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New Here, Worried/Concerned...Please Help : (

Hello all, I'm hoping someone can help me sort out my confusion and worries. My name is Anne, and my sweet, bright, handsome son (about to turn 9 this month) has had quite a strange year (in 2005).

He had 3 seizures in about 28 hours back on December 1st and 2nd. Two "focal", and one "tonic clonic" (the whole body one).

These took us by complete surprise - there is no history of epilepsy or seizures in our family.
He had no fever, nothing had changed in his life that we are aware of.

Okay, the reason I am concerned, is that I feel his health is declining, and I feel powerless, helpless, and totally confused.

History:
*Perfect health til 2005 -- rarely sick, ate really well, etc.
*Summer 2005 -- he developed hypertension, resolved after 3 months, we still don't know why (he is not even remotely overweight, very healthy eater).
*Fall 2005 -- he became frequently fatigued, irritable, tired all the time. Started looking paler than usual.
*December 1st and 2nd -- the seizures.
*EEG abnormal -- sharp wave pattern in temporal lobe region.
*CT scan -- clear
*MRI -- "normal", incidental finding of cyst on/in pineal gland
*Official Diagnosis = "Focal Seizures"
*Very, very thorough bloodwork reveals everything to be totally normal -- he did test positive for Mono -- not acute, so maybe that explains his fatigue???? But doctor said most people do test positive for Mono, so this is not entirely helpful.

Sleeping and eating haven't changed much, yet he is soooo tired all the time.

Could he be having seizures at night we are unaware of?

Would an overnight EEG be helpful?

I am sorry this is so long, I hope someone here can help me or give me some insight or guidance. I feel like my son's health is deteriorating and NO ONE has ANY anwers! : (
Thank you so much to anyone who can offer any advice...
Warm Regards,
Anne

Comments

Re: New Here, Worried/Concerned...Please Help : (

Hi Anne:
My heart goes out to you, becasue I know how you're feeling. My beautiful 8 year old son was just diagnosed with Epilepsy in December 9 2weeks before Chrsitmas). He's had 2 partial complex seizures. He also was very healthy and energetic, and there is no history of seizures in either my or my husband's families! This took us by completely surprise and of course we are frightened and confused!

I'm not sure I can offer any guidance since I'm as lost as you are (of course you're also dealing with other stuff). But I would tell you that YOU are your son's voice. He CANNOT tell doctors what's going on, so you have to be his advocate. I would request a second or even third opinion regarding his hypertension, or even request a pediatric endocrinologist. Have them check EVERYTHING. Leave no rock unturned.

Regarding the Epilepsy, my doctor recommended Lamictal as the drug with the least desirable side effects.

I will pray for you and your family. If you'd like to correspond, I can be emailed at: maureen.portillo@coair.com.

Best of luck to you. You are not alone. I have discovered that there's unfortunately A LOT of us going through similar stuff.

Maureen

Re: Re: New Here, Worried/Concerned...Please Help : (

Thank you so much Maureen -- I appreciate the reply. I did email you!
Best,
Anne

Re: New Here, Worried/Concerned...Please Help : (

Dear Anne,
Welcome to the site. I to have a 9 year old that was Dx in october of 2005 so i am very new to this whole thing also. I have found so much support and info here. I so wish that i had the magic answere for you I thnk that the changes to the brain can bring on fatige as well as the medications if he is on any also childern at this age are growing at such a fast rate that they do get naturally tired more so than before. Please make sure that you are comfortable with the doctor you are working with they should be able to help you sort things out. Personally I had my daughter to 3 neros til I found a really good one that would answere my questions and validate my concerns. Remember you are never alone ther are lots of parents here and some very wise people that deal with E on a daily basis and we are more that happy to help you and listen to you.
Best regaurds Pam

Re: Re: New Here, Worried/Concerned...Please Help : (

Hi Pam, I appreciate the reply very much. My son is not on medication at this point -- his neurologist appt. is next week and I'm sure it will be discussed then.

I am just not used to such worry in my life. I mean I'm just a pretty laid back person, and yet my mother's instinct is just on "red alert" I guess. I'm hoping the appt. with the neuro will help relieve some of my concerns.

Thank you again for the supportive response -- though I would never wish epilepsy on another family, it is nice to know that I am not alone with this.
Best,
Anne

Re: Re: Re: New Here, Worried/Concerned...Please Help : (

Hello Anne

As it was said above you are your son's voice. Make sure to let the doctors know everything. Write all questions down. Make a daily list of anything that he does different. Keep track of how he is on a daily basis. It has helped us out a great deal when we go see the neuro.

My daughter has been having seizures for 23 years. She started when she was 3 months old. She was going through chemotherapy with cns involvement. Had two bleeds when she was 5 months old. With her being unable to communicate I have found myself very vocal regarding her. That is the only way the docs will know what is happening. You are his mother and you know him best.

