News on Holden

[SashaC]

He saw the pediatrician Monday. The pedi examined Holden, looked at my admittedly horrible appearance ("You look like a junkie, Sasha," dh had said), and assured me that I could get some sleep.

He said that Holden might have this disorder where kids have seizures when they are going in or out of sleep. I cannot, of course, remember what it was called (you would not BELIEVE the week we've had).

Yesterday Holden had an EEG. The tech told us to expect the results early next week, so when the ped's office called a couple of hours later we were surprised. It turns out Holden does have this disorder and, because some levels on his test were high, they want to start him on Trileptal, an anti-convulsant, asap. We actually started that last night.

The nurse was very reassurung that these seizures aren't dangerous (I'm freaking out because of Jett Travolta), that the medication is pretty good as far as side effects go, and that if we have any questions the doctor will call us (never been offered that before!)

He sees the pedi again the first week of March (previously scheduled to discuss a possible sensory integration disorder) and a specialist from Riley Hospital the last week of March.

So that's where we're at

On top of the above, our attorney is working on about a half dozen lawsuits about the farm bullshit. I'm dealing with it to the best of my ability but, between you and me, it's just principle at this point. I'm so focused on Holden right now that I don't have the energy to devote to anything else. It might be easier to just rebuild come spring.

[BeanBabies]

What the hell happened to your farm?

Did Holden have a lot of seizures? I mean, I'm glad you found out what it was, but it seems so out of the blue.

I'm worried about you.

[Laurens_Mom]

I am glad you have some answers on Holden. What happened to the farm?

[Babyblue]

I'm glad things seem to be moving in a safer and less traumatizing course for holden. I am sorry about your farm problems, if you ever need someone to talk to or vent let me know.

[Wildflower]

I'm so sorry you and your family are going through all this... I hope things look up soon! :hug:

[Sunnie]

I'm glad Holden is ok so far. I will keep him in my thoughts.

What did happen to your farm?

[BeanBabies]

Well, I know that Sasha's cow died giving birth and somehow crushed (and killed) their three sheep (goats?) at the same time.

I don't know where the lawyers come in though. I obviously missed something really big.

[Sunnie]

Yeah, I'm lost too. I'm so sorry about everything though.

[CatSoup]

Well, I know that Sasha's cow died giving birth and somehow crushed (and killed) their three sheep (goats?) at the same time.

I don't know where the lawyers come in though. I obviously missed something really big.


That is insane.

[MrsGinCamarillo]

I'm sorry things are so rocky right now Sasha. If you would like help researching anything, please let me know.

[Nipple_nectar]

I would love to hear an update on the farm as well. We are all here for you, Sasha {{{hugs}}}

I am glad you are making such quick progress with Holden, I do hope this works for him.

[Justicedog]

DD is on trileptal. If you remember the name of the disorder, I'd love to know it as my dd's seizures are only upon waking. However, I think her EEG's show abnormal activity all the time, not just when sleeping/upon waking. However, I think I'll ask the doctor as we go this month.

And, as your doctor said, my dd's neurologist said that the seizure itself isn't harmful to dd's bring. It'd just be any thing that would happen during it - falling down stairs, drowning in bathtub, falling off bike. Most of which I don't have to worry about as she's in bed.

[MrsKitty]

That is fantastic that it is not dangerous. I hope the medicine helps right away. Atleast that is some good news.

I am pretty sure that when Sasha posted about the farm she said she was too stressed to relive it all. When she feels more ready she will probably share.

[still_me]

:hug: I'm glad you have doctors that are on this Sasha. It can be overwhelming when dealing with seizures.

[KerryS]

Is this the same Sasha as Sashahomeschoolingmama or whatever? Why does she have two usernames?

[still_me]

Is this the same Sasha as Sashahomeschoolingmama or whatever? Why does she have two usernames?


She couldn't log in the other say as SHSM. Maybe the same goes for today.

[JudyJudyJudy]

I'm glad you got some answers on Holden; I hope he'll be okay. I also hope the other stuff will work out. Take care.

[Earthmama]

Hugs to you. I hope everything improves.

[Ilovemonkeys]

Sasha, i'm thinking of you.

My dd has migraines and we've been round and round with the neuro and the EEGs, there are apparently a lot of subtle seizure disorders out there that are never caught until it's too late. It's scary.

big hugs, seriously- if there is anything I can do, I will. I owe you one.

[SashaC]

Kerry, I can only post as shsm on my laptop, which died the other day. Its at the computer repair shop and should be back next week. I'm on my blackberry right now and had to register a new account.

I will tell the farm story as soon as I can post from a computer--it's too long to type on this thing.

Justice, the nurse is supposed to call me back with the official name for what he's been diagnosed with. When she does I'll pass the name along to you.

[SashaC]

Justicedog, he has Benign Rolandic Epilepsy (BRE).

[Tweet]

I am so glad he is doing ok. Not that I'd ever wish anything on a child, but you are fortunate it was caught on the EEG. We've long wondered if DS has the same type of disorder but nothing shows up on his EEGs and so meanwhile he won't be medicated, but still has the symptoms. I don't want Holden to have ANY of it , but am so relieved that it is treatable and the drug has minimal side effects.

I'm still thinking of you all and wishing for the best.

[Sadalsuud]

I'm so glad they were able to find out what is going on with Holden. It is great that the treatment has minimal side effects.

[MoonBound]

I am glad you have an answer for what is going on with Holden and a treatment plan.

