2 years old nephew need info

[onlywild]

Hello everyone i have been reading for long time but first time i registered and im writing , and my englısh is not good and if i break any forum rules please try to understand me its a life and death matter to us because

My nephew who is 2 years old girl name ''serra'' having seizures pushing her chin turning eyes upside... a
and than she has Diagnosed doose syndrome we did travel araound Turkey to find good doctors and now our doctor tried keto diet but did not work than we gone for various of medications ( seizure stoppers ) .

İts been almost 5 months we did try more than 7 medications and most of them were useless or did serious allergy .
now she is worse she barely walking and she is stopped development as brain she is not even smiling any more...

me and my brother and brothers wife is working in average jobs we do not have much options but we are about to sell our houses and cars to get serra better treatment.

Since even our doctors does not have any idea abaout foreign country treatments we are looking online we found the

doosesyndrome . org
epilepsy . com

which is not viable options for us because they are in USA its imposble to go USA from Turkey in this small window of time ...

so we are more like lookin europe and we are trying to find it in germany if its posble ( we have a cousen at germany it will be alot easier at germany. f for example we found the (cant event translate that site they dont have englısh options.. )

epilepsiezentrum .de ( if you know any info abaout this clinic can you also answer this )

or we found few other clinics at germany...

now im asking from you people a favor can you please explain to me in my englısh level what is going to be differant if we take serra to europe for clinical treatment ?

i can number my questions so its easy to read for you


1- can you tell us a clinic that knows what they doing at europe we prefer in german ofcourse ?
2- is clinical treatments better than home treatments ?
3- is there any other cures than drugs at the clinics
4- how much time serra need to stay in clinic ( i know its almost imposble to answer this but can u atleast tell me your opinion because her father and mother going to leave their job sell their home and car its going to be last change of ours i will try to get second job and support them while they are at europe since euro is much expencive in our country we cant afford much.. )))

5- how much we have to pay for clinics ( at least the ones you tried )

example 30 day treatment = 10k euros. ?

6- can you tell me is there options for father and mother stay with her at the clinic you are suggestions us ..
7- how does foreign patients registers and are they accepted even if no one knows langue ?
8- is there any charity provider that can afford clinic cost only for clinic costs? because yes we can afford it somehow but after ''serra '' get better she will have almost no future here no money no saving at her dady and mommy ...


again im sorry if i did break any rules and im sorry for my langue im not good at englısh...

 

[Topcat]

Hello and welcome. I hope that someone here can get your son the help that he needs.

 

[Hobbes]

I'm so sorry to hear about your nephew or niece (for a girl). Doose syndrome is a often difficult to treat form of epilepsy. The two US web sites you note have info about Doose syndrome. Those are web sites of organizations, not a web site for a doctor/clinic/hospital.

Maybe I misunderstand your post but it was not clear what your understanding about what treatment is. Treatment for various epilepsies are not 30 days in some clinic/hospital and one is fixed. Finding a treatment that works is not usually done with a long stay in a hospital. If you are talking about steroid therapy, it's my understanding that parents can give injections and another steroid option is taken by mouth. Think those steroid treatments go longer than a month but they all would be followed up with epilepsy medication.

 

[valeriedl]

I started having seizures 13 years ago when I was 27. It can take a while to find the right medicines to help reduce seizures because the first ones might not be the right ones.

They tried a lot of different medicines but they were also useless or I had bad side effects from them or an allergy. I was having almost one or more seizure a day. After about two years we did find some medicines that helped but not much.

I want to let you know that there is no cure for epilepsy. Some people might have them very often and some people might go years between them.

My neurologist told me about the VNS (Vagus Nerve Stimulator) and I got one 3 years after I started having seizures. It has helped very much. I am still having seizures on average 4 a month. The seizures are not nearly as bad as they were in the beginning either. I don't know how old you have to be to get one and I don't know how much the surgery would cost. I don't know if this would help your niece or not either.

A long stay in a clinic/hospital is usually not needed unless something serious happens and she would not be able to come home. Even if a surgery is done the stay is usually only only a few days.

Is she staying with the same doctor or changing them very often? Staying with the same doctor for a while might be best so they can understand more about what is going on with her and what might be best to try next.

I don't have any answers or suggestions for your other questions because I live in the US but hopefully someone might.

You didn't break any rules either. As long as you don't swear or talk about things in a rude way you are alright. I hope you were able to understand what I said. You're English is very good too!