Everything is NOT the same for each child. The way they react to drugs can be totally different than another child. If an when they put your child on a seizure drug(s) make sure to research it and give it at evenly spaced hours apart. At least as close to possible as you can. If you see changes in your son after the drug has been started it is from it. If it is not on the list of "reactions" so be it. Your child is doing it so it is a reaction that he/she is having from it. Just because it is not on the list does not mean that your child is not having it. Sometimes you do have to give the drug a week to a month before the child is adjusted to it.

I would go for an overnight eeg. It will show you what is happening then. How long was the eeg that he had done already? My daughter has been through so many eegs - overnights, 8 hours ones, one hour ones etc. Her seizures are not controlable. Sounds like your son has not had any more since the initial 3. Watch him close.

Make sure you like your neurologist. Don't stick with one that you cannot talk with. I also get a good verbal relationship with the nurse that works with the neurologist. Alot of time I just have to call her and she is able to help me. Yes I still call the neuro office a lot.

If you want to talk let me know how to get ahold of you. Just remember to speak up and know that no question is a dumb question! Ask all the questions you want and again bring paper and pencil and your list of questions and daily log of how your child has been with you to the apt next week.

Been through this a long time and still not used to it. Always looking, hoping and praying for a miracle drug for my daughter.

Hugs

Re: Re: Re: Re: New Here, Worried/Concerned...Please Help : (

Thank you so much for the advice, and for sharing your experiences. Every bit of it is helpful to me. I can't imagine going through what you have been through, especially with an infant. Your daughter is blessed to have such an involved, advocate mother!
Best,
Anne

Re: New Here, Worried/Concerned...Please Help : (

Hi Anne,

I am so sorry you are having to go through this with your son. My 22 year old daughter began having seizures when she was 9 years old. As in your case, there was no history of epilepsy in her family at all (she is my foster daughter). She has been through many different medications and has found more success with some than with others. During her adolescence and teen years, it seemed like we were always having to switch dosages and meds because of hormonal and growing issues.

I also have epilepsy, so I understand from the patient's side how it feels.

There are many treatment options available to your son. You must be his biggest advocate, and make sure you are comfortable with the treatment plan and the concern of the doctors. I would suggest finding an epileptologist (neuro who specializes in epilepsy).

This forum is a great place to get lots of info and support, so I would encourage you to keep posting, asking questions, and looking for info. I have learned so much from all of the wonderful members here.

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: New Here, Worried/Concerned...Please Help : (

Thank you, Barbie! I had never even heard of an epileptologist -- thanks for the tip. I am learning something new every day!

The running theme most relevant to me in all of this helpful advice is that I must be my son's biggest advocate. I have lots of practice with this as I navigate the school system with my middle son who has autism, so hopefully it will come naturally to me now with this new challenge.

Thank you again for the support!!
Best,
Anne

Re: New Here, Worried/Concerned...Please Help : (

Hello Anne!

I am new here too! My son was diagnosed about 2 weeks ago. His first seizure was mid- December (grand mal). I had no idea what I was looking at. He was alone in his room, watching TV, and I heard what sounded like someone gagging. I went to the room and thought he was choking..to the point where I thought there was no saving him. I called 911 and the paramedics came within a minute. They explained to me he was having a seizure, which was ending when they came.

Our pediatrician said millions of people have 1 seizure and never have them again. He wasnt really concerned as my son just turned 15 and rarely had a cold during his lifetime, nevermind any serious illness. He is a high school soccer player, basketball player and baseball player. All A's (except English!), nice, down to earth kid!

It was pretty much what I wanted to hear (that he would never have another one)so we just started going back to life as normal. I was a little nervous, but not him!

On 01/09, about 3 weeks later, I got a call from his school saying he had a seizure during class. I skipped the pediatrician and went right to Childrens Hospital in Boston. After an EEG and MRI (both normal)he decided to start my son on Lamictal.

From what I thought I understood, as soon as my son is at the proper dosage, the seizures will stop. (He had another 01/19).

After spending most of today reading online about epilepsy and Lamictal, I am starting to worry the seizures will never truly go away. Does anyone have experience with being on medication and it working? Will my son spend his whole life changing medications and having seizures?

He is looking forward to getting his drivers license next year and continuing school sports and all other activities he used to do. Im afraid to leave him alone for 2 seconds!