[MiMi_of_4]

Glad to hear things are looking up a bit, Sasha.

[Justicedog]

Justicedog, he has Benign Rolandic Epilepsy (BRE).


Thank you. I think I'll bring this up to dd's neuro and see what he has to say. Although after reading my book, it doesn't seem like what my dd has. I think the eeg wasn't normal for any specific kind of seizure.

It says that the prognosis is good for children who have benign rolandic epilepsy. It says taht it's likely to be outgrown in adolescence. It says that in many or most cases, the seizures are infrequent and do not require medication. It says there may be a genetic predisposition to this type of epilepsy.

Hopefully, you'll be able to get some sleep.

[Wolverine]

I'm glad to hear that the disorder is treatable. In that situation, that's the very best news that you could get. I hope he continues to do well and you continue to have cooperative, supportive medical care.

Please, try to get some sleep. Even if your dh needs to stay up and watch over Holden so that you can be more comfortalbe... you need rest.

[SashaC]

Ugh, he had another seizure last night. Rather than the grand mal type that he had last week, this was facial ticing, drooling, unresponsive...we did a just-in-case trip to the er at the suggestion of his pedi's afterhours nurse.

It was pretty scary because for twenty minutes we just couldn't get him to respond at all. He had fallen asleep and I was trying to wake him up to take his meds. It seems like waking up is his danger zone.

My immediate next step is to start a Holden journal. His seizure last night we've actually seen before--we'd just chalked it up to him sleeping as hard as he plays, as he's very active and sensory seeking. I'm going to start documenting him for a time to help trace triggers or whatnot. Anything that might be helpful.

It is somewhat frustrating that I pretty much have no idea what my family history is on my dads side. The drs keep asking if there's a family history and I feel stupid saying "I don't know."

[Justicedog]

I'm sorry to hear he had another seizure. That's more like the ones my dd has. A journal is a good thing. Lots of times, that's what the doctor has to go on - your description of the seizure.

[nikkifaith]

I am so sorry, sasha.

[PiccoloRose]

I'm so sorry, Sasha. Y'all are in my thoughts.

[MiMi_of_4]

Sorry to hear that, Sasha. You've got a lot on your plate right now, honey. Hope things calm down and you can get back to *normalcy* really soon.

[Bohemian]

I'm so sorry to hear Holden had another seizure. I'm thinking of you all and hope things start to turn around for you. :hug:

[nikkifaith]

This has got to be the dark before the dawn. Something great is around the corner for you, Sasha. Just hold on til then.

[MoonBound]

sorry to hear he had another one.

[_Viva_]

I'm sorry you're dealing with all of this.

Let me know if you need anything.

[MMof5]

Still thinking of you!

[Wolverine]

I'm so sorry, Sasha.

I have been thinking of you and your family.

[Earthmama]

Sorry to hear he had another seizure - but hopefully your journaling about him will help you identify the triggers like you think.

Big big hugs. And a couple more for when you need them.

I'm with Nikki - hopefully this has been you getting all of your negative happenings out of the way so that the rest of your lives can be uninterrupted bliss.

[MiMi_of_4]

Thinking bright, sunshiney thoughts for you today, Sasha!

[SashaC]

Today is pretty bright! My mom had her gallbladder removed yesterday with no complications, my laptop should be fixed today or tomorrow, and Holden had no issues yesterday.

I got to thinking, I have a very small, portable videocamera. I really should keep it out because Seryozha is having so many 'firsts', but I could also videotape any of Holden's seizures to show the neurologist. The pedi said that, in addition to the brainwaves on the eeg, parent's descriptions are the most important parts of diagnosis.

So my videocamera is within reach at all times.

Today is a good day. Goodness knows I need one.

[CatSoup]

good to hear :)

[kohlby]

I'm glad you're having a good day!

[MoonBound]

glad you are having a good day. the sun is shinning here and I plan on taking my little ones out in the sunshine.

[Babyblue]

the video camera is a great idea.

[Justicedog]

Today is pretty bright! My mom had her gallbladder removed yesterday with no complications, my laptop should be fixed today or tomorrow, and Holden had no issues yesterday.

I got to thinking, I have a very small, portable videocamera. I really should keep it out because Seryozha is having so many 'firsts', but I could also videotape any of Holden's seizures to show the neurologist. The pedi said that, in addition to the brainwaves on the eeg, parent's descriptions are the most important parts of diagnosis.

So my videocamera is within reach at all times.

Today is a good day. Goodness knows I need one.


That's a good idea. It's amazing how unobservant I feel when I have to describe a seizure to the neurologist.

[MiMi_of_4]

:happydog::happydog::happydog:

[Earthmama]

Wishing you enough sunshine to get through the nights. (But not so much you don't get any sleep.) :)

[JudyJudyJudy]

Sasha, I'm glad you had a good day, and I hope you have many more.

[jessiehannan]

I am glad it isn't dangerous for Holden Sasha. I hope you get all the craziness calmed down soon.

[Ilovemonkeys]

Hi Sasha, I can't remember my Xanga password to comment on your blog. I just wanted to let you know i'm still thinking about you.

[RedMamaBear]

Keeping a candle lit in your name, Sasha. Update when you can. "cathug"

[Wolverine]

I hope today was another good day.

[Bellaelle]

Thinking of you and Holden.

[MiMi_of_4]

Sasha, I can't comment on your blog :( Am still thinking of you all...