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Old 06-26-2008, 04:58 PM   #1
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Unhappy Disabled son and seizures

I am writing this on be half of my learning disabled son. He is 23. He was treated for a malignant brain tumor when he was 5 years old. He started having seizures about 2 years ago. He has clonic-tonic and complex partial seizures. The doc says the seizures are due to changes ocurring in his brain from the surgery and radiation treatments. Currently he takes 1000 keppra 2 x a day and 100 topamax in a and 150 topamax pm. We just added lamictal to themix on Monday. He is at the lowest dose of that. It will take 8 weeks to get to the theraputic dose. In the mean time my boy is a walking zombie. He still has 1 to 3 partial seizures a day. Before the seizures he was doing very well in spite of the learning disabilities. He was working part time with the assistance of a job coach and he had a small circle of friends. We were even talking about him moving out into a supported living situation. Now the job coach comes to the house and checks on him and tries to get him out. We are also looking at hiring a personal care person to check on him when we are a work. Is there anyone out there with a similar situation..I would love to hear from you. Also if there is anyone out there on the mix of meds he is on I would love to hear how it makes you feel. He has a hard time expressing hisself, I really don't know how he feels. The doc may want to wean him off topamax once he's at the proper dose of Lamictal. That on't be until the end of August. He also had long term video EEG monitoring and surgery is not an option. I guess I need some words of encouragement at this point. It is very hard to watch your child in this condition.

 
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Old 06-27-2008, 09:30 PM   #2
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Re: Disabled son and seizures

Lori, Similar in my case. I was not even in school when they removed an astrocytoma (star shaped tumor) from the left hemisphear. That was back in 1981.

What alerted us to it was a grouping of seizures lasting for an hour. I believe it was at least 3 GM's (maybe others) that occurred in cluster over the time frame of an hour (I have a few "snapshots" in between so it was NOT one constant seizure).

Anyway, I have been on medications ever since the operation that removed the majority of the growth back then. After school, I moved to the cities and I was in a program that helped people get out on their own, sort of. They lacked the classes and the "structure" for people to attend features if they wanted to. Yet it got me out on my own. It wasn't assisted living or group home environment, but independent, apartment structure. You were as independent or dependent on the program as you wanted to be/needed to be.

Adult support groups are hard to come by. I have found over the years that close friends, are the better resource to draw on. I've had some for over half my life (started online) that I still know, even met their family and Granny!! So yes. Even a few close friends can be a great river of support.

--Travis

 
Old 06-28-2008, 03:42 AM   #3
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Re: Disabled son and seizures

Hey Travis...don't mean to threadjack here, but what an inspirational story. You have been so helpful to so many people here and I just wanted to say thank for all you do to help others.

Didn't mean to interrupt, back to the original poster's question now.

 
Old 06-28-2008, 09:32 AM   #4
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Re: Disabled son and seizures

Thanks Travis! It helps to connect with people that have "been there". Do you still have seizures? What kind of meds do you take?

My son's dream is to live on his own, independently from mom and dad. While there is a breath in my body I will see that happen!

 
Old 06-28-2008, 12:20 PM   #5
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Re: Disabled son and seizures

I'm on Keppra 2625/day; TegXR 1200/day, and Topa 400/day. However remember, EVERY PATIENTS regiment is different. It's not apples to apples.

I've been through the selection of medications in the process. They tried Depakote, Dilantin, Lamictal, Zonegran, Phenobarbital generics. Pretty much the whole gambit of meds over the years. Bad combinations of them, as many as 4 at a time (not fun).

I still have seizures about every 3-4 months it has been. Hopefully I can extend that time line longer.

I think what helped me was I grew UP having seizures, so it was normal to me. I didn't know anything different. Having things strike later in life tends to put people in a tailspin. All of a sudden your entire bubble (world) is now different. It causes more stress on people that they often need to deal with.
I had enough stress and emotional bottle-up in my childhood years in relation to school environment I had to learn to deal with back then.

