Complex child and hospital admission

[Kezzabella1984]

I would seriously appreciate advice

My nearly 13 year old and me have been made to feel her only option is an inpatient stay at a hospital

Nothing has been offered in our local community even though there has been a lot of recommendations and suggestions nothing has happened

Now the place they want her in is 3 hours away from home I can't stay but visit once a week

She has FND autism trauma/ptsd and abandonment issues learning disabilities

She does not stay away from home (not since she was 8 and trumatic event happened)

She has bulit a great relationship with teachers at her School (special unit) and is doing well at school

I don't want to take her away from all this.and possibly make her worse.

I don't know what to do especially as they haven't done anything before thinking hospital admission

[Masterlinx]

Is she doing therapy out patient and how long has she had FND? 13 is such an age where hormones can start to affect everything. Is she on any medication for FND? The hospital doesn’t do anything regarding the FND but her neurologist should be.

[Kezzabella1984 in reply to Masterlinx]

No she's been offered nothing out patient. She was officially diagnosed when she was 11 issues started when she was 9 (after a few trumatic things happened)No medications been tried (she's diagnosed ASD as well and in the report it's recommended medication and CBT but nothing came of it and they wanted straight to inpaient treatment) her neurologist discharged us after diagnosis and hasn't had her back.

They just want her to go to inpaient treatment at GOSH.

[210272]

I really feel for you and your daughter. I wonder if her school would be willing to advocate on your behalf so that your daughter can receive appropriate treatment closer to home? Is your primary care doctor involved? S/he may also be able to advocate for you. In some instances it can help to involve your Member of Parliament too.

[Kezzabella1984 in reply to 210272]

Thank you I'm quite lucky as school is putting something together to show the support she is getting from there.

Primary doc literally keeps saying inpaient will help.

We went a few weeks ago as her legs keep swelling and going purple all he said was see what the inpaient hospital say?!?

Thank you for your reply

[210272 in reply to Kezzabella1984]

Great news re the school and I can totally understand that you want to keep your daughter in an environment where she is valued and supported. I would involve your MP and can also recommend the Special Needs Jungle as a source of excellent information and support for people with complex needs. Tania (who is the driving force behind SNJ) is a friend of mine from the rare conditions world and my admiration for her knows no bounds.I find it unacceptable that some neurologists are diagnosing people with FND and then promptly discharging them. If you have the capacity I think it would be worth informing Prof Jon Stone about this since I know he is aware of this issue and the problems it can cause for patients and their families. All the indicators are that a multi-disciplinary approach is necessary for people with a FND diagnosis (and even more so where there are other needs, as there are for your daughter) and a good neurologist in that team can make all the difference. Leaving people without this support is almost bound to make things worse.

[Kezzabella1984 in reply to 210272]

Thank you so much

[Batty1]

Im sorry your having such a difficult time but if it were my child I wouldn’t want to put her in a hospital that won’t allow me to stay or visit but once a week … seems cruel to me and totally unacceptable. Can you pay for your own out patient therapy?

[Kezzabella1984 in reply to Batty1]

Thanks for your reply.I've started looking into this as I don't want her to go she doesn't want to go it's the pediatrician and camhs putting pressur on us x

[Batty1 in reply to Kezzabella1984]

I wish you luck in finding and acceptable solution that doesn’t cause your daughter more stress.

[Hidden]

Hi, I am sorry you are feeling that you are being forced into something. That should not be the case. My daughter has a hidden disability and when the local support was axed, her only option was as an inpatient 3hrs away, and I couldn't stay either. For her, it has been fantastic as she was able to access everything she needed. Have you considered going for a visit to see what it is like and what they can offer? My daughter did schooling when in hospital and they liaised well with her local school. All I would say is don't say no/yes until you have looked into it in more details and then write a pro/con list as to what it would do for her. Whatever you decide though, don't beat yourself up about it - you are doing the best you can for your child. Stay strong

[mutley_32]

Hi,I'm really sorry to read your story,I have just gone through something similar with my autistic daughter who is 21 and has FND.The GP,OT and physio all thought it the best thing for my daughter to receive inpatient rehab in hospital 3 hours away,though I would have been able to stay with her-this is something I made clear was non negotiable,and that my daughter couldn't go with out me,so that is something you can push for.My gut was screaming it's the wrong thing for my daughter,being in an inpatient environment receiving multiple treatments from different,unknown people intensively I knew would probably cause more trauma and ultimately cause more symptoms not decrease them.The sensory environment of a hospital is pretty unbearable for an autistic person,all her energy would be put into just coping with being in the environment and there would be nothing left for recovery,especially when there is no break form that environment. My daughter needed to be in hospital for a couple of days and it was a horrendous experience for her,I was able to stay in the bed next to her and we were lucky enough to have a room to ourselves-it's our local very small and quiet hospital,but we had to leave after a couple of days as my daughter just couldn't cope with it.After that I knew the inpatient rehab wasn't an option for us and I'm currently looking at alternative treatment's that are less intensive and not in a clinical environment.My daughter starts a treatment with a psychotherapist in a few weeks its called neurofeedback ,I was attracted to it because it's non invasive,and works to rebalance the nervous system neurofeedback.scot/what-is-... and we are then going to be working with a private neuro physio .There is nothing local in our area so all this is 3 hours away.I very much felt the local team of GP's etc were pushing us to go to in patient rehab as there is no one with any experience with FND in the team and they don;t know what to do,it might be the case with your daughter's team too.All I can advise is listen to your what your gut tells you and be confident with that answer.No one knows your daughter better than you and you know what she will and won't be able to tolerate.

The intensive,multi disciplinary approach which is taken with FND is designed and successful for neuro typical people,as you know , one box doesn't fit all and so it's looking at what your daughter will be able to cope with.

Have you looked into getting in touch with an advocacy service?They will fight your corner on your behalf and can really help when you are in this kind of situation.If there is a neuro psychologist in your area ask your GP to refer you to them-the advocate can do all that for you.

Hope this is of some help,I felt such huge relief when we changed our way of thinking ,as did my daughter.I hadn't realised quite how stressed she had been about going to hospital until then.There was a great feeling of pressure from the professionals to take their route,which can cloud your intuition, but there's always different roads to take you might have to look a bit harder to find them.lots of love x

[Kezzabella1984 in reply to mutley_32]

Thank you so much x