Needing Answers

Sharma - posted on 03/24/2011 ( 10 moms have responded )

2

0

0

In July of 2010, my son Johnathan, who was 16 at the time ( he just turned 17 a few days ago), woke up in the morning and he had vomit all over his bed and a rash on his face. He was also complaining about severe pain in the middle of his back and his legs. It took the soreness to wear off of him almost two weeks. I thought that maybe he had, had acid reflux and because he sleeps so hard he didn't wake up and that was why the rash was on his face because he slept in his vomit. Then one month later in August, his brother, who shares a room with him, woke my husband and I up and said Johnathan is breathing weird and making noises and I can't wake him up. When we got into his room, it was very plain to see that he was in some sort of distress. We tried and tried with everything we had in us to wake him up, but he would not wake up. We rolled him onto his side and vomit came out of his mouth. We called the ambulance out, and called our pastors to start a prayer chain. By the time the paramedics loaded him up into the ambulance, he finely came to. At the hospital the doctor said he didn't know what it was, maybe a seizure or acid reflux and sent him home. We took him to our family doctor and she thought it might have been seizures but she couldn't refer him to a neurologist unless it happened again. Well last month in Feb. our older son came in and woke us up and said Johnathan is doing it again. We jumped up, called the ambulance, started the prayer chain again, and tried with all our might to get him to wake up but no response. This time when we went in to his room, he had his arms drawed up over his face in a very stiff way. He didn't wake up fully until half way to the hospital and it seemed to take a few days for him to fully recover. He was again very sore, and had the same rash on his face. We have finally been to see the Neurologist and he has had an EEG which came back normal. I should be happy with the results, and I am but at the same time I want to know what is wrong with him. I have moved his bed into our room, I wake up all through out the night checking on him. I make him sleep on mounds of pillows to keep his head up, and I make him sleep on his stomach or his side. I'm looking for any body else out there who has had to deal with anything similiar to this and any suggestions on what to have checked or what specialest I should try next.

MOST HELPFUL POSTS

Patricia - posted on 03/30/2011

29

4

1

That describes a grand mal seizure perfectly. You cannot wake someone up...because they are not asleep. They are seizing and you just have to let it run its course. Time them...the neurologist will want to know exactly how long they last. Throwing up can be deadly...you are doing exactly the right thing, propping him up or having him on his side so he doesnt choke. Do NOT do the Heimlich even if he sounds like he is choking...he is not. Do NOT EVER try to cram something between his teeth. Swallowing your tongue is an old wives tale and you can destroy his teeth. Move sharp objects away from his bedside (like nightstands with sharp corners). Do NOT try to straighten his arms, legs, etc., or you can break them...a seizure causes the muscles and tendons to temporarily tighten. It usually takes feom 12-48 hours to fully recover. He will be very tired and VERY sore...a 1-minute seizure is the equivalent of running a 20-mile marathon...your muscles are SORE. I have over 30 years of experience dealing with seizures with both of my children. Last but not least, be proactive with the doctor...dont take no for an answer...time every seizure. Video them if you do so safely and show the video to the doctor. Hey are scary...but NOT life threatening. Hang in there!! Until you get it figured out, dont let him drive and dont let him take baths...showers only. He may be a little disoriented after a seizure...just let him relax and sleep. My kids will sleep for about 24 hours straight after a big seizure.

Jessica - posted on 03/24/2011

87

4

25

A normal EEG does not mean he is not having seizures, it just means he did not have a seizure or any abnormal electrical discharges during the test. Did they do a sleep deprived EEG? How long did it last? It could be helpful to get a longer study done like a video EEG and/or a sleep study. It wouldn't hurt to rule out the reflux, too. Just keep bringing it up with his doctors until you have the answer that fits.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

10 Comments

View replies by

Tara - posted on 12/04/2011

1

0

0

I was in the hospital for three years as a child and every test they ever ran came back normal.It doesnt mean he's not having seizures it just means they didnt catch him having seizures or it didnt show up on the scan. I even had seizures during a scan and nothing showed up.

Patricia - posted on 03/30/2011

29

4

1

P.s. Both my kids always had normal EEGs...except for one time when my son had a seizure in the middle of his yearly EEG.

Nicole - posted on 03/30/2011

6

32

1

hello my name is nicole: My son of 19 years old today was born with epilectic seizures. He was doing 100 seizures a day, tell me about it , it was very frightning for me, i'm a single parent and i dealt with this till today, but his seizurs is very calm now with the meds he is taking. so don't give up they will find som kind of meds to slow down his siezures. best of luck. your truty nicole.

Darlene - posted on 03/30/2011

2

0

0

I agree with the others, a normal EEG doesn't mean he's not having seizures. You are your son's advocate, so you must be insistant. Request a 24 hr. EEG with video. Good luck!

Darlene - posted on 03/30/2011

2

0

0

I agree with the others, a normal EEG doesn't mean he's not having seizures. You are your son's advocate, so you must be insistant. Request a 24 hr. EEG with video. Good luck!

[deleted account]

I am so sorry you must deal with this! I agree with Jessica. A normal EEG does NOT mean they were not seizures. Especially a sleep deprived EEG. My son's seizsures usually come about an hour into sleep, so when he had a sleep deprived eeg, nothing showed up for him either. You definately need to push for the video EEG. These are usually done over a 3 day period. Also, you should keep a "diary" of your son's physical and stress levels. Often times, lack of sleep, or out of the ordinary physical activity or stress can bring on a seizure. Further, keeping a video camera near by is also a great idea. This will enable to you document what's happening and then show it to the doc's. Often times, sleep apnea can have an effect on seizures as when the body stops breathing, oxygen is cut off from the brain and can cause it to seize, do not miss out on the sleep study. Like a video eeg, it can surely bring you some answers. I will keep you and your family in my prayers and hope you find the answers you need.

Heather - posted on 03/25/2011

699

21

254

Also, keep a camcorder handy so next time you can film it.Hopefully, there won't be a next time though!

Sharma - posted on 03/24/2011

2

0

0

It was a sleep deprived EEG and it only lasted about an hour, and my son slept for about 10 minutes. Thanks for your reply, I will be talking to the doctor about the video EEG and his doctor is scheduling a sleep study.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms