Results from dd's neurologist...

[sheryl]

I talked with the neurologist's nurse yesterday, Tuesday and the most recent eeg (sleep deprived) from last week showed a "normal" eeg! Of course we are thrilled.

 

Now because our dd has severe behavioral issues, at times, combined with the "clean" eeg, her neuro. has decreased only slightly one of her meds. She complains EVERYDAY of being sleepy and tired and the decrease in this med should perk her up physically (yesterday, Tuesday night was the first new dose night).......hopefully behaviorally too! ;)

 

Additionally, my dd has been seizure free 1 year...tomorrow, Thursday! :001_smile:

 

Now she is scheduled for a neuropsychological evaluation in the next few weeks.

 

On top of this, she is pre-puberty!!! :confused:

 

Just wanted to let you all know. Sheryl <><

[luna]

Sheryl,

I am so happy to hear your news. Our dd has been seizure free for 8 years, off meds for nearly 6. I still remember the relief of a normal eeg (she had one not that long ago.) Good luck with the change in meds. I pray it brings about the changes you hope for.

[sheryl]

Wonderful for your family. I remember reading some of your previous posts now!

 

Question...which dd is it? And, is the neuro. "still" suggesting eeg's? Both sleep dep and ambul? What seizure type did she have? That is great for your dd and your whole family. YES, it's a sigh of relief and I consider this a true blessing! Sheryl <><

 

 

Sheryl,

I am so happy to hear your news. Our dd has been seizure free for 8 years, off meds for nearly 6. I still remember the relief of a normal eeg (she had one not that long ago.) Good luck with the change in meds. I pray it brings about the changes you hope for.

[Niffercoo]

I'm so happy for your good news!!! We're looking forward to one of those ourselves in a couple of years!! My son has been seizure free since October! 4 months!! I'm so thrilled!

 

At his last check-up with the neuro, she asked me if he was sleeping and eating a lot, I guess to check how he was doing with the meds. I sort of chuckled and said, "Well, he's almost 13 and going through puberty. He's grown 5 inches in the last 7 months, gained 6 pounds, and his voice is nearly as deep as his father's!" I can't tell you if the sleeping and eating are from the meds or from puberty! ;)

 

I hope the neuropsych eval goes well! Austin had one of those a couple of years ago and it was very helpful to me! No LDs but extremely slow processing (along with other information) helped me put his academics into perspective!

[sheryl]

YEA! Wonderful for your son and your family he is seizure free for 4 months! FANTASTIC!!!

 

That is cute how your described your son's changes. I'm sure the changes are a combo of both puberty and meds. My dd started to "really grow" with the onset of her seizure. She is in pre-puberty now and the meds make her extremely hungry, sleepy, tired, etc. They also make her VERY MOODY. The eval will hopefully reveal if her behavioraly issues are strictly med related or behavioral, etc.

 

We are celebrating the 1st clean eeg result Tuesday and her 1 year anniversary Thursday with a milk shake. OK, it's not Disney World...we need to save up our pennies for that! :D

 

So happy for you! Sheryl <><

 

 

 

 

 

I'm so happy for your good news!!! We're looking forward to one of those ourselves in a couple of years!! My son has been seizure free since October! 4 months!! I'm so thrilled!

 

At his last check-up with the neuro, she asked me if he was sleeping and eating a lot, I guess to check how he was doing with the meds. I sort of chuckled and said, "Well, he's almost 13 and going through puberty. He's grown 5 inches in the last 7 months, gained 6 pounds, and his voice is nearly as deep as his father's!" I can't tell you if the sleeping and eating are from the meds or from puberty! ;)

 

I hope the neuropsych eval goes well! Austin had one of those a couple of years ago and it was very helpful to me! No LDs but extremely slow processing (along with other information) helped me put his academics into perspective!

[Niffercoo]

YEA! Wonderful for your son and your family he is seizure free for 4 months! FANTASTIC!!!

 

That is cute how your described your son's changes. I'm sure the changes are a combo of both puberty and meds. My dd started to "really grow" with the onset of her seizure. She is in pre-puberty now and the meds make her extremely hungry, sleepy, tired, etc. They also make her VERY MOODY. The eval will hopefully reveal if her behavioraly issues are strictly med related or behavioral, etc.

