My 7 yo daughter - We are new to this.

[Candigirl23]

My daughter had a seizure associated with a fever in her peds office when she was 1 1/2 yrs old. How lucky was I right?? I didn't have to be super scared, (even though I was) because the doctor was right there! Her seizure lasted maybe 3 minutes. The post ic phase lasted 7 hrs. We were admitted to the hospital. No EEG, CT, or MRI, because they could clearly say, "her fever was 102.5 when we got to the dr appt, within 2 minutes of that reading she began to seize and her temp was taken while in seizure and it was 104.6." I was told she would probably never have another one. Well, for the next 4 years that was the case, or as far as I could tell that is.

In June of 2008, I was called by my husband asking me to hurry home, because ~C could not speak, being a 911 dispatcher, I asked if she was choking. He said no, just hurry. I got home within 5 minutes and ~C was standing by the couch, eyes open, lights on no one home. Her dad said it all started when she set a pair of shoes on the table (why she would do that makes Noooooooo sense.) he asked her if that is where her shoes went, and she just said "OK." When he tried talking to her further, all she could get out was jibberish. Then it appeared she needed to vomit the way she was almost gagging. Then nothing just eyes open no one home.

We called 911 and the ambulance arrived. When she was put on the gurney her back arched and head and eyes went to the right, and then I knew what we were dealing with. We went to the hospital lights and sirens, because they had to put a tube down her throat to help her breathe, due to the amt of valium she was given to pull her out of the seizure. Normal CT, Normal sleep deprived 30 minute EEG. We were sent home the next day. We did not get to see the Neuro til October.We did a MRI that came back normal. He had us do a 24 hr EEG which showed episodic (multiple) spells of the left side slowing. He put her on Lamictal. In December she had another, this one included the norm from above, and then jerking, foaming from the mouth. Once she was done, she woke up screaming, trying to stand and grabbing at her head (maybe she wasn't done).

Her father took her to the hospital due to the screaming and head grabbing. By the time they got there she was post ic. They gave her Keppra on top of Lamictal. Keppra made her uncontrollable. Lamictal gave her the rash, Zonegran made her a zombie, and Depakote is giving her terrible tremors. She has serious concentration problems, things have to be explained repeatedly, and she must do them repeatedly or she forgets. She forgets what she ate for lunch, she stops mid sentence, I guess searching for words... It is frustrating because at school they want to test her for being talented and gifted, so no one believes me when I tell them that "yes she is very very smart and ahead of grade level, but things have to be explained, and explained, so many times. She can learn to do something, and if she does not do it daily, she completely forgets how. Is this Normal???

We are going to OHSU next month, because the Neuro here .... well anyway. Anyone have any advise? I don't want to nitpick this to death and make everything a seizure, like people are accusing me of, but I don't want to miss anything either. Some times she only spaces out, and no matter what you do, in her face talking, snapping, clapping, nothing gets her to pay attention... thats something isnt it???

 

[Candigirl23]

Both her "big" seizures lasted between 35-45 minutes each. They say she may grow out of it due to the normal CT and MRI. I pray for that daily.

 

[RobinN]

Hi Candigirl... you are on one scary ride aren't you. Give your little one a hug for me.

I have a daughter that began having seizures at the age of 14. We tried meds, and the side effects were unacceptable. Vision loss, suicidal thoughts, rash, muscle and joint aches, risk taking, watching quality of life fizzle, social issues, etc.

I have turned my daughters seizures around by making nutritional changes. Children have been known to have abnormal EEGs by being gluten intolerant. So it is evident that food allergies can be triggering seizures.

Certainly not saying that this is your daughters situation, but it is certainly something to consider. No one even pointed in that direction when I was first visiting specialists. I want to spread the word, about how and why changing nutritional choices can help.

