Occipital Lobe Epilepsy- Horrible Side Effects of Meds

Kerry - posted on 08/26/2010 ( 16 moms have responded )

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Hi Everyone,

My daughter is 7 months old, and was just diagnosed with Occipital Lobe Epilepsy a month ago. Her seizures are more of the focal kind where her head nods, eyes flutter and roll in the back of her head and her hands twitch. We are truely blessed with an Angel!! Since two months old, she has slept through the night, always smiling, NEVER cried. If she is hungry, tired or needs a new diaper she just fusses a little bit.

After the diagnosis, they started her on Phenobarbitol. Ever since then, she has been getting up 4-5 times a night just screaming! During the day she is so irritable and fussy, and always tired. Shes had 3 seizures (in a month) since being home from the hospital. The Dr mentioned that irregular sleep pattern can bring her type of seizures on, yet the meds they have her on keep her up all through the night, so no wonder shes still having seizures.

They notified me yesterday that they want to add Keppra on top of her Phenobarbitol, and I am so scared of the side effects. I dont want my 7 month old daughter "doped up". They already have to check her liver due to the high dosage of Pheno, and now they want to add a second med into the mix?

I'm new to this and dont know what to do anymore? Any suggestions?

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16 Comments

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Krystina - posted on 03/23/2012

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My GB is 2 months and 2 weeks also had an unusual episode Sunday night (3/11) after sleeping her eyes moved around rapidly and seemed to look at me with a very tired look. Took her to the hospital the next morning where a CT scan/EEG and MRI both came back abnormal she was admitted and diagnosed with Occipital lobe seizures too now she is on Pheno. I've been researching, googling surfing the web just to get familiar with what others are facing and hopes for good news in others keeps me positive somewhat. The babys episodes both (twice before) consisted of rapid eye movement as she was lost, looking to one side, arched back and twitching both eyes, other than that she seems a pretty happy baby. I would like to meet other mothers or GMothers who are having similar experiences and hopefully you can respond I would like to know how your baby's doing..keeping you in my prayers(I BELIEVE IN MIRACLES)

Zoe - posted on 09/03/2010

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Keppra has worked for our youngest daughter who was diagnosed when she was 3 but the side effects were pretty wild we have supplemented vitamin b to minimise the mood swings but all of her big seizures are now gone no more status.

Colleen - posted on 09/02/2010

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My daughter is 5 years old dx at 8months with complex partials from the vision area too. She was started on pheno and trileptal and keppra. We just weaned off keppra added depakote sprinkles and now we are weaning pheno. She only takes at night now. We wean 10 mg every week til she is off. She has more eye contact since we lowered pheno. We are allergic to dilantin you can try that one. We do you live?
Colleen

Vicki - posted on 09/01/2010

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my daughter was dianosed at age 2 1/2. She was also put on phenibarbitol and could have climbed a pine tree.....could not sleep for more than 45 minutes at the time.....we changed her to dilantin and it worked great for 6 years. At age 8 she had Steven Johnsons syndrome where you swell internally. We then put her on tegretol BEST MEDICINE DISCOVERED. She is now 28 and still takes tegretol and is seisure free.

