mums of teens with chronic illness support thread

[morningsun]

Hi,Im morningsun,new to mums net and mum to a 15 yr old dd diagnosed with severe crohnsdisease/ulc colitis a few months ago.
As it has had a lot of effect on her well being[emotional and physical],schooling and us as a family as well as the tests,clinic appts and health issues I'd like to start a thread for anyone in a similar situation,to exchange tips and chat about difficulties etc
So welcome!

hiya ...sam has had symptoms now for 5 or more yers but last year he was very bad and was referred back to the hospital and theres a new paed who is very 'on top' the old one was rather lost in his own ego ..... his bloods show that he has had glandular fever and hes one of the few that hasnt recovered and so they are continuing to investigate to rule out everything before they say M.E - the paed herself says its pretty much clear cut but she doesnt want to do a dis service to sam and miss out something that could effectively give him full health -(false hope and all that).

Sam has good days and abd in as much that some days hes so good hes a pest and other days where he cries in pain in bed and sleeps for 18 hours and some where he just collapses and sleeps and wakes needing yet more sleep......you know the story you live it too .

He managed a full week at school last week which is a rareity.

bloody ray of sunshine arent i ?.

Poor you. Sounds like you've had a v. rough time. Lots of advice on the CFS thread ( under children's health I think). My DD has never had a diagnosed virus so in a way at least you know he had GF. She has had every Blood test under sun but nothing shows up . As you know there is no test for CFS/ME but my DD symptoms are: fatigue(duh),headache,nausea, dizziness,bone pain - new since Nov, body temp all over place, insomnia,paling. Other thing I have to watch for is low mood. If you can, get this paed to refer you to Dr Esther Crawley at RNHRD in Bath. She is the expert for teens with this and I promise you she can get your son significantly better with a pacing programme as well as give you a proper diag. Only prob is she doesn't do private prac so sees chn for a donation to her research foundation. It sounds like you've been dealing with this for far too long on your own. Usually a diagnosis is made within 18 mths so you need to jump up and down!!
Sorry but I get so cross about this - my own GPs response was to say CFS/ME doesn't exist in chn - rubbish. He's crawling round me now!. Keep posting.

We saw a professor who had written books on 'abdominal migraine' and it would appear he did an awful lot of diagnosing of this using his own book for guidance.

Our own doctor isnt really supportive of M.E or wasnt he is more cure it with a pill or its all psychosymatic how can a child collapsing at a birthday party be 'in his head?'-we decided then to home school Sam for 2 and a bit years as school werent v supportive that went well but M.E doesnt go.

Finally to cut a long story short we demanded answers and we are getting them Sam suffers with temperture drops he feels the cold very easily and will often wear a sweater under his jumper at school and wakes up freezing in v warm house.

He goes v pale his colour literally drains and he gets headachey and legachey .....imsomia is yet nother thing we struggle with hes either sleeping for england but waking up knckered or he cant sleep and is upset.

Hes very moody and runs on a short fuse yet can be v emotional and when hes ill i often have to lie in bed with him not daring to move cos it hurts him but just being there ....hes 13 he should be out playing football and being with his mates not stuck inside on the settee watching films with his mum.

The doctor has actually now said if he was to ever be convinced of M.E sam would be the reason.

Ive heard of the institute in Bath but its a heck of a long way for us and would require a lot of planning still at least we are moving in the right direction now.

Sounds like CFS/ME to me ...but I'm not a doc so I shouldn't really say should I? My DD was put on a pacing prog ( look at 'ayme' website for more info)and basically you could try your own version of it for now. Idea is to smooth out all activity. Schoolwork, arguments, physical stuff, computers, TV, reading is all red and drains body of energy. Try to work out how much he can do of this on a bad day and do same on a good day.ie 3hours school each day and no more even if he feels well. That way bad days should be less bad. Also cut out sleeping in day. Like a baby they need to get up at same time each day and go to bed same time each day - boring - but limiting sleep leads to better sleep. My DD has acupuncture for pain and HG counselling to try to deal with emotional fallout.
Is this of any use? I'm sure you know loads about this already. Sorry if I seem to be bossy or anything. Just really want to help you as you sound like you've been through the mill

Hi, Morningsun. My best friend's daughter has UC. She developed it at 11yo and had her bowel removed then a pouch operation to reconstruct her innards when she was 12yo. It was a very long road to recovery but she got there eventually. She's now 28yo and has travelled the world, has a fab job in London, a boyfriend and is very independent. Sometimes when she was a teen, the future looked very gloomy and she struggled socially, particularly while she had a stoma between ops. The children at school were none-too-pleasant, esp while she had an ileostomy. Coordination with school is very important. Have you been in touch with the Crohns/UC charity? My friend found them very useful.

