Infantile spasms (West symdrome) Does your baby have it or do you know much about it?
My 8 month old little girl has just been diagnosed with a form of Epilepsy called West symdrone where she was having episode of repeated head dropping lasting 10-15 minutes about 4 times a day. Followed normally by vaccant episodes where she would just stare for a good 5 minutes.
The doctors were amazing at the hospital and she is now on a high dose steroid to control the spasms.She cant mix with other children yet due to immunosupression of the meds but Next week she should be changing to Vibabatrin I think or having another Eeg to see if it still positive like the last one.
I was wondering if there are other mothers out there who have gone though the same thing. My little girl seems better in herself now and only has about one episode a day now but the long term picture that i have read up about the condition is very depressing. The doctors have told me its rare and can effect child development.
So far they don't know the cause and are still testing her for a lot of things. The doctors have said knowing the cause can shed more light on the likely hood of long term complication so I very anxious at present.
I'm sorry to waffle on so much but I can't help feeling alone about this. I would very much like to hear from other parents in the same situation.
I have tried baby related sites like huggies, pampers, baby centre and there is no forum discussion or any mention of the illness. i found some videos on youtube and lots of information on american sites about the condition but I would really love to talk to other parents about it but can't find any forums. Can anyone help?
I live in the Uk and was given 2 number of organisations but neither of them worked. It is a forum that I am very much after having contact with. Seeing as talking on forum is much more user friendly these days then the phone.
- sammyLv 51 decade agoFavorite Answer
wowvyou must be a really strong mother. where are you from? I am not going through your situation. but have you tried contacting organizations? from canada ( epilipsycanada) US? even contacting these places can easily network you. I can imagine how you need to relate to others at this time. I wish you n your daughter the best of luck and god bless
- rouseLv 44 years ago
the terrific i ought to tell from the Drs that dealt with my son become no. They did, even nevertheless, do a tremendously good artwork up of the two my and his mothers kin histories to verify. the terrific clarification I have been given for the reason become a available link to the Pertussis vaccine (careful with vaccines, examine alot earlier pumping all those issues right into a effective little physique.