 

We are celebrating the 1st clean eeg result Tuesday and her 1 year anniversary Thursday with a milk shake. OK, it's not Disney World...we need to save up our pennies for that! :D

 

So happy for you! Sheryl <><

 

I hope you get the answers you are seeking in the eval!!

 

What is your next step for your daughter with the meds? Our neuro said Austin would be on meds for about 3 years, then we would try to wean him off so he could get his learner's permit.

[luna]

Wonderful for your family. I remember reading some of your previous posts now!

 

Question...which dd is it? And, is the neuro. "still" suggesting eeg's? Both sleep dep and ambul? What seizure type did she have? That is great for your dd and your whole family. YES, it's a sigh of relief and I consider this a true blessing! Sheryl <><

 

Sheryl,

It is my older dd. She has entered puberty and I was so worried the seizures would resume. So far, so good. Her last ambulatory eeg was 1 1/2 years ago. The neuro said she was all set, unless we had other concerns. We had neuropsych testing then, too. She has some learning problems, mainly Executive dysfunction, anxiety and depression. It's a lot, but she is doing well with the counselor she sees. We were told that the learning problems as well as emotional stuff are all typical of children with her seizure type. She had partial seizure, going to generalized. She was on Tegretol and then Carbitrol. It was such a relief to have her off meds. I now wonder if she should be on something for the anxiety, but haven't been able to take that step yet. I haven't been to these boards much lately, so I'm sorry I don't recall your situation. It is such a difficult journey of worry and anxiety for the parents, it is wonderful we can support one another here. Blessings to you all.

[sheryl]

Nifercoo, We were told that she'd probably outgrow her seizures, but in the meantime she would be on meds until puberty...at what point I don't know. She's in pre-puberty now and the rule of thumb is to have 2 clean eeg's in a 2 year period. We were told that she would probably be on meds until before she gets her license, then wean her before hand. If that's the case she will have been on meds for about 7 years. Started at 8 to 16. It will take time to wean off and monitor with all the years of med build up in her body.

 

Luna, Your description sounds very close to my dd. It's interesting to say the least, because now in grade 4 she is having a difficult time recalling information to finsih her schoolwork. One week she'll know what 8x9 is or 81/9 and another week she just won't know. She's always done well until this past fall.

 

Have a good day. Thank you both! Sheryl <><

[luna]

Luna, Your description sounds very close to my dd. It's interesting to say the least, because now in grade 4 she is having a difficult time recalling information to finsih her schoolwork. One week she'll know what 8x9 is or 81/9 and another week she just won't know. She's always done well until this past fall.

<><

 

Sheryl,

That is exactly how my daughter is! I will never forget the neuropsych telling us after the testing "Children with this type of learning problem will often know something one day, and then completely forget it the next."

I was happy to know that it wasn't simply her effort, or lack of it. It started around the same time as your daughter, when work got more complicated. I am still trying to figure out the best way to help her. Repetition, repetition, repetition. She used to want to be a pediatric neurologist, because she adored hers. I can't imagine she'll ever be up to that level of work! Homeschooling is certainly the best thing for her, but she is a challenge every day. I'm sure a good deal of her moodiness is due to her frustration, but it takes all my patience and lots of prayer to stay calm. We are just getting to fractions, and, while she's done some before, she is looking totally lost. I'd love to hear any suggestions.

Thanks,

Katherine

[Niffercoo]

Sheryl,

That is exactly how my daughter is! I will never forget the neuropsych telling us after the testing "Children with this type of learning problem will often know something one day, and then completely forget it the next."

I was happy to know that it wasn't simply her effort, or lack of it. It started around the same time as your daughter, when work got more complicated. I am still trying to figure out the best way to help her. Repetition, repetition, repetition. She used to want to be a pediatric neurologist, because she adored hers. I can't imagine she'll ever be up to that level of work! Homeschooling is certainly the best thing for her, but she is a challenge every day. I'm sure a good deal of her moodiness is due to her frustration, but it takes all my patience and lots of prayer to stay calm. We are just getting to fractions, and, while she's done some before, she is looking totally lost. I'd love to hear any suggestions.

