Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 My daughter has been on keppra for 4 years and she still has seizures. Her doctor told me it takes about 4 weeks before you will notice a change. Sent via BlackBerry from T-Mobile Seizure Medicine My daughter has been on Keppra for about two months now. The keppra has made her have less seizures but she is still having multiple seizures daily. How long do the doctors try one medicine usually before going to another one. I call the doctor every other day and I can only get him to call me back maybe once a week and sometimes he doesnt call back at all. How long after he increases the dose should I wait to call him back and say its not working. Saturday she had four seizures and then slept the whole day. Last week we were in the hospital for five days because she had to get a NG tube. She kept having seizures so the nurses kept telling her doctor. Her doctor never called us and he didnt even come by her room. We were on the same floor as him three doors down. I have asked his nurse all these question but i never get an answer. le Shollar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 le,  I would first try and seek a new doctor (if possible). You need to see a pediatric epileptologist (fellowship trained in epilepsy) and try to get a female doctor, possibly at an academic center. I think they are more caring. It will probably be an uphill battle to control seizures and maybe Keppra will work at the right dose but adjunctive therapy (multipe seizure meds) may help get better control. Consider trying Onfi (new drug that has been around for while in other countries,). We have used Onfi (formally known as Clobozam) and it worked great for our son (bilateral pmg) You need someone with tons of experience and that has a team of nurses to field calls.  Hang in there and continue to fight, Don't give up!  Subject: Seizure Medicine To: polymicrogyria Date: Monday, April 9, 2012, 1:01 PM  My daughter has been on Keppra for about two months now. The keppra has made her have less seizures but she is still having multiple seizures daily. How long do the doctors try one medicine usually before going to another one. I call the doctor every other day and I can only get him to call me back maybe once a week and sometimes he doesnt call back at all. How long after he increases the dose should I wait to call him back and say its not working. Saturday she had four seizures and then slept the whole day. Last week we were in the hospital for five days because she had to get a NG tube. She kept having seizures so the nurses kept telling her doctor. Her doctor never called us and he didnt even come by her room. We were on the same floor as him three doors down. I have asked his nurse all these question but i never get an answer. le Shollar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 le, It is obvious that your neuro is not comfortable treating your child. Get a new one now preferably a epilepsy specialists. Some neuros think that due to the malformation you can not control the seizures but that is not true. Their are many options in this day in age. Keppra is one of the best drugs of choice for our kids because of high spiking without actual seizures and Keppra is not only for seizures but to decrease spikes. It was Dr. Dobyns that told me if Riley does not help as you like go somewhere else. We went to Dr Chugani in Detroit and he got us in fast is way awesome!Diane To: polymicrogyria From: danielle16107@... Date: Mon, 9 Apr 2012 17:01:29 +0000 Subject: Seizure Medicine My daughter has been on Keppra for about two months now. The keppra has made her have less seizures but she is still having multiple seizures daily. How long do the doctors try one medicine usually before going to another one. I call the doctor every other day and I can only get him to call me back maybe once a week and sometimes he doesnt call back at all. How long after he increases the dose should I wait to call him back and say its not working. Saturday she had four seizures and then slept the whole day. Last week we were in the hospital for five days because she had to get a NG tube. She kept having seizures so the nurses kept telling her doctor. Her doctor never called us and he didnt even come by her room. We were on the same floor as him three doors down. I have asked his nurse all these question but i never get an answer. le Shollar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Ok I have a doctor that knows a lot about pmg but I can't get in to see him until June. I even have people who work in the same hospital as him talking to him saying we need to get in now. I don't know what else I can do. Sent from my HTC on the Now Network from Sprint! ----- Reply message ----- Date: Mon, Apr 9, 2012 12:18 pm Subject: Seizure Medicine To: <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Does anyone know of a good doctor in the DC area experienced with PMG? Keppra has never worked for our baby. The ketogenic diet so far has been the only thing that has controlled his seizures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Two suggestions, which may or may not help...1) ask your pediatrician to write a letter describing the immiment threat your child is in, whether the seizures are life threatening, etc. 2) get on the wait list, and call every morning to see if there is an opening. Don't worry about " being annoying " --you are advocating for your child! Best of luck, Thea Seizure Medicine To: <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Dr. Chang at Children's National, Fairfax is the head of pediatric neurology and sees my daughter Syd. Sent from my iPad > Does anyone know of a good doctor in the DC area experienced with PMG? Keppra has never worked for our baby. The ketogenic diet so far has been the only thing that has controlled his seizures. