new & overwhelmed

[Forestria]

Hello,

Sorry this is long, but I figured I'd give all the info in one introduction post...

I am not the one that is diagnosed with epilepsy...it is my 16 year old son. He just all the sudden had a seizure a few weeks ago. We are in the process of initial testing.

I was near him when he had the seizure and from my description, the neurologist said it was a focal seizure, but the EEG indicated generalized seizures. Current diagnosis is "epilepsy of unknown type and origin". His paternal grandfather (RIP) and my husband have had seizures, so among other tests, they are going to look at the genetics aspect for a cause.

What makes all this even harder on us is that my son was diagnosed with Sensory Processing Disorder when he was about 5 years old. He is hypersensitive to things that most people have no trouble tolerating, like loud sounds and touch (he doesn't even like me to hug him), so all the testing has been really challenging for him to cope with (he cried during the MRI because of the loudness). Unfortunately, he is also oral-defensive and hasn't taken any type of medications since he was a toddler, but has been prescribed 500 mg Depakote Sprinkles 2x/day. He hasn't started meds yet because the doctor just ordered it and the pharmacy we use didn't have it in stock, so it has to come from a different location and I am waiting for them to call that it is ready for pick-up.

It has not been determined as the cause of the seizure, but the MRI also showed an arachnoid cyst measuring 4.7 cm x 3.5 cm x 8.6 cm beginning near the front and going along almost the whole right side of his head. Luckily, it is NOT in immediate need of removal, but will be watched closely. The idea of possibly needing surgery in the future has him really freaked out.

He is our only child. Due to his sensory disorder, he has trouble being around other people and by his own choice he has no friends. Public school was a nightmare for him so he is in a Virtual High School where he attends teacher-led classes online and I am his Home Learning Coach. I am with him almost all the time so I am the main one handling appointments and trying to help him cope.

~Forestria

 

[seagull]

Hello welcolm.you sound in bad place at the moment.It easy to say don't get upset and worried you going to.There other people like nak who the one to give you information if there is any and I know there is.Your son going through a lot for his age but your strength he will draw from therefore keep yourself well try be cool.i
The anyrism must be a worry but he in right hands and you know what is.my daughter had pulmonary embolism a year ago I was frantic in my nursing days that death sentence but it not these days.she went straight back to normal life that day not say same for me....The doctor told me 20%of population have emboli in heart brain lungs may never know live long full life.these things picked up by accident mostly because of good diagnostic tests which can be double head
Good luck take care

 

[Hobbes]

hi Forestria,

Sounds like you are well in the initial crazy learning curve! One part of the learning is to not burn oneself out. You probably have worked out some kind of balance with previous conditions so you know a lot about how you cope and allow for balance. Still, remember to give yourself more breaks, new coping skills are not a waste of time. Tests take time, epilepsy itself can have a journey aspect as uncovering info takes more time. There are a number of genetic forms of epilepsy that do not run in families and docs may assume a likely cause only to think it's something else years later. Most people don't get all the answers and those answers don't always improve the treatment process.

One of my early thoughts about epilepsy was thinking that it was great that it doesn't involve invasive testing or much time in the hospital. We got wind of likely seizures when our youngest was about to turn six, she had had six minor surgeries by that point (five were shunt surgeries which are brain surgeries but it it is less than most brain surgery while requiring better talent/experience for best long term outcomes). Surgery has some scary aspects but surgeons are an careful bunch. I don't know if you are working with a pediatric hospital but I would recommend pediatric surgeons if it comes to that because they have a different focus than surgeons who mostly treat adults. Plus the pediatric surgeons deal with more unusual issues. Do look up info about ratings of nearby pediatric neurology and neurosurgery departments. Get second opinions if you need them. Not everything seen on MRIs is relevant to the reason one was ordered, many incidental findings occur, some actionable. Our child's first MRI was more confusing than it should have been because the report conflated some findings, but those odd things that are still there but no longer mentioned except for med speak saying 'same as before.' I don't put a lot of stock by a neurologist explaining an MRI, they rarely understand them like a neurosurgeon does, usually they just parrot the report.

Many common meds come in liquids, our child takes liquids or the dissolving tablets.

 

[Porkette]

Hi Forestria,

Welcome to CWE! Epilepsy runs in my family but I found out that it wasn't genetic because all of my family members had tonic clonic (grand mal) seizures and I have had absence and complex partial seizures. I am wondering if your son may be having audio seizures meaning certain sounds are triggering his seizures or it could be the cyst that is triggering the seizure. Hobbes gave you some great info. Be sure and see an Epileptologist and Neurosurgeon team I have gotten the most help from these Drs. than all the neuros I've seen in the past 45 yrs. and they were able to pinpoint the cause of my seizures and keep me on the least amount of med.
Your son is at an age where the hormones are changing a lot ant that can also trigger seizure for some people. I found taking vitamin B12 once a day was a big help for me.
I used to take Depakene the brand name for Depakote and I found out you should never take the med with any type of caffeine or it would send me flying high. Also try and keep your son away from anything with NutraSweet in it that has been proven to cause more electrical activity in a persons brain and often trigger seizures for some people. If your son uses a cell phone and he happens to have a seizure he may be cell phone sensitive. I found this out a few yrs. ago when I was having seizure when people around me were using cell phones. My Epileptologist did a special e.e.g. on me and I didn't know it but they were purposely using there cell phones during the test and each time they turned on their cell phones even just to text it would send spikes on the e.e.g. reading and trigger seizures for me. I wish you and your son the best of luck and May God Bless the Both of You!

