4 yr old boy 2 grand mal seizures in 11 months abdominal problems

[sixkidsandblessed]

I want to first thank Robin N for her continual support and help in the last day for our fmaily. I dont' knwo what we woudl have doen had we not found you all. Below is our story and comments or suggestions are welcomed and appreciated. This is what I sent Robin:

My name is Tiffany. I am the mother of 6 wonderful children ranging from ages 6 to 3 months. Ben is our second child and second son. Ben has had 2 grand mal seizures 11 months apart. He also has the following problems:

Tired/Fatigued (always)
Nausea (always)
Fatigues easily (always)
Vomits after big meals (always)
2 bites of dessert and pushes it away (On & Off, knows his limits)
Itchy (always!) all over
Rashes on stomach and chest (on and off)
Darkness around eyes (always)
Sleeping problems (always)
Night/Nap sweats (on & off)
Gassy (always)



Loose stool and fills the toilet when he poops, takes him about 10 minutes to go. 3 times a week normally.



He had grayish white poop a day and half after his last seizure. He continues to complain of abdominal problems and pain in his bones. Ben is not a complainer and at 4years old (very active child) will lay on the couch until the pain subsides. He complained of abdominal pain the day of both of his seizures which was noted in both charts but nothing was investigated.

He has been tested for celiac disease. Negative results. He has been tested for allergies and he is not allergic to anything.

He has not been tested or any other diseases. No blood work has been taken other then the day of the seizure both times. No urine tests have been done. Nothing has been tested to find out his abdominal problems.

He has had 2 EEG's one normal, after the first seizure (in the morning following the seizure), one abnormal after the second seizure (one week after the seizure) they had us keep him up all night long for the 2nd EEG.

February 9, 2009

Grand mal seizure at 7:45pm lasted 3-5 minutes

Ben was sitting on the toilet going to the bathroom and fell forward.

-He had just come out of the shower.

-He had not had his normal 3 hour nap.

Ben stopped breathing for 1-2 minutes. Brad preformed CPR until he was no longer blue. Ben then vomited. He was awake at some points but unresponsive until 3 am when he awoke and asked for socks. He lost his bowls in the ambulance on the way to the hospital. He had been on the toilet prior to the seizure trying to go.

January 13, 2010

Grand mal seizure at 8:00pm lasted 3-5 minutes

Ben was in the bathroom going pee for the last time of the night.

-He was past his bed time.

-He had not had his normal 3 hour nap (we were trying to wean him off of them).

Ben stopped breathing for 1-2 minutes. Did not lose bowels or vomit. He was awake in the ambulance. Could carry on a conversation by the time he reached the hospital.

He remembered the game (color of his piece and who won) we had just played and the plot of the book read to him 5 minutes prior to the seizure.

Other information

Normal Bed time 7:30-8:00pm at the latest

Wake 6:15am

Nap 12:15pm-3:00pm

Neurologist we were sent to was awful and said simply "epilepsy" and gave us a list of 7 meds and asked us to see which one we wanted him to be put on staring the one (his choice) said we could try to treat it with roots and berries but he doubted it would work. He only said he had epilepsy after he had handed me the list of medications and I said "What does he have?" . We tried asking questions all were met with more questions at us. Where were our references? Laughing at the awful diseases we explained in our family and remarking "Isn't that cute" so many times I lost count. Then told me and my husband to go have a drink. I could go on and I but I think you get the picture of what we were up against. We are seeking out a Epileptologist and have a date in March but need help in finding if any of these symptoms are also associated with other diseases. Any suggestions would be helpful. We are willing to try any natural means to help Benjamin. We have a wonderful Pediatrician but he feels this new doc is now the saving grace and he insists they will help in finding out his abdominal problems, unfortunately for Ben they continue to grow worst and at best remain the same.

Thank you in advance for any help you can give our family. We appreciate your time and for listening to us. We just don't know where or how to start......

Sincerely,

Tiffany & Brad (and Ben)

 

[occb]

Judging by the gray/whitish stool, I would go see a gastroenterologist about that immediately. It suggests there's something not right in his digestive tract or liver.

 

[Rae1889]

you need to push for an MRI, and CT scan immediately.

and i agree with Occb too. Get him checked out thouroughly. there is something severly not right with this. I dont mean to scare you when I suggest this either, but I would get him tested for lukemia. its a little painful for him, but it would be worth it

There are several things that could cause the symptoms like that. But for sudden onset of these things that never have seemed to bother him before is what is striking me as urgent. not wanting to eat or sleeping unwell, plus the whitish poop. something is seriously wrong and i think the seizures are a side effect, not the syndrome in itself.

Technically Epilepesy means you have had 2 or more seizures. this doesnt always mean that it is the cause. There can be things like head injuries, other illnesses, diabetes, etc etc.

does he have any other illnesses in the past? other hospital stays? head injuries? those things can add clues to the cause, as to me it doesnt sound like Epilepsy should be the diagnosis. I think it is something else and the seizures are manifesting as a symptom.

Has he had a physical recently?

