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DD has taken a bad turn and I am really worried


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This has been going on since before Thanksgiving. I couldn't even bring myself to write about it here b/c I kept hoping she's get better and the seizures would end as suddenly as they started.

 

She has epilepsy, mostly complex partial and absence seizures. I'd say there was good control until last year in the fall where she had a few breakthroughs until one day she had several in a row and ended up being admitted to hosp. Then she seemed to be having one every 3 or 4 weeks in spring and summer and so they increased her med.

 

Early this Nov, she had another med increase but the seizures started again just before Thanksgiving, a few every couple days. SHe got into another bad spot when she started seizing every 1.5 hours or so and ended up admitted again. Her med was at a theraputic level so they added another med. She still keeps seizing, even with both meds and is now having what I think are myclonic seizures in addition to the complex partial. Her arms, shoulders and head snap back but she is conscious. SHe is also having gait issues.

 

She had a normal MRI.

 

She is being admitted to long-term EEG monitoring when it opens after the holidays. She'll be there at least several days. She doesn't know that yet b/c we don't want to ruin her Christmas and New Year's. But she is a mess anyway. She's headache-y, exhausted, losing weight, sleeps all the time, short-term memory loss. Now I think she is also depressed. No, duh, right?

 

Today we tried to go to a movie. She got a massive headache and I had to support her to get her to the car. It's like her legs suddenly flop or something. She couldn't walk straight either.

 

My heart is breaking and I am so scared I sometimes feel like I can't think straight.

 

Why is this happening after all these years of relatively good control? She is well into puberty, so that's not it. She's got no other underlying health issues. She had been getting enough sleep.

 

I just don't get it.

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This has been going on since before Thanksgiving. I couldn't even bring myself to write about it here b/c I kept hoping she's get better and the seizures would end as suddenly as they started.

 

She has epilepsy, mostly complex partial and absence seizures. I'd say there was good control until last year in the fall where she had a few breakthroughs until one day she had several in a row and ended up being admitted to hosp. Then she seemed to be having one every 3 or 4 weeks in spring and summer and so they increased her med.

 

Early this Nov, she had another med increase but the seizures started again just before Thanksgiving, a few every couple days. SHe got into another bad spot when she started seizing every 1.5 hours or so and ended up admitted again. Her med was at a theraputic level so they added another med. She still keeps seizing, even with both meds and is now having what I think are myclonic seizures in addition to the complex partial. Her arms, shoulders and head snap back but she is conscious. SHe is also having gait issues.

 

She had a normal MRI.

 

She is being admitted to long-term EEG monitoring when it opens after the holidays. She'll be there at least several days. She doesn't know that yet b/c we don't want to ruin her Christmas and New Year's. But she is a mess anyway. She's headache-y, exhausted, losing weight, sleeps all the time, short-term memory loss. Now I think she is also depressed. No, duh, right?

 

Today we tried to go to a movie. She got a massive headache and I had to support her to get her to the car. It's like her legs suddenly flop or something. She couldn't walk straight either.

 

My heart is breaking and I am so scared I sometimes feel like I can't think straight.

 

Why is this happening after all these years of relatively good control? She is well into puberty, so that's not it. She's got no other underlying health issues. She had been getting enough sleep.

 

I just don't get it.

 

Oh dear. I am crying for you. I feel your terror....surely they can get answers and solutions soon!

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This has been going on since before Thanksgiving. I couldn't even bring myself to write about it here b/c I kept hoping she's get better and the seizures would end as suddenly as they started.

 

She has epilepsy, mostly complex partial and absence seizures. I'd say there was good control until last year in the fall where she had a few breakthroughs until one day she had several in a row and ended up being admitted to hosp. Then she seemed to be having one every 3 or 4 weeks in spring and summer and so they increased her med.

 

Early this Nov, she had another med increase but the seizures started again just before Thanksgiving, a few every couple days. SHe got into another bad spot when she started seizing every 1.5 hours or so and ended up admitted again. Her med was at a theraputic level so they added another med. She still keeps seizing, even with both meds and is now having what I think are myclonic seizures in addition to the complex partial. Her arms, shoulders and head snap back but she is conscious. SHe is also having gait issues.

 

She had a normal MRI.

 

She is being admitted to long-term EEG monitoring when it opens after the holidays. She'll be there at least several days. She doesn't know that yet b/c we don't want to ruin her Christmas and New Year's. But she is a mess anyway. She's headache-y, exhausted, losing weight, sleeps all the time, short-term memory loss. Now I think she is also depressed. No, duh, right?

 

Today we tried to go to a movie. She got a massive headache and I had to support her to get her to the car. It's like her legs suddenly flop or something. She couldn't walk straight either.

 

My heart is breaking and I am so scared I sometimes feel like I can't think straight.

 

Why is this happening after all these years of relatively good control? She is well into puberty, so that's not it. She's got no other underlying health issues. She had been getting enough sleep.

 

I just don't get it.

 

I am so sorry. :grouphug::grouphug:

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That is heart breaking. I'm so sorry for you all. I can't even begin to imagine how scary this must be for you.

