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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!

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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.

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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.

1 mom found this helpful

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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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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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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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!

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!!

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.

Hi G.,

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.

http://www.epilepsyfoundation.org/

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.

T.

G.,

I don't have a clue about seizures so I really don't have any advice. Your question got me curious however and I looked some stuff up on line. I came across this website http://www.epilepsy.ca/eng/content/types.html that was filled with lots of information about what seizures are and different types. It may not help to diagnose your sweet baby but it might help you on your path to finding out what's wrong.

Good luck and I'm thinking about you.

Hi G.. I just saw a neurologist from Tyler for a condition that no one could figure out for over a year. I live in Winnsboro,Texas and this neurologist is wonderful. Where are you at?
____@____.com
C.

G., my heart goes out to you. I cannot imagine the suffering that your child and your family must be going through. You will be in my families prayers.
I don't have any other suggestions than to seek a second opinion and also to look up Mystery Diagnosis from the Discovery Channel. It is a very good television show on the Discovery Channel that chronicles a real persons struggle through mysterious diseases that have often been misdiagnosed before coming to a conclusion and very often coming to the right treatment. I believe that you can research past episodes online. You may find something similar to your child's medical problem. Also, try going online to search for his symptoms, and or post comments and questions about his condition to see if you get hits from other people who have been through the same thing you all are going through. I am not that computer savvy but, I know that there are people who do this and have luck finding out medical info., and even find organ donors this way. If you are not that computer or internet savvy, then find a friend or family member who is. I hope that I have been able to give you some ideas to help in your search for your babies diagnosis.
God bless you and your baby and God speed.
L.

Hi G.,

I am Sorry I have no advice for you. I just wanted to wish you luck and tell you I will keep your baby in my Prayers. I will pray for you all to find help and a cure for him. Best of luck and be patient. May God Bless you all especially your little one.

OMG, you poor woman...and your poor baby boy...is he taking meds and what have they said spurs them....My little boy was turning 2....one weeke before he turned two, he had 4 siezures in one 24 hour period...we went to the hospital and we found that it was fever seizures...I will keep you and your son in my prayers..It is soo scary, but just have faith that he will be okay and things happen for a reason...There might be something else and it will appear with time..Be strong and it will better soon....

Hi G.,
My dad is Dr. Crisp, a neurologist at Scott and White in Temple. Someone in an earlier post mentioned him and I would be happy to see if I could get you some information, or see what he can do to get you an appointment. Please email me if you like at ____@____.com and I will put you in touch with him. He is not only a great dad, but a wonderful doctor. My thoughts are with you!
K.

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.

Seizures can sometimes be due to metabolic disorders. One easy thing to do is ask your Pediatrician if all metabolic testing has been done on him. I know, until 2006, TX did not have as extensive New Born Screenings as some other states and I don't know what they've added, but it couldn't hurt to go this route. I've heard of 10 yr old children getting NBS and finding metabolic disorders that may not have been tested for at the time of their birth. Ask your Dr. if there are more you can have done.

First of all, I am sorry for the trauma your son and family are going through. Please know that your family will be in my thoughts and prayers. Please get a second opinion. Dr. Penn with Texas Children's Pediatrics is awesome. He will give your son the care he needs. If the Neurologist is booked up; let him know ~ he will pull strings. My niece had a very bad seizure about 1 1/2 years ago (She was 7 at the time) and he made sure she was taken care of. My sister-in-law was getting the run around w/the Neurologist and he stepped in and she was seen very quickly.

Good Luck.

Surely there is some medicine out there that can minimize the length and frequency of the seizures.

I'll be thinking of you through this journey.

My heart goes out to you! I have been through a very similar experience with my 3 yr old. He started having complex partial seizures at 1 1/2 and we went through a slew of tests and neurologists, and no one could help. When it came down to starting him on general medication, we stopped and explored alternative therapy. We met the best chiropractor, Dr. Mick Mahan at Discover chiropractic, and he has been our answer. Regular adjustments and diet changes have compltely stopped our sons seizures, and he is a happy normal 3 yr old. I urge you to go and talk to him, just to hear what he has to say, and meet your son. I am positive you will not be dissapointed. His number is ###-###-####. My son's name is Logan, and he is a walking miracle.. Good Luck, and hang in there.. a mom ALWAYS knows best for her babies.

I have a friend whose daughter had seizures. The medicine they tried didn't help, the seizures actually were more frequent after the meds. I told her that she might want to try Xango juice. This is something my family has used for better overall health. Well, it worked. My friend said her daughter stopped having seizures. Now this is no guarantee, but it is worth a try. This supplement is safe for all ages, my 1 yr old grandson loves it. And I love how it has helped our whole family with better overall health. I loved this product so much that I became a distributor. I love the extra income too! The company gives a 30 day money back guarantee, so you can try it at no risk. Visit www.tryxjuice.com and call me with any questions.

Blessings,
K. Kaufman
###-###-####

G.,

My daughter started having petit mal seizures about 3 years ago. No one could explain these and since I was the only who saw them and thought something was wrong, no one wanted to do anything. That is until she had a grand mal seizure last February. I took her to the emergency room and demanded they do every test until they figured out what was wrong with my little girl. So they admitted her and she went through a cat scan...nothing found; MRI....nothing found; blood work....nothing found. Until they did an EEG. The EEG found that she was having a seizure (undetectable) in her brain almost every 5 minutes. They diagnosed her with epilepsy and started her on Keppra. The Keppra did not keep the seizures from happening and on top of that were making her very irritable. They put her on Depakote too and this seemed to keep the seizures at bay. My daughter hasn't had even a glimmer of a seizure in 3 months! I am hoping they are gone for good. Her doctor is Dr. Rosenburg and he is really good with her. She was seeing Dr. Ellis, but he left the practice and moved far away. She also went through a sleep study to see if she was getting enough O2 while she slept. They still haven't given me any reason WHY she has eplipesy. I really believe that epilepsy is a blanket diagnoses for anything nuerologist simply can't explain. While I think there are people with TRUE epilepsy; I honestly don't thing that is what my daughter has. I grew quite bitter about the doctor's lack of research and interest in finding the real reason; but have come to the conclusion that it is in my hands to figure it out.
I told you my story because I feel that you need to realize they will simply diagnose him with epilepsy whether he has it or not and whether it has to do with something as simple as allergies! You need to take charge of what really might be going on. Consider everything.
Some things I've done different:
I took her off dairy recently, and since her seizures have stopped, I am hoping that is all it was!
I stopped using harsh chemicals to clean the house. You don't have to buy expensive cleaners from natural health stores. Baking soda, borax, and vinegar work even better than chemicals for most household cleaning. Since he is having seizures at night, consider that he might be reacting negatively to the detergent you use!?
I would recommend that you go to see a nuerologist and get him an EEG. I would skip the MRI or even CAT scans. The EEG is a difficult thing for children because they have to lay very still; but most just fall asleep.
I wish you a ton of luck with your situation. I know it was like a nightmare for me when this all began at the start of the year. I realize what you are going through! I realize that seeing your child seize is like being put in a personal hell! You feel hopeless, helpless, and scared. I will never get over that trauma. never. I realize it is a million times more frightening for the child having it though.
I will be thinking about you and hoping you find your answers soon!
Big Hugs,
M.

I'm sorry. I have no advice for you, but I wanted to let you know that you and your boy will be in my prayers. How horrible. I pray thet you find answers and relief soon.

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