Kimberly - posted on 09/01/2010

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Hi, I understand what you are going through! just know that it is all trial and error when new things arise in life to make a change, however I can see where you may have concerns about certain meds they may suggest! I had my day with my son and his focal seizures which would cause the head drops and forced vocals and trying to find the right med or yes sometimes meds! my child is on topamax,depakote,banzel,and carnitore, so that is the combo that is keeping him seizure free, or is it? seems to be the qeustion up untill they retract meds after being seizure free for 2 years to see if it was meds or simply them outgrowing them on thier own! Good luck to you and your little one, if seizure diagnosed as ediopathic type seizures, then they should be outgrown by of childhood, almost always are as children are always changing chemistry wise, I say almost always because not all seizure types fall into this outcome as much as the partial complex,and focal, generalized seizures,but again if ediopathic type, then this is good! I had my day with the meds too! you are on the right track though ask lots of qeustions about benefit vs. side effect as well as monitor the child when placed on any new meds, this way if undesired side effects happen you report them and express your concerns,and dont be afraid to advocate for your child! if you dont want them on a med you feel is harming them than demand they find one that would have the least side effects, and we went through trying several ones before finding the right combo, and I was against a drug they had him on that made him zombie like and at times felt like it made seizures worse, and that drug was tegretol!!! this may be the one for some but not all, and you will find that is true with most meds, but many people have had issues with that particular med and so we have had nothing but progress with the depakote and topamax! these are pretty popular drugs for treating partial complex, focal seizures, just ask your childs neuro doctor, it cant hurt and if you are not big on medicating there is the ketagenic diet which is wonderful for seizure control, fish oil is very beneficial for nature path, but again these things would be good to talk with your doctor about. The keppra I have heard has a rep of undesirable side effects, but that was the people I have spoke with and what they say was the case with them, also I cant believe they even still treat with phenobarb and for babies at that? that is one drug that couldn't hurt to ask them to change! and you are right about your concerns, and you let the doctor know what they are, you know whats best for baby! we have been there too, and you are not going through anything that any parent in your shoes hasn't, so hang in there it is all so new, but you will figure it out and your child will out grow the seizures, and there are products you can get online that will help with head drops that are made from the stuff the astronaut's use, its great for when they sit at the table to eat or at school to do work, it keeps them from hitting thier heads on the hard surface when they have a head drops! any thing I can do to help let me know! My husband and I are almost veterans at this thing! almost{lol} God bless.

Gwen - posted on 08/31/2010

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I am opposed to Phenobarbitol-it has tooooo many side effects that outweigh the benefits-there are several meds that will control her seizures with far lss side effects and keppra is one of them-especially with her seizures not being grand mall-my daughter was on keppra and lamictal together and they work great-she is 14- atrted having seizures at birth- brain surgery at 7 and pheno was the first med it is lousy-they tried it again- no!

Kim - posted on 08/30/2010

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Kerry-
I you must be feeling overwhelmed right now. My son was diagnosed as an infant too and was on phenobarb for several months. He was also the best baby you could have asked for. I wish I had known to ask more questions, especially when it came to the side effects of such strong medications on a developing brain. Trust yourself, question everything, and find support in other parents who have been through a similar situation. My son is 16 now and does have learning challenges due to his history. But he is seizure free for a year and a half now and was on the honor roll last year....anything is possible. Good luck to you~ Kim

Wanda - posted on 08/30/2010

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There are so many medications out there, and none recommended for infants. You have to weigh the good with the bad. Phenabarbitol made me son very irritable after 100mg. You are your childs only advocate so voice your concerns to your MD, maybe they can try something else. Good luck!

Kelly - posted on 08/30/2010

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My first child a daughter has epilepsy. She is now 23. She was deemed med resistant years ago which equates to, although she is medicated her seizures are not under control. My daughter has been on every med and every combination. It is heart breaking to have to medicate a child. With your daughter being so young if you can get the seizures under control it may help by off setting damage to her development which can be caused by seizures. Where do you live? I know a wonderful paediatric neurologist. If you have a good neurologist have faith that a good drug combination can be found. Side effects are not nice but they pass. Are you on facebook? My name is Kelly Vance-Rankin I live in Stirling Ontario.

KARI - posted on 08/29/2010

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I am just sad to hear these stories, but also relieved to hear that this is not only happening to our family. Our daughter Kalee is 9.5 years old and has been diagnosed with cerebral palsey, epilepsy, cyclical vomiting syndrome and sever mental retardation. She has seizures most of the time when she is sleeping, but most recently they have been while awake. They dont last very long and they really are not the seizure you would think to see. It is a scary thing to watch your child go through this to see the look of being so scared and being so helpless. As far as medications go these are scary to start, i always feel like she is going to get one of the many side effects, or she is going to getting to much medication in her little body. What we as parents realized we need to be the voice of these children! Make sure you ask questions, no question is a stupid question, and TRY the meds, if they dont work thats ok tell the doctors the effects your child had on them and go to the next alternative. I love our daughter she is something that was sent to us from heaven. I wouldnt change anything about her, for some reason she was given to us to care for and we are going to do the best we can do!