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 We were suppose to start the keto diet soon but then Thursday the doctor randomly called and said they would call back Friday about some problems with the keto diet. Of course I haven't heard back from him. Sent from my HTC on the Now Network from Sprint! ----- Reply message ----- Date: Mon, Apr 9, 2012 2:24 pm Subject: Seizure Medicine To: , " Hagerty " , <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 I called the doctor office and they said the only way I can get my daughter in quicker is to take her to their emergency room and say she is having seizures. So I'm doing this thuraday. Then once I get in a room I'm going ask for the other specialist I need my daughter to be seen by. Sent from my HTC on the Now Network from Sprint! ----- Reply message ----- From: theasprague@... Date: Mon, Apr 9, 2012 2:56 pm Subject: Seizure Medicine To: <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 How has she done with him? We live n Springfield. My son is doing well, but I would like to know what there is in the area. My son is treated in Bethesda. Thanks for the info. Julissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Time to find a new doctor. They need to be aware and act on the situation. Can the Keppra be increased?? Also you know whenever anything is brewing with a kiddo or they have procedure (like NG) they will be reactive and possibly have more seizures. Keppra was my 's God-sent. He rarely has seizures but that was after many tries. Drs need to return calls. Good luck with your daughter. ________________________________ To: polymicrogyria Sent: Monday, April 9, 2012 1:01 PM Subject: Seizure Medicine  My daughter has been on Keppra for about two months now. The keppra has made her have less seizures but she is still having multiple seizures daily. How long do the doctors try one medicine usually before going to another one. I call the doctor every other day and I can only get him to call me back maybe once a week and sometimes he doesnt call back at all. How long after he increases the dose should I wait to call him back and say its not working. Saturday she had four seizures and then slept the whole day. Last week we were in the hospital for five days because she had to get a NG tube. She kept having seizures so the nurses kept telling her doctor. Her doctor never called us and he didnt even come by her room. We were on the same floor as him three doors down. I have asked his nurse all these question but i never get an answer. le Shollar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 She was having seizures three times a day in average. She has been in keppra for two months now and the doctor does increase it some I just don't think he is being aggressive towards to seizures. She got her NG five put in last Friday. She continued to have three or four seizures. Then she has none for two days and now is back to having four. I don't think the NG tube is causing her to have them. If anything they should help because now she isn't spitting up all her keppra. Sent from my HTC on the Now Network from Sprint! ----- Reply message ----- Date: Mon, Apr 9, 2012 5:14 pm Subject: Seizure Medicine To: " polymicrogyria " <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 It makes me furious that we have to go through such extremes to get our children taken care of! I know when Brie was in the hospital I made them get every specialist including a geneticist which we were going to have to wait to see outpatient like 3 months. Insist on getting whatever you need while you are there. If you have any problems getting what you need, insist on seeing a patient advocate. It is their job to make sure your needs are met during your stay. And don't forget that we all need to be pursuing changes legislatively in order to change this pattern of unacceptable treatment for our children and those yet to be born! This is a big part of what the PMG Awareness Organization plans to be working toward in the very near future. Catrina Byrge CEO, PMGawareness.org Sent from my iPhone On Apr 9, 2012, at 4:58 PM, " danielle16107@... " wrote: > I called the doctor office and they said the only way I can get my daughter in quicker is to take her to their emergency room and say she is having seizures. So I'm doing this thuraday. Then once I get in a room I'm going ask for the other specialist I need my daughter to be seen by. > > Sent from my HTC on the Now Network from Sprint! > > ----- Reply message ----- > From: theasprague@... > Date: Mon, Apr 9, 2012 2:56 pm > Subject: Seizure Medicine > To: <polymicrogyria > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Julissa, We live in Silver Spring and bring our son to Kennedy Krieger Institute (a hospital connected to s Hopkins for children with special needs). Our son sees Dr. Bruce Shapiro and we are thrilled with the care. We are told to report every seizure and rarely do we not hear back