fruitofthewomb Posted September 16, 2014 Share Posted September 16, 2014 My oldest dd is 9 & has a massive infiltrative low grade brain tumor. She had a right temporal lobe resection but has never had any treatment. The tumor is stable & has been for almost 6 years now. There have been no obvious side effects from the tumor-other than persistent seizures. We have tried numerous seizure medications to no avail. They are mild seizures-last 2 min from start to finish. She recovers quickly. I have always noticed behavior issues but recently have concerns about a possible learning disability. It's hard to separate out what could be tumor, seizure med side effects, & true learning issues. Is there anyone else out there who has dealt with seizure meds & can give some anecdotal info? I have talked to her team of doctors about this numerous times but I am really not getting anywhere with them. She is on keppra, lamictal, & vimpat. Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted September 16, 2014 Share Posted September 16, 2014 Ds had seizures when he was little. He was on seizure meds for about 4 years and totally quit having seizures and was able to be weaned from the meds. The seizures definitely caused regression for ds. The meds caused some issues of their own. When you add a tumor and that surgery, I have no idea how you would separate out what is coming from where. I don't think I can offer you an information (even anecdotal) that is useful, but I thought I'd give you a hug anyway. :grouphug: Quote Link to comment Share on other sites More sharing options...
Evan Posted September 16, 2014 Share Posted September 16, 2014 Our six year old daughter is taking Keppra for her seizures. The main issues for her have been appetite problems and weight loss. However, as it is working very well against the seizures, we are very reluctant to change anything. Quote Link to comment Share on other sites More sharing options...
Heathermomster Posted September 16, 2014 Share Posted September 16, 2014 My sister took phenobarb her entire life and that controlled her seizures very well. She was severely handicapped due to spina bifida and suffered all manner of health issue. I'm sorry that I can't be more helpful. Quote Link to comment Share on other sites More sharing options...
twinmami01 Posted September 16, 2014 Share Posted September 16, 2014 My twin boys (now 13) were on seizure meds for 8.5 years. 2 years of that was phenobarbital and 6.5 years on lamictal. My boys started with seizures when they were 10 months old and had seizures up until I took them off the meds (go figure). In their case, the seizures were never controlled. Gosh, I hate even thinking about those days, it literally makes me sick. We ended up taking them off because both were having identical side effects as a result of the lamictal. I just thought it was wierd that they would develop these issues after 6.5 years on the same med. Honestly, it's hard to tell if my boys' learning challenges are a result of the seizures or side affects of the meds. I will say that once we got them off, we had huge academic improvements. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 16, 2014 Share Posted September 16, 2014 Valproic acid caused no problems with our child; brain tumor and seizures did. Quote Link to comment Share on other sites More sharing options...
mommymonster Posted September 16, 2014 Share Posted September 16, 2014 My son has a low-grade JPA. If your daughter's tumor is in the glioma classification, you might want to try asking on the Yahoo Group, LGgliomakids, if you haven't already. If you hate Yahoo, there's a FB page, as well (Pediatric Low Grade Glioma). There is a good bit of discussion in both. I hope you find the answers you need. Just a thought, though: the tumor and its side effects are what they are. You can't get away from them. If the cocktail of seizure medicines is the only one that works, it's probably not negotiable, either. If she's having learning issues, for whatever reason, it might be something that she has to work with. We fought against this for a long time with DS5's neurosurgeon and oncologist. Their point, though, was that nothing in DS's case could change (at the time, surgeries and chemo). We had to manage the issues, as nothing from a medical standpoint could change. If you haven't done neuropsych evals, I would try to get them going and work with what you learn. I'm so very sorry you and your DD have to go through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