 

[Candigirl23]

Thanks for that. I will definitely be looking into that. I am excited about going to a specialist. The neuro down here is great, that is what everyone keeps telling me... I know things could be so much worse, but it is still a really crappy situation. ~C and I speak very openly about her epilepsy, we don't "whisper" about it. I never want her to feel embarrassed or ashamed. So when she is around, it is treated as no big deal, except that people need to be aware so she can be safe. I am tired of people acting like I am reading to much into epilepsy. How do I know if I am????

 

[RobinN]

I am not sure what you mean by "reading too much into Epilepsy"... please explain

 

[Candigirl23]

This is going to sound crazy I am sure... The majority of my family is still in denial about ~C epilepsy, so when I say I see something that I believe is seizure activity, they say you can make anything associate with a seizure if you want to... I don't want to... I just want to make sure she is not getting in trouble for ignoring me, because she is having seizure activity, same at school. There are so many different areas in her life if I think back, knowing what I know now... She has probably had this all along. The "nightmares" , the searching for words, not answering when she is called even if you are right in her face... Things like that. That ... people around me would call "reading to much into it."

 

[RobinN]

I see. First of all... nothing around here sounds "crazy". We all have had similar situations that frustrate us, and are hard to deal with day to day. It could be a little bit of both. All children zone out, and daydream. Many have selective hearing too. I say, work around it, and don't call too much attention to those times, and give positive "strokes" when she does answer appropriately.

So you are not saying this is occuring with the current level of medication. It is just something that you are aware of. I would tell your family that you have been instructed to write down any abnormal cognitive or behavorial activity, while you are working to understand what actually is happening. Perhaps you need to use the word seizure disorder instead of Epilepsy. Some can't handle that word. It truly is only a label. Means nothing other than two or more seizures. I don't particularly like the label, because it makes people stop to treat "It" instead of finding the cause.

At times I have had to ignore others reactions. Love the one respone that I get... "Do all of her seizures happen at school?" I know what they are getting at so I answer , "No not all of them"... many do, because now I know there is an issue with hypoglycemia. Actually, this information is helping me find the cause and reverse the number of seizures.

Keep a notebook, and write down some of your mothers instincts. Do not let others drown out that voice in your head. You know what is right. You know what your daughter needs. Some may try to take you down the wrong path, but you will quickly realize it is not correct and reverse your steps. Read all that you can, and read more on those subjects that sound plausible. Print articles out and save them. You will find clues. You will find ways to help your daughter be the best and the brightest she can become. Do be careful of getting on the rollercoaster ride of Pharma drugs. There is rarely a time that they slow that ride down to change course. You will be warned that increase seizure activity is new different types of seizures.... when actually there are causes, and the seizures are the symptoms. In our case, (and others write about this too), the meds increased seizure activity. No conventional medical doctor ever warned me of that. Always strive for the highest level of quality of life possible. When it is tough, know that tomorrow is another day, and you will make it. Don't leave a stone unturned. One day she will be grateful.

 

[rackelsmom]

Hi Candigirl23,

I'm so sorry about your little one's troubles. I think you have come to the right place for support, we have all been there either with our children or personally. I am the mother of a beautiful 9yo girl who developed e in march 06. Here is our story, it may help shed some light for you.

On March 11th 2006, I put my 6yo daughter upstairs for a nap. She had slept for about an hour when her step-father, Tommy, said I should go check on her. It wasn’t unusual for her to nap for 1 ½ to 2 hours but he said he had a bad feeling so I went up. When I opened her door I saw her lying with her feet tangled in the blanket on the bed, head on the floor in a pool of blood, she was gray and having a seizure. I called out for Tommy to dial 911; it took 45 minutes for them to get to our home. She was in status epilepticus for 10 hours. She bit the tip of her tongue off and the sides were badly chewed. After the doctors had gotten her out of status during her week long stay in the hospital one of the MRI’s showed a mass in the left side of her brain. She'd had a normal MRI only 2 years prior. Her first seizure was during a sinus infection, we were at the drug store immediately after seeing the doctor. They told us that it was only febrile, nothing to worry about.