the same day. At office visits we never feel rushed, most appointments are 90 minutes or more if we are dealing with more complicated issues. I have been to other institutions in the area and am so happy that we have found the right care for our son. Feel free email me if you want more information. Esther > ** > > > It makes me furious that we have to go through such extremes to get our > children taken care of! I know when Brie was in the hospital I made them > get every specialist including a geneticist which we were going to have to > wait to see outpatient like 3 months. > > Insist on getting whatever you need while you are there. If you have any > problems getting what you need, insist on seeing a patient advocate. It is > their job to make sure your needs are met during your stay. > > And don't forget that we all need to be pursuing changes legislatively in > order to change this pattern of unacceptable treatment for our children and > those yet to be born! This is a big part of what the PMG Awareness > Organization plans to be working toward in the very near future. > > Catrina Byrge > CEO, PMGawareness.org > > Sent from my iPhone > > > On Apr 9, 2012, at 4:58 PM, " danielle16107@... " < > danielle16107@...> wrote: > > > I called the doctor office and they said the only way I can get my > daughter in quicker is to take her to their emergency room and say she is > having seizures. So I'm doing this thuraday. Then once I get in a room I'm > going ask for the other specialist I need my daughter to be seen by. > > > > Sent from my HTC on the Now Network from Sprint! > > > > ----- Reply message ----- > > From: theasprague@... > > Date: Mon, Apr 9, 2012 2:56 pm > > Subject: Seizure Medicine > > To: <polymicrogyria > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 I totally agree. It is upsetting that child has to wait so long for care. When we lived in ville, I did not care for the treatment my son was receiving. The doctors were not agressive enough. Every single time I called the doctor I had to wait days. It was upsetting especially since hewas just a month old. I was ready to change doctors, but were reassigned. When we moved to the DC area, I was warned about military care by people, but a few specialist told me to give them a chance. We did and we are satisfied with the care my son is receiving and especially with the communication between doctors, therapists and nutritionist. I feel that care for all of our children should be like this. Communication is very important. You may have the best doctor, but without communiction it is useless. I also keep in touch via email with most of the doctors and the nutritionist, especially the neurologist. The few times my son has been at Walter s I & #39;ve made the most of it because I know they will send the specialists if I ask for them. Usually, I don & #39;t have to ask. They know that treating my son is complicated. They would not let him go home if I was not comfortable with his progress. They follow up at their office pretty soon after. Last month my son went in to start the ketogenic diet and the day we went in he got RSV. He was treated for RSV, diet, seizures and sleeping problems. I also requested a OT evaluation and a social worker. All of his doctors met to make sure everything was considered and covered, since the diet is not without risks. I am sure they are sick of me. I did the same the previous visit two weeks prior. However, if I had not done this we & #39;d wait 1-2 months for an appointment. Now, I have so many follow ups I can & #39;t keep up with them and a date for his surgery to place a permanent tube. But, it is my job and I am very aggressive. My son is the most famous baby at the hospital. Good luck! Keep up the good work. Julissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Esther, We are happy with our care in Bethesda, but always like to know about good civilian care. Can you email me at auburn715@.... I would live to know more about you and your child since we are in the same area. I haven & #39;t met anyone with a child with PMG in the area. My son will be one on Sunday and it has been a long year. Thanks,Julissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Julissa, I love it you go girl! Our kids are complicated and we are their only advocates and we are in search for the best care. I absolutely hate sitting across for a doctor that looks at me and says well her malformation is massive. Then in his note( I always get all my medical records )it states her seizures are generally probably under control. Even in the ER the on call neuro said well with her condition she will have a lot of seizures No with a horrible neuro team she would but not with an advocate like ME. Well if my neuro would of listened and processed and believed me or even went back to read what he wrote before maybe he would of got that she was regressing and in non convulsive status and that is not probably under control just because she is not clinically having seizures. Ok sorry for the vent! I was so glad to find a new neuro even 5 hr away that gets it. I just email him and then for admissions we have to have one that works with my knowledgeable one. Has anyone done anything with a mitochondrial work up?Diane mom Nisha 5 UnilatPMG left hemi CP Quote Link to comment Share on other sites More sharing options...
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