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DD has taken a bad turn and I am really worried

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I'm so sorry. You might want to consider the ketogenic diet. When ds was in a bad stretch, that diet and Keppra were the 2 things that pulled him out. Later on, adding the VNS was another layer of treatment that really helped.


My son also has a Vagus Nerve Stimulator (VNS). He has had it for 6 years. I think it has made a difference. I also know several people who have had success with surgery.


My heart really goes out to you. I know how scary it is when seizures aren't being controlled well. Seeing a child deteriorate in front of your eyes is awful. I am hoping your doctors find a good solution and that this season will end soon.


Please keep us updated. :grouphug:


God Bless,

Elise in NC

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Have you changed the lighting in any way in your home? With my epilepsy, fluorescent lights trigger seizures for me, and my photosensitivity has gotten worse as I've gotten older. I have fewer seizures, but fifteen minutes in the grocery store and I'm having auras. Could there be something else environmental that is triggering this?

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I second whoever mentioned the ketogenic diet - my kid's neuro, Chez, used this for patients who did not or no longer responded to meds.


My one son still on meds (he is 20, been on meds 15 years now) has to be ABOVE therapuetic levels to function w/oi seizure activity. He takes Depakote, also Carnitor to protect the liver.


Good luck! Hope the docs can find a way to help your kidlet!


PS _ I might add - my son also has autism, and would in no way cooperate and eat/drink the ketogenic diet. He is too rigid in what he will permit to pass his (tightly closed) lips.

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I hope you find an answer. It's hard to find just the right balance of medication to keep epilepsy under control. Mine was at it's absolute worst from ages 17-19 (when I was in full-blown puberty-I was a VERY late bloomer hormonally speaking). Hopefully the study will turn something up.



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Thanks so much for all the support and for all the ideas. It means so much to me. :grouphug:


She had 2 seizures last night after I posted. I want to change places with her. I want her to feel better and be her happy self again.


I don't remember all the questions but she does go to a pediatric neurology practice in a children's hosp. It is a pretty big practice and all the docs seem to consult each other. SHe's actually seen 2 other docs besides hers when she's been in the hosp.


She eats NO artificial sweeteners.


About the lights: we've had the small florescent bulbs since they came on the market, probably 10 years now?


I've asked repeatedly if the new med could be causing the seizures and have been told no.


And she has had multiple EEGs, not just MRIs. The EEGs always show the same seizure pattern. I wonder what will happen/what the long term monitoring will show?


I might not be around today but please know how much every reply means to me.


Love you ladies!!!!

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I am so very sorry for your daughter -- and you! My 18 year old also suffers from severe neurological issues that we can't seem to get a handle on. I have seen her change from the always happy, smiling girl to a much more serious, always in pain, young lady. I've brought her to many neurological specialists, with no answers/help. She has very strangley suffered from two concussions in the past three weeks, which hasn't helped.


She is starting on the paleo diet next week -- very similar to the ketogenic diet. I've read a lot of good things about this diet.


Although my daughter doesn't have seizures, both of her grandfathers plus my sister have all suffered from seizures. Both grandfathers suffered the most during their older teen years, and then mostly outgrew them. My daughter's problems began at around 15 or 16. Perhaps puberty does have to do with it getting worse, for your daughter as well? I don't know her age.


Praying for you both!!

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I hope you are able to find some answers soon, so your dd can start feeling better. I'm so sorry that she feels so lousy, and I wish you would get some positive information from the doctors so you can stop worrying. It's horrible to worry and wonder, because even though you try to be optimistic, it's hard to keep a good attitude when you're not getting the answers you want and need.

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My dd has a refractory seizure disorder and she is going through a rough time right now too...and has most recently started losing bladder control during some of her seizures :crying: meds seems to do nothing, keto diet didn't work, wasn't a candidate for surgery, VNS did not appeal to us after researching it, and they seem to have no other options for us at this point. it makes me sad beyond words...I know your concern, fears, and pain all too well. my heart goes out to you and your dd and I pray you find solutions. :grouphug::grouphug:

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When ds was put on tegretol, his seizures increased. The Dr said it wasn't the med, but I pitched a fit and we pulled him off anyways. The seizures went back down. Go with your gut.


Yes, go with your gut. As I said in my other post, I had to really pitch a fit to have them take my dd off the atavan (and wouldn't let them go near my other dd with the stuff). For us, tegretol ended up being the miracle drug - it stopped their seizures even at a sub-therapeutic dose when the other stuff wouldn't touch it (they were seizing every 1/2 - 1 1/2 hrs at that point). But that just goes to show how incredibly differently the meds work in each individual. The same drug can really help one person, be neutral in a second, and and actually be harmful in a third. I'd say, if the new med isn't helping, then take her off - it's either neutral or harmful, and either way, then why be on it?

