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Child with seizures

Old 10-13-2019, 06:48 PM
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Default Child with seizures

Our 18 month old daughter has had two febrile seizures and after several test all has seemed normal, but a couple of weeks ago see began some mild twitches that may be infantile spasms that could lead to epilepsy or worse. Anyone else have any experience with this.

we are trying to get back into the neurologist to determine the proper diagnosis.
Old 10-13-2019, 07:05 PM
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Originally Posted by Saltydawg15 View Post
Our 18 month old daughter has had two febrile seizures and after several test all has seemed normal, but a couple of weeks ago see began some mild twitches that may be infantile spasms that could lead to epilepsy or worse. Anyone else have any experience with this.

we are trying to get back into the neurologist to determine the proper diagnosis.

Sorry to hear this about your daughter, may I ask what her temps were running when she began seizing? Typically anything over 101 is when it occurs and start with eyes rolling in the back of their head to complete unconsciousness. The biggest thing is to maintain their airway and make sure the tongue doesn't fall back and block it. Is anyone in your family epileptic? Not all the time but sometimes it can be traced to hereditary genes.
Old 10-13-2019, 07:42 PM
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At 4 years old, a nephew started having terrible seizures out of nowhere. Always the same - falling face first to the ground (or whatever he hit on the way down). It took close to 2 years and many different doctors and meds to finally get him successfully diagnosed and treated. He apparently has Doose syndrome.
Close to 2 years now and no more seizures.

Good luck with your child. I cannot imagine what going through this with a child would be like.
Old 10-13-2019, 07:48 PM
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Originally Posted by Finfever21 View Post
Sorry to hear this about your daughter, may I ask what her temps were running when she began seizing? Typically anything over 101 is when it occurs and start with eyes rolling in the back of their head to complete unconsciousness. The biggest thing is to maintain their airway and make sure the tongue doesn't fall back and block it. Is anyone in your family epileptic? Not all the time but sometimes it can be traced to hereditary genes.
both times it was about 102-103, all EEG came back fine but now she is having spasms that we are concerned about that from reading may lead to epilepsy. My wife had febrile seizures but then outgrew them and her aunt and cousin had epilepsy into their i adult years.
Old 10-14-2019, 06:47 AM
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Sawltydog,

My heartfelt compassion goes out to you, your wife and your child. What I am about to say is just my own experience from our son having febrile seizure and is not intended as a diagnosis as each case needs to be dealt with on an individual basis and no two kids are exactly alike.

As I have said before our son was born prematurely and at a very low birth weight (2lb. 13oz.) He however was very healthy and seemed to be thriving. Then at about 1 yr, he had his first febrile seizure. We were on our way to church with him in his car seat. I looked in the review mirror and noticed his eyes were rolled back, he was slumped and experiencing tremors and not breathing. We stopped at the nearest home and I knocked on the door (no cell service in this area) It just happened to be an EMT crew member that lived at the home and she radioed for an ambulance. She came to the car and took him out of the car seat. At this point we realized he was burning up with fever. This was all very sudden. No indication of sickness or virus prior to this. They took him to the ER. By the time he arrived at the ER, his temperature had dropped significantly and he seemed to be fine apart from being exhausted. They checked all his vitals and told us that it was likely a febrile seizure. They told us it is very rare, and most infants who have them will never have another one. We were sent home. Our home was about 45 min from the hospital. We drove home and by the time we reached our driveway, he was having a second seizure. We called 911 and the ambulance met us at the end of our driveway. Once again they took him to the ER. Once again by the time he arrived, everything appeared normal. They performed a spinal tap to check for meningitis (this was not a pleasant experience for any involved) and they took blood. Once again we were sent home. The meningitis test was negative and we were told we would need to wait for the other blood tests and cultures to get a diagnosis, meanwhile we were told to administer alternating doses of Tylenol and Motrin to reduce any fever.

The Tylenol/ Motrin regime seemed to be a curse for us. Although it would keep his temp down for a while, it was never possible to prevent a spike toward the end of the cycles. His fever would reach 105 and we would have to use damp washcloths to cool him. At this point we went back to the ER and they admitted him. We were sent to UVA to see a specialist. There they told us they thought it was dehydration and the administered IV fluids. Due to the unuasual number of seizures he was having, they performed EEG and set up an appointment with a pediatric Neurologist to rule out Epilepsy or any other possible neurological issues.