--Travis

 
Old 06-28-2008, 04:32 PM   #6
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Smile Re: Disabled son and seizures

Thanks again Travis! Looks like my son has a ways to go with meds. He has been on Trileptal, depakote and now topamax, lamictal and keppra. The doc did say his seizures would be hard to treat, we aren't giving up yet. He dealt with all he school stuff as he was 5 when he was treated. The seizures coming along 2 years ago did set him back quite a bit. Thanks for your info, it helps me alot!!

 
Old 06-28-2008, 05:12 PM   #7
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Re: Disabled son and seizures

Yes and no for meds. I was kept on my initial medication combination until I was (making me think) 16? We had played with the Teg a little bit over the years, trying a mid-day dose of one tab, 200mg (that was canceled after 6 months). Then adjusting Pheno here and there (increasing), then slowly dropping Phenobarbital until I was off of it and on Teg only near the end. I even drove for a few years.

So for years I had not encountered a new medication. Then out of the blue the control was lost. They tried adding Dilantin, didn't really work, switched me to TegXR, added Depakote about a year later, then started the rest of the trial and errors. That took YEARS (around 6 I think) until they found what I am on now.

Sometimes you are just lucky and they find it right away. The input from the patient is VERY important my last two doctors old me. The doctors may know what the medication is capable of, but without knowing how the patient is feeling (if any symptoms) they don't have anything do go from for if it is going good or bad for the patient. Your levels may be high, but if you are not feeling anything different, or showing symptoms, why change it.

So I'd say know the symptoms of the medication family members are on so you know what is possible. Education about medication I was/am on became a priority after a doc in the metro put me on a combination that people were to avoid. Ever since then I have read the FULL text about the new medication I was issued or suggested so I knew about it beforehand. This way I know if I am to avoid fruits, other foods, if it can cause symptoms normally what they are, what symptoms are red flag warnings (i.e. when to call the doc) and so on.

--Travis

 
Old 06-29-2008, 05:44 PM   #8
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Smile Re: Disabled son and seizures

Travis,

You are a wealth of information! I assume your tumor was not cancer and you were not treated with anything but surgery at diagnoses? Justin (my son) can only read at a 3rd grade level and his writing skills are even less. He is dependent on us (mom and dad) to help make the decisions. As far as emotional age he is pretty much like a 20 year old I think. One question I do have, Almost all of the seizure meds have tiredness as a side affect. It is hard for me to tell when the drug is making him too tired. Since he still has the partial seizures everyday the tiredness could come from those. Is there anything you can tell me about how you feel and when you know things are not right with your meds? I know this may be difficult to answer, if you can't put it into words I will understand. You have already helped me quite a bit and I truly appreciate it.

 
Old 06-29-2008, 08:19 PM   #9
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Re: Disabled son and seizures

Being tired relating to seizures and meds is a ball of string.

Seizures alone make me tired. So that is one thing to consider. If the person has numerous seizures it MAY make their body exhausted. Often taking a nap after a seizure helps if it was a gran-mal.

Some medications, if the dose if high, CAN make you feel groggy I would say, not tired. Medication interactions (like in my past) caused me to be tired, however I slept more than normal so it was not making sense. Not until I researched the medications and found there was a known interaction (negative) that caused such a symptom.

Keppra for example is a pretty neutral medication when it comes to sleep when used within the dose recommended range. I had problems noticed within two days of the increase above max recommended dose, and I called my Dr to report it. He ignored my report, and I went 6 weeks until I checked myself into the hospital ER and they told me to reduce my dose. The symptoms/problems I felt/had went away within 24 hours.

It is almost impossible to tell from the outside if (how?) a person is being effected by the medication. Their blood levels COULD be an indication (if the levels are on the high side of the range) possibly. That's if the patient has problems communicating.

I could tell something was wrong when I was on generic Dilantin. It "felt" (hard to explain) my levels (amount of drug in my system) were not right. I had a few GM seizures, was brought to the hospital, they pumped me with an IV of Dilantin... Once they wanted to refuse to take me because I "looked" alright after a GM. I insisted they take me. Glad I did. My levels were less then HALF of where they should have been. Thanks to my insurer I had been placed on the generic. I was switched to Brand Name and my problems went away.