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Could it be that the meds are TOO HIGH? With our daughter, once she was well into puberty (like started her cycle 2 years or so before) she needed her med levels lower--both a lower dose as well as a lower blood level.


I know how hard this is. My daughter has seizure like episodes where she looses academic functioning for hours, to days or more and looses her speech fluency (which can last for months).


Have they tested her for mitochondrial disorders at all? Those can cause flare ups and make seizures, etc. worse.

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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.


What happened at that point in time that was different from before?


-Medication change?

-External illness (especially a virus such as strep)

-Growth spurt?

-Change in toiletries? (yes, this will change how medications work, believe it or not...)

-Carpets get cleaned?

-Walls get painted?

-Any home repairs?

-Any landscaping?

-Fall cleaning? (stuff put airborne)

-Different car?


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.


Exactly what medications and what doses?


In what cortex(es) do her seizures reside?


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.


Therapeutic level of what? It depends on the medication. A "therapeutic level" of Lamictal, for example, is there to tell the doctor if the patient is taking their medication; it is not indicative of whether or not the patient is taking the right dose for their condition. I'm at a "therapeutic level" of Lamictal at a whopping 50 mg. My seizures don't stop until 300 mg. Additionally, what many people don't realize is that, counter to intuition, a large number of medications require higher doses for pediatrics than they do for adults. This is because peds process them more quickly due to more efficient livers, kidneys, etc.


What was the "other" med they added? Also - she didn't happen to have taken any other medicine - like an over the counter cold medicine - the day she had that head snap back episode, did she? The combination of pseudoephedrine or any serotonin reuptake inhibitor (even a "natural" one like St. John's Wort or Sam-E) and a pre-existing seizure disorder can bring forth a wicked tonic-clonic seizure like the one described.


Gait issues can be either medication induced or brain problem induced.


She had a normal MRI.


Irrelevant. I've been told I have "the most beautiful brain" on MRI. No structural abnormalities of any kind. Nope. All electric. Electrical problems don't show up.


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?


Every last one of those is a standard side effect of seizures.


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.


The new Twilight movie?


Why is this happening after all these years of relatively good control?


Because illnesses progress. We try to stay ahead of them with diet, lifestyle, and medication, but time marches on. Rare is the individual whose illness remains in stasis.


She is well into puberty, so that's not it. She's got no other underlying health issues. She had been getting enough sleep


Not necessarily. A woman continues to grow up until she is 25. If she has a disorder of any kind, her puberty can be interrupted at various points and can be prolonged practically indefinitely. Endocrinology is downright fascinating/frightening on this point. In fact, you may wish to be consulting both an endo AND a neuro who will work in concert at this juncture.


The "slump" seizures are called "atonic" seizures. They are when a person's bones kind of go to jello. It is a failure of the brain to tell the body to remain standing/sitting, etc. e.g. "Tonic". They are also quite dangerous because, when one's brain forgets to tell one's body to even stay upright, it tends to forget to tell it to perform other autonomic functions such as breathing. The only time *I* ever experienced atonic seizures was when I was completely, utterly overmedicated.


Artificial sweeteners are no longer as easy to find as they once were. Sucralose is being put in almost everything. It is in the back of "sugar free" canned fruit now. You would be amazed.


I agree with Liberty - it is probably time to start from scratch. But you don't have to worry about that - when she goes in for her video EEG, they will be doing exactly that. They will remove her from her meds to read her brain waves. They can take her off of her meds because she will be in a hospital setting, and if there is an emergency, they can give her instant knock out meds that you normally would not have (unless you have suppositories at home).


One thing to steel yourself for: if things are really bad, they may put her in a short medication coma until they decide what to do. It's rare, but it does happen.


I'm not on the 'net much these days due to some other things going on, but I think I've covered most of the bases here. If you write what medications she is on, the other moms here can chime in. Also, the medsite crazymeds dot us has updated their med pages (even though they aren't for pediatrics, the actual medication info is good) and should be able to give you some info that is the "real lowdown" regarding side effects.




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When ds was put on tegretol, his seizures increased. The Dr said it wasn't the med, but I pitched a fit and we pulled him off anyways. The seizures went back down. Go with your gut.



:grouphug: If you are really suspicious of a new medication, I think you should stand your ground. We have our mama instincts and I have learned to take mine very seriously.

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