timing couldn't be worse, as he has missed so much of the revision classes; so all fingers and toes are doubled crossed (something I'm sure I could do if my toes were longer .

I hope everyone is well and that HMS is treating you and your loved ones kindly.
Suzanne

[christianne]

Hi Suzanne,

I hope Christian does well with his exam, good luck!

I thick a referral to GOSH would be well worth doing. (Just a quick thing- I would take the name of your doctor out of your post as it is against site rules and will be edited by the moderators)

And if cocodamol doesn't work, try something else. Some people find it makes them sleepy and it constipates so be on the look out for that. We tried many combinations of medication until we found the one that works best for Ewan which is a combination of diclofenac (voltarol) , paracetamol and buprenorphine patches.

The lumps on the side of his feet may be to do with his feet being flat and over pronated. many kids with HEDS/HMS have this and need special inserts. Ewan has his made by GISH podiatrist and they work so well that he never ever forgets to transfer them from one pair of shoes to another because they make such a difference. CM's soft tissue may have gone over and formed the lumps? (Not an expert obviously it may be a silly suggestion!)
Keep updating us

Christianne

[SuzanneHH]

Thanks Christianne, I have removed the docs name, I didn't realise it was against the rules... my bad

It wouldn't surprise me if he did need inserts in his shoes, I remember when I was a girl I had to wear inserts and flat shoes, I absolutely hated it, all I ever wanted was to wear the pretty heels every other girl got to wear. (By the time I was off the familial leash I was biting at the bit to wear a pair of heels. The novelty wore off after a month. I still buy heels every so often just to assuage the hunger, wear them once and then look at them fondly and loan them out to others who can wear them. That's not so easy these days as all the young people I know have bigger feet than me!)
Thankfully for CM that won't be a problem, he does have odd feet, long and wide and narrow, I know that makes no sense but shoes have never been the easiest thing for us to purchase. He has discovered the slip on so he doesn't have to tie shoe laces lol. He's not flat footed, he's inherited my high arch but by the sounds of it, that would probably cause a similar effect as your son's feet. You forget how much pressure our poor feet take! I think I should give my tootsies some more TLC!

I'm definitely going to ask to be referred to GOSH, I shall wait until we go to Reading, really don't want to bother the doc again. Foolish I know actually that is very foolish, CM's needs must come first, so I shall just take the bull by the horns and hang what the doctor thinks! You know it would be really handy if you could communicate with your Doc via a special email address for things like this, it would save a lot of time for everyone!

Thanks Christianne

Suzanne

[trekster]

cyberbarn does your son limit his foods to those with gluten and dairy in? If so hes probably addicted to them.
i was better able to recognise pain and some of my behavioural autism went when i avoided gluten and dairy.
ive been off gluten and dairy for about 7 years now.

Hope yourself and other parents on here find the support they need.

This site is ace.

[cyberbarn]

cyberbarn does your son limit his foods to those with gluten and dairy in? If so hes probably addicted to them.

No, not at all. Quite the opposite, as he rarely has dairy at all, and never had cows milk and was gluten and dairy free for his first few years. I have seen kids with the addiction to gluten and my son just doesn't have that problem at all. Because autism is a heterogeneous condition not all people have problems with dairy and gluten. In fact much of the research has found that early introduction of gluten and dairy is an indicator of later sensitivities to it.

But thanks for mentioning it as some ASD people do have this problem, and people here might not have thought of that as something that makes their symptoms worse.

Cheers,
Jennifer

[madmum]

On the subject of his feet my son has flat feet but has narrow ankles and wide feet at the front. He now has ankle boots and insoles from the podiatrist at our local hospital. I would ask for your son to see a podiatrist as they will be able to identify his problems and advise accordingly. My son is nearly 12 and growing. He gets very tired and in pain. I do get work from school for when he is off but still got a lecture from his english teacher as his grade has dropped. Trying to explain to this teacher his pain and fatigue was hard work. My son is bright and the teacher said he is the brightest,probably better than most of the kids two years older,and does not want him to fail. It is difficult when my son does not like the subject and struggles with writing(he has been given a keyboard but is reluctant to use it due to bullying). He only had 50% attendance in december. My mum questions how much he plays on it but most of the time I know he is genuine. He is definately worse when growing and he gives it away by eating me out of house and home just before.

