November 20, 2008,
G.J. asks from Edinburg, TX on November 17, 2008
Advice for 1 Year Old Son Who Has Been Having Seizures Every Night Since 2Months
Jerimiah has been having Grand Mal Seizures everyday since he was 2 months old. He usually gets them right before bed or even while he's sleeping. He sometimes laughs or cries uncontrollably and now he's able to detect right before he's about to have one. He runs to the nearest person so that they can hold him during it. He's had several tests done and has even seen a neurologist. No one has said anything. They can't figure it out. Has anyone gone through this? Do you have any advice? Please, we're desperate...
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So What Happened?™
Well the more I research and read your wonderful responses, the more I strongly think it may be Gelastic Seizures, also known as "Lauging Seizures". I'm gonna start a new post discussion about that and see if anyone has experienced them and knows what we could do.
Thank you everyone for your time, kindness, and especially prayers for little Jerimiah!
K.O. answers from Austin on November 18, 2008
Did you start vaccinations at 2 months? I just wonder if there's a link there. Explore that in conjunction with going to a chiropractor school specifically for babies before getting any more vaccines. Some children are more prone to side effects than others. Blessings to you. This has been such a difficult ride for all of you.
M.L. answers from Houston on November 18, 2008
I had seizures as a child but they started in Elementary and I grew out of them in middle school. What I have learned with my children is that you have to be aggressive with the doctors. Keep pushing until they find out what is going on. Don't take no for an answer. If your doctor won't address your concerns, see someone else. Keep trying until you find a doctor that cares. Doctors tend to blow you off.
Have them do an EEG. He can have a "sleep test" where you stay overnight so they can record when he has one. It is not painful. They just glue (they used Elmers when I was a child) some electrodes to your son's scalp and he sleeps with them on. Of course what I went through was several (cough, cough) years ago so they may have new technology now. I know my parents were scared to death when I had my seizures. It was scary for me too. I took medication for a few years and now I am fine.
The seizures affected my ability to learn because I never got a "good" nights sleep. I woke up exhausted. I know that there can be some long-term complications if seizures are not controlled and treated. Be agressive and find out what is going on.
My prayers are with you.
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C.H. answers from Houston on November 18, 2008
Hi G., wow this sounds very scary for you. Have you considered taking him to a Naturopathic Dr.(ND)? Testing might reveal something as simple as an allergy or other. With the help of my ND I have been able to get off 2 meds which I'd taken for years. ND's use all natural remedies to help the body heal itself rather than pharmaceuticals that control the symptoms. The testing does not involve needles, is simple and pain free. If you want more info, I'll be happy to share. They treat all ages. Peace to you and your family, C.
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P.S. answers from San Antonio on November 18, 2008
I am not a doctor, but I am a mom with a son who has had seizures since third grade. I worked as a medical transcriptionist for 13 years full time and covered neurology sometimes. I know some hospitals will keep a resistant patient overnight and monitor the patient on cameras and with EEG to observe the patient and see if they can gather more information. If you are in San Antonio, I have an outstanding neurologist, well worth waiting in the lounge for three hours to see. I always set aside half a day for his appointments. Dr John Seals. He listens. He educates.
I highly recommend a support group. We went without a support group, thinking it would be inconvenient,maybe intrusive. We made a huge mistake not going. Find one.
Be understanding of the fact you are going to have to be stronger than the typical parent, much much stronger. Why? You will need to be able to stand independent of negative things people say or the conclusions they jump to without asking, and then share with others. Try to not transfer your frustration onto your son or other family members. You will need to be able to label things for what they are and to have integrity towards your self and your son and others. These are some of the hardest parts of having sick children.
On the positive side, having this challenge will force you and your family members to dig deeper into your souls and to deal with the fact you are not all together. Nobody is, but everyone likes the illusion. You won't be able to put out the illusion. This will be a blessing. It will cause you to appreciate things others take for granted. It will lead you to understand love more deeply, or to seek to understand it more deeply because you realize you don't have enough! It will make you a better person.
Remember to take care of your self. I didn't. I regretted it immeasurably later when I myself slipped into disability due to stress.
