Re: Anti convulsants without prior investigation

[Guest guest]

Dear Margaret

 

We had all the investigations on our DD and nothing showed up on eeg or MRI.. but she had convulsions and other seizures... They put her on Tegretol.. which did not change seizure frequency only gave her the most frightening night terrors.. so much so that she was too afraid to go to sleep.

 

they wanted then to add other meds... we said NO... so we then weaned her off Tegretol and she went onto Epilim.. again up to  800 mg twice daily and still whole spectrum of seizures....

 

It was only with TST that we have got control over the seizures... 15 weeks seizure free this Monday... longest spell in her life..

 

AEDs only slow down blood to brain.. to stop build up of charges which then spark with seizure.... I really think working on improving oxygenation is a much more helpful way of controlling seizures...

 

 

Tracey

 

Had a letter from the paed yesterday. They would consider putting H on Tegretol even without an EEG, and they son't want to do any investigation into his neurological state beyong an EEG. I'm not happy with this and would like to talk to someone about getting a full workup.

He hasn't had any investigations since he had infantile spasms as a baby 10 years ago. He hasn't had an MRI since he was 12 months old and he is now 11.Margaret