 

When I was doing my research to help my RAD dd, I learned about neuro r feedback. I spoke to a man here in NH who had a lot of experience with this. He had a younger child, although school aged.... I think she was around 8, and her quality of life diminished to a vary bad level due to seizures. I want to say she was in a wheelchair because they were so debilitating but I don't specifically remember. Anyway, when she continued to get worse even with increased meds, he tried neuro feedback for her. She still had seizures and was on meds but she was Abe to improve drastically and lead a normal life. He spoke to me for quite awhile. If you would like to talk to him, please pm me and I'll search for his name.

 

Also, I've done a ton of research on brain disorders because of our injuries. Can you get your dd to take an excellent quality fish oil? It may at least help some and definitely can't hurt. Some people who suffer seizures see a dramatic improvement. Maybe google fish oil and seizures. I know I've read slot about this myself... Trying to prevent seizures because of my concussions.

 

 

I'm so sorry.:grouphug::grouphug::grouphug:

Edited by Denisemomof4
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Is there any chance this is some weird reactions to meds? I know even after being on some for a long time the body will sometimes react differently.

 

If you have not gone to a specialist already, I would make sure you get into one ASAP! I am not saying that you are not going to a good doctor but sometimes no matter how good they are if they don't specialize in something like this there may be something missed.

 

 

I will be in prayer over this situation. I can not imagine how scary this must be :( .

 

:grouphug:

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I was only a teen at the time so I might be missing some major steps in this story, but...

 

My sister has epilepsy. A few years after the onset of puberty she started to spiral out of control. She would end up in the hospital where they would increase her meds and send her home, she would get worse, they would admit her, up her meds and send her home, and on and on.

 

My parents were miserable with the cycle, but didn't know how to break it. Eventually they decided to try taking her to an entirely different team, and they refused to transfer her medical records. The new team had to start from scratch. They discovered that my sister's medications were far too high, and they were the cause of the out of control seizures. They slowly weaned her down, and eventually they were able to get her off of all medication. Basically what they think happened is that her body changed during puberty and the medications that used to help her were no longer needed so they were the cause of the seizures.

 

She is now medication and seizure free.

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So scary. One thing I wanted to add is that if they start adding extra meds that don't make any difference, you may want to get rid of the previous new one before they just start adding more. When my twins were infants they had seizures and while they were trying to figure out how to stop them, they added atavan to the phenobarbitol they were on. That atavan knocked out the dd they gave it to, but there was no change in the frequency or severity of the seizures. They insisted they had to "wean her off" the stuff. I asked why, and they said "if we take her off it too quickly, the seizures could recur." I pointed out that they never stopped, so the med was obviously doing nothing. They took her off. I've heard too many stories about kids on a huge cocktail of meds, with them adding new ones on top of old ones that may not even be doing anything... and then sometimes the side effects start becoming an issue...

 

I hope they find the right meds to get things back under control. :grouphug:

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Where are you? Are you pleased with your neurologist? I started tonic/clonic seizures at age 18 (college induced...pre-med student that stayed up late studying, sorority rush brough it on...6 days of no sleep triggered mine)...the first THREE neurologists only wanted to drug me up...I was on everything! Tegretol, Dilantin, two others....Depakote? I just remember them sending me into a fog and it was sooo hard to concentrate on my studies...I really feel the BEST role for any patient with seizures is to get into the right hands....Semmes Murphey clinics (southeast) had some phenomenal physicians...I have been seizure free for 20 years now...I had a few episodes that were very scary and as a young adult..scared the living daylights out of me...but it also helped me forge a strong faith that has seen me through many a challenge.

 

Rest is her BEST friend right now...make sure she stays hydrated..if she's able to eat, make it high value foods (fresh fruits/vegetables) avoid anything with phenylalanine in it (diet sodas/sweeteners) and try to avoid anything with stimulants (coffee, tea, etc.) anything with preservatives..you want whole foods...high protein stuff...fresher the better...get her into the EEG studies asap..MRI never showed anything with me...the medication itself can trigger seizures...that happened with me...the only thing that was ever abnormal was EEG with sleep studies....

 

Praying for you both!!

 

This is not really funny, but I can look back at it now and see the humor...but my seizures were similar to your daughter throwing her shoulders/head back..always in the morning upon first waking up...I would have my bowl of cereal in my hand and God bless the poor roommate who happened to be walking behind me...my arm/bowl/everything would shoot backwards and cover whoever was in the projectile path...

 

Other times, I would just be walking and for a split second my body lost all signals, so I would fall to the ground like a lump of clay..many thought I was Lucille Ball just trying to catch a laugh...

 

The worst was at a deep seedy truck driving station..I had worked all summer in the Rocky Mountains and my parents were concerned about me driving home on my own, they met me in Denver and thank goodness..the change from living at an altitude of 9k and going down suddenly triggered my worst seizures (grand mal)...my mom's answer to everything was food...she thought it must be because I needed food in me (I was pretty thin that summer and she was always trying to get me to eat)..so the only stop was a greasy spoon at 4 am...(I begged her to just let me sleep, but food was in order)...we go in and you should have seen the faces on these burly truckers..I could not hold a fork, my hand kept jerking, my mom was trying to force eggs down me, my body was going nuts...I think the waitress wanted to cry for me....I learned from that that any trigger could affect me...no sleep/altitude change/stress...hopefully they can find your daughter's trigger and help keep these under control!!

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