update on my son, Brandon

[Jenn]

Another update, MRI results

Brandon had his MRI today and his doctor was great and already called me earlier with the results. His MRI is normal, which is great news and a big relief! Since his EEG results were abnormal, we meet with the neurologist next for baseline testing and to start treatment for, most likely, seizures. I won't know much more until we meet with the neurologist, but Brandon's pediatrician will help me get Brandon in asap to get treatment started for him. He has been having several espisodes a day and does seem like they might be getting a bit worse. I'm just so happy we decided not to wait to get in to Children's in February, but instead pursued local doctors who could get us in much sooner. I don't know much about seizures, but have read that in children, they can either outgrow them, which is what I hope for Brandon, or they could worsen and become grand mal seizures later on. I hate the idea of Brandon having to be on any type of medication, but I am so thankful that we are down a treatable road and we can help him lead a more normal lifestyle again.

I thank all of you who have supported us, and I'll update again after we meet with the neurologist.

 

[momenteller]

Good to hear about the MRI! Hopefully the neurologist will be able to tell you something...

 

[cindyv3737]

Great news on the MRI. I'm keeping m fingers crossed for you both. I hope all of this gets resolved soon.

 

[alpayton]

If indeed the problem is seizures, I'll pass on the tidbit of information that my son's pediatric neurologist told me. "A seizure does not hurt the person having it, it only hurts the person who's watching because they're not able to stop it."

Pierce started having seizures when he was 5 days old. He was admitted to Kosair Children's Hospital in Louisville where they did everything to find the cause of these seizures (MRI, EEG, spinal tap, marathon questioning of his father and myself). Long story short, they determined that there was a pooling of blood at the base of his brain that was putting pressure where there shouldn't be, causing the seizures. They started him on Phenobarbital, but because of the developmental delays that oftentimes accompany Phenobarb, they limited the dosage to the bare minimum needed to stop the seizures and weaned him off of it totally at 6 months of age. He has had 1 seizure since then, 1 year after the initial ones, and that time, it was much much worse. However, the last one was determined to be a febrile seizure and upon follow up with his pediatric neurologist, we were informed that once someone's body knows how to seize, it will seem to seize in reaction to many different situations, which is why he went into seizure so quickly and easily the last time. Now, since that last seizure almost 10 years ago, everything's been fine. No seizures, no issues whatsoever. He's not on any preventative medication at all and hasn't been since he was 6 months old.

Just wanted you to know that there are others out there who have been thru similar situations and hope that everything turns out for your son as well as it did for mine. I wish noone to have to go thru that and I'm sorry that you're having to. If you need another contact for an absolutely outstanding pediatric neurologist, Pierce's doctor was Vinay Puri and he's still located in the Norton Healthcare System at Kosair Children's Hospital in Louisville. Nothing but the best of words for him and his office staff.

Best of luck and many prayers being sent your way.

 

[Jenn]

Thanks for the info, Amanda. Brandon has been having several seizures a day and they seem to be getting longer, and he is taking longer to come fully aware of his surroundings again. I understand that they may go away completely as he gets older, but that there is also the chance that they could progress to grand mal seizures. I also hate the idea of having to medicate my son. I prefer to stay away from medications, because most have unwanted side effects. But I certainly want my son to live as normal as possible, and will do what I have to to make that possible for him.

Brandon does not seem to be bothered at all with his episode, he takes it all in stride. I'm very proud of him. I'm a mother and I worry. I want the best for him. But I know there are much scarier concerns out in the world than what he is going through, so I can't be overly upset. My biggest relief was that his MRI came back normal.

Brandon's visit with the neurologist is on Dec. 13, so I will have the opportunity to find out a lot more about what is going on with him at that time.

 

[Sandi]

Wow Jenn, I am happy as you and everyone else is about Brandon's MRI results. I saw my husband have a seizure once and I panicked. I understand for the most part Brandon is ok but to watch that happen must be a little heartwrenching at times. As Amanda said, you hurt not being able to help at that moment but you are an amazing mom, so stay strong for your son! Hugs and prayers are being sent for you and your family!

 

[Jenn]

thanks, Sandi, I really appreciate your kind thoughts and words! Being a mom is the best thing that has ever happened to me...it totally changed my life.

 

[CTChin]

That's good news Jenn. It is understandable that you are worried. Heck my daughter is 23 and I still get sick to my stomach with worry when she has a health issue. It's hard when you have a person in your life that you love way more than yourself. I pray your little guys seizures go away.

 

[Jenn]

Newest update...

Brandon, after all of his testing, saw the neurologist who diagnosed him with having partial complex seizures. Not the same as a petite mal seizure...a step up it seems. The neurologist is 90% sure this is what is going on with Brandon. But he also said that the average patient has 1 to 2 a month, and Brandon is having up to 7 a day. So he suggested we do a 24 hour EEG so seizures can be caught and looked at. He goes in to Swedish Hospital on Monday, Dec. 27, and checks out on Wednesday. My hubby will be going down with him - about a 2 hour drive from home - and I will stay home and take care of the house, animals, and Josh. I kind of feel lost not being able to go and be there with him. I'm just hoping this is the last test we need before treatment is started. But I've hoped that a lot and here we are at more testing! At least Brandon is going down during winter break from school and won't be missing 3 days of school.