I would relate the sensations of knowing how your medication levels feel like to knowing when a person has had too much to drink. You can tell you have alcohol in your system. I could tell my Keppra levels were too high without getting my blood tested, I felt symptoms (mild depression) that I did not have before the increase. With the Dilantin I felt slightly light headed (clearer mind). Other then having problems on the generic before; I didn't totally trust it compared to brand name.

When I switched from Pharmacy 1 to Pharmacy 2 for Tegretol tablet, there was an immediate sensation in my gut (indigestion like), and later that night a headache came on for no reason. The NeXT day on the med I had a light seizure. I switched back to the remaining stock that night of the old pills and we ordered a fill from the old pharmacy and paid cash for it. The new pills were flushed. Two days I shouldn't have problems from a different maker of the same med. THIS was a case of the PILL causing the symptoms.

Hope that helps enlighten my situation a little bit. Don't know if that can help you. An after thought is to watch for (not knowing what's normal) coordination/balance. My balance was WAY off kilter when the Dilantin levels were high.

--Travis

 
Old 06-30-2008, 07:26 AM   #10
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Re: Disabled son and seizures

Thanks again!! At least I have some questions that I can ask Justin. Right now it is hard for him to find his words. Word finding has always been a problem but since he started on Topamax it has become much worse. I'm thinking the dose may be too much although it is not near as high as what I have read it could be. I also blame the tiredness on the Topamax, although he still has partial seizures on it. You see I am driving myself crazy trying to help him.

 
Old 06-30-2008, 10:41 AM   #11
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Re: Disabled son and seizures

Topamax can cause a "fog" on people. Initially with me I had a few seizure like spells where I all of a sudden had a blank slate in my mind. I couldn't remember what I was thinking of, I couldn't find my words. Those happened when I started the uptake of Topamax.

I had that happen on the phone (so verbal) and when composing email. It took a few minutes for recovery and I was back to normal.

Watch out for weight loss on Topa. It can effect the appetite making us think we are not hungry. Also, foods (SOME) taste different. I also noted temperature felt different (as in room temp) and perspiration was almost non existent due to topamax.

I lost stamina for bicycling (so physical exercise) due to topamax. I couldn't do 10 mile runs anymore. I tried pushing myself to a 2 mile run and was exhausted when I was halfway there, I made myself do the entire run. I drained 100oz of water in the process.

However in my case, it has been the best control I have had. I'll take the side effects for control. I can live with that.

It took me a couple of YEARS to fully live with and adapt to these side effects literally. There was no guidebook or help from my clinic. A lot I was finding out on my own, like food AROMA (seafood) triggered my desire to eat. What foods didn't work (some diet soda's YUCK). I found living alone, easy to prep foods worked best in my case (so a lot of pasta!); I didn't like a lot of cooking. Yet that kept me eating.

The other thing I found out with Topa is the standard 3 meals a day was out the window for me. I went to snack meals during the day, and one REAL meal at night. I no longer was losing weight, but maintaining, and gaining back what I lost. However he is not on his own

Don't know if any of that helps in relation to his being on Topa.

--Travis

 
Old 07-01-2008, 05:37 AM   #12
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Re: Disabled son and seizures

OH Wow!! Thanks Travis, I have noticed all of these side affects with Justin. He has lost weight but he had gained 20 pounds on Depakote. I have definetly noticed a difference in his appetite. His stamina is also gone. Back in April he fractured his spine having seizures. This was in the controlled setting of the hospital!! During that hospital visit they started him on topamax. Needless to say this really set him back physically. He is starting physical therapy next week hopefully this can get him moving. The word finding problem is something he already had, it is just more pronounced on the topamax. I think I mentioned before that the plan is to take him off of topamax or reduce it when h. e gets to the theraputic dose of lamictal. I wish he was off of it now, but he can't risk a gran mal because of his back. Thanks for responding to me. I am reading all of this to Justin and it really helps! You have helped him to identify problems he couldn't find words for. This could be better than therapy!

 
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