Kari

Renee - posted on 08/29/2010

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i started my meds at 8 months.She'll get used to them and not feel so dopey when therapuetic levels are right.i have a very high nfor meds from being used to strong seizure drugs all my life.i have surgery controlled Temporal lobe epilepsy
CBC with liver function tests are necessary to be safe and keep her healthy.She won't know any different growing up with them and will be a pro by 7 or 8.They didn't faze me or make me cry by 10.
The one med to avoid is depakote not good for girls.

feel free to contact me if you'd like

Meg - posted on 08/29/2010

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hi
my son has occipital epilepsy,he was diagnosed at a year old, he is now 6 his seizures are caused by exhaustion, dehydration and high temperatures.. i understand where your coming from regardin the medication i was the same.. his 1st one made him sleepy 20mins after taking it which wasnt good as he got it 3 times a day, his 2nd one caused him to be very irritated and even violent at times.. he is now on the keppra medicine i must admit its been the best one, he has no side effects and it has completely controlled his seizures, he has went from 4 to 5 a week to only 1 every 4 to 5 months,, u should give it a go, i swear buy it.. good luck xx

Carrie - posted on 08/29/2010

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My daughter has this too. She is on the generic of Keppra called Levicetraxacam. It is really a great drug and has the least sideeffects. You have to watch the dose and her out growing it. Carlee kept gaining weight because she is 3 and out growing it...now it's leveled off and she hasn't had a Seizure in 3 months...she still has the fluttering eye lids. Carlee developed photosensitivity and photophobia so I took her to the Moran Eye Center in Salt Lake City there is a doctor named Kathleen Degrie. She is one of the leading doctors in the treatment of this...she uses the FL-41 lens. It has helped so much for her to wear glasses with the FL-41.
my email is c4barkers@comcast.net....I'd love to help if I can. I know how scarry this is and lonely you feel.

Shelly - posted on 08/28/2010

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If your daughter is "doped up" she may be taking too much or too little medication. Med levels can fluctuate as your child grows and some illnesses cause levels to go up or down. You know what is "normal" for your child. My daughter has been on probably a dozen different meds in her life-she is 29 now and she has fewer seizures than she has ever had. She now has less than 3 a month. The blood level checks are very important and can let the dr's know if her liver-and other organs are being damaged by the meds. If they think the meds are doing damage-they may change her meds to different ones or to different dosage amounts, sometimes it takes several tries to find out which combination of drugs works best. Tell the doctor about anything that is not "normal" for your child. You know her best and they are there to help make her life as normal as possible. That should be your goal. You want a happy child. Many people live with epilepsy and have mostly normal lives, with a few interruptions from seizures. Trust your doctor and if you don't-find a better one. I pray for my daughters that God will guide them to do what is best for my daughter(-I am not a doctor and know that I cannot "fix" her). If her doctor doesn't answer your your questions find one who does. Specialists can help you find the best treatment for your daughter. Get a second opinion if you are not satisfied with your Dr. You should be confident that you are doing all you can for your daughter you are her advocate and need to be informed about whatever you can learn about epilepsy. Talk to other parents who have been through it and they can help you feel better about what you are going through I know I've been there for 29 years and my daughter is doing the best she has in all her life. Each child is different and they all have unique experiences so no two cases are the same. You know your child and you can help her through this. Learn all you can and you will be more comfortable with the situation.

Brandee - posted on 08/27/2010

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Oh Kerry - When I hear stories like yours my heart sinks...We were in your shoes less than two years ago. When they added Keppra my son's seizures did get better (for a bit) but we could not handle the mood swings, sleeplessness, drowsiness, and irritability. Medication can be successful for many epileptics, but Phenabarb is heavy duty and Keppra has horrible side effects for little ones. If you can do anything for your child it is to learn more about everything, take it all in, and ask questions. We tried almost 10 different medicines over an 18 month span and they failed. We found an epilepsy center(not every pediatric neuro is the same) and surgery was the best option for us. Our son is living medicine and seizure free at 2 years old. Don't be afraid to seek some second opinions, the beginning years are so crucial and seizures keep our kiddos from developing to their highest potential. Quality of life is important. Hang in there and good luck finding the right answers for you! - Brandee

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