Teenage son pain and exhaustion - please help

[madmum]

Hi Suzanne. So sorry you are still having problems with your son. My son is 12 and he gets bruises which he does not even know about,at one stage he had 19 on one leg and 17 on the other. My son is going into a stage of being tired,pain fluctuating from low to high in minutes. He is growing,he always eats for britain in the week leading up to a growth spurt. Thankfully he does eat. His taste buds are changing and foods he liked he now is not keen on. He injured his foot in october and things have been worse since then. At the moment he is hard to get up,if left he sleeps til lunch. He stresses at school as he finds concentration hard and is made worse by a boy who almost constantly misbehaves and has bullied him. This I am sure is not helping. I am lucky though I am not having it as bad as you. I do know t he feeling about doctors and the over anxious parent thing. You are being sensible over the complan,it contains b12 which will help appetite. Wish I was there to give you a hug. This stress is probably not helping your relationship,men hate it when women show what appears to be more love for their child. You obviously love your son dearly. Some of the tiredness may be related to his painkillers,it can be a visious circle of pain makes you tired so you cannot sleep so you take medication which makes you sleepy but still the pain does not go(painkillers do not stop all pain) so you get more tired. This affects appetite so you cannot be bothered to eat so calories are not in so you have no energy which makes you tired and so on. My sons rheumy told him he must eat to grow and repair,he was worried as other boys are stick thin and call him names. His rheumy is happy with him. Does your son find eating tiring or painful? Sadly I cannot use complan for my son as he is dairy intolerant. Hopefully the blood tests will be ok. My son had tests a few weeks ago to check calcium levels after another injury,still waiting for the results. Is your son picking up on your stress? He may like my son feel guilty at times that he is worrying you. That is what mums are for. Keep up the great job of being mum,I am sending gentle hugs to you all. Love to you.

[Fizz]

Hello Suzanne,
My middle son, also in Yr 10 at school, is just over 6 ft and around 8st 5lbs. He is hypermobile but doesn't have an HMS dx. Whilst I'm not happy that he's underweight, he seems reasonably well so I think it's one of those things that happens sometimes with growth spurts and may not necessarily indicate an underlying problem. I think bruising (and the dreaded stretch marks) happen a lot with hms although all adolescents going through growth spurts can have skin problems anyway - boys with sudden, large growth spurts seem to be particularly subject to stretch marks in the lower back which is where my middle son has them.

Glad that you have managed to get your GP to take your son's situation seriously and I hope things improve for you both.

[SuzanneHH]

Thanks to all of you, you're keeping me from going insane
Some of his blood results have come back today and they are satisfactory so that is good. Mind you I don't have a clue as to what blood tests they were. Shall find out tomorrow.

CM's slept most of the day, then did an hours revision and went back to bed. The new pain killers seem to be doing the trick as he was a lot brighter, although still wearing his sunglasses, as he says the light is too bright. I wonder if it is just because he thinks he looks cool in them, I wouldn't put that past him lol.

Shall keep you updated.

I really do appreciate all your messages, stops me building up stupid scenarios that always have the most dreadful outcomes. Imagination can be a dangerous thing!

[madmum]

The light is too bright I have heard from my son. It has been explained to me that the pain receptors are close to other senses so sight,sound,taste,touch and smell can all be heightened. My son smells everything before he will eat or drink and hates loud music and bright lights. He prefers candle light. I hate the flourescent bulbs and the awful blue lights in public toilets gives me migraine. Glad the pain relief is helping.

[SuzanneHH]

Thanks MadMum, where would I be without this forum? Probably going bonkers!

What is funny, I made CM take advantage of the free second pair of glasses as sunglasses and he said he would never wear them. Famous last words!

I was wondering do you get car sick if you read in the car? It's only happened in the past two years for me, but it's completely thrown me.

[madmum]

I have not been sick but feel dizzy. It is apparently to do with the eyes and ears giving different messages.There was something about it in a programme called Brainiac.

[SuzanneHH]

I felt an update was in order.