Sue

 

[Forestria]

Thank you all for making me feel welcome and all the suggestions and information.

I am not too familiar with all the different types of seizures and nomenclature, but this is what happened with my son:
He usually goes to bed by midnight, but he didn't have school the next day so he was up later and we were sitting together on the couch in the basement family room, playing a video game on the Wii-U (nothing out of the ordinary for us). Around 12:30 AM, he suddenly said "My eyes feel funny". He turned his head really slowly to the left (toward me) and I saw his eyes were open real big and super bloodshot. While I was looking at his eyes, I saw his body begin to move. It was more like small jerks than totally flailing his arms and legs. He started sliding off the front of the couch, so I let him go to the floor. The only thing I did was keep him from hitting his head. I didn't think to time it, but I know it was less than a couple minutes. After it stopped, I did call 911 to have him checked out. The EMT offered to take him to the hospital by ambulance, but I knew that due to my son's sensory issues it would be bad if he came back to himself in the middle of that ride or in a hospital room, so I opted to observe him at home. It took my son over an hour to be anywhere near responding normally and he was super tired. I stayed in his bedroom all night and he slept normally. He is a very picky eater anyway, but when he woke up, and throughout the day, all he wanted was apple juice with ice and popsicles. We discussed what happened and he said that all he remembered was seeing a multi-colored blotch of light and he was turning his head to watch it because it was moving. I got him a pediatrician appointment around noon, and that led to the testing, etc, where we are now.

The EEG did show that he was photosensitive because his arms were jerking slightly when they did the strobe light. We already have an appointment scheduled with a pediatric neurosurgeon at our local Children's Hospital Comprehensive Epilepsy Center and my son is in a specialized group for New Onset Seizures. It is also standard procedure in our area for children diagnosed with epilepsy to see a psychologist at the same time that they go for their follow-up appointments. When we were discussing probable medications and my son's oral defensiveness, the idea of using a liquid form did come up, but the neurologist said that due to my son's size (6'1", 202 lbs), he would probably have to drink a large amount which could prove too difficult for him. That is why we went with the Depakote Sprinkles. Hopefully, we can find a way for him to swallow them whole, but if not, we still have the option of opening them and mixing with a small amount of food.

In regards to the possible need to do surgery for the arachnoid cyst, I think my son is mostly worried about being in the hospital where he has to interact with and be touched by people, etc. When he went for the EEG and MRI, I was in the room the whole time and I could see him tense and cringe whenever any of the staff came near or touched him. He does what they say and lets them do what they need to do, but it is really hard for him to have "strangers" that close. In a way, I am relieved that all of this didn't happen when he was younger because it would have been so much harder for him. At least now, he can understand the necessity of the appointments and he is more tolerable of it all. He does get very irritable, but holds it in until afterward, when he is alone with me. I am not bothered by his grumpiness toward me. I know he just needs to vent and he feels safe being himself around me.

A bit of info in regards to family history of seizures:
My husband has had various types of seizures on and off since about 1967 when he had a grand mal at 10 years old. He told me he was never actually diagnosed with epilepsy, and it was just a seizure disorder. I have not witnessed him have a grand mal, but I know he had one in 2005 while walking home and I got a call that he was in the hospital. He had been weaned off his medication (Dilantan) and was doing well, but had been very stressed out which is what they think caused it. I have seen him have absence seizures where he is non-responsive for a minute or two, but now he is once again med and seizure free. From what my husband described, his father (our son's grandfather) had more than one grand mal, but it is possible he might have had other types of seizures, too. I never met him because he passed away long before I even met my husband. My mother-in-law also passed away before I could meet her, so I didn't get the chance to talk to either of them about all this.

 

[Porkette]

Hi Forestria,

Just like your son I see colors in my eyes often before a complex partial seizure. It could be the video games that are triggering his seizures with all the different colors as you have mentioned he's photosensitive, also being awake for a long time and feeling tired can trigger seizures for many people. I wish you and your son only the best of luck and May God Bless All of You!

Sue

 

[Hobbes]

Forestria,

A seizure disorder is epilepsy, only with less stigma attached to it.

 

[seagull]

Forestria,

A seizure disorder is epilepsy, only with less stigma attached to it.