Visit with the Neurologist and results of the EEG were negative. No signs of epilepsy and EEG was normal.

His pediatrician then looked at the results of the blood tests and Said he was concerned becuase sodium levels appeared to be a bit low. We were referred to a pediatric endocrinologist. She did more tests. After reveiving tests she gave us a diagnosis of CAH. Now we were really scared. She said his version of CAH was mild and when his body experienced extreme stress, it was causing salt wasting. His sodium level were off and we should allow him to have all the salt he wanted and follow up in a year.

Being the type of person I am, I began researching febrile seizures, CAH, epilepsy and a thousand other possibilities.

During that year long waiting period, he had several more febrile seizures, in fact, every time he ran a temperature he would seize. My wife was a nervous wreck. They Tylenol and Motrin were obviously not working and made it more difficult to ascertain just how sick he was and what his real temperature was. Supplementing sodium seemed to have no benefit.

In my research, I stumbled on a study where a doctor who treated pediatric patients administered calcium tablets for fever reduction with great success. I immediately went to the local health food store and bought a bottle of liquid CalMag+ Which is a Calcium Magnesium supplement with free ion calcium. We began to give him this instead of Tylenol and Motrin and it was nearly 100% effective at reducing his fever.

The theory behind this in laymans terms goes something like this. In some children, especially premature infants, the hypothalamus, which controls body temperature, cortisol, and several other critical functions is immature and not fully developed. When the body encounters an form of sickness, it needs to form white blood cells to fight off the sickness. White blood cells require significant amounts of calcium to be produced. The most significant source of calcium is bones. By elevating the body temperature, calcium is more readily released from the bones into the blood stream. The hypothalamus controls how high the temperature goes to release this calcium and if it is immature, it may not regulate the temperature as it would in those who are older. In some cases, fever can go unchecked. Although scary, as long as the temperature is being caused by normal sickness such as virus, teething, minor infection, etc, it is not life threatening. Most people think a fever can kill a child. This is for the most part false. The fever is actually beneficial and speeds recovery in the event of illness. As such, we should not worry about the fever as much as about what is causing it.

We found that free ion calcium, along with magnesium which is needed to absorb calcium, was our most effective tool for preventing febrile seizures.

Our son outgrew his febrile seizures, and he was also later cleared of having CAH. Apparently the CAH was misdiagnosed.

There are significant bodies of work in research that indicate a connection between serum calcium ion levels and febrile seizure and febrile seizure with convulsion in particular. https://ijpediatrics.com/index.php/i...ticle/view/923

You may want to review these studies and discuss the potential of calcium supplement therapy with your pediatrician as well as insuring that any time your child feels warm or is acting particularly fussy, that electrolytes are administered and readily available. In these kids, just "getting lots of fluids" is not going to cut it. They need to be balanced electrolytes.

Hope this helps and we will keep you and yours in our prayers in this difficult time. Feel free to PM if you want to discuss further.
Old 10-14-2019, 06:47 AM
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Hey SaltyDawg,

We went through what sounds like the exact same thing with our daughter. At around 14 months she had her first seizure. It was her worst and needed anti seizure medication in the ambulance to come out of it. All tests showed she was good and no indications on an MRI or EEG. Chalked up to possible temperature related and virus related. Around 5 months later she had a rash of several. All at night while sleeping and were cluster seizures- meaning short spasms and would mildly come out before having another small one. More tests and a 48hr EEG revealed nothing at all. Again, possibly viral linked but no real cause. She was put on Kepra which has worked thus far really well. She is at 15 months seizure free. At 2 years, they will try and bring her off the Kepra.... fingers crossed.

Our original neurologist put her on a very low dosage and kept it there to monitor progress. This basically weans her off as she grows which we really liked as it limits the side effects. We relocated for my job and the neurologist here immediately wanted to basically double her dosage du to weight and do a full EEG again in the hospital. Considering our daughter is going through a phase where she i terrified of dr's we really didn't feel that would do any good and drove 12 hrs to see our first Dr. He said to keep her on the original dosage as she is responding well and has been seizure free with no side effects of the Kepra. We d also have an emergency med to use if she has a seizure longer then 3 min.