CM has now been diagnosed with Chronic Fatigue Syndrome by a paediatric specialist. Then we go and see the prof in London (for the first time) and he has poo poo'd that CM has CFS, also that he thinks he doesn't have HMS but does have EDS (This came left field and knocked the wind out of me. At least that may explain the extreme bruising on his arms). I don't know all the details just yet, but he has said that he will need a year of rehabilitation, his growth was so quick that his muscles never had a chance to match the growth and with his fatigue it's going to be an ongoing journey to get him back fighting fit.

The worse thing is CM is getting markedly depressed. He was awake for an hour today and he was nearly in tears. It's so frustrating for him, he wants to be at school with his friends and making sure he gets the predicted A*'s but right now he's lucky if he spends an hour out of bed. Some days are better than others, but the ratio is changing. I am trying everything to keep him positive. I'm an expert Polly Anna, but even I am finding it hard to make a positive out of all the negatives we are being assaulted with.

I am hoping it won't be long before he get the help he really needs. I'm not sure what form this help is going to take. Part of me hopes that he will spend some time in hospital where they can build up his weight and muscle gradually, but I don't know if that is possible. Or whether I would really want him in a hospital instead of at home. I want the best for him what ever that may be.

I am concerned that I may have to give up work to support his rehabilitation. I've only just back into the working world myself after years of being unable to work (due to my own battles with HMS); I know it's not as important as the quality of my son's life. That is just my little selfish gene not wanting to let go of the ability to contribute to society and earn a wage. Also the social aspect of having other people to talk to every day is uplifting. As I said selfish and I will give it up if I have to. Just hoping there would be a way to work around it.

Aww our shih tzu has just pounced on CM, who has managed to get out of bed (if only to fall asleep on the sofa, still it's a change of venue), yay. Dogs are amazing, they know when they are needed.

I must remain positive for both our sakes, thanks for all your kind words and your own experiences, it really does help to know that we are not alone.

[madmum]

Hi. So sorry things have been so tough. I do hope your son soon gets the help he needs. I am in a similar place to you right now. I am becoming more and more concerned about my son. He has yet another injury,this time to his left foot. More time off school. More pain and more mobility issues. No extra pain relief offered,in fact the doctor wants a blood test to check his kidney function being on long term medication. He has just been away with his band and not been able to join in properly so they are considering standing him down from marching. He will then be different to the others and it will knock his confidence. He is missing school due to his kneecap slipping,the rheumy has reluctantly agreed to looking at a support although she says he just needs to exercise(how do you when it keeps slipping). His confidence is dropping and he is showing signs of depression( yes I appreciate he is going into his teens). I have pain and joint issues and sleep poorly,the stress is affecting me and I am finding it hard to be upbeat with him. I feel we have hit a brick wall. I cannot have a normal day or night due to his health. He is growing which is obviously affecting him. At the moment the future is not looking great. Sending you empathetic hugs and wishing your son all the best. By the way I have a 3 legged lurcher who is being my rock.

[christianne]

Hi there,
Sorry to hear your sons are going through a tough time at the moment, mine is worse than normal at the moment too - related to growth spurts (out of 3 different lengths of school trousers in the last 3 months) and also he always gets worse towards the end of a school year as he gets more and more exhausted without a proper long rest.
Suzanne, did Prof G say what the next step would be? Mostly in GOSH this consists of a 2 or 3 week course of physio rehab.If you look at the special GOSH rehab thread there is a lot about it. They don't stay the night in the hospital - they stay across the road in the patient hostel with a parent, but attend sessions in the hospital each day. Then they are given a programme of specific exercises to do at home. You may be able to get those 2 weeks off work? I agree that it seems right that you should try to keep it going as it is important to you - although of course you would give up work for your son's sake, it is really important that we also try to take care of US - someone once pointed out to me that in an aeroplane we are told to put on our own oxygen mask before we help a child with theirs- similarly how can we help our poorly kids if we don't make sure we aren't too ground down by it all?(I know it's easier said than done and I am guilty of not taking enough care of myself but I do try to sometimes make time for social life or even a bit of pampering etc)It's particularly difficult when we are also battling our own pain and conditions.
Madmum, I really feel for you too, it is so horrible to see them in pain and then not to have the medical people realise what they are going through.Hugs to both of you,
Christianne