Very true even I Say sz or black out.i gage the person as to what I say even after all these years..my mother being worse

 

[Kgartner]

My husband has had various types of seizures on and off since about 1967 when he had a grand mal at 10 years old. He told me he was never actually diagnosed with epilepsy, and it was just a seizure disorder. I have not witnessed him have a grand mal, but I know he had one in 2005 while walking home and I got a call that he was in the hospital. He had been weaned off his medication (Dilantan) and was doing well, but had been very stressed out which is what they think caused it. I have seen him have absence seizures where he is non-responsive for a minute or two, but now he is once again med and seizure free.

I agree that it sounds like your son is having complex partial seizures that secondarily generalize (i.e. spread to the rest of the brain and cause a grand-mal seizure). This is what my daughter has as well, and her's started at age 15. Adolescence is one of the time that these types of seizures can show up for the first time.

Also, based on what I quoted above regarding your husband - those sound like complex partial seizures as well. An absence seizure generally lasts only a few seconds, and the person having one often doesn't even know that it has occurred. If someone is non-responsive for a minute or two, it is likely a complex partial seizure.

Good luck! It sounds like you have a lot on your plate, but you are getting good care.

 

[Forestria]

Update on my son--in spite of his oral defensiveness, he is managing to take his medication. He couldn't get himself to just put the capsule in his mouth and swallow it whole with water, so we tried sticking the whole, unopened capsule in the middle of a spoonful of pudding. Unfortunately, it got stuck in his throat, then came back up, so we discarded that one. Then, we went to plan B of opening the D-Sprinkle capsule and mixing contents with teaspoon of chocolate pudding. He stared at it on the spoon for a few minutes, then closed his eyes and ate it. He said it didn't taste bad, but he still had a bit of trouble with the texture it gave the pudding and a few of the tiny sprinkles got stuck in his mouth after he swallowed so he had to flush them down with water.

Both of us were expecting anything from severe drooling to vomiting, which were common when I tried to give him any oral medication when he was a toddler, so we were pleasantly surprised at how seemingly easy this went. I just hope it stays relatively easy even after his dosage gets bumped up to 3 capsules/2x/day next week and then 4 capsules/2x/day starting at the beginning of the third week.

I told him of the possible side-effects, but since he perceives things differently due to his Sensory Processing Disorder, I also told him to let me know if he experiences anything out of the ordinary. In addition, I am keeping a close eye on him to see if I notice anything unusual.

Thanks for all your prayers and well-wishes for us
Forestria

 

[Nakamova]

Hi Forestria, welcome to CWE!

It's good news that you son is able to take the meds. I hope that they work well for him in every way.

 

[mommymowery]

Hi there. I really feel where you are coming from. My 8 yr old son was recently diagnosed and has (so far) partial complex seizures. He also has Developmental Coordination Disorder, an SPD (he is under-responsive however), and an expressive language disorder. Adding epilepsy to all this has been difficult, to say the least. He's not capable yet of telling me if he feels a seizure coming on, and while the meds seemed to help initially, he is now having more seizures than ever. I also homeschool him, because like yours, public school was a nightmare and they were adding low self esteem and anxiety to everything else. I feel so alone most of the time because no one else I know has ever experienced any of these issues, and I just found and joined this forum in the hopes to find some support. Feel free to message me if you ever just need to talk. Also, my son doesn't have the oral motor control to swallow a pill either, and his meds are in a liquid form, in case you can ask about maybe getting that for yours. I just put his in some juice and voila.

 

[Forestria]

mommymowery,

Luckily, my son hasn't had any more seizures. He doesn't really like the D-Sprinkles, but manages to get them down when I open the capsules and mix with a small amount of pudding to keep the bits all together. We decided not to go with a liquid form of meds because the neurologist said the dosage would be sizable considering my son is 6'1" and weighs 203 pounds. Besides, even when he was young, I found it very difficult to hide any med in his drinks or food. His sense of taste is too strong. It might sound funny, but he can actually detect differences among Pringles potato chips, which are supposed to be uniform...he told me some are saltier, crisper, etc. He will start eating a can and stop midway claiming they no longer taste good. After he said that a few times, I tried really hard to concentrate while I am eating Pringles and sometimes I have been able to detect those differences which I had never noticed before.

 

[Forestria]

Latest on my son...

> He has had no trouble with his meds and has been seizure free for over a year.

> He was recently diagnosed with Autism Spectrum Disorder and Anxiety Disorder, in addition to his Epilepsy, Sensory Processing Disorder, and Arachnoid Cyst.

> His most recent MRI of his arachnoid cyst showed no growth or other changes, so he gets to go 2 years without an MRI. Dr said if the MRI in 2020 shows no growth or other changes, then it is likely it will remain the same the rest of his life and he will no longer have to have any MRI unless he experiences headaches or other signs of problems with the cyst.

> He graduated from high school in June 2018 and is currently working part time at his first paying job! It is part of a youth summer work program through a state funded organization that helps people with disabilities. During his 4 hour shift (M-F, 9A-1P), he has a job coach that works beside him to help him if his anxiety flares or he has any other issues coping. He is almost finished with his first week and it has gone quite well.

Forestria

 

[Nakamova]

Thanks for the update! It sounds like your son is in a good place right now. Best of health to and your family going forward.