Hi! Glad you stopped in. How are you?

[CasaDe]

As the title says...

We're fine. Jimmy had some of his classic prodromal symptoms :eek: but then developed a nasty cold, so we're chalking it up to that. No seizures still! Also, since he's sick, we cancelled our appointment with Dr. DS. Sounds counterintuitive, but I'm glad I don't have to see the guy :D! We are going to request an EEG for a few weeks after the Prednisone wean and prior to weaning any Klonopin to decide if it's a good idea or not.

SOOOOOO...

How are YOU?

[Mom2Ava]

We are doing well here in Maine. Can't wait for the snow.

Ava is doing great. No sz or signs of sz.

Pam,
Hope things continue to go well after the wean is completed.

Did Cleveland tell you what you can expect?

[nick's mom]

hey pam,

i'm glad you started this thread and even happier to hear how well jimmy is doing. i can understand canceling that appointment. those appointments can be so frustrating, so why put yourselves through it when he's doing so well.

jen, it's great to hear how well ava is doing too. enjoy that snow. it's 80 degrees here!

we are doing ok. waiting for the cath on the 14th and praying it stops nick's endless neuro stuff. the headache across the back of his head has been constant for almost a week and intermittent for the 2 weeks before that. the foggy, flipping, far away, dizziness and big/small have come and gone for several weeks, always with at least one of them going on. word finding is getting worse, but he seems ok otherwise.

hoping to hear from the neurosurgeon soon too. he should have had all nick's records for a week now. i'll probably try calling or emailing him again early this week. if opening up the stent doesn't stop all his symptoms, i'm hoping the neurosurgeon can help us figure out what's going on.

hoping you all have a wonderful week!

[CasaDe]

Can't wait for the snow.
Same here, though all the snowpants and boots are outgrown!

Did Cleveland tell you what you can expect?
No. Apparently they don't do steroids terribly often. It's one of those unknowns - it will either work, or it won't, or we'll think it's working but it will give out over time. As usual!

[Mom2Ava]

Same here, though all the snowpants and boots are outgrown!

Do you have good children's consignment stores where you live?
There is one I go to often ... I sell them Ava's old toys & clothes ... and buy her new ( used) toys and clothes there.
Or we go to the outets when they have clearence sales.

[Guitarmom]

Hey there, Checking in from N.East CT....I am working on a MAJOR Project (actually stalling on my CT project but working on a greater one that Jen has an incling of I think)....

Sam has yet another cold while still being treated for his sinus infection! (argh!)....still no more seizures since his last so I am pretty happy about that. He has been on Topamax nearly 7 weeks and only has had 2 seizures in that time. Both were provoked by the sinus infection and 10 days apart!!:D . Prior to this he had WEEKLY seizures!! Lasty june/july time frame he had 2to 3 each week! So cutting down on Lamictal from 450 to 400 reduced by 1/3 the number of seizures, adding Topamax has cut yet another 1/3!! Unfortunately we do see a downturn in mood,but it is a down turn and not depression. We see some leveling in between the dose increase so this gives hope that he will not continue with this trend. He is selling his Depression awareness T-shirts and Hoodies, PRo-life as well and continues to build his inventory weekly. This has been a great thing for him to start and become passionate about. He is selling them at youth group for now. My migraines have been a bit challenging but that is ok.....

Jen, I used to sell the kid's things at a consignment shop and it was a GREAT way to do things!! I miss those days!! Sam still finds some great deals at Salvation army though!!

Pam, SO glad it was a cold and not worse! Good idea to cancel with Dr DS< I hope you can get the EEG done! I hope the wean can go well if you decide to do it!! Sure do not want anything to change for Jimmy!!

Luanne, hoping that the neurosurgeon gets back to you sometime soon after looking at the scans!!

Hugs to all!!

Ginny

[hmw74]

Hi Pam! *smallheart I was happy to see this thread here tonight; I'd been thinking of posting an update and wasn't sure where to put it! ;)

Oh man, your heart must have been in your throat to see that typical prodromal stuff from Jimmy!! I'm so glad that no sz came of it... but I am sorry to hear he got sick. :( How is he feeling now? I don't blame you for that sigh of relief over not having to see Dr. DS!! It makes more sense to have that after the EEG anyway (and yes, having an EEG once the steroids are completely out of his system but before any other changes are made sounds like a very good idea.)