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H.P. answers from Corpus Christi on November 18, 2008
I would suggest videotaping just prior to the seizure with the correct date/ time on the camera. And DOCUMENT very clearly and precisley what goes on just before the seizure through the postictal state, and how long it takes him to recover. Go through that part of the day. Are you seving things at dinner that may no agree with him? Could it be someting in his toothpaste? There are a lot of variables when it comes to seizures. best of luck I know it can be scary.
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R.M. answers from Houston on November 18, 2008
I am so sorry that your son is going through all of this! I do not have any personal experience with seizures. Some of the advice you are getting sounds very knowledgable. The only thing I can contribute is to tell you that a lady who takes her 4 year old daughter to my chiropractor told me that her daughter had grand mal seizures daily, often multiple times per day since the daughter was an infant. She said that since seeing the chiropractor, her daughters seizures were dramatically reduced. She has been seeing the chiro for almost a year now, and it has been almost 6 months since her daughter had a seizure. The doctor explains it as chiropractic effects the entire neurological system of our bodies. Best of luck to you and your son! I hope you find answers very soon!
E.H. answers from College Station on November 18, 2008
You definitly need to seek a second opinion with another neurologist. Keep trying until you find one who is willing to go the distance to figure out what is going on and how to treat it. In the meantime, you may want to visit the Epilepsy Foundation online (http://www.epilepsyfoundation.org). They have lots of information about seizure disorders and there is also a Parent to Parent e-community.
My daughter was diagnosed with Petit Mals (also known as abscence siezures) when she was 3 years old. I visited the epilepsy foundation website often and it provided me with a lot of information about the disorder, about meds, as well as advice from other parents on how they advocate for their children and how they handle everyday challenges.
Our neurologist was Dr. Crisp at Scott and White in Temple. He and his staff were just great, they worked with us and our pediatrician to get this under control. Fortunately, we were able to wean Frances off of her meds when she was 5 and she has been going nonstop since then without any reoccurrances.
Hang in there!!
J.S. answers from Houston on November 17, 2008
I was going to say go to a Neurologist. We use Dr. Frye at Children's Memorial. His wait list is long. I hope you find an answer soon.
T.V. answers from Austin on November 18, 2008
My heart goes out to you. I have a daughter with epilepsy, she too has grand mals (now called tonic/clonic). These are not the prettiest seizure to witness, but just so you know, they do not feel a thing during the seizure. It's only afterwards that they will feel any pain, like from biting their tongue, or muscle pain. Your son is lucky to have an aura prior to his seizures(sz) so he can let y'all know when one is coming. My daughter doesn't always have an aura. Also, there is sometimes no reason as to why someone develops epilepsy. With my daughter, hers is hereditary.
Seizures during the night are called nocturnal seizures. You can find out more information about these and see if this is what he is experiencing. Also you can find drs in your area at the Epilepsy Foundation.
If he's had an MRI and an EEG done already, then that is good. If the MRI comes back clean, that is good, since an MRI is done to check for any abnormalities in the brain. With an EEG, that will come back clean unless he is having a sz while hooked up to the machine.
Do you keep a journal for him? Just a notebook will do. Write down everything he eats or drinks. Is he getting enough sleep?? Since he's only a year, I'll add to write down tv time as well, just in case. Especially keep track of all this on days he has sz. When he does have a sz. Write down what he did prior to having one, as well as how long the sz lasted and how he was afterwards (post-ictal period). Take this journal with you to all his appointments, it can help his dr possibly find out what is triggering his sz.
Is he on any meds? If so, there is a trial period for up to 6 weeks to see if the meds are working, then 6 more weeks for any dose changes. If he is on meds and needs blood draws to check his levels, make sure to write it all down in his journal. The journal is the best way to keep track of everything to help your child. You are your childs advocate. Keep searching for a dr that will help him. Second or even third opinions are common. Have you tried an epileptologist? These are drs that specialize in epilepsy. I finally have my daughter seeing one.
If you would like to get in contact with me for more info you can email me ____@____.com Just put mamasource in the subject line so I don't delete it. Also, I usually hang out on WebMD.com on the Epilepsy Boards. We are a family there, we help each other out. There are plenty of us moms that have kids with ep. and also people with ep. so we do know what you are going through.