Re: Re: New Here, Worried/Concerned...Please Help : (

Hi,
Your story sounds like mine, my 15 almost 16 year old son was at basketball practice and his coach called because he appeared to black out for a few seconds each practice, took him to the doctors numerous times, they said he needed to sleep more. Finally he had a blackout where he fell to the floor, in the Er they diagnosed it as Absence seizures and put him on 1000 mg of Depakote. # weeks later he had a grand mal seizure, I too called 911 and had him in the er. They increased his dose to 1500 and a week later he had anothr grand mal, raised med's to 2000 per day. They ran an sleep deprived EEG and showed high epileptic activity. A week later I was called on the phone to tell me he has primary generalized epilepsy. I have seen an epileptologist and she said basically he needs to stay on the meds, they seem to be working but I worry about long term. They released him to play B-Ball and Tennis but no football or soccer due to possible trauma to the head causing more seizures. He was also told not to ride his bike, helmet or not. Travis is also looking forward to his learners permit but he won't be getting it any time soon. I will be overly cautious about putting him behind the wheel.
My major problem is getting him to be responsible for this disorder, taking the pills on time and also 3 times a day at the right times and to go to bed and sleep!
Sleep deprivation appears to be critical with this disorder.
I also wanted to know if he would outgrow them, because it seems like alot of teens all of a sudden start having seizures, is it linked to puberty? Do you know the only way they will know if he's ok to stop taking meds is to wean him off and if he has another seizure put him back on the meds? Not very scientific if you ask me!
I spent the weeks after his seizures wide eyed and awake, lost 10 pounds and looked awful. I had to go back to work but think of him every minute of the day.
I hope this helps, realizing there are other parents going though the same things.
They seem to be better about this than the Mom's, Travis keeps telling me to chill out and stop following him around. I did buy a baby monitor and he leaves it on and I was sleeping with it on but I am doing it less and less mainly because he seems to be taking the meds and sleep a bit more seriously.
I know how scared you were, take care and write back,
Lilian

Re: New Here, Worried/Concerned...Please Help : (

I am sorry to hear about your son. Make sure you keep track of everything, food, sleep, seizures, time they are happening...Also make sure he has had blood work of calcium, magnesium, b complex, blood sugar and sodium levels.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: New Here, Worried/Concerned...Please Help : (

Hi Anne, I am also new to this. I have a 8 month old who was diagonised at 5 months. There is no epilepsy on my side of the family or on my husbands side of the family. My son seemed to be a normal, healthy and happy baby. I agree with all the Moms who wrote in before me....be aggressive with your sons treatment. I also found that writing everything down really helps at the doctors and as a release...it is good to get things out. My son was put on ACTH for almost 2 months. It made him cranky and he didn't sleep well. He also gained a lot of weight. It did not stop the seizures. He is also on Kolonapin. They just put him on Topamax. He has been on that for about 2 1/2 weeks. The seizures during the day have lessened but he is awakened at night by the seizures and he experiences head bobs throughout the day with no notice. He is also on Zantac because he has acid reflux. We are going for a 24 hr video EEG soon. Maybe that will shed more light on our situation. You can email me any time at zeets30@aol.com. Good luck to you and your son! Patti :)

Re: Re: New Here, Worried/Concerned...Please Help : (

Hello Patti, My daughter also had "head bobs" when she was under 1 year. She was diagonosed with atonic seizures. She also had complex partial(grand mal). I documented everything as well as video so we could show her neurologist what we were seeing. At her worst she was having over 100 a day. It broke our heart, because of course she was tring to walk. We found that because her head was 1/3 the size of her body(as with all infants) the head bobs we sooo dangerous because of her proximy to the floor. We searched fro meds to help control. No luck. We started the ketogenic diet at 20 months and her atonic seizures went from 100's a day to under 10 the day we started the diet. The diet is not an easy road to go down but it was our miracle for 3 years. We learned to travel with cooler in hand, always we were one meal ahead of the game. Weighing every morsel of food that she ate and monitoring that she did not injest anything for others or the floor as children do was a constant challenge. However, her and our quality of life changed for the better immediatly. At her best on the diet she had one seizure in a 6 week period. We were of course looking for complete control and her neurologist still played the med ying yang game to find something that worked all the time. Unfortunatly, we never got back to the baseline of 1 seizure every six week and she out grew the diet. We took her off 3 mo ago at the age of 5 1/2. We are still searching and being our daughters advocate. Asking questions, researching anything and everything. We are now considering the VNS. Keep plugging Patti, ask questions, you must be comfortable with your neurologist. If you are not, travel and find one that will listen to you. Our daughter has one neurologist 1 hour away, one 4hours away and she has been seen by the Cleveland Clinic in OH. We live in FL. Keep trying and questioning.

Re: Re: Re: New Here, Worried/Concerned...Please Help : (

Thanks for the comments Michelle. I have heard of the ketogenic diet but have not researched it yet. I will look into it. Did you have to have your daughter wear a helmet for protection while she was learning to walk? What other medications is your daughter taking now? What is the VNS? We live in NY and Cleveland Clinic is not too far away. Did you have sucess there? We are seeing a neurologist at Childrens Hospital in Buffalo NY. I do like him and he seems to be aggressive in Tommys treatment.

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