My ds had chronic brittle asthma from the age of four until he was 17, and additionally, migraines from about 11yo. It was a very difficult time and we had tremendous battles with school to get him an education despite him being absent so often. He has come through the other side and is now a research fellow at a university so has done very well despite a poor start.

One thing both my friend and I found and which I see mentioned here is the child's irritation with their health being mentioned so often. It's a hard one to handle; you want to show your concern but they want to shrug off your presence and reclaim the independence they feel they should have.

Good luck and best to you and your dd.

Sounds like CFS/ME to me ...but I'm not a doc so I shouldn't really say should I? My DD was put on a pacing prog ( look at 'ayme' website for more info)and basically you could try your own version of it for now. .
Is this of any use? I'm sure you know loads about this already. Sorry if I seem to be bossy or anything. Just really want to help you as you sound like you've been through the mill

oh no tell me everything any advice absolutely gratefully received.

Ok nickschick. Off to work today but will think about how not to bombard you and will post later - hope you and your DS have a good day

ty ,have a good day

nickschick, is there any local clinic that would help? Dd spent 5 weeks at the children's rehabilitation clinic at our local hospital last year and I know they also had children/teenagers suffering from ME. They too work with a pacing programme, backed up with CBT and OT where needed.

Dd's situation was different, but I can see how a lot of things about them would work equally well with ME: particularly the way they listened to her and gave her a lot of the responsibility for her own treatment. I felt she grew up a lot in those 5 weeks and became a lot less irritable with me in consequence. And unlike many consultants I've met, they didn't seem to have that contemptuous "all in the head attitude". In fact, I don't think they even had it with the kids who did have psychosomatic problems.

Had to smile when you mentioned about lying down with your teenager, thought I was the only mum who did this...Still, that's saved the NHS a fortune in painkillers over the years.

Hi nickschick been thinking about you a lot today. I'll try not to write a massive thread but no promises! Sorry to everyone else on the thread if it seems I'm hijacking
Here are my thoughts assuming your DS has CFS/ME
See if you can see Doc Crawley. I don't know where you live but we stayed overnight in Bath and she will see v. bad children in their own home so don't rule out. Only reason I'm saying this again is that she is the expert on teens with this and has big research foundation so it's straight from the horses mouth.
If not find local CFS/ME service for children. Then you might be able to access services that cory mentioned.
Lots has helped my DD but it is an illness that relapses so you have to be aware of warning signs and if I could do half of what I'm suggesting my DD would be doing better that she is!
Work out DS baseline (what he can do on bad as well as good days)and what he wants to achieve most. For my DD it was going back to school for your DS it may be playing football. The idea is that he does same on good as well as bad days and has to get used to feeling v. bored! This is supposed to smooth out his life in a way that he has more even days and also keeps symptoms under control. Then, if achieved after 2 weeks, increase by 10 per cent and keep going. We have had a major setback and my DD is refusing to do this as strictly as she should and in my opinion is slowing her recovery but that is the prob with teenagers isn't it?
The other thing is to treat symptoms: herbalist, acupucture, physio, oesteopathy, CBT etc etc .Try one at a time to see what works... Hope this helps and please go back to Chronic fatigue thread too as there are some other lovely ladies on there with loads of advice.
Hi to everyone else on the thread Thanks for your patience and hope all DC are well today.

thanks optimisticmumma,what we are finding the biggest thing is as soon as ds feels 'ok' he wastes it all up...and hes fighting it all the time and its v negative.

hes off school today shattered and pale.

he really loves school as much for the social aspect as educational and really sees being home 'ill' as a punishment.

" By nickschick on Tue 27-Jan-09 23:17:52
"thanks optimisticmumma,what we are finding the biggest thing is as soon as ds feels 'ok' he wastes it all up...and hes fighting it all the time and its v negative."

That is precisely what we were finding with dd: we spent 4 years on a permanent roller-coaster.

This is where the clinic really were able to help, putting a lot of the planning responsibility into her hands.

She has now spent a year just achieving school (not exactly fulltime, but perhaps 80%). Boring, as we've had to put the rest of our lives on hold so as not to tire her out, but it's worked. We are now cautiously engaging on the next step, for her to start a little dancing. I suspect she did go over the top with that on her first lesson, but think she is realising now that that's what happens if you don't stick to the plan.

