Whereneverever Posted October 27, 2014 Share Posted October 27, 2014 Please don't quote. Thanks! My seven year old has epilepsy. She has been having more seizures than normal lately and so over the phone her neurologist keeps bumping her dosage up. We are now over the top of the dose for her age and size. She has been having a hard time falling asleep and staying asleep since the last dosage increase- and being overtired makes her have more seizures. I called the neurologist's office and reported the sleep issues and they told me to have her pediatrician handle it. My pediatrician is not very comfortable in handling things related to her neurological medication since they don't prescribe it or monitor it. Apparently both offices think the other should be handling this and in the mean time, she isn't getting enough sleep. Who would you expect to handle sleep problems? The first open appointment for the neurologist is next month and we are getting a repeat EEG done then. There is no other close pediatric neurology practice- as it is we drive to the next state. Currently we just keep making ER trips while we wait. Quote Link to comment Share on other sites More sharing options...
dancingmama Posted October 27, 2014 Share Posted October 27, 2014 I would expect the neurologist to handle it and I would find a new doctor too. That's ridiculous. I'm sorry you are both going through this. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 27, 2014 Share Posted October 27, 2014 Side effects from a medication should be monitored and handled by the prescribing doctor - in this case the neurologist. Unless he thinks there is no other medications available and they need to treat the side effect with other kinds of medication or treatments? Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 27, 2014 Author Share Posted October 27, 2014 We don't have a ton of awesome medication choices left so we are probably looking at a complimentary medication for sleep. But even so, so many sleep medications interact with AEDs that I don't blame the pediatrician for not wanting to dose her. UGH. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted October 27, 2014 Share Posted October 27, 2014 Where do you live? If you live in Texas and have to go to the next state for a new neurologist, that is different than if you live in Maryland. I would expect the neurologist to handle this (and my son regularly sees specialty doctors). Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 27, 2014 Author Share Posted October 27, 2014 Wyoming and we go to Colorado. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted October 27, 2014 Share Posted October 27, 2014 If the drive is less than 2 hours, then I would be seeking a new neurologist. Otherwise, I would push the current neurologist. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 27, 2014 Author Share Posted October 27, 2014 It's more than two hours to the current neurology practice and the next closest one is about 7 hours. We are really limited by geography. I plan to really press for help at the appointment next month, I just want to make sure I'm not off base that it's his job, not the pediatrician. Thanks! Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted October 27, 2014 Share Posted October 27, 2014 How far is the children's hospital? If you already go there would it be too awkard to be evaluated by someone else in the same practice. I don't think my dd had as serious issues as you describe, but it was this kind of behavior that led me to switch neurologists. In the case of my dd, it is clear looking back that the neurologist (considered one of the best in our area) did not know what was happening, and because he wanted stay the course and refused to consider alternatives he was going to hurt (cause serious liver damage) my dd. Quote Link to comment Share on other sites More sharing options...
displace Posted October 27, 2014 Share Posted October 27, 2014 I also agree prescribing doc should handle. Is it possible they don't understand it's a result of the meds? Maybe the neurologist thinks it's unrelated? I assume you've tried melatonin or asked about it? Quote Link to comment Share on other sites More sharing options...
Cera Posted October 27, 2014 Share Posted October 27, 2014 The prescribing doctor should handle the medications side effects. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted October 27, 2014 Share Posted October 27, 2014 How far a flight is it to Sacramento, CA.? Our Ilinois neuro moved to be head of kid's neurology at Sutter Children's Hospital there, and many families still use him, flying there from all over the country. Dr. Michael Chez. I agree with the others, it is the neuro's responsibility to deal with side effects from meds such as sleep issues, not the ped. You cab also ask a pharmacist for his/her ideas to present to the neuro. Good luck! Quote Link to comment Share on other sites More sharing options...
fruitofthewomb Posted October 27, 2014 Share Posted October 27, 2014 My dd has seizures & is on 3 meds. Wr are also at the end of the line with medication options. And we are dealing with some serious side effects. I understand your frustration!! It is definitely the neurologist's responsibility-particularly because the lack of sleep causes more seizures! Could you call & ask about: reducing the night time dosage so she can sleep? Trying melatonin or some other natural sleep aid? I use herbs for myself & kids (chamomile, lemon balm, valerian are my go tos). If he/she wants pediatrician to manage sleep issues can he/she call & consult with your pediatrician? I also understand that switching neurologists isn't so easy! Hugs to you! PM me if you want to vent. My dd is 9 & I get so tired of dealing with these medications! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 27, 2014 Share Posted October 27, 2014 I agree with neurologist. Could be that the nurse is the gatekeeping and the doctor doesn't even know what is going on. Our neurologist suggested and supports melatonin for my girls........but of course, each child is different. Is she only on 1 seizure med? One of mine is on a combo of 2 for best results. Quote Link to comment Share on other sites More sharing options...