I took Rachel before to our pastor, Harold and the elders and requested prayer. They anointed her with oil and prayed over her with the entire congregation. During the prayer I knew that God would heal my daughter, although at the time I had no idea the path we would walk or the way He would chose to heal her. He is sovereign! Then I took her for a second opinion.

The neurologist at Kennedy Krieger told me the mass was just damage, either causing the seizure or it was the result of it. So we began trying to control the seizures with medication. She failed over a dozen drugs. By August 2006 our neurologist referred us to Johns Hopkins Pediatric Epilepsy Center because she failed to respond to medication and the seizures increased in frequency and intensity. She was hospitalized in the PICU 4 times during this time when her rescue meds didn’t work either.

The Hopkins team did many tests, tried newer drugs, older drugs, different combinations and with no result. She grew continually worse, until December 2006 she began seizing and wouldn’t stop. This time she coded on the table and almost died. The doctors told me that there was only so much her little body could handle. If they didn’t get the seizures to quiet soon, she might not make it.

When we took her home from that stay, I was unable to return to work due to her medical condition. Rachel’s health was not improving; it was actually deteriorating at a frightening pace. The doctors said surgery was her only hope.

We met with the neurosurgeons and surgery was scheduled for February 22, 2007. In the meantime Rachel was seizing 30-40 times a day (tonic clonic, partial complex and absence). Tommy and I were constantly watching her because we couldn’t even leave the room for fear we’d come back and she would be gone. I tacked pieces of paper with encouraging scripture all over the house to remind me that He was with me and we were in His care. On February 21, 2007 my sister flew in from Mississippi to help me at the hospital. We got a room at the Children’s House, a true blessing from the Lord, and we took Rachel to Hopkins early on the 22nd.

When Dr. Jallo, the neurosurgeon came in we took her into the surgical suite and Dr. Jallo prayed with us and the nurses and other doctors. I felt such peace and calmness I can’t explain it other than the peace that passes understanding. It went well; she was in surgery for about 8 ½ hours then went to ICU to await her room in the EMU. They took the skull off and placed grids of electrodes on the brain along with 2 rods of electrodes through her brain, replaced the skull and threaded the wires out of a hole bored in the skull. In the EMU they attached the wires to a pack that connected to the EEG machine. She was like that for 7 days, during which they would stimulate various areas of the grid to see if it affected vital functions. After the 7th day she returned to surgery again for a resection of the Left Temporal lobe. It went well, but they couldn’t to remove all the damaged area because she was unable to tolerate anesthesia much longer, they called it a success. She came home and was seizure free for 10 days. Then the seizures came back.

On May 1, 2007 she went back for the 3rd surgery. This time we had not only Dr. Jallo’s team but Dr. Ben Carson’s team as well. There were 27 people in her OR suite. This time before surgery Dr. Carson led the prayer. He asked God to use the doctors and nurses as His vessels of healing and to guide their hands. I will never forget the presence of the Holy Spirit in that room! God showed up and they went to work!

This time she was seizure free for 6 weeks! But they returned again. By the summer of 2007 Rachel was having frequent seizures again, although they were lesser in intensity because of the surgery.

Our epilepsy specialist told us he would like us to put Rachel on the Ketogenic Diet. The Ketogenic diet, which is very high in fats and low in carbohydrates, makes the body burn fat for energy instead of glucose. It was first developed around 1912 although its roots go back much farther. Howland and Gamble of Johns Hopkins Department of Pediatrics observed that "prayer and a water diet" for three to four weeks reduced "fits" in the nephew of a professor of pediatrics. Matthew 17 refers to a young boy who Jesus healed from fits, now known as epilepsy. Prayer and fasting, this was something I could certainly understand. The diet is so high in fat it causes the body to be tricked into thinking it’s in a constant state of fasting, or ketosis. God is so awesome that He provided us with this medical diet right in the Bible. He is omniscient.