[Fizz]

This thread has brought to mind the different experiences people have in getting help for teenagers. This is probably a question for Christianne or anyone else further down the path than my family. When do GOSH stop dealing with children? Do they carry on for a few years if a child was originally referred to them when still under 12 years old and do newly referred 13/14 yrs+ go to UCL? Reason I'm asking is that a friend with an older child (now Yr 11 at school)with EDS diagnosis at age 14, said they were referred to UCL and not GOSH as they have an adolescents clinic. A friend of my oldest son, aged 17 at the time (now 18) was also sent there when she was diagnosed with HMS. Yet I seem to remember Stargazer posting about the difficulties she had getting UCL to accept her son's referral when he was a similar age and I think she said that he was considered too old for GOSH.

My son did the 2 week rehabilitation at GOSH 2 years ago but is still having quite a few problems. He is now almost 13 and a re-referral back to GOSH has been suggested. Does he have to go back to GOSH or would UCL's adolescent clinic see him? I'm very confused.

Suzanne, I've managed to hang onto my part-time job so far but I know what you mean about the pressures to put your own life on hold in order to support your son. It's very difficult to know what to do for the best isn't it? Very best wishes to both of you.

[Rosie]

Hi all

My daughter was seen at the UCL adolescent clinic. We asked at the time what age they dealt with and they said 14 to 21. I don't know if this has changed since, but it does explain why soem teenagers are referred to UCL rather than GOSH. By the way, we found them excellent, and they referred my daughter on to Stanmore for her scoliosis, to an orthopod who understands EDS!

Rosie

[christianne]

Hi Fizz,
I think GOSH stops dealing with them at 16, I am not sure about the adolescent clinic, maybe as Rosie says they start accepting referrals from 14. I would think that your son is young enough to be referred back to GOSH Fizz, especially as he has already been treated there. It is common for them to discharge kids after rehab and have to see them again later when they reach puberty, as the growth spurts and hormones surges that happen then create havoc with their muscle strength. My son did the 2 week rehab twice a few years apart, at roughly 7 and 11 I think. I wonder what happens with GOSH kids like my son when they reach 16, they may then go to the adolescent clinic? I am pretty sure they will be considered too old for child services and too young for adult ones - that peculiar medical no-mans-land that seems to exist!
Christianne

[SuzanneHH]

CM was sent to the UCL not GOSH, he is 14 as well. I shall write some more later but I am at work now. Just wondering if there are any Berkshire HMS'ers with teenagers going through the processes mentioned?

Suzanne

[SuzanneHH]

I have just had the rug pulled from under our feet. I wanted CM to see the Dr, he is markedly depressed and I hoped that seeing the doc would maybe gave him a glimmer of hope. Well that has seriously backfired.

The doctor hasn't yet heard from the consultant at the UCL (I wasn't surprised at that, I wasn't expecting them to.) But I gave her a basic run down of what was said and what was a possible course of action.

When we talked about rehabilitation, she drew a breath through her teeth and said that the chance of CM getting residential rehabilitation would be nigh on impossible, one because it is horrendously expensive, but also that it would be a request from a specialist outside of our primary care trust. So it would be a political mine field. This was gutting, especially after reading about the GOSH rehabilitation. There's no way we can afford it privately, so at the moment it is looking really grim.

This is so unfair for CM, he never asked to have this condition.

I don't know what we can do.

[christianne]

Hi Suzanne
How were things left with the prof? You say he suggested rehab, did he give any idea of what would happen next, is he referring CM on to anywhere? If he is suggesting rehab then you could explain the situation with the PCT and ask him to write a strongly worded letter to the GP and copy it to the PCT, saying it is essential he gets the rehab otherwise he will not be able to function and will be a drain on resources long term etc etc. I know someone (not me) who did this,at first the PCT refused out of area funding, so she paid privately for a consultation and the doc she saw at GOSH wrote a strong letter stating the child would most likely be in a wheelchair by 14 if she wasn't allowed the rehab, and the PCT panicked at potential legal implications and agreed the funding. Might be worth a try.
Christianne