Jen, I'm glad you and Ava are doing well! Hooray for Ava and no sz! :D And if you want the snow... OK, you can have it! LOL! I am still mourning the death of all my flowers when we had our first killer frost 10 days ago... but after that, it went and got pretty warm again- and didn't get cold again till today, when I saw 30* and was scrambling looking for gloves 10 minutes before the bus was due to pull up! :eek: I ended up with about 25 assorted mittens and gloves all over the place in the breezeway, plus hats and scarves and other such things. Those mittens and gloves multiply in dark places, you know... but never reproduce matching colors or sizes and I also couldn't believe how many of them I am certain I never saw before. :confused: Boots? Oh no... at least one kid still needs them- and I cannot figure out WHAT happened to Timothy's heavy coat! :confused:

Luanne, I am so sorry that so much has continued for Nick. It's got to be exhausting for the both of you to keep this up. :( Eight more days... counting it down, and hoping for dramatic relief to come with the cath as was seen in the past. I agree it's likely time to start trying to contact Dr. PedVNS; he should have had time to look over Nick's stuff- or if not, hearing from you should bring it to the front of his mind and hopefully get him moving on that!!

Ginny, I am just thrilled for the progress that Sam is making on Topamax!! :D :) :D I just hope he can kick this sinus infection soon- and hopefully he'll get a chance to see the sz count diminish even further! (Well, that and feel better too.) Wishing the best for your new project too. *smallheart

We're all fine here. A 2nd opinion neuro appt is in the works for Tim.

[mjcolenc]

Glad to see how everyone is doing. Hate the change in weather because it seems to bring on all of the colds and sinus junk.

Sean hasn't had any recent episodes so I'm happy about that. Just the problem of him getting around because of his broken toes and using crutches. I will be glad when November 30 comes and he gets the cast off. Asked his inclusion teacher to check him out for Dyslexia because I'm concerned about the way he does numbers. For instance, he reverses numbers when decorating birthday cakes. Has done it for years. He reversed the 4 and reversed the 9 on my cake Sunday. From the back, it looked like 94. His teacher thought it was very interesting and said she would talk to his other teachers and look at his work and compare to a check list she has for Dyslexia. She said of course, his handwriting is terrible.

[Mom2Ava]

.I am working on a MAJOR Project (actually stalling on my CT project but working on a greater one that Jen has an incling of I think)

Me Jen????
You starting w/o me?!?!?!?!?!?!
:)

[Mom2Ava]

Jen, I used to sell the kid's things at a consignment shop and it was a GREAT way to do things!! I miss those days!! Sam still finds some great deals at Salvation army though!!
I like the Salvation Army too ... actually it also is a good way to save some money, beside buying used I mean. We donate all of our clothes to the SA ( the stuff we do not bring for consignment), and save some money during tax time. Last year a saved a few hundred $$$.
I really like certain brands of clothes & shoes ... but am never willing to pay full retail ... often I can find them at the Salvation Army. Up here is Maine, you can always find tons of LL Bean stuff ... often new!

[alizesmom]

Good to hear how each of you are doing. Sorry for those with sick kids. I hope that's not a clue about this coming winter. We're supposed to get a little snow tonight. Alize has had no further seizures since the increase in Keppra. Karen

[shanunlee]

Been busy trying to stay on track with the kids' school and keeping the house in order. I am feeling much better.

Neuro appt. last Thursday and we agree Lamictal is doing a good job since we haven't seen an obvious seizure in 6 months. He gave me another month's worth of meds, so we are covered till the beginning on January. Maybe God will work a miracle and provide some insurance for her by then.

We talked about the learning difficulties and both agree that it is not the Lamictal causing trouble, but an underlying learning disability. He thinks it may be ADD and I don't deny that theory. I am not anxious to throw her on another med though, so for now I am just going to keep giving her extra attention with school. There is a year wait for the NP test so life goes on.

Braces come off Thursday and my oldest turns 18. Good grief! Can I REALLY be that old?

If I don't come around again before Thanksgiving, I hope you all have a blessed holiday!

Shannon

[Guitarmom]

"Me Jen????
You starting w/o me?!?!?!?!?!?!"

yes you Jen, but no I have not started THAT Project yet.....Lol.....That one is still in my head thought...>ACtually, this one is one we talked on PM about and involves the links you sent......I am working on starting a charitable non profit similar to that family that you showed me and trying to do what that family did but for a different Epilepsy Program.....I will present this idea in full very soon....

I hope I am not biting off more than I can chew!! I am excited, scared, determined, scared, thrilled, scared.....determined.....really really wanting to do this!!

but yes, we still need to move forward with the OTHER Project too!!

Ginny

[Mom2Ava]

I hope I am not biting off more than I can chew!! I am excited, scared, determined, scared, thrilled, scared.....determined.....really really wanting to do this!!


Ginny

Just take little bites Ginny. Can't wait to hear more.

Are you starting with a website? Or will you do a website later? Or not at all?

[CasaDe]

Alize has had no further seizures since the increase in Keppra.

HOORAY!!! *hoppinstar *boogie Just the news I was hoping for!

I am feeling much better.
More great news!!

Can I REALLY be that old?
No, Shannon, not possibly!

Ginny, I'm glad that Sam's seizure control has improved so much!! :D
I'll stay out of the "secret project" discussion (detective emoticon here), but I wish you every success!

