My DD has been ill for so long

[dalek]

My dd (12) been ill since 28 January. She has had various bouts of fever and now has a sore throat. For all of this time she has had extreme fatigue, sleeping between 12 and fifteen hours a day and after nearly three weeks off school and spending all of half term in bed is only able to do half days at school. She has had to give up her after school activities. When she got back from her half day he went straight to bed. I woke her up at 6 for dinner and was back in bed by 8.30pm.

She has had a number of blood tests that have come back negative for thyroid, diabetes, glandular fever and a whole battery of other things. Her inflammatory markers are up. Doctor says she has definitely been ill even if she no longer has a temperature.

I am at a loss as to what to do next as she is not getting any better. I am going to ask the doctor for referral to a paediatrician but was wondering if anybody has any experience of this kind of illness in a per teen.

Tia

X

Sorry, I don't have any direct experience.

However, an independent nutritionist might be able to help her.

I'd get her an appointment with another GP at your local surgery. Just ask for an appointment and if they suggest a time with the doctor who saw her last, claim that the time isn't suitable and emphasis that you don't mind who sees her, if you'd rather not say that you'd like her to be seen by someone else.

Please get the full blood count done asap!

I'd second getting a ful blood count done. Hope she's on the mend very soon.

^full^

Also see if you can get another test for glandular fever. You do get false negatives. My sons friend had it for 3 months before he got a positive test result.

I'm sure she's had a full blood count if she's had those other tests but ask. She could have had a glandular fever like illness - eg cmv rather than ebv. . It does sound like nasty prolonged virus but def worth going back to check for other things. A paeds referral is reasonable if they can't get to the bottom of it.
Poor you and dd.

This sounds like how I got ME. I wish now that I had rested more at the beginning.

www.tymestrust.org/ ask TYMES trust if they know of a good paediatrician in your area.
investinme.org/
voicesfromtheshadowsfilm.co.uk/

There have been some extremely long lasting viruses around this winter. I have not felt brilliant since Christmas- wanting to sleep, on-and-off sire throats, fever, sickness etc.
Not belittling at all but many of my friends have had this extended virus- if blood is clear then I imagine it's the same evil virus. :-(

Sounds like what my ds had. It turned out to be a mitochondrial dna mutation. Please google functional mitochondrial disease. In my ds' case he is being successfully treated with very high doses of L-carnitine and CoQ10 which are both nutrients that work on the mitochondria. Here is a very good website with lots of information.

Have they checked her vitamin D levels? My teen son was diagnosed as vitamin D deficient ( a side affect of other medical issues) and it it resulted in him being extremely fatigued.

Yes, Vit D is also an important one to check, but it's expensive so rarely ordered.

Op - sorry your dd has been ill for so long. Last year my daughter has a really bad run of things from Jan - April - started with tonsiliitis, then a couple of viruses, then tonsillitis again. She had bloods done March time byu which time she had only done 1 full week at school, they all came back clear although was told the GF often gave a false negative. She didn't get any more viruses after this time but was constantly tired, sore throat, swollen glands, face & eyes kept puffing up when tired. She was referred to a Paed in June, I really wished I'd pushed for a referral earlier but the GP kept insisting she was just having a bad run of bugs & viruses. The Paed ordered more bloods which all came back clear, she picked up a bit but still having the same symptoms. He diagnosed a post viral illness which he expected would disappear over the next few months. Things failed to improve and we are now waiting for a refferal for a Chronic Fatigue Clinic. I dont wish to worry you more to give you the benefit of my experience. We didn't have much support from school & while there my dd was ok giving them the impression that it was more of a school aversion problem rather than illness. Also we saw 1 GP that told us to make sure our dd was as active as possible (obviously not believing the problem) I now know that this probably made things a lot worse. As our dd was missing out on a lot of school & the socialisation she took part in PE when she was feeling well enough, in hindsight I would have her miss all PE. Also what I wish I did earlier was to record daily symptoms & activity levels ina diary & also any phonecalls, meetings with school just to cover yourself if you do have any problems with school & her absence. I hope she picks up & its the remenants of a nasty virus that will soon be out of her system.

pinkparrot....sorry to sound like a broken record, but there are definite links with mitochondrial disease and Chronic Fatigue. Please take a look at the website I gave a link to above. Also, google Dr. Boles in Los Angeles and look at his research regarding mitochondrial disease. My ds went from a sickly child who had never ending illnesses, secondary infections with every cold which always lasted weeks longer than any one else's, chronic fatigue and various other symptoms, to a perfectly healthy child under Dr. Boles care. He put him on high doses of L-Carnitine and CoQ10 which are both nutrients which are needed by the mitochondria (the power house of your cells) to function. The supplements don't have any adverse side effects and can be taken in very large doses. Dr. Boles has written several scientific papers on the subject which you could go armed with to the Chronic Fatigue Clinic (or even the Paed).

Good luck...I completely understand how difficult it is to have a child who is ill all the time but not diagnosed.... (ds missed 8 weeks of 5th grade from illness and 5 weeks of 4th grade and never less than 3 weeks of any school year until this one)

Get them to do a throat swab , my son had a similar sounding thing when he was 10/11 and it was a bacterial and viral throat infection . It presented like GF and he was off school for weeks . I hope she gets well soon . I would be very wary of pushing her too hard to do the half days ,she may be better just resting for a bit and having some work sent home . If she does have CFS its not a good idea to do a 'boom and bust' approach , and the going to bed during the day is also not advised ,better to pace yourself a bit IYSWIM . ( my DD has CFS and has been out of full time education for 14 months)

My daughter was very similar all through the age of16. At 17 they eventually diagnosed 'low grade' lupus and within a month of steroid treatment was bouncing with energy again. They think she may have Hughes syndrome now as well and we are waiting the results of blood tests. Keep pushing you know her best.... Like others have said there are loads of virus illnesses out there at the moment so fingers crossed its that.

WhyMeWhyNot, please read the info about mitochondrial disease. There are links to lupus and mitochondrial issues.