Hi everyone,
for those who dont know me I will rehash all about me.
I am a 27 year old mother of two kids and we all have epilepsy- tuberose Sclerosis Complex to be precise
I am lucky enough to have no seizures and no medicine after taking Tegretol CR tabs(all up 1200mg a day). i was diagnosed at approx 6 months old and had various medicines until they found that the Tegretol worked for me. i was on tegretol for approximately 20 years, and I have now been medicine free for almost 6 years.Thats the good part!
My oldest son xavier is 6 in march and he was diagnosed with epilepsy in utero and had a 3 year gap of no seizure activity.He started having absence seizures and had progressed to tonic clonic, drop seizures and then back again to absence currently, the medicines do that! He is on 3 meds at the moment:
Tiagabine (gabatril) 5mg tabs 2x morn and night
tegretol CR 200mg 1 1/4 tabs morn 1 1/2 tabs night
frisium 10mg 1/2 tab morn 1 tab night
He has been diagnosed with ADHD, development delay and he has symptoms of autism.this is common with Tuberose Sclerosis Complex. He attends a specialised school.
My other son Kyuss is 3 years old and he also has Tuberose Sclerosis Complex and was also diagnosed in utero. He has only had myclonic jerks and they have stopped for now but i am waiting to see what happens now with the seizures. He has high blood pressure and taked medicine three times a day and has frequent nurse visits to monitor his blood pressure. Luckily his development seems to be only slightly delayed and at this point his behaviour is consistent with a child his age.
Thank you for reading
for those who dont know me I will rehash all about me.
I am a 27 year old mother of two kids and we all have epilepsy- tuberose Sclerosis Complex to be precise
I am lucky enough to have no seizures and no medicine after taking Tegretol CR tabs(all up 1200mg a day). i was diagnosed at approx 6 months old and had various medicines until they found that the Tegretol worked for me. i was on tegretol for approximately 20 years, and I have now been medicine free for almost 6 years.Thats the good part!
My oldest son xavier is 6 in march and he was diagnosed with epilepsy in utero and had a 3 year gap of no seizure activity.He started having absence seizures and had progressed to tonic clonic, drop seizures and then back again to absence currently, the medicines do that! He is on 3 meds at the moment:
Tiagabine (gabatril) 5mg tabs 2x morn and night
tegretol CR 200mg 1 1/4 tabs morn 1 1/2 tabs night
frisium 10mg 1/2 tab morn 1 tab night
He has been diagnosed with ADHD, development delay and he has symptoms of autism.this is common with Tuberose Sclerosis Complex. He attends a specialised school.
My other son Kyuss is 3 years old and he also has Tuberose Sclerosis Complex and was also diagnosed in utero. He has only had myclonic jerks and they have stopped for now but i am waiting to see what happens now with the seizures. He has high blood pressure and taked medicine three times a day and has frequent nurse visits to monitor his blood pressure. Luckily his development seems to be only slightly delayed and at this point his behaviour is consistent with a child his age.
Thank you for reading
