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AVM Survivors Network

Struggling

#1

I have been struggling last few days. My 14 year old daughter was diagnosed with an avm on her splenium just before Christmas. We are also waiting for tests to come back to see whether both of us have ehlers-danlos. My daughter started having problems with school attendance 10 months ago. She was diagnosed with scoliosis 6 months before this. The GP thought that she may have chronic fatigue syndrome but last oct she was diagnosed with chronic pain syndrome. School has been asking for evidence from hospital follow up letters etc for ofsted. Thats fine and I have given them everything that they have asked for, permission to talk to the GP and referrals to social services. It has been me that has been pushing for tests etc and it was also me that has contacted the childrens disability team and education welfare. I am in the process of appealing for Disability Living Allowance for my daughter and gave permission for the court to contact the GP. Few days ago I got my daughters GP notes and hospital letters through from the court. There is a note from the dr that ‘professionals’ have concerns that I am ‘fabricating’ my daughters health. I am devastated. I think it was the school and will be talking to them tomorrow. I have given them no reason to suspect that I have lied. They do safeguarding checks every week. At hospital appointments my daughter tells them about her pain but because she has always been shy she does like me to talk to the dr. I know I have done nothing wrong but it is really getting to me. I also know that the school do hear stories from kids that they are ill when they’re not but my daughter has not been accused of lying, just me

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#2

Kirsty

That school are talking about providing information to Ofsted feels to me like they are under incredible pressure, so I guess they are pressing into areas because they are under extreme pressure themselves. It may not be fair for them to press you so much, I don’t know, but it sounds like they are in their own difficult situation. Has your daughter’s attendance at school been really low? If they’ve got a generally poor attendance at school, Ofsted may have brought them under pressure to sort it out and if your daughter is one of the least able to attend, the pressure comes to you.

However, you need to be confident in the reasons and needs that your daughter is achieving what she is. If your GP is feeling the pressure from school, it may just mean that pressure is there, not that the GP or you or anyone else is leading them a dance. I would just talk to the GP about your concerns and that they are comfortable with the diagnoses and investigations and needs that have been determined so far. You need to be on-side with the GP.

I am hoping that it is pressure on the school and you’ll be able to ride it out.

I was busy reading the school performance tables either last night or the night before for our local area and attendance is a big indicator for achievement of both pupils and (in aggregate) a school, so if they’re not doing well and their general attendance is poor, they will be under immense pressure.

I think keep calm and stay in touch with the GP especially.

Good luck and keep telling us how you get on.

Richard

#3

Thanks Richard. Apart from winter the year her scoliosis was diagosed I think, her attendance was pretty good. I did wonder why the social worker never replied, it was because she was only seeing if I was lying. The gp did send a cooy of the cfs clinic follow up letter fo the social worker and the gp stated that she doesn’t think that I was fabricating it and what she thinks is thag I am trying my best for my daughter but that I am anxious.

#4

@Kirsty79 sadly this is pretty common with drs that are not knowledgeable with EDs. And if you go on the FB Eds site you will see other parents talk about this. Esp when you are advocating for your child as any parent would and you are showing emotion cause you are burnt out.
people are blamed for their kids bruises etc …please go onto the EDs FB site and others will share their experiences with you and what to do.
I find it helpful when meeting a new doctor to bring my husband and we discuss ahead of time what he will bring up and talk to with the drs.
For me its not so difficult cause I have the same drs as my sister and mom and we all have EDS and we all have the same weird things so hard to brush us off.

Stay strong and calm…
Hugs
Angela