My wife also had a febrile seizure while young and it ran in her family but all grew out of it. We hope that is the case with our daughter and sounds like it may be the case with your little one, hopefully.

If you have any specific questions, PM me and ill be glad to answer them. Seizures are scary as hell, especially when I used to work at sea and got "that call" a few times. The change of careers keeps me home full time now which is much better.
Old 10-14-2019, 06:55 AM
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Our daughter went through this when she was younger. Would run very high fevers and seize. She is 9 now and outgrew it. Don't assume the worst. Most likely she will outgrow it. Do your due diligence all the same. Good luck.
Old 10-14-2019, 06:56 AM
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The key is to find a qualified pediatric neurologist that can do the proper tests and come up with a diagnosis. The family history might be key, hopefully actual medical records exist with diagnosis for some of them.

We experienced this with our son 25+ years ago. They were very scary. Expert at Boston Children's Hospital came up with a diagnosis, a possible treatment, with possible side effects. Said the child should outgrow them, and agreed with our decision to not medicate and watch child carefully. In under a year they stopped and never returned.

Please seek the proper medical experts, and don't rely on internet diagnoses,or think that anyone's experience (including ours) has anything to do with what you may go through.
Old 10-14-2019, 10:24 AM
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I don't have any experience with children but my wife has learned to control hers. Spend the time to find or get in with a good competent Dr. We spent a few tough years looking and meeting with various docs until we found one we trust. Our experience with neurologist is they do not have the best bedside manner and sometimes did not do a good job explaining and talking to us about her condition. Hopefully this is something your child can move on from, best of luck.
Old 10-14-2019, 12:18 PM
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I feel for you and your family. Hoping for an immediate (and permanent) stop to the seizure activity your daughter is experiencing.
Old 10-14-2019, 12:25 PM
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My daughter had one at about 3 years old. She has no lingering effects.
Old 10-14-2019, 05:35 PM
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We went through this with ou son fever and seizures we had pediatric specialist they done spinal taps just about every test you can imagine. My mother said take him to the family doctor we finally did he said ear tubes and take his tonsils out. No more problems afte that. this went on for years sometimes it pays to listen to mama
Old 10-14-2019, 05:37 PM
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No experience at all. Just praying for you, I can only imagine how scary it may be.
Old 10-14-2019, 06:30 PM
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Thank you for the first hand experiences and knowledge, she was admitted to the hospital today and is having an EEG as we speak. She had one back in March that was normal but now she is having these spasms and the doctor is hoping to catch one. As a father there is no bigger pain than having your baby girl crying for you when they are poking and getting her ready.

I have to credit my wife as she is the most persistent person I have ever met, our pediatrician was setting us up with a different neurologist and when my wife questioned why him versus the one we have, he said because I want to get you seen but if you can get into the one that is seeing us then he is the best in south Florida but impossible to get into. She was on the phone with him by 8:00am this morning. So we feel we are in very good hands.
Old 10-14-2019, 06:42 PM
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I don't know if it's an option for her age, but perhapsask if An ambulatory EEG is worth considering
Old 10-14-2019, 08:50 PM
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Agree to the above. Our daughter’s 48 hr eeg was a take home. Meaning they set her up with the sensors and gave us equipment to keep it plugged into. It provides the most normal conditions to catch something. Ours were always clear but it provides a less stressful way then staying in the hospital and stressing everyone out.
Old 10-15-2019, 08:37 AM
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Take home would be ideal, but if it’s infantile spasms time is of the essence for treatment and the doctors don’t have confidence it would happen quick enough between insurance approval and scheduling so they admitted us.
Old 10-15-2019, 08:40 AM
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Hope you get some answers.
Old 10-15-2019, 01:57 PM
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Sitting in the ER right now, my 22 yr old son has a form of epilepsy and has had severe seizures above every three months or so far the last two years, he had one this am, after couple years we are still playing drug roulette, try this, try that, more of this, less of that etc. We have finally found a fantastic neurologist, the comment above about them not having the best bedside manner to s accurate
Old 10-15-2019, 05:03 PM
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We dealt with it, scary as hell. Happened twice. Went to the Motrin / Tylenol regime when she stared running a fever never happened again. Good luck.

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