So in November 2007 Rachel went into the hospital yet again, but this time to begin the Ketogenic diet. Dr. Kossoff, the director of the diet program told me not to expect much. They were just putting her on it to give her time to heal before going back for more surgery. He reminded me there was still damaged area in the brain they were unable to remove because of an unusual grouping of blood vessels so the diet might help but it was really a long shot, she was not a good candidate. I clung to the promise God made me, He would heal her and I felt certain it would be through this diet which was based on the Biblical teachings of Jesus. The induction was very hard on Rachel; she began seizing nonstop in the hospital. On the day we went home, she had 27 seizures by noon when we were discharged. The diet was a bit overwhelming because her portions are weighed to the gram, and I was nervous she wouldn’t like the food or I would measure it wrong but God calmed my fears and by the end of the first month on the diet she was down to only 1-2 seizures a month! After the first couple of months on it I noticed she only seized while she was ill.

She has been completely seizure free for over a year now and off all meds for 4 weeks. The ketogenic diet really was our miracle.

Never underestimate your ability as a mother to know what is and isn't normal for your daughter. Along with what Robin said about keeping a journal, you can video the episodes that seem unusual. I did this and emailed it to our epi before our first appt. When we walked in they had already seen most of what her sz's looked like, they actually bumped up her appointment so we wouldn't have to wait.

I will keep you and your daughter in my prayers,

Ann

 

[skillefer]

Hi candigirl! Welcome to CWE. The spacing out sounds like an absence seizure. They are the most commonly missed seizure because they don't look like the stereotypical seizure which are grand mals (tonic clonics). Now please understand that we can't diagnose online, but when you go see the new neuro, ask him/her. Also, if you have a video camera, you might want to videotape any thing that you think might be seizure type behavior.

Forgetfullnes can be a side effect of medication as well as side effects from the seizures. Make sure that you keep a good journal of what type of odd things you see as well as when and how long they last. This will help the neuro. Also, don't be surprised if your child has more then one kind of seizure, or if the testing like the EEG's come back normal. I've had epilepsy for over 30 years and only had 1 abnormal EEG. Hope this helped. Check out the library here. Its' got some great info.

 

[katie's mom]

I'm a little pressed for time but wanted to send lots of hugs & prayers your way!! I have been in a similar boat with my 4yo & know how scary & painful it can be!!

I would ask your doctor about these things:

1.) She needs to have a 23-hour VEEG if she hasn't already had one. This is necessary to identify seizure types, frequency & see if she has 1 of the many epilepsy syndromes. The "out of it" spells are probably absence seizures, but this is what you need the VEEG for.

2.) Diet-based treatment options (i.e., Ketogenic, MAD, LGIT). If more than 2 meds haven't gotten the job done then chances are other meds won't work either. Diets are difficult but worthwhile in the long run and don't have those horrible side effects. Also they're a lot less risky than surgery.

PM me if you ever want to talk!!

Kristi
Kristi

 

[KellyD]

Hello! My son has epilepsy as well, he was diagnosed at 9 months. I know how scary all of this is for you and my family were in denial a bit as well but nobody knows your child like you do. I truly believe in mummy instinct and if you honestly feel something is out of place then it probably is. Keep talking until someone listens! Don't worry about what other people are thinking of you, the most important person here is your daughter and that's what you have to focus on. Best of luck, I hope the specialist can help you out and things start to get better.

 

[danjor]

Hi! Im Jordan! I was recently diagnosed with epilepsy too. Im 16 years old and I have only had this for about 4 months. I just want to say that I understand how much people don't understand. My mom is alot like you. Its a very scary thing for mom's to go through. She is still going through alot. But I would just like to send my prayers and well wishes to you!!
Contact me anytime!

 

[katie's mom]

Wow! I hadn't read your entire story yesterday, Ann - but what an amazing testimony!! I had no idea how much you endured trying to save your daughter. What an incredible mother you must be!

Candigirl - I would definitely echo what Ann said about video-taping the seizures. Looking back, I wish that's what I would have done for my daughter. That would help expedite the diagnostic process - meaning more peace of mind/info for you & possibly more help for your daughter.