Thanks,

Katherine

 

Austin is the same way as both of you are describing your girls, and I think it's very interesting that they all have a history of seizures. I always chalked it up to part of Austin's ASD, but maybe it's related more to the seizures, or just the neurological quirkiness that makes up his brain.

 

I don't necessarily know anything to 'fix' it, but when he's having one of those days where he can't remember anything, I just stay with him and walk him through each step of whatever he's working on, as if I were teaching it to him for the first time again. It's frustrating enough for him to know he can't remember something he knew the day before!! We just work through it together, knowing that it will be back tomorrow.

 

Before his testing and diagnosis, I spent years being very hard on him because I thought he was lazy and not really trying. I had to spend a lot of time overcoming the damage that I did then. :( He, too, wants to go to college so he can "have a good payday" (meaning a good job), but it's hard to see him able to handle that kind of work. He's a 6th grader and he's not quite halfway through MUS Epsilon (fractions).

[sheryl]

Hi. I didn't see the Katherine earlier....

 

Well, of all subjects math is the one my dd detests! Although back in early fall she was fine with it. I'm telling ya...something in her snapped and she went down hill behaviorally and educationally speaking around Oct.

 

Eventhough she doesn't like math...and on a "bad" day she doesn't do well, but on a "good" day, she calls most (not all) of it, easy! Go figure! :confused:

 

Here's an idea....although I'm sure you've done this with fractions.

 

Do food fractions. Cut a sandwich, banana, graham cracker, string cheese, etc. to fraction off. Saxon math also uses strip overlays, (like MUS).

 

What is you dd's favorite subject. I appreciate your input. I also agree about prayer! We've offered many prayers up to God for our dd and others have done the same. Talk to you soon. Sheryl <><

 

Read about Austin. Niccaroo brought up a point how the common denominator is that they have all been diagnosed with epilepsy.

 

 

Sheryl,

That is exactly how my daughter is! I will never forget the neuropsych telling us after the testing "Children with this type of learning problem will often know something one day, and then completely forget it the next."

I was happy to know that it wasn't simply her effort, or lack of it. It started around the same time as your daughter, when work got more complicated. I am still trying to figure out the best way to help her. Repetition, repetition, repetition. She used to want to be a pediatric neurologist, because she adored hers. I can't imagine she'll ever be up to that level of work! Homeschooling is certainly the best thing for her, but she is a challenge every day. I'm sure a good deal of her moodiness is due to her frustration, but it takes all my patience and lots of prayer to stay calm. We are just getting to fractions, and, while she's done some before, she is looking totally lost. I'd love to hear any suggestions.

Thanks,

Katherine

[sheryl]

I must be having a name issue today...I mispelled yours when referring about your reply to Luna.

 

Yes, I too have been very hard on my dd. That is one reason why she needs to be eval. because her behavior and mine is not productive and out of control. Realizing this is just not typical of "usual" behavior, I decided for the eval. It will be interesting to learn of the results.

 

How do you schedule your year? Do you have yearly goals? Or, do you just not worry about it? I'm torn with what to do and just do not know. My dd has always been on the mark. We started out ahead last August and now we are behind. If we stay behind every year, it could be that in time she may be several years behind. Sheryl <><

 

 

Austin is the same way as both of you are describing your girls, and I think it's very interesting that they all have a history of seizures. I always chalked it up to part of Austin's ASD, but maybe it's related more to the seizures, or just the neurological quirkiness that makes up his brain.

 

I don't necessarily know anything to 'fix' it, but when he's having one of those days where he can't remember anything, I just stay with him and walk him through each step of whatever he's working on, as if I were teaching it to him for the first time again. It's frustrating enough for him to know he can't remember something he knew the day before!! We just work through it together, knowing that it will be back tomorrow.

 

Before his testing and diagnosis, I spent years being very hard on him because I thought he was lazy and not really trying. I had to spend a lot of time overcoming the damage that I did then. :( He, too, wants to go to college so he can "have a good payday" (meaning a good job), but it's hard to see him able to handle that kind of work. He's a 6th grader and he's not quite halfway through MUS Epsilon (fractions).