Hi nickschick. We have also found that aspect so diff and our DD won't go back to her strct pacing as she hated it so much but we are winning her round by proving to her that if she goes to school too much she is much, much worse for 2 days after. She can see that the hols are more even.
She did 4 lessons on mon starting at lesson 2 and has been ill yesterday and today. She has acupucture and that does seem to lift her symptoms. We are coming round to the fact that if she did a lesson a day every day she could then build up. You have to eliminate 'boom and bust' (shame Gordon Brown didn't!!)and live a very even life. What about some counselling. Work on it with him. I merely said to my DD that there was emotional fallout from having a chronic physical illness and that I had a friend who would help her with her frustrations etc. She was very and thenLook up 'human givens' we really like it

Suedonim,thanks for your positive message.
It is good to remember the future will be different from now.
We are in a slightly difficult place atm in terms of she fought the illness with lots of character and strength and tried to carry on her life as before,but for reasons beyond her control too many things have changed and been lost,and she's got to come to terms with that part now.
Hi om,my dd is really sad atm to the point she is not even enjoying school which is the first time in her life.She's always been very confident and popular and is a very loyal friend and the thing thats been the most shattering has been being let down by her friend.
I wonder if any of you have got any fun activities you do with your dcs as a treat or to enjoy time together~any ideas welcome!
One thing i picked up on from your cfs chatsis pacing your dcs activity levels and my dd [who is quite strong minded] went back to school p/t very early~too early i think becos she was desperate to get back.
Her work is sliding cos her concentration has gone and the teachers are starting to notice her attitude has changed,but she doesn't want me to go in.
Anyway if anyone has any words of wisdom for me i'll be interested to read them!
Hope all your dcs feeling well last few daysxx

HI \O thanks opmumma for sharing your info,unfortunately sam has been off school for 2 days hes gone back in today so hoping hes ok.

Im saving up all your suggestions for when we see the consultant in march.

morningsun your dd sounds v similar to my son hes so keen to stay as one of the lads that his energy is going into keeping up front rather than pacing himself.

Hes now insisting he can do p.e despite me arranging with the pe teacher that unless he feels well he wont do it.

Nickchick - useless fact but your DS might like to know that 25 per cent of olympic athletes suffer from CFS according to consultant. They have to pace too

Morningsun - does your DD have a student manager? If I were you I would phone him/her and explain the fallout from her illness and then get them to email all her teachers so they understand the situation. DD doesn't need to know but at least her teachers will show more understanding.
Horrible about the friend but obviously not a friend worth having. Aren't girls nasty sometimes. How is she doing presumably she's in Y11 as is my son. They don't seem to do a lot of work do they?? Do you think that DD having actually fought really hard is now at a place where she is having to come to terms with the fact that she has to live with this now?

Fun activities : how about a nice relaxing facial - v. grown up and I gave one to a goddaughter for her 16th and she loved it!
Bowling? A show if you live near London or if not even more an excuse to stay overnight.Hairspray supposed to be fab.
Lots of hot choc in a coffee shop!
Shopping!!!
Some sort of class together. Don't know if she could do something like yoga but if she could it would be lovely for her.

Nickchick - useless fact but your DS might like to know that 25 per cent of olympic athletes suffer from CFS according to consultant. They have to pace too

optimisticmumma
You really are a very interesting persoon I know that will fascinate my ds.

I also have a son in year 11

Nickchick - useless fact but your DS might like to know that 25 per cent of olympic athletes suffer from CFS according to consultant. They have to pace too

optimisticmumma
You really are a very interesting persoon I know that will fascinate my ds.

I also have a son in year 11

Have a good day . Hope DS doesn't overdo it! Am sure he will! Oh well...

GCSEs? - do they do any work? at all? ever?

It would appear my year 11 son has either done nothing and is now hastily trying to catch up or the loads just hit him hes spending 3-4 hours a night studying plus extra lunch tuition.

Wow! Better now than in May then! Did he do mocks? My DS just done them but no results yet...

yes we had his results (we know someone at school) so dh saw the results early - they were nowhere near as good as what wed hoped but that seems to have given him a huge butt kick and hes getting himself sorted.

Great! One less to worry about then. Have you a younger DS as well. My younger DS in Y7 and he's OK but you can imagine my reaction when he says he's tired!! Nooooooooo