What to do if meds are missed?
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UPDATED: Sat, 06/21/2008 - 8:06am
Nuno P...
Anyone with similar situation - PLEASE HELP
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Hi All,
My 3 month old soon started having seizures at the age of 1,5 mo. He had a day with 3 small seizures, his head twiested to the left, he cried in a diferent manner and his legs and arms seemed to jerk.
He has been taking almost all AED drugs there are and seemed to have a perfectly development until lately, after the day that he had a day with over 80 seizures.
Here are the doctor resume to another colegue:
The pregnancy and labour were normal. There are no history of epilepsy or other diseases in the family and the parents are not consanguineous. The seizures are in clusters and at the begining they wre predominantly focal motor of the right limbs. They occur in clusters (10 or more seizures) with free periods of hours without seizures. The EEGs (with recorded seizures) show left temporal discharges with normal intercritic activity. However, the las performed EEG showed also generalized myoclonic discharge coincident with a gerneralized myoclonic seizure. During this EEEg he also perrformed a focal seizure with a left temporal discharge. The intercritic EEG remains normal.
The MRI is normal . Metabolic screen (blood, urine and CSF) is also normal. Ocular fundus is also normal. The skin is also normal (observed with Wood lamp).
The seizures remain despite the introduction of the following drugs:
- Fenobarbital
- Fenobarbital+Valproate+B6
-FB+VPA+CMZ
-VPA+VGB (80mg/Kg/d)+ CNZ
After this email he had that day with all those seizures and is now looking less active, but seems to have still a normal development.
Has anyone seen a case like this? And if yes if I can have the contacts to try to get more information on this subject? It is very dificult for me to just watch and do nothing! Is there any particular Hospital to deal with this type of problems?
Thanks to all!
Nuno Pedrosa
By Nuno P... at Sat, 06/21/2008 - 8:06am | 151 views | 7 comments
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Recent Comments on this Discussion
I haven't had a similiar problem but I am a senior who has had epilepsy since at least 1988 so I have had a lot of experience with it. My advice is to read everything you can about Epilepsy and then find a competent Epileptologist in your area. An Epileptologist is a medical neurologist who has taken extra training in Epilepsy and specializes in only Epilepsy. Don't try to be your own doctor. I live in a county of several million people and we have only a few of these specialists and Epileptologists are hard to find. Since I don't know even know what country you live in I am not sure there are any Epiletogists in your immediate area. You might have to go to a large city to find one. If there are many to choose from, see if you can find one that specializes in children.
Paul (Sounthern California)
If it hasn't already been done, push for at MINIMUM - a CAT scan... preferrably an MRI. Make sure that there are no developmental or other issues. Just to make sure you "aren't treating the sneeze but ignoring the pneumonia".... Know what I mean? In short... I would push for more tests beyond an EEG. An EEG will tell you (maybe) that your baby is having seizures... Well, duh doctors, you already know that... Tell them to run more than just blood tests to find out WHY. Yes, some situations aren't cut and dried and will not show up on an exray or an MRI or something, but they will help eliminate what ISNNT going on. (not to scare you, but I had bad headaches... for years. Finally a doctor said, lets do a CAT scan just to be safe since I had come in with a particularly gruesomely bad headache. I walked out of his office with a brain tumor.... But at least I HAD found out, so that they could treat it before it become any more of a problem than it already wa$... hey, I am alive today due to this, and if they hadn't done the test, they may have missed it until it was too late. And now I am expected to live a very long life, long enough to repay my children for all the heck they gave me, lol.... wait until I go out all night, when they were expecting me in by 10....LOL)....Againk, I am not trying to frighten you, but you need to eliminate all possibilites, not just put a bandaid on it. It could be something extremely common and easily fixed, who knows. I am one person that HATES the unknown and I HAVE to know.....Good, bad or indifferent, just give me the answer. Yes the antizeizure drugs are a God-send to those that have seizures, but if the situation can be fixed and he/she never have to take them again, then alls the better, 'tis so? I unfortunately will always have to take my meds, but hey....... I am HERE to be ABLE to take them, ya know?
Hi there. I am sorry your going through all of this. I don't know that I understand all of what your doctor wrote so I will just tell you the similarities I've had with my now 2 year old son. We were initially diagnosed with focal seizures and now are diagnosed with generalized myoclonic epilepsy--likely Doose Syndrome. My son was formally diagnosed at 10months old but had seizure activity (minimal) since about 4 months old. Like you we have run the gammet of medications unsucessfully. B6 helped with medication side effects but not the seizures. Depakote compromised his liver. We are now on the Ketogenic Diet and it is the only thing that has significantly improved his condition. (He developed normally until about 6 months old and then gradually slowed--is now developmentally delayed by about 35%). Were are you located?? I believe that JOhns Hopkins in Baltimore, MD is one of the best places for treatment. Has the Diet been considered??
Hi,
Thanks for your reply.
The Doctors, at this point, also thing it is a Focal Epilepsy with generalization after.
We have done the all the Diagnosis there are here (MR, Several Video EEG and Spectra) and there seems to be no cause for this focal epilepsy.
Are the seizures that I describe similar to the ones of your son? Were the EEG without crises normal?
In my sons case, some of the medications seemed to decrease the seizures, but none as stoped so far. In his best day he had 4 seizures...
I am from Portugal, we have good doctors but we are thinking about sending to France where we heard there are also very good specialists. USA could be an option if there are some reputed epilepsy centers. I will check the one you mention.
Hope all the best for your son and thank you again for sharing your situation.
Nuno Pedrosa
Nuno,
See if you get any improvement from vitamin B Complex supplements and cod liver oil capsules, taken with food. You may see longer periods of uninterrupted sleep, which can help considerably.
Let me know, please.
Mark
Mark,
Thank you for your reply. I will try that and let you know if we see any results.
Now seizures still are going on a daily basis, but are shorter and fewear than before. The medication is having some effect on the seizures. We have gone to France, to see if there is the possibility to have a surgical solution. We are waiting to be called for the final exams (another MRI and PET Scan).
Regards,
Nuno
Mark,
Thank you for your reply. I will try that and let you know if we see any results.
Now seizures still are going on a daily basis, but are shorter and fewear than before. The medication is having some effect on the medicins. We have gone to France, to see if there is the possibility to have a surgical solution. We are waiting to be called for the final exams (another MRI and PET Scan).
Regards,
Nuno