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Children's health

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Original poster

Teen with ME/CFS

16 replies

Lallylallz · 09/05/2014 17:14

I just wondered are there other parents out there who's children have ME/CFS. My DD is 14 and was diagnosed a 9 months ago. Although she's never recovered back to 100% she's now on her third relapse. It's hard to see her go through it spec as suffers with constant pins and needles and pain. Today she's struggling to walk as her legs keep giving way. She's had me up so many times in the night I feel like a mother of a newborn baby. Her dad who I'm separated from has very little to do with the kids maybe an hr a week and fails to realise at times how poorly she can be. Telling me it's just tiredness and needs to sleep. I'm running on empty now and have had to go on unpaid leave to look after her. As well as look after 2 other younger siblings.. I'm feeling isolated and unsupported. As much I'm hoping there isn't anyone who isn't anyone that is going through this. If there is can anyone offer advice or something.

OP posts:

Are your children’s vaccines up to date?

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cestlavielife · 09/05/2014 21:34

Are you in touch with www.ayme.org.uk/
?

cestlavielife · 09/05/2014 21:35

Are you claiming dla for her etc ? and careers allowance for you ?

Original poster

Lallylallz · 09/05/2014 22:53

I've signed my daughter up ayme.. But as for dla and careers allowance no I'm so lost as to everything I've been in full time work at the momim living of saving ps hoping soon she will be well enough for me to go back to work. I'm so unsure how to go about anything lost is an understatement to how I feel. Sleep seems to be a myth at the minute as she's awake all night crying in pain and doctors domt seem to want to do anything for her.

OP posts:

cestlavielife · 09/05/2014 23:38

What about school ? Is she under the lea officer for medical needs? Is she getting education ? There is statutory guidance if you in England or Wales.

My dd was out of school for two years 2012 thru to only this year she is 14 (now in school from second lesson five days per week but had months in tutor group few hours per week then hosp school as day pupil... ) nausea dizziness etc etc turned out to get diagnosis chronic migraine disorder but yes was v difficult. I was able to work from home for some of the time.

Ayme can advise on claiming.

Original poster

Lallylallz · 09/05/2014 23:51

The school are good and she's on a reduced time table. She just went back to 2 full days but has managed 1 day this week and seems to be in the start of a relapse. She does a lot of study online and I can't fault the schools help in any way. It's just me I seem to be lost. Each relapse seems to be worse than the last. I feel that I'm one of those parents that exaggerates my child's symptoms for attention when I can clearly see she's suffering. I feel I'm neglecting my other 2 when I'm so dedicated to her all the time. Sleep deprivation def has me this week. Plus the worry of money. But hopefully my application will be approved soon and I can work out what Help if any I can receive as I do t think the mortgage company accept IOUs as payment lol

OP posts:

Floralnomad · 09/05/2014 23:58

My dd is 14 and has had CFS for about 3 years , she hasn't been in FT education since Sept 2011 ,we had a tutor for 18 months and then in Jan this year decided to HE as even the tutor was too much for her to cope with . I just want to say that you are not alone and there are lots of us about who know how you feel . Has your dd been seen by a specialist in CFS ?

Original poster

Lallylallz · 10/05/2014 08:46

She's meant of been referred to a unit in bath but seems now consultant wasn't happy with registrars assessment said her needs weren't met. so wants to see her himself. Plus to try and work out some pain relief for her pins and needles. She's no behind in studies as I do a a lot of home school with her as I homeschooled my stepDD. Its comforting to know I'm not the only that feels like this.

OP posts:

EffectiveCommunication · 10/05/2014 08:51

I have had these sort of problems with two teens. Different diagnosis though, due to a connective tissue disorder and autonomic system dysfunction.

I have heard good things about rehab in Bath.

Have you tried a tens for pain relief? pain relief and anesthetic doesn't work as it should with us.

Original poster

Lallylallz · 11/05/2014 10:17

I've never thought about tens I will give it a try she's been awake ALL night in terrible pain. I finally managed to get her to sleep at 6 this morn. I've now got the issue of the lil 2 suffering as they have to be extra quiet and noisy toys are banned. But I will be on phone to GP in morn I can't have this keep going on with the pain while wait for consultant appt

OP posts:

EffectiveCommunication · 11/05/2014 10:21

A physio recommended it. I have to say though the children don't use it very often as it works so well when they take it off they are in a worse state. At least in constant pain you get used to it.

Original poster

Lallylallz · 11/05/2014 10:46

I'm willing to try anything just to help her sleep pain free. Sleep deprivation is getting to me so it must be getting to her worse. But I won't be leaving gps tomorrow until they've dome something more to help her all this give her pain killers isn't enough.

OP posts:

EffectiveCommunication · 11/05/2014 14:43

Has anyone suggested a sleep study for your child who is struggling with sleep?

cestlavielife · 11/05/2014 17:15

You do need to make it very clear. Point out to go that you are getting ill over this and the other dc suffering too. Asking for a sleep study is good idea.
If she already under a consultant ask for that appt to come forward. I managed to get paed to see dd at the end of one of her clinics when next appt wasn't for several months, by pushing insisting that "this cannot continue like this " ...that appt moved forward a lot of other things.

Original poster

Lallylallz · 11/05/2014 22:29

She's normally a good sleeper even 14 it's been lights of technology away at 10, she's being awoken by pain and the pins and needles last night was poss the worst night. With no sleep. But tonight's she's gone no problem I've kept her awake as best I could today in the hope tiredness outweighs the pain. My plan is come 9am ring consultant and demand she cannot wait another 4 weeks for her to be seen. I'm not that good with demanding things and usually back down but I know I can't with my child.

OP posts:

roundabout1 · 13/05/2014 14:26

Hi sorry to hear of your troubles. I have an 8yr old dd with CFS/ME been ill for over two years and we see Bath although are seen by a satellite clinic in Cheshire. Sorry your dd is in such pain, amitryptilene is often prescribed for pain, also helps with sleep problems. My dd has been offered it but think it would cause more problems getting her to take it so it is there if we want it or think it is required. Ayme is great and also the adult forum although you have to pay to regsiter. We have just applied for DLA, dd was originally not too bad physically but is requiring a wheelchair more now.

gingerbiscuitandacuppatea · 14/05/2014 22:17

Hi I'm sorry to hear how hard things are for you and your daughter. I am an adult with ME and had it as a teen, hopefully I can help a bit.

Have you tried writing an activity diary to see if you can link certain activities with more pain at night? I tend to find that on days when i have done too much I am in more pain that night and the following days, even if I seemed ok at the time. It may be that you will find particular activities are triggers for it too.

Have you tried warm baths or heated pads for the pain, it can be very soothing. Epsom salts added to the bath are supposed to help too, or magnesium supplements.

It sounds like the full days of school are too much for her at the moment. Is she able to attend just one or two lessons in the day rather than a full day? I would often just go in for lessons after lunch a couple of times a week, otherwise it was just too much. It is much easier to do the same amount of lessons spread out through the week than to do them all in one day.

I'm not sure how much a sleep study would help, its the pain management that seems to be a problem. I would go back the gp and ask for pain meds for using at night, it can be reviewed by the consultant when you see them.

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