Overperscribed Carbamazepine

Help, My daughters been havin partial seizures  for 2 months, started on Carbamazpine 100mg/5ml having 15mls aday, hospital decided to up dose to 20mls aday, doctor made a mistake with perscription and gave her 500mg/5mls and told me to give her 20mls aday this overdosed her daily or 7 days was rushed to hospital twice with bad seizures vommitting, fainting, shes also autistic so cant communicate to me whats wrong, the doc has apolgised and addmitted her mistake, i need some advice here i dont know what to do! my girls only 6 this has fritened me to death the hospital were very careful in what they would say to me as for what could have happened, please any advice.


Re: Reccurring Absenet Seizures in one yr old

Dear Friends,

I have been reading your comments and ordeals you have been through on
this blog and have found them quite relevant to what I am undergoing
from since last 10 months.  My 10 and half months old daughter Aiza
started fitting when she was merely 12 hours of age. She was kept
inNeonats ICU for a month while giving her phenobarbitone (loading
dose) and phenetoin. She remained fit free for a week and we were
discharged from the hosipital for the first time after her birth (1
month and 10 days). She was on phenobarb until she was 4 months old at
which point she started fitting again. We were again admitted to the
Peadiatric neurology ward for a week and her medicine dose was
increased and once she was loaded with phenobarb. After a few days we
came back home. she was fit free for 2 more months and then again
twiching and eye rolling started with right legs jerking for 10
minutes. This time when were admitted, the medication was changes and
the therapeutic bblood levels were monitred to see the effects of
Carbamazapine (new medicine). She started taking (Tegretol)
carbamazapine with phenobarb and for another month but the fits came
this time after a month. This pattern continued until our neurologist
achieved maximum level of carbamazapine. At this point she was
introduced to a new medicine called Topiramax. She is still taking
Topiramax but no more liquid tegretol or carbamezapine but with Keppra
and loading dose of phenetoin. We are still in the hospital and since
last one week I have seen quite different kind of seizures which she
never did before. The worst part is that if she is not loaded with
phenetoin, she keeps fitting as soon as she tries to go to sleep. she
repeats it after every 15 minutes and during all this she remains
sleepless as she cannot sleep due to seizures. She remains fit free for
2 days after she is loaded with phenetoin. As i mentioned she is still
on Keppra and Topiramax and sodium bicorbonate as well as she lacks
vitamin D for the last one month.  I dont know what should be done at
this point as doctors merely keep changing medicine after they reach
tot he maximum level of that medicine.

My question is are Topiramax and Keppra proving ineffective? Are we
going to be in the hospital for the rest of our life waiting for
loading dose of phenetoin every time her seizures go out of control?
wont she be able to be fit free ever in her life?


I would appreciate your kind comments and suggestions.


thanks alot


Re: Reccurring Absenet Seizures in one yr old

the docs are trying to find a medication or combination of medications that will have the best effect, with the least amount of seizures.  it may take some time to find the best treatment.  next, at her age, her body is changing on an almost daily basis.  that also makes it difficult to find the best treatment. you may want to talk to the doc about using the dilantin(phenetoin) as the medication for now.  It is not uncommon for people to have seizures during sleep, especially when sleep is changing from one stage to the other.  you did not mention if she is still on the phenobarbitol.  i will not say i can imagine how you feel watching what is happening to your daughter.  i am the one with the seizures.  if it were my child i would have a great deal of difficulty, in both not being able to help my daughter, and at the docs for not finding anything that will help. 

With reguard to the future.  i can only tell you that all people are different.  i was very sick as a child, up until i was about 12.  the seizures stopped.  i was off medication for 18 years.  the epilepsy started back and the new meds took control and i was okay for another 10 years, seizures only at night.  at 40 the seizures went out of control again. up to 300/mt.  new meds, and again some control, but not as good.  i still have seizures at about 20/mt.  i am not able to work any longer, but with self management,  i do well as far as day to day activity,  living life with working, and with out driving.  there is still a good life.  hope is not gone.  fear will be with you.  advice, learn all you can, about everything that is going on and why.  make the docs explain all of the stuff so you can understand.  they forget that most of us don't speak their medical language.  i hope this helps alittle.  rikk