Proud parent of child taking val proic acid seeking insight and experiences

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Hello there! I'm a proud mother of a bright and happy 11 year old who was diagnosed with epilepsy around 5, 6 years old. The first medication choice was tegratol which she had an allergic reaction to, then we started val proic acid and she's been on it ever since and it works great in regard to controlling seizures. Unfortunately I grew weary of the neurologist who we were dealing with, I felt unaware if so much and she even neglected to inform me and set up blood tests every 6 months for my child while on thus medication. I didn't know much that omg ago but I self educated, spoke to many parents, my doctor... and finally decided I wanted a new neurologist. And I got one, he wasn't impressed with how my daughter was cared for and said they are thorough, so far they have been and I feel my child is in better hands! Now when your child starts a medication this young and has to remain on it for years you start to wonder about behavioural, social and academic struggles, could the medication be contributing to these challenges? Then you think maybe my child would have been completely different if we never had to start this, if they never had a seizure, because they've started these meds at such a young and impressionable age, in such a delicate developmental stage who knows if this is truly there personality and these struggles are meant to be happening to such a degree! There's rarely an answer why and they most kids grow out of it by 18 and if they haven't by then, they probably won't. But as a parent we worry and cry when the truth is these things are manageable and when you find what's right for you, life isn't any different, as long as other aspects aren't being affected that are negatively affecting other aspects of daily life. That's the challenge with my daughter. She is extremely dependent, quite emotional and has memory retention and concentration issues as well as social struggles. What bothers me is she starts a brain medication so young I can't say for sure this is the challenges she was meant to over come or without the meds she'd be a different kid and struggle less. Don't get my wrong she's happy and she's funny, creative and kind but we have food days and bad. She was recently diagnosed with adhd as well but as a parent am I in denial about the medications long term affects, who knows! But with a new neurologist by our side, blood work and more tests we are going to see what happens! He's put me at ease and is very thorough. As a parent i know what it's like to feel hopeless and to beat your self up, why didn't I see it sooner why didn't I notice the struggles, why weren't they so big as they are now... we all do it but I find when parents band together and support each other the possibilities are endless!!! We aren't asking for medical advice, we ask for an ear , a shoulder and maybe a kind word or two. I am raising a beautiful child with epilepsy and adhd, with a learning disability, and I now know I'm or alone, I was given this child for a reason, because I am smart, strong and loving, because I have the strength to advocate for my child and set her up for success! Her brilliant mind and big heart are what motivates me! So that's my story and I would love to hear anyones experiences and stories with val proic acid, especially parents. Thank you!!!

Comments

Hi Pscd,I'm a parent of an

Submitted by Amy Jo on Tue, 2017-10-10 - 23:18

Hi Pscd,I'm a parent of an almost 11yo, started this journey about five years ago. I don't spend a lot of time on what ifs - because that is not helpful. I care more about what do I need to know about the situation now and what do I need to learn about so going forward I can make better choices. If you have not already due to the ADHD, I would recommend that you get neuropsych testing done to identify your child's challenges and strengths. Everyone has challenges and strengths to differing degrees, with or without medication. Then you can establish a baseline of what's happening now and a plan to address issues that are raised. I asked for neuropsych testing early to see if I could know if medication had an impact. But I know from our experiences that uncontrolled seizures (and seizure related activity) also have a huge impact on cognition. Some meds have impact on cognition than others but it is a different response for everyone. There are a lot of comorbidities with epilepsy. A lot of docs gloss over those but those also can really impact your child's issues/needs. If your child has sleep issues, consider getting a sleep study to rule out some complicating issues. Our child has disrupted sleep, just part of the epilepsy but the apnea is below the threshold for treatment. Poor sleep contributes to poor seizure control and other issues. If your child hasn't had an overnight EEG in a while, you might consider asking for that (maybe ambulatory EEG) to make sure that isn't contributing to the problems - seizure activity can cause adhd like issues. (A sleep study includes an EEG portion but it may be that not as many leads are used)Our current approach is to build independence. We see a psychologist for dealing with anxiety/pain issues (different condition) but it probably has a more positive effect on helping her cope with her day to day issues that are related to the epilepsy. Anxiety was higher than normal before seizures started but when seizures are occurring it is off the charts. Plus some common seizure triggers are stress (good stress/surprises and any negative stress). To help with anxiety we are helping our child practice all sorts of communication with people to learn some of those social skills (thus reducing her anxiety), it's definitely outside our child's comfort zone. We have other independence/anxiety related goals so that 6th grade camp won't be a problem in a year.If you are going to keep posting, please break up very long paragraphs into digestible chunks, otherwise a reader's eyes start to glaze over with tl;dr syndrome - a downside of the internet age is reduced attention span :)

