turners syndrome

[caroline]

I am thinking of moving to France and my daughter has turners syndrome.. She sees a specialist at least twice a year and has daily injections which we get free as she has a medical card.  Does anyone know if I would have to pay a fee to see a specialist in France and indeed to get her prescription of injections?  Also is is easy to register with a G.P in France?

 

Many thanks

 

Caroline

[TWINKLE]

Hi Caroline!

My 7 year old daughter who was born in France has Adrenal Hyperplasia and she also sees a specialist twice a year which is 100% free plus her daily prescribed tablets.  Here's a link for an association for Turners syndrome http://www.start-turner.ch/.  There are excellent paediatricians and childrens hospital all over France - don't worry you'll be fine[:)]

 

[opas]

When our 9 year old was born she had some signs which led to a suggestion she had Turners syndrome, it transpired about 12 months later that she has Klippel-Trenaunay /parkes Webber sydrome.

She receives everything to do with her sydrome 100% , even hand made shoes.

Go to your medicin traitant for a medical and they will arrange all your paperwork for you (well ours did)

[caroline]

Thank you for that - it is reassuring to know that.

[caroline]

Thank you for that - it is reassuring to know that.

[Patf]

There's a programme on channel 4 tonight at 9pm, uk time, about children of very small stature - not Turners syndrome. Pat.

[opas]

And very sad it was too. There was one little girl who was depressed about her size and her tiny teeth.

A brother and sister  in their teens who both had the dwarfism sydrome , their 20 month old cousin was bigger than them.

[TWINKLE]

I'm sorry but I don't watch programmes like that anymore.

The production teams responsible for these documentaries always manage to put the accent on the negative physical side of the people suffering with these rare illnesses.  I'm not saying that they are to be ignored but there are other downsides and dangers to chronic conditions. 

I'm more worried for my daughter when she gets a high fever or has gastroenteritis and can't keep down her medication.  She can become very dehydrated and extremely tired and often has to be hospitalised and kept on a drip whenever this happens.  The TV programmes don't talk about this though - they prefer the 'freak show' aspect of the whole thing - better for viewing points I suppose.  I've seen 5 of these programmes concerning my daughters condition over the last few years and this is my opinion and my daughters specialist agrees with me too.

What they also fail to mention is an address where you can get information on the illnesses and how to make a donation to help research these rare syndromes that don't benefit from the big charities.

Here's a link for anyone interested for Les Maladies Orphelins in France.  Recognition and a donation helps much more than sitting in front of the TV with a box of kleenex[:)]

http://www.orpha.net/consor/cgi-bin/home_info.php?Lng=FR&file=RareDisease

 

[opas]

Twinkle , I agree with you 100%.

The interviewer of these children/young adults last night asked such stupid questions, ie How tall are you?  , that poor girl had to live with how small she is everyday of her life and her answer? " nothing" .........not that she said nothing, she meant she was nothing tall! the effect of the sydrome on that child was mental as well as physical.

One of the mums said that the "specialists " didn't know enough about her sydrome as it was so rare.........I know exactly where she is coming from.

I also understand your comments about your worries for your daughters general health, when one has a child with a sydrome  no everyday illness is simple. I joined a support group when we were in the UK , not many members though , about 40 . I have also found a forum in France to do with my daughters syndrome .

Our next step is a specialist from Brusseles coming to Monpellier for a clinic in June.#

I have had a look at that site you gave and will spend more time on it later.

 

 

Caroline,  I hope you got some info out of this , even though we took it slightly off topic. Your Medicin Traitant will find you a specialist(even though you may have to travel some distance........we do a round trip of about 300 miles, )

[TWINKLE]

We are also members of an association and find it very reassuring and informative. 

Opas!  300 kms is a long way - do you have to go to Purpan - Toulouse?  Are you aware that you are entitled to an ambulance taxi service as your daughter is 100% prise en charge?  I used to use it when my daughter was a baby as I sometimes had to go without my husband and I found the visits quite upsetting. The lovely lady chauffeur used to stay with us and she helped me a lot. 

We are only 50 kms from the hospital and she's older now so I drive us there - we always go the cinema afterwards for a treat.

[Patf]

Opas - the programme was very badly made and that interviewer was unbelievably tactless. I could hardly watch it and changed channels. Sorry I mentioned it. Pat.

[Ergotherpeut1]

Our daughter has Downs Syndrome, we came to France when she was five, was not walking more than a few metres independently, and got frequent chest infection.  Now she is older (almost nine) she has almost no chest infections or other particular 'health' concerns.    We found it easy to register with a GP- although it was several months before we found out that she could be 'prise en charge' 100%.   Once we left from our rented house, we re-registered with another GP where we now  live, he advised us of this, then he took care of all the paper work for that. (He really is a fab GP)

I do not know how old your daughter is or if she presents with any particular needs outside of what may be usual for a child with this syndrome, as a starting point I think being part of an association is an excellent idea. You will hopefully be able to use this for guidance/support for specific issues if and when they arise. (I wish I had belonged to one earlier)

From my experience, statutory services can be quite rigid in their approach and will expect you to comply with their way of doing things (even if they cannot give you good clinical reasoning for this).  We stopped taking my daughter  to speech and language therapy  (SLT) - well they (he) refused to see her unless I complied 100%.  

We than contacted SESSAD and they agreed to take her on. She has two sessions a week as well as a 'circus skills' training once a week and swimming once a month.  All the sessions are prise en charge, as is the taxi which takes her these days.  In her mainstream school (fab school/teacher) she has a support worker (AVS) for 50% of the time.  SESSAD, the multi-disiciplinary edu/health team  and us are all involved in drawing up her statement of education.  If you have adequate support (and can also speak reasonable/good French)  the french system really can work well, you will hopefully be very impressed with the social and health care setup available for you and your family. 

Good luck with your planning, best wishes to you and your family 

[opas]

[quote user="TWINKLE"]

We are also members of an association and find it very reassuring and informative. 

Opas!  300 kms is a long way - do you have to go to Purpan - Toulouse?  Are you aware that you are entitled to an ambulance taxi service as your daughter is 100% prise en charge?  I used to use it when my daughter was a baby as I sometimes had to go without my husband and I found the visits quite upsetting. The lovely lady chauffeur used to stay with us and she helped me a lot. 

We are only 50 kms from the hospital and she's older now so I drive us there - we always go the cinema afterwards for a treat.

 

[/quote]

Thanks twinkle, I am now aware that we are entitled to the trip there and back , It was the lady at Groupama who pointed us in the right direction when purchasing health top up. but use our own car.........we go to montpellier not touslouse and claim back the milage and Tolls, if used. How would I go about using the taxi (if the need arose......I do drive, but I can never find the damned hospital even after 3 years!) and would we be able to use the train as that would also be easy(I know where I am from the train station) and this would be a great treat for her as It is a lovely route) And have an appointment during half term which I was going to use the train for(only if I can claim the fare back)

Our usual treat for her on these long days out are a meal at a resto of her choice.

[TWINKLE]

For the transport you need to ask your GP to write you a prescription - don't forget to ask for it on the 100% prise en charge formula.  You then have to call a local company and tell them at what time you have the hospital appointment - they will then calculate what time they need to pick you up at.

When you arrive at the hospital the chauffeur will sort out the necessary paperwork and stamping while you are in consultation. 

It's best to ask your GP which company to call.

[opas]

Thanks for that, we usually pick up a  2 forms at the Hospital , which the prof(or his understudy) fills their bit out and I do the rest when we return home , after calculating  milage/fuel costs and Tolls(if used) then send to Assurance maladie.