fruitofthewomb Posted September 16, 2014 Author Share Posted September 16, 2014 My son has a low-grade JPA. If your daughter's tumor is in the glioma classification, you might want to try asking on the Yahoo Group, LGgliomakids, if you haven't already. If you hate Yahoo, there's a FB page, as well (Pediatric Low Grade Glioma). There is a good bit of discussion in both. I hope you find the answers you need. Just a thought, though: the tumor and its side effects are what they are. You can't get away from them. If the cocktail of seizure medicines is the only one that works, it's probably not negotiable, either. If she's having learning issues, for whatever reason, it might be something that she has to work with. We fought against this for a long time with DS5's neurosurgeon and oncologist. Their point, though, was that nothing in DS's case could change (at the time, surgeries and chemo). We had to manage the issues, as nothing from a medical standpoint could change. If you haven't done neuropsych evals, I would try to get them going and work with what you learn. I'm so very sorry you and your DD have to go through this. :grouphug: I can't bold but 'are what they are' is what I was told by out neurologist. And I know it's true. Taking her off meds isn't an option. But for me-what should my expectation level be for her? Do I approach her as delayed & seek out testing? I don't want to give her a pass but at the same time-if meds make life harder for her shouldn't I make accommodations? Sigh. I just don't know what to do with her sometimes. She did have neuropsych testing 2 years ago. I think we need to do it again. She is older & learning demands have changed. I am in the midst of setting up counseling sessions for her. And debating more testing. Quote Link to comment Share on other sites More sharing options...
mommymonster Posted September 17, 2014 Share Posted September 17, 2014 I can't bold but 'are what they are' is what I was told by out neurologist. And I know it's true. Taking her off meds isn't an option. But for me-what should my expectation level be for her? Do I approach her as delayed & seek out testing? I don't want to give her a pass but at the same time-if meds make life harder for her shouldn't I make accommodations? Sigh. I just don't know what to do with her sometimes. She did have neuropsych testing 2 years ago. I think we need to do it again. She is older & learning demands have changed. I am in the midst of setting up counseling sessions for her. And debating more testing. I think our oncologist was the one who told me things "are what they are." What a frustrating bunch of professionals! (Thank heavens for them, but... frustrating). One thing that I tell myself over and over is to meet my kids where they are. Accept them for who they are, where they are. And yes, if DS5 didn't have a tumor, and chemo, and become malnourished due to vomiting, and all these things, he'd be different. But... he is who he is. And I have to meet him here. I used to think of accommodations as a "pass" -- but I was way, way wrong. I accommodate DS8 because he has real challenges. By accommodating, I let them work at the level at which he is able mentally, without being hindered by things that he can't control (for DS8, it is his hands/writing). That doesn't mean for DS8 that we don't work on handwriting; we do work on remediation. I just have de-coupled handwriting from things like mathematical ability and writing ability. Others can probably speak in a more educated fashion about the options of accommodations. If your DD is having more trouble with school, then yes, unfortunately, I would get her tested again. I'd probably be looking for two things: (i) any changes from the last round of testing; and (ii) recommendations from the neuropsych on how to approach teaching. Well, that's my plan for DS5 this year... Quote Link to comment Share on other sites More sharing options...
fruitofthewomb Posted September 17, 2014 Author Share Posted September 17, 2014 Part of the issue is that my DH thinks that her struggles are bc I am not doing a good job of teaching her-that she is behind bc of me. I try not to take it personally bc I know he is in denial about the whole thing. In his defense-I think I have been in a bit of denial about her educational/behavioral struggles. I think it's time to roll up my sleeves & get busy finding her some help. Quote Link to comment Share on other sites More sharing options...
fruitofthewomb Posted September 17, 2014 Author Share Posted September 17, 2014 Thank you mommy monster for the glioma support group info. I will check into that. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 17, 2014 Share Posted September 17, 2014 A good neuropsych eval might be very helpful. My older dd is on Lamictal and Keppra XR and is doing well. We notice that it is her seizures that cause the learning regression. Sometimes after one it can take hours, days, and sometimes even weeks to get back to where we were. We did try weaning the Lamictal back about 10 years ago..........and she lost ALL ability to read and we had to start over once she went back on the Lamictal. Quote Link to comment Share on other sites More sharing options...
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