Hi Pscd,I'm a parent of an almost 11yo, started this journey about five years ago. I don't spend a lot of time on what ifs - because that is not helpful. I care more about what do I need to know about the situation now and what do I need to learn about so going forward I can make better choices. If you have not already due to the ADHD, I would recommend that you get neuropsych testing done to identify your child's challenges and strengths. Everyone has challenges and strengths to differing degrees, with or without medication. Then you can establish a baseline of what's happening now and a plan to address issues that are raised. I asked for neuropsych testing early to see if I could know if medication had an impact. But I know from our experiences that uncontrolled seizures (and seizure related activity) also have a huge impact on cognition. Some meds have  impact on cognition than others but it is a different response for everyone. There are a lot of comorbidities with epilepsy. A lot of docs gloss over those but those also can really impact your child's issues/needs. If your child has sleep issues, consider getting a sleep study to rule out some complicating issues. Our child has disrupted sleep, just part of the epilepsy but the apnea is below the threshold for treatment. Poor sleep contributes to poor seizure control and other issues. If your child hasn't had an overnight EEG in a while, you might consider asking for that (maybe ambulatory EEG) to make sure that isn't contributing to the problems - seizure activity can cause adhd like issues. (A sleep study includes an EEG portion but it may be that not as many leads are used)Our current approach is to build independence. We see a psychologist for dealing with anxiety/pain issues (different condition) but it probably has a more positive effect on helping her cope with her day to day issues that are related to the epilepsy. Anxiety was higher than normal before seizures started but when seizures are occurring it is off the charts. Plus some common seizure triggers are stress (good stress/surprises and any negative stress). To help with anxiety we are helping our child practice all sorts of communication with people to learn some of those social skills (thus reducing her anxiety), it's definitely outside our child's comfort zone. We have other independence/anxiety related goals so that 6th grade camp won't be a problem in a year.If you are going to keep posting, please break up very long paragraphs into digestible chunks, otherwise a reader's eyes start to glaze over with tl;dr syndrome - a downside of the internet age is reduced attention span :)

Hi Pscd,I'm a parent of an almost 11yo, started this journey about five years ago. I don't spend a lot of time on what ifs - because that is not helpful. I care more about what do I need to know about the situation now and what do I need to learn about so going forward I can make better choices. If you have not already due to the ADHD, I would recommend that you get neuropsych testing done to identify your child's challenges and strengths. Everyone has challenges and strengths to differing degrees, with or without medication. Then you can establish a baseline of what's happening now and a plan to address issues that are raised. I asked for neuropsych testing early to see if I could know if medication had an impact. But I know from our experiences that uncontrolled seizures (and seizure related activity) also have a huge impact on cognition. Some meds have impact on cognition than others but it is a different response for everyone. There are a lot of comorbidities with epilepsy. A lot of docs gloss over those but those also can really impact your child's issues/needs. If your child has sleep issues, consider getting a sleep study to rule out some complicating issues. Our child has disrupted sleep, just part of the epilepsy but the apnea is below the threshold for treatment. Poor sleep contributes to poor seizure control and other issues. If your child hasn't had an overnight EEG in a while, you might consider asking for that (maybe ambulatory EEG) to make sure that isn't contributing to the problems - seizure activity can cause adhd like issues. (A sleep study includes an EEG portion but it may be that not as many leads are used)Our current approach is to build independence. We see a psychologist for dealing with anxiety/pain issues (different condition) but it probably has a more positive effect on helping her cope with her day to day issues that are related to the epilepsy. Anxiety was higher than normal before seizures started but when seizures are occurring it is off the charts. Plus some common seizure triggers are stress (good stress/surprises and any negative stress). To help with anxiety we are helping our child practice all sorts of communication with people to learn some of those social skills (thus reducing her anxiety), it's definitely outside our child's comfort zone. We have other independence/anxiety related goals so that 6th grade camp won't be a problem in a year.If you are going to keep posting, please break up very long paragraphs into digestible chunks, otherwise a reader's eyes start to glaze over with tl;dr syndrome - a downside of the internet age is reduced attention span :)

Proud parent of child taking val proic acid seeking insight and experiences

Comments

Hi Pscd,I'm a parent of an

Submitted by Amy Jo on Tue, 2017-10-10 - 23:18

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