[trekster]

Thats ok cyberbarn, he could have a low appetite caused by a zinc deficiency? Hope you find some answers soon.

madmum could your son do his homework using the keyboard but the writing in class? What about hand or other
types of splints? Would he use them to help with his writing?

Could a rhemy refer me to a podiatrist about my fallen arches? im using a wheelchair but still when attempting to
walk short distances (such as to the loo and back in my home), find im walking on the sides of my feet.

[SuzanneHH]

I took CM to the doctors again today, he has been in severe pain and the pain killers he were given weren't even touching it. He was also completely exhausted and I had a shock when I saw his naked chest, he looked like an anorexic. I couldn't wait to see the specialist next Thursday and I didn't hold out much hope of anything being done at the GP's but I had to do something.

Only this time, the doc saw how bad he was and she gave him stronger pain killers and sent us off for blood tests. She also arranged for us to see her again on Friday.

I must confess I felt relief, finally she was seeing CM as I saw him and I stopped for awhile feeling like a neurotic mother. His growth has been extremely rapid, 5cm in under 6 months. So his body has stretched out but he hasn't been able to copy the fat ratio. Thankfully he hadn't lost weight from when he was last weighed, he had put on half a kilo, although that might have been his shoes. So at the moment he is 6ft and 8 stone.
I'd started giving him Complan between meals, so going to keep that up. It's the only thing I can think of as he is eating normally and I don't want to encourage bad snacking, although it is so tempting to just stuff him with junk food. But, sensible me wins that argument.
What is gnawing at me now though is the possibility that it could be something more serious. Discovering a huge bruise all around his arm at the blood test hasn't helped my concerns.

I feel ashamed that I hadn't seen this bruise before, I guess I was so wrapped up in everything else that has been going on that I haven't been seeing him properly. But the bruise is awful it wraps around his arm like a tie dye sleeve (at first I thought it was just dirt). The nurse thought he had had a recent blood test but that isn't the case and CM says he hasn't bashed himself. So where did it come from?

So back to being neurotic and feeling very alone right now, my partner and I are having a bit of a bump in the road and it couldn't have come at a worse time. I know I am under more stress than I care to admit to, as now my joints are crying out in protest, it has been a long time since it has been this bad.

I am so glad to have you to speak to, it doesn't replace the comforting warmth of a caring embrace, but it does give me a little more strength as I have you who can understand what it is I am going through.

I just hope I am being over dramatic and it will all be just a hefty punishment for a vast growth spurt and everything will settle down.

Thank you for listening.

Suzanne

[cyberbarn]

Hi Suzanne,



You are a great mother, not a neurotic one!

I'd started giving him Complan between meals, so going to keep that up. It's the only thing I can think of as he is eating normally and I don't want to encourage bad snacking, although it is so tempting to just stuff him with junk food. But, sensible me wins that argument.

I was feeling like that, but then someone pointed out to me that we get brain washed that we shouldn't be eating certain things, but that only applies to the kids that are over weight or on the way to being there. I now offer homemade plain cake without guilt!
Not only that, when we were told that we had to increase his salt intake by the cardiologist, I realised the only way to do that was to add more salt to the home made bagels he eats, and to get him to eat crisps! The paediatrician thought that was funny, that I got to be a 'naughty parent' and encourage my son to eat what is now thought of as junk food!

And that is the thing. We have been encouraged to think of these things as being bad for us but they are only bad for us if we have too many calories.

What is gnawing at me now though is the possibility that it could be something more serious. Discovering a huge bruise all around his arm at the blood test hasn't helped my concerns.

Brusing is part of some EDS variations, so I am sure that it will be part of the picture, especially now that the GP understands things better. Don't worry about not noticing it before. They aren't babies any more and we have no reason to inspect their body like we did when they were little. In fact I was shocked when I found out that my son had pubic hair for a whole year before I noticed it!

I am sorry to hear that you and your partner are having a rocky patch, but that is not surprising with all this stress caused by your son's pain and condition. Hopefully now that the Dr is taking things more seriously you will get some more support and answers and won't feel so stressed and then be able to repair things.



Jennifer