Does anyone have a child with this illness?

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Does anyone have a child with this illness?

Postby Flippy22 » Fri Mar 27, 2015 1:37 pm

I have long suspected that my daughter has fibro. She's 13 years old and loves school but some days cannot get out of bed to go to school. She often says she's in pain and spends her weekends in bed. The doctor has agreed to refer her to a paediatrician and says they will refer her to rhumatology if they agree. What if they don't? How did your child get a diagnosis? Please help.
Flippy22
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Re: Does anyone have a child with this illness?

Postby *Lisa* » Fri Mar 27, 2015 4:42 pm

Hi Flippy,

My daughter at 14 was getting very fatigued and couldnt wake up in time to get to school. She managed to get in break times or lunch times but the school punished her as she was on there naughty list when at school :nono: so thought she was just adding to the reputation she got amoungst teachers.

Then she coomplained about her knees and her breathing/chest pain and tightness. Took her to GP he diagnosed asthma and "growing pains" she was put on inhalor (although in the end it wasnt asthma)

By time her exams were due she struggled to concentrate and fell behind her targets. So they made her work extra session as lunch times to catch up but this just agrivated the fatigue.

She had her bloods done and they found her to be slighty anemic so i informed the school that this could be why shes been having the problems and not to punish her and to help instead.

Was'nt until she left school that when she tried to go to college things got worse. The pain spread to her back and i often heard a "crunch/pop" when she moved.

The final straw came when we had a routine visit to the dentist. I have severe TMJ associated with the FM and hes been treating me for years. He noticed that my daughters jaw was "like mine" then all of a sudden there and then alarma bells rang out.

I made a GP appointment with a back up letter from the dentist with his findings (which ended up being really valuable!)

GP tried to dismiss symptoms as depression! :-? i argued back and she was reluctant to forward her to a rhuematologist. She was also uneducated on fibro insisting my daughter when for a blood test to diagnose it! (no bloods indicate fibro) needless to say we got into a very heated debate! and i had to leave.

She told me she would have a meeting with the other GP's to see what they thought (she had no clue!)

A week later a letter appeared to say that my daughter was going to be refered to a consultant and it was there she was diagnosed with FM & CFS plus the TMJ from the dentist. She was 16 by this time (now 19)

You have to be firm and do not leave with out answers or happy with the outcome as they do like to fob you off.

I would have thought bloods would be tested first then the doctor will work out where to go next as well as maybe an examination.

Go with a symptom list and a note about a day in the life of your daughter, like not being able to get up etc. My daughter was the same she spent all her weekends at home and had to have her friends round to her all of the time.

If the doctor does not see anything wrong (fibro does not show itself in tests) then ask for the referal if you dont get anywhere go back to your GP as they can refer you themselves to the rhuemi.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Does anyone have a child with this illness?

Postby Flippy22 » Fri Mar 27, 2015 6:20 pm

Thank you for the reply Lisa. The school are prosecuting us because of her poor attendance. Its really not fair. The symptom list and day in the life idea is fab, thank you. The worst thing is seeing her suffer.

She loves school and sport but she has had to stop playing netball for the school because it was making matters worse. Thank you
Flippy22
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Posts: 35
Joined: Sun Jul 27, 2014 2:05 pm

Re: Does anyone have a child with this illness?

Postby *Lisa* » Fri Mar 27, 2015 10:53 pm

Ask your GP for a letter explaining your childs health and give it to the attendance officers, this should prevent any prosecution and in turn change the situation to get an organisation called ESTMA (not sure if its called that where you are) in to talk about home tutoring or doing half days at school and maybe some homework emailed to you when she cannot get in.

My other daughter has severe anxiety and with her doctors reports and CAMHS (child mental health services) reports given in to the school she now has one to one tuition a few days a week and the rest is emailed to her to do at home.

Theres lots of help out there just the school need to see its an illness preventing her from attending and not for any other reason. Ask to speak to the attendance officer.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
*Lisa*
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