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Night seizures waking my 13 year old

Good afternoon, Apologies in advance for the lengthy post. I really need help/suggestions/experiences from which to pull. I have a 13 year old who was diagnosed with Epilepsy (focal seizures) February 2013. Around November 2012 she started having weird sensations under her left shoulder blade and would lose sensation in her legs and have an episode where she rolled on the ground or shrugged her shoulder rapidly to make the sensation go away. I thought she was being her normal dramatic teenage self so I didn't think much of it until she told me why she was doing it. I took her to her pediatrician who happened to walk in while the episode was occurring. She was checked over and referred to a neuro. EEG showed frequent spikes middle right side. MRI showed no damage. She was started on Keppra at diagnosis. The Keppra has eliminated the day time episodes but not the night time episodes. As a result, Keppra has been increased to 1250mg twice per day. Neuro is considering adding Lamictal to the mediation regimen. I don't want to increase Keppra anymore since I don't see seizure abatement and just want to add the Lamictal so my daughter can get some relief and much needed sleep. The seizures don't last more than 20 seconds but they happen on average 3 times per night. I have brought her into my room so I can keep an eye on her because I don't want her to get hurt or kick out a wall or window when she rolls around on the floor. She had a grand mal September 2013 and another about 2 weeks ago. [Had to transport to ER in September because she was non-responsive to verbal cues and breathing was shallow (I didn't hear anything which I usually did with her typical seizures)]. In addition to the above, I can't tell if her moodiness is normal teenage moodiness since we just diagnosis at the age where the teenage "rebellion" starts or if it the medication. It is almost as if she purposes to do the opposite of what I tell her. She "forgets" to do chores even though I just told her; she won't for school the night before (i.e. lunch box prep, lay clothes out, pack gym uniform) where she had in the past; she's gotten mouthy. School is not a priority (she was a straight A student and doesn't seem to care now as long as she passes) and school projects get done at the last minute even though she has had weeks in advance to prepare for them (she gets stressed which we have learned is a trigger for her). Any help, suggestions, medication therapies you or your children have undergone would be most appreciated. Her neuro takes my input under consideration and lets me know the pros and cons (i.e. gluten and dairy free diet - neuro said no scientific data shows that GF & DF diets help but there is the ketogenic diet that has been successful. Neuro warned that the Ketogenic is difficult to follow and has drawbacks). (again apologies for long post, this is my first "venting" and "asking for help" post ever and I just want to help my daughter adjust and sleep)

Comments

Re: Night seizures waking my 13 year old

95% of my seizures happened at night. After about a year of trying different meds my doc put me on Dilantin 100mg. After adjusting Dilantin to 4 doses per day I was seizure free for almost 2 years. I went to 5 doses per day and it has worked for me for the last 38 years. I do have a seizure  2 or 3 times a year but I don't think there is a medication that will completely stop seizures. Also, the generic brand would not work for me.  And who knows when the terrible teens will end? I think I still drive my mother nuts at times.

Re: Night seizures waking my 13 year old

Thank you for sharing! I am hopeful, after reading your post, that we will find the right medicine(s) and dosage so that my daughter can have similar results and get some much needed sleep.

Re: Night seizures waking my 13 year old

Be careful with Dilantin. I was to for several years. Have you searched at a
Epilepsy hospital with several inpatient days with EEG equipment and they have ability to
Watch you in dark. I had one for 5 days then sent me with same equipment for
2 days. I have had parisomia behavior at night my whole life until this test. It showed my parisomial or
Seizure preventing me from going into REM sleep (only three minutes a night). I did not get diagnosis until 32 years old. I was able
To get a bachelor and master degree in spite of sleep problem. It took 6 years and a lot of dropped classes my parents paid for
Without me completing. I have always had partial/gen. And on meds. Me and my mom discussed my academic difficulties and had a neuro Educational workup which gave specific needs I would need to maximize my learning. This gave school ways
They HAD to follow to help ME specifically how to learn. I was always an b or c student in 1-12, but got better grades in classes I had an interest (therefore reason for longtime to finish Bach. Always encourage, do not compare siblings and expect them to do homework and the
Best they could do in HS. Just because he is not a high achiever does not me be is limited in his life long life. I know make a three figure income with an assistant I pay myself to help with my needs. Do not LIMIT him. Junior college is fine. I look back and wonder if I was able to get my sleep I order in mid 70's how it may have impacted me. Always stay possitive and search out
Research based ways to treat his condition. If you advocate know he will know how the rest of his life. Up and down is the part of life we all challenge it is the way learn how to adapt that helps. Hope this help from an ep an sleep problem story with success.

Re: Night seizures waking my 13 year old

Appology accepted but it was not needed.

Now accept mine because I sometimes get long winded because I speak from experiance of the person with epilepsy.

The Keppra has eliminated the day time episodes but not the night time episodes. I would say that eliminating some seizures is an improvement. As for inceases or decreases in medications understand what works for one epilepcit may not work for another be it the medication or the dosage.   Adjustine the medications or coupling them with another medication can do  a lot

Dipstick also posted that they adjusted his medication which was dilantin several times and he takes it several times a day. I too was on dilantin and it did work for me also. But there are issues that need to be watched closely with it. I am not saying it is not a good medication. It was one of the best I used but the side effects need to be watched and understand that is was created to clam down the entire central nervious system. Medications today are created to work on types of seizures and they are helping people be more like other people then the older medications did. I say that from experiance because I was on them and I would go to sleep within minutes from getting in the back seat of the car.. 