 

[sixkidsandblessed]

NO hospital stay, other then 1st seizure. Gets sick as much as any kid. Never on antibiotics until the last 6 months. Only twice. No head trama, easy birth 2 pushes, he has not been tested for anythign other then what we puched for and CBC, normal metabolic panel wich came back he was anemic the first time. Other then that only his outward signs. He has a chek up each year and sees his ped often do to the other kids getting shots. (A lot of young kids I feel like epilepsy is what they said before we entered the room....

 

[skillefer]

Ummm...I'll agree with occb. Also, you might want to ask the docs to have a complete blood workup done. See if his hormone and nutrient levels are there they should be. Deficiencies in certain minerals can trigger seizures. As can low blood sugar. (And when thinking of blood sugar, remember that anything made of flour or potato or rice pretty much counts as a sugar....)

 

[occb]

As Rae said, the seizures sound like they're a symptom of something else going on as opposed to the illness itself.

Did you mention the white stool to the pediatrician? What did he say? I know I seem to be harping on that specific point, but it's a pretty big indicator that the health concern is outside the brain.

 

[Rae1889]

you might find this interesting:

http://www.wrongdiagnosis.com/symptoms/white_stool/common.htm

http://symptoms.wrongdiagnosis.com/cosymptoms/seizures/white-stool-desc.htm

I suggest to get them checked out

 

[sixkidsandblessed]

Thank you both for your suggestions. I hane been on wrong diagnosis about a million times typing in seizures & ... I really like the site. I also looked at abdominal epilepsy on several sites though many doctors or nero's will diagnos it... I have typed in ever problem he has and considered ever possible thing on google and other web sites. We paid an online doctor to look at his history and he came back with metabolic disorder need blood work and urine done. I am hopful we could find a good GI specialist after seeing the new nero who will listen to us. Hard to find anyone in the medical community to listen to you after a seizure has occured and hard to find someone who would take us seriously that his other symptoms are related. I have several questions about the GARD diet, anyone willing to answer? Thank you all again for your time.

 

[occb]

I'm still new to the whole GARD diet stuff. There's some good links and info in the GARD diet group. If you click on Quick Links on the top right, then on Social Groups in the drop-down menu, it will take you to the page to find the group. You'll see who is well-versed about the diet when you join.

 

[sixkidsandblessed]

Today was the day. Benjamin had another sleep deprived EEG and saw an Epileptologist. The visit did not go as planned. Ben was excellent for the EEG and slept when asked, they tried to hyperventilate him etc.. This doctor took everything into account (and 2 hours of his time) from both episodes and this now controlled EEG done by the specialist. The first EEG he had a year ago was normal, the second EEG done that we were told was abnormal was actually normal and weakly read by 2 adult nurologist(our guy said it was a weak and bad call to say it had any epileptic tendency) , this EEG today was normal. He diagnosed Ben with Vasovagal Syncope which means he fainted while peeing and it provoked a seizure. Both events happened while using the bathroom (he also was sleep deprived and the first time had just gotten out of the shower which are triggers and normal for this condition). He explained once an episode like this happens in the bathroom the diagnosis is a maybe but twice in the bathroom was the pearl and very clear with the event & symptoms. The doctor said this very well could continue and we should increase his fluid & salt intake. He explained that epilepsy was a specific illness and everything adds up to it. Children with epilepsy do not have seizures a year apart and normal EEG's. He did not feel that his other symptoms had anything to do with these spells and said a GI specialist would be better to consult. Brad and I had prepared for the worst, researching questions upon questions figuring the tests they would take. It has been a journey to even get to this point and we will continue to look into his other symptoms as they have grown worst. The greatest thing that came out of today was we did not put Ben on meds when the first neurologist so badly miss read him. Had we done that we would of had a very different outcome. We will continue to update you as we find out more. Today was a great day. God is wild about Ben and we could not be more grateful for it. Thank you all for your support and prayers.

 

[RobinN]

You are crossing off a few ideas, and in the process setting out on new paths. Keep fighting for that little guy, and continue to trust your intuition.

I hope you are able to work with a skilled GI specialist. I can't tell you how many stories I have read on other neurological sites of kids that have GI trauma. It is incredible the numbers that speak of this symptom.

You can start today if it has "grown worse" by eliminating and supporting GI health with whole foods, and food items that were intended for us to eat. Eliminate all those items that are packaged and processed.

I also am glad that you did not jump on the med rollercoaster like we did. It put my daughter into a tailspin. It wasn't until we were out of it and her body clear of drugs that we were able to see a more positive route.

I am glad that today was a great day, and that you can share many more. I would ask that you keep a journal, so that in the event you do find more answers, we can put your story into the History Books here at CWE.

God Bless, and keep up the good work.

 

[Jo Lucero]

stand up fpr your son

I was in nusing for many years. Youhave a right to find another Dr. Some of them just don't have an answer and don't want to admitt it. I'm also an epileptic. And i have delt with this al of my life. And 52 years old now. Thereis answers we just have to find them. I will be praying for you andyour son.