I'll post another update for those of you who are interested, after his hospital stay...

 

[leni]

Got my fingers crossed that all goes well Jenn.

 

[~SG~]

Please update us! I'm sorry you can't be there too. I know when one of mine went to emergency room and I had to come back home to tend to the other kids all I did was worry and stress over the one at the ER. We will be here for you to chat with if you need us
~hugs~ to you and your family

 

[momenteller]

Oh no, poor guy! Overnight stay at the hospital does not sound fun. Please let us know what they find.

 

[Jenn]

Thank you all for your support. Brandon actually has 2 overnight stays - he checks in at 7:30 a.m. on Monday and checks out sometime on Wednesday. I'll try to send enough movies, ds games, and books to keep him occupied. My hubby will be equally bored, I'm sure. I'll try to talk by phone as much as I can, too. I know he'll be fine, I just wish he had both of his parents there to offer him support through this.

 

[emily]

Hi Jenn,

I just thought I would let you know not to give up on the doctors and make sure they do every test possible. My brother had the same symptoms, but his seizures got really bad, and eventually thourhg several tests they found a brain tumor, which was causing headaches, seizures and trouble focusing in schoool, as well as day dreams. The tumor caused depression, etc.

Once we foind the tumor, we booked surgery and it was removed, a biopsy was done, and it was non-cancerous. The seizures have stopped and he is now in college with an above 90 average.

Also, I was not able to be there for my brother, while he was in the hospital, throughout the entire length of time as I was in university, but Brandon will know that you are in his heart throughout this entire process. It may seems hard right now, but boys are much stronger than you think.

You will get through this with prayers, good thoughts, patience and closeness.

My best wishes to you and your family during this rough time.

 

[tunes]

Jenn, sounds like this doc is ready to get to the bottom of this. I'm really surprised in a child with seizures that they didn't do an EEG before. We will all be sending Brandon healing thoughts and hoping for the very best outcome.

 

[Jenn]

Peggy, they did do an EEG already, which showed something abnormal, which is why we proceeded to an MRI. But since Brandon has so many seizures a day, the doctor wants to do an extended EEG to actually catch him having a seizure while being monitored. Most people with the same type condition have 1-2 seizures a month and it is very difficult to capture one during an EEG. Brandon makes an excellent candidate and will most likely provide many seizures while having his EEG, and the doctor will know more about what is going on with him and treat accordingly.

Emily, I'm happy to hear your brother had a happy ending to all of his issue. How horrible that must have been for him and your family during this. Brandon did have an MRI performed which did not show anything. We just wonder why he went through 12 years of life before having seizures start up. The neurologist mentioned something about hormones, but I really need to do some research so I can learn more about what is going on with him.

Thanks for everyone's support. It really does help to "talk" this out. I don't have a lot of people around me to communicate my concerns, and you are all a big help!

 

[emily]

Peggy, they did do an EEG already, which showed something abnormal, which is why we proceeded to an MRI. But since Brandon has so many seizures a day, the doctor wants to do an extended EEG to actually catch him having a seizure while being monitored. Most people with the same type condition have 1-2 seizures a month and it is very difficult to capture one during an EEG. Brandon makes an excellent candidate and will most likely provide many seizures while having his EEG, and the doctor will know more about what is going on with him and treat accordingly.

Emily, I'm happy to hear your brother had a happy ending to all of his issue. How horrible that must have been for him and your family during this. Brandon did have an MRI performed which did not show anything. We just wonder why he went through 12 years of life before having seizures start up. The neurologist mentioned something about hormones, but I really need to do some research so I can learn more about what is going on with him.

Thanks for everyone's support. It really does help to "talk" this out. I don't have a lot of people around me to communicate my concerns, and you are all a big help!

I was going to say, these things just tend to POP up...nothing was wrong with my brother until he was about 16 years old.

I really truly hope they figure out what is causing this.

Also, try not to research too much online about it...it tends to make things A LOT worse as people generally only post their worst and most extreme medical experiences, and no good one. I found that helped me a lot. And doing little things, like making cards, and videos, etc.

 

[mishellyshel]

sorry i missed this thread.............i wish Brandon and your whole family the best and hope that they can figure out what exactly is wrong and treat him.
maybe you can send your favorite picture of you & him in a frame to put by his bed.
i always send a pic of me and my son when he goes on vacation with his dad! he tells me he kisses the pictures each nite.

 

[Jenn]

ah, Michelle, that is such a great idea about the pic! Thank you! I think I shall do that for him, and then it will be like I am with him.

 

[Sandi]

i always send a pic of me and my son when he goes on vacation with his dad! he tells me he kisses the pictures each nite.

That is really a sweet idea Michelle!

Jenn, as always my thoughts and prayers are with you and your son! I'm glad that it helps that we are here for you if you need us. Stay strong for your son!