texasmama Posted October 27, 2014 Share Posted October 27, 2014 Yes, the neurologist. I'm sorry they are giving you a hard time. Since your child has a specialist, that specialist should be dealing with the meds, side effects and related issues. I would persist with the neurologist, making an appointment and explaining the situation if needed even though it is quite a drive. The neurology office cannot force your pediatrician to handle an issue he is not competent to handle and knows this. Quote Link to comment Share on other sites More sharing options...
Jenrae Posted October 27, 2014 Share Posted October 27, 2014 The neurologist should handle this situation as it is most likely due to the meds he is prescribing. Furthermore, most pediatricians do not have a clue about sleep issues, in my opinion. Quote Link to comment Share on other sites More sharing options...
J-rap Posted October 27, 2014 Share Posted October 27, 2014 I think the neuro doc should handle it, and you shouldn't have to wait til your next appointment to get help. I would call his nurse now, and expect help. It might be something they can help you with over the phone -- at least temporarily; then you can re-evaluate after her next EEG. Unless the neuro doc seems really terrific, you might want to consider a new one. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 27, 2014 Author Share Posted October 27, 2014 How far a flight is it to Sacramento, CA.? Our Ilinois neuro moved to be head of kid's neurology at Sutter Children's Hospital there, and many families still use him, flying there from all over the country. Dr. Michael Chez. I agree with the others, it is the neuro's responsibility to deal with side effects from meds such as sleep issues, not the ped. You cab also ask a pharmacist for his/her ideas to present to the neuro. Good luck! I would love to be able to go somewhere else and see someone really good, it just isn't financially feasible at this point. I will make a note of his name, though, thank you. My dd has seizures & is on 3 meds. Wr are also at the end of the line with medication options. And we are dealing with some serious side effects. I understand your frustration!! It is definitely the neurologist's responsibility-particularly because the lack of sleep causes more seizures! Could you call & ask about: reducing the night time dosage so she can sleep? Trying melatonin or some other natural sleep aid? I use herbs for myself & kids (chamomile, lemon balm, valerian are my go tos). If he/she wants pediatrician to manage sleep issues can he/she call & consult with your pediatrician? I also understand that switching neurologists isn't so easy! Hugs to you! PM me if you want to vent. My dd is 9 & I get so tired of dealing with these medications! He did say that he wasn't opposed to us trying melatonin but would not give advice on any other sleep treatments. Thanks for the venting offer! I agree with neurologist. Could be that the nurse is the gatekeeping and the doctor doesn't even know what is going on. Our neurologist suggested and supports melatonin for my girls........but of course, each child is different. Is she only on 1 seizure med? One of mine is on a combo of 2 for best results. She has a 3 med combo and we've added a fourth periodically when she is sick or has something else going on. We're just topped out. :( I think the neuro doc should handle it, and you shouldn't have to wait til your next appointment to get help. I would call his nurse now, and expect help. It might be something they can help you with over the phone -- at least temporarily; then you can re-evaluate after her next EEG. Unless the neuro doc seems really terrific, you might want to consider a new one. There isn't any close other ones- we drive over two hours to see this clinic and they don't seem to encourage doc shifting within the same practice. I did call the nurse and she said we could try melatonin but that was the extent of what he could suggest. Thank you to everyone who has taken the time to respond! Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 27, 2014 Author Share Posted October 27, 2014 OK, yep, they still don't want to treat it. ARG. Quote Link to comment Share on other sites More sharing options...
srs Posted October 27, 2014 Share Posted October 27, 2014 Have you tried the melatonin? If you do and it doesn't help, then at least you can call back with that info. Melatonin has helped my daughter with neurologically caused insomnia (not the same as your situation, I know), although I have also seen it sometimes cause her very early wakings and/or daytime grogginess. Quote Link to comment Share on other sites More sharing options...