Keppra is the best medication I have been on and it reduced the number of seizures I was having. It did need adjusting which all medications need from time to time. After being on it for about 10 years Doc (my neuro) suggested wee couple it with another medication. Which we did vimpat was added and my seizure count was reduced. After 3 months period of time and seeing the reduction the vimpat was increased and the seizure count went down again.. 

I will also suggest you get the my epilepsy diary at the top of this page. Watch the video and use the diary the information in it can help your neuro with procedures medications and possiable triggeres.

I hope she gets her medications adjusted and she does get seizure free.

Oh and that is possiable. My cousin started having seizures about that time in her life. I don't know the cause or the type but she was on meds. Now she has been seizure free for many years had been married and has has a wonderful life. Some people grow out of it.

Joe

Re: Night seizures waking my 13 year old

Omg! Pleaselet me share my xperince with my teen and some comments.

-About school. Please be firm BUT please understand her condition. She is having Constant spikes, that means that her brain is unable to focus. The medication helps get the seizure threshold higher, but that doesn't mean that the seizure activity is gone. That means that her ability to concentrate gets hindered. Being organized is very difficult for some with epilpsy, as your memory fails and if you are having seizure activity all day, your brain becomes very tired as seizing takes a lot of energy and your body takes time to recover. . My sons school work sometimes can take forever. Organization is an issue, so my husband came up with a system of writing up his evening and morning routine. Everything is on paper so he has to do his checklist daily, tht includes him coming up with homework priorities. Setting this routine has help us all and also helps his self steem, self sufficiency and independence. It is important for your teen to feel that way. Does the school know bout her condition? Sometimes accommodations need to be made. Talk to the school counselor about a special program for kids to give her more time to turn in assignments and more time for testing if needed.m I can't remember what is called. I think is section 504 program. This is NOT special Ed.

- About Keppra. It is a wonderful medicine for those that can tolerate it. Your daughter is on a high dose, please know there is such thing as the infamous "keppra rage". It is a side effect if you are in a high dose and you cannot tolrerate that dosage. Talk to your neuro as soon as possible because keppra does impact personality negatively in Some. Did the neuro or pharmacist talked to you about this? Adjusting meds and dosages is common for people with epilepsy, so phone the neuro office ASAP , sometimes they can adjust meds over the phone. My son was put on 500 mg of keppra twice daily in the ER. The neuro thought the dose should be 750 mg twice daily, so changed it. I saw his personality changed immediately! He was angry, mouthy, agitated when is the sweetest guy! I did not recognized my son. I talked to the neuro and switched him back to 500 mg twice daily and he went back to his normal self. Google keppra rage to learn more about this.

- gluten free diet is not the way to tacke this. The ketogenic helps difficult to treat epilepsy in children. The ketogenic diet is a modified Atkins diet. Basically more fat. I used to do lean everything in my home, but since then, I have been given my son full milk, butter, fried this nd that. He was sooo skinny and he has gained 20 pounds in 9 months. Not fat, just muscle as he is n athlete. He looks much healthy tht before! Apparently, the brain needs fat and certain vitamins to perform certain functions. That is why the ketogenic works. Also a study was released recently about how I is now scientifically proven that fish oil omega 3 supplements help people with epilepsy by achieving longer remission periods. Also a multivitamin with b12 and magnesium helps normal brain activity. I give my son dha omega 3 daily. He has not had anymore seizures in 9 months when he got his first and only one. I don't follow the ketogenic or Atkins, but do give my son more fat than before. I make sure he eats sufficiently and well.

- about the teenage angst, being 13 is hard and even more so after learning that you have a chronic condition. I still believe that the medication is the culprit of her sudden change is personality, but please know that epilpsy affects self esteem, some become depressed, it also affects social relationships. My son doesn't like it when I m looking after him and worrying about him constantly, it bothers him greatly. I ve tried to back off and relax, and again the list of daily routine has helped is all.

If you have ny questions, email me!

Best wishes

.

Re: Night seizures waking my 13 year old

You understand my plight!!!!!!!!! Thank you. I would like to email you for additional information about everything you posted (especially the school information) but your profile is not public (either that or I don't know how to contact via profile). Please email me at your convenience (I think my profile is public).

Re: Night seizures waking my 13 year old

fugazstereo@yahoo.com , email me! I totally get it and I understand, I can relate! I am more than happy to help :)

Re: Night seizures waking my 13 year old

My daughter is also 13. She was diagnosed with frontal lobe nocturnal epilepsy about 5 years ago. Since then, she's been on many different medications, alone or in combination. In June this year, she was started on Keppra, which hasn't given her any relief from her seizures. She's also on Lamictal, Clobozam and Ritalin (for her ADD). Tomorrow she will begin yet another type of anti-seizure drug called Epival. The Keppra will be gradually phased out.

Today she had a fMRI, following two SPECT exams and 3 nights of EEG monitoring at the hospital last week. We're both exhausted and I feel more alone than ever before. And frightened. I wish the neurologists could give us some answers!

Thank you for any support and information you can give.

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