[Mom22ns]

My ds has been seizure free for 7 yrs and off meds for 5 or 6 now. I can remember the first clear eeg :001_smile:

 

I hope you can continue the progress and that with the changes in meds you can gradually get to a healthier happier child!

:grouphug:

 

Debbie

[Niffercoo]

I must be having a name issue today...I mispelled yours when referring about your reply to Luna.

 

Yes, I too have been very hard on my dd. That is one reason why she needs to be eval. because her behavior and mine is not productive and out of control. Realizing this is just not typical of "usual" behavior, I decided for the eval. It will be interesting to learn of the results.

 

How do you schedule your year? Do you have yearly goals? Or, do you just not worry about it? I'm torn with what to do and just do not know. My dd has always been on the mark. We started out ahead last August and now we are behind. If we stay behind every year, it could be that in time she may be several years behind. Sheryl <><

 

Austin has been slipping behind for years, he just learns at a slower pace and needs more repetition than most kids. I used to set fixed goals, which only frustrated both of us. Now I use the concept of the Zone of Proximal Development. That is the place where learning takes place, where information is neither too easy nor too hard. Too easy and they aren't having to work and learn, too hard and frustration and discouragement take over and interfere with true learning.

 

As you can imagine, this can be quite fluid for a child who wakes up some days not remembering what he knew the day before. It makes it difficult to set goals, but the ultimate goal is for him to really learn and to enjoy learning which can be so hard for a child who struggles. Our main goal is to move forward at a pace that is consistent with his ZPD. I can usually tell when we're out of the zone, because he will break into tears or other visible signs.

 

He is developing a much greater sense of resiliency, so I am carefully extending the zone just a liiiiitle bit, so he can feel what it's like to push through something hard and succeed. But I don't do it very often! It's a balance that only you will be able to determine from knowing your child as well as you do!

[sheryl]

That does truly seem to be the best approach. I have set goals in as much as I look over the curriculum and know how much of each subject we need to finish in a week, in order to finish in an academic year....but with that said, I feel like I'm actually a relaxed homeschooler as I feel there is so much learning in daily living. Also, our schedule is one that is really not overwhelmingly demanding. So.....I'm still baffled.

 

I will just need to go with the ebbs and flows it sounds like you are saying. She did fine until last Aug/Sept/Oct...somewhere around there. Each month has been a little more worse than the preceeding month. I'm still confused how she can understand one day and not the next. With the upcoming eval I'm sure my dh and I will be educated more on this challenge and what we can do to help.

 

Thanks again for your discernment! Appreciated!!! Sheryl

 

Austin has been slipping behind for years, he just learns at a slower pace and needs more repetition than most kids. I used to set fixed goals, which only frustrated both of us. Now I use the concept of the Zone of Proximal Development. That is the place where learning takes place, where information is neither too easy nor too hard. Too easy and they aren't having to work and learn, too hard and frustration and discouragement take over and interfere with true learning.

 

As you can imagine, this can be quite fluid for a child who wakes up some days not remembering what he knew the day before. It makes it difficult to set goals, but the ultimate goal is for him to really learn and to enjoy learning which can be so hard for a child who struggles. Our main goal is to move forward at a pace that is consistent with his ZPD. I can usually tell when we're out of the zone, because he will break into tears or other visible signs.

 

He is developing a much greater sense of resiliency, so I am carefully extending the zone just a liiiiitle bit, so he can feel what it's like to push through something hard and succeed. But I don't do it very often! It's a balance that only you will be able to determine from knowing your child as well as you do!

[luna]

I have never heard of ZPD and will read up on it. My daughter enjoys writing and has a good grasp of grammar. She absolutely hates math. We just started Epsilon today-UGH! It wasn't pleasant. You made a good point about food, Sheryl. She totally got it when I related it to having a pizza, eating 3/4 and saving 1/4 of the eight slices for Daddy. I imagine we'll be eating lots of shared foods over the next few months!

Her behavior has gotten better with Cognitive Behavior Therapy, though lately she has seemed more depressed again. That may be due to less exercise (it's been a very cold winter here) and hormones. Hmmm, I think I'm forgetting something you asked me earlier. Feel free to ask again. I'm tired now and just discovered water leaking in the window-must be an ice **** on the roof. I can't wait for spring!