Tap Posted October 27, 2014 Share Posted October 27, 2014 Will your pediatrician call the neurodoc and discuss options with him? Otherwise talk to your pharmacist and ask for what OTC options would be okay to use in the mean while. That way you can do one of two things. 1. get some relief for you daughter if you find an acceptable med or 2. eliminate some options that your neuro may suggest at the next visit. ((((HUGGS)))) Quote Link to comment Share on other sites More sharing options...
Elisabet1 Posted October 27, 2014 Share Posted October 27, 2014 I would go to a different neurologist. He should have run more tests and considered different meds rather than just increasing her doses to such a high amount. Neurologist are who deal with sleep issues too. Quote Link to comment Share on other sites More sharing options...
mommymonster Posted October 28, 2014 Share Posted October 28, 2014 My son has a brain tumor, so not the same. One thing that is quite common for brain tumor kids, though, is to get a diagnosis and treatment recommendation, and then to send the file out to a different neurosurg group to do a file/recommendation review (some focus on different parts of the brain; it's not personal, and everyone knows it). You don't fly to meet the different neurosurgery practice. They look at the films, look at the reports, and make recommendations. Maybe consider talking to a few other neuros and see if they're willing to do a file review? It might be one of those things where you can get a second set of eyes your daughter's challenges without flying anywhere. It might be worth a shot. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 28, 2014 Author Share Posted October 28, 2014 I have tried melatonin and it doesn't seem to help. She is usually falling asleep fine but not staying asleep well and my understanding is melatonin is less effective for that. I haven't heard of a file review before, I wonder how you initiate it? What if the treatment suggestions are different? Does the new doc prescribe things or the old? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 28, 2014 Share Posted October 28, 2014 There are time release melatonin pills that will help someone stay asleep. Quote Link to comment Share on other sites More sharing options...
Pronghorn Posted October 28, 2014 Share Posted October 28, 2014 Is her bedroom dark? Even small amounts of light can reduce melatonin levels in the body. You can get special glasses or nightlights (see lowbluelights.com) or use a sleep mask to keep her eyes from being exposed to light. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted October 28, 2014 Author Share Posted October 28, 2014 I didn't know about time released melatonin, thanks! Yes, her room is dark. Nothing changed other than the meds to start this. Quote Link to comment Share on other sites More sharing options...
LMV Posted October 29, 2014 Share Posted October 29, 2014 :grouphug: Hugs! I do get the whole anticonvulsant nightmare. We're currently in Keppra limbo because it is working but she is slowly losing weight and definitely not gaining and growing. The pediatrician and peds neurologist have had an extensive conversation and he is afraid to switch her to something else and now wants to do more of a metabolic workup because he really thinks the weight loss is just more evidence that there is something else going on. The metabolism guru wants to do a muscle biopsy but now anesthesia is not wanting to put her to sleep to do that and peds surgery will not do it under local [which is good because I don't think I would let him if he wanted to]. All involved physicians will be conference calling on Friday and coming to some new plan I hope. The idea to have your pediatrician talk to the neurologist is a good one. Will your pediatrician do that? As far as doing an informal second opinion it will need to be set up through your physician because in a sense they are really just curb siding their colleague for some help---it is possible this has already happened behind the scenes if her seizures have been challenging to manage. What MommyMonster is referring to with "file review" is more common in the hematology/oncology world because really what they are giving their opinion on is the pathology slides, and or imaging studies and this is done without the patent present in the usual course of action. Our daughter's biopsy slides were reviewed by two different pathologists beyond the pathologist at the hospital where she had the original biopsy done. The first one was a matter of course because the standard is that slides be reviewed and diagnoses affirmed by another pathologist before making certain diagnoses. The second was the pathologist at the children's hospital where we sought a second surgical opinion. You might be able to set up a similar scenario for an EEG being rescored by a different neurologist but when you start getting into prescribing anticonvulsants it is unlikely that anyone would do that without seeing the patient. As far as getting an official second opinion, ideally you can ask your original physician for a referral and they will set it up. Yes, because physicians are human some may get offended but most won't. When we were trying to decide about surgery for our daughter the surgeon she saw here was completely behind us going to a children's hospital in a nearby state for another opinion. It probably helped that the place we wanted to go happened to be where he did his peds fellowship so he knew people there. In the end we had the surgery done locally and everything went well but I needed to know that we had really looked at all the options. If you're in a position where the financial cost of travel is a big impediment to getting that second opinion there are some options to make it affordable at least from a flight standpoint with angel flights. Quote Link to comment Share on other sites More sharing options...
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