Harriett, I am sorry that the night terrors are back! That is very hard to hear. I'm glad for the neuro consult, but very, very sorry that it's necessary. :( :(

We have a Salvation Army here, but everything I've ever seen there is broken, torn, or otherwise unusable. Maybe I'll run in, anyway. If others are like we are, the snow boots don't get worn out before they get outgrown!

(((((Luanne))))) Hoping for better days for Nick, and SOON!!

[hmw74]

Thanks Pam. I've been wanting to post for a couple weeks now... and finding it really hard to do so when things get like this. I need the support and badly at this point, I am feeling overwhelmed w/ it all when it comes to stuff with Tim.

[Mom2Ava]

We have a Salvation Army here, but everything I've ever seen there is broken, torn, or otherwise unusable. Maybe I'll run in, anyway. If others are like we are, the snow boots don't get worn out before they get outgrown!

I think every SA is certainly different. Our big city SA ... you are more likely to find junk, but on a good day can find lots of good stuff. One of the smaller SAs, is where I often find the good stuff.
The consignment store I regularly shop at ... there is always good stuff.

[Guitarmom]

I have proposed the websited, but also asked for a time to make the full proposal in person to make the case. I did have the other one printed up when I went to Albany, but missed a chance to speak with him in person. I sent him an email to set up a time to speak. I am in the process of contacting places now for funding. I have to set up a charitable trust (and learn how to do this legally!!) .....

I do have a few (dozen) things rattling in this old brain!! I also have our things going on in there too! We need to talk !!!

I also have to get moving on the State trooper training in our state. I finally have the OK from my Exec Director that my way is "perfectly ok" after she took 8 months of trying to stop me from doing it....I started this in Dec last year, then taught 3 trainings and was recommended to the State Police Academy and she said WAIT NO< we cannot do this! You have to do it HER way.....We need to get the curriculum and teach it ...XYZ, and stalled....meanwhile a man died in custody 20 minutes from my home....
a child of a Police officer had a seizure in a mall, ( he is supposed to be doing training with me).....and the Police WANT this training I was doing!! SO< Now I can start again, Barracks by barracks, because NOT the Academy is not ready any longer......

anyway......

Ginny

[Guitarmom]

Harriett, I am so very sorry that the terrors are back. I know that this is a very hard thing for you to talk about! I hope that Dr Young can help you come up with a plan to figure this out. I know you have had to put off testing in the past as other things have gotten out of control! It is time to get this figured out for Tim! You have so much with all 4 of you that you have had to deal with already over the years!! I hope that you can finally get the answers and control of this to get this to stop at last! 8 years of these terrors is just unimaginable!! TIME to tame this!! It just takes so much out of you and has too much impact into other areas!!

((((Harriett))))

Ginny

[CasaDe]

*hug Harriett *hug

We're here for the struggles, too! *heart

[apmom]

Just wanted to pop in and say HI:D to everyone.

I'm feeling a bit maudlin these days. :(

((((((((((Harriett)))))))))))*heart

[Mom2Ava]

I'm feeling a bit maudlin these days.

Sorry to hear this Anne.
*hug

[Guitarmom]

;) Monday (or whatever day I get the nerve) I call Dr B's assistant to make an appointment with him to make my presentation for my BIG Project! SO this weekend I have to finish my homework!!

I have a migraine to go wiht my sinus infection (Sam shared his latest cold)....
but he has not had any seizures....;)


I have 5 paragraphs written on my book too! lol....

Ginny:p :p

[hmw74]

Timothy has had horrendous night terrors the last 4 out of 6 nights... after having really bad nights of multiple terrors Wed. and Thurs. night he woke up Fri. morning and then lost it over something really stupid and was punching, pushing, kicking me... He had another tantrum at bedtime (before meds) with some punching, etc. This is the first time in MONTHS we have seen this type of thing. These terrors bring on so much awful stuff, it is NOT a simple sleep disorder and the behavior/related stuff is not a completely separate disorder either. WE NEED ANSWERS NOW. I am so tired of it all. His psych told us Klonopin for the weekend and we will talk more on Monday... the Klonopin worked last night; no terrors; but he's still sleeping. I hope he is human today.

[CasaDe]

(((((Harriett))))) *hug

I know these cyber-hugs aren't enough but it's all I can do. :(

We're at an odd cross-roads sort of day here; not sure if we're going bad or good. Since JRun is around again :mad:, of course I'm in need of a lot of support!

Okay, here goes: Prodromes became seizures, and he's had two, but as most of you know, two is usually the tip of a big, nasty iceberg ending in a long hospitalization, major med changes, loss of cognitive ability and general upheaval and broken hearts. And we haven't recovered from the LAST bout yet!

He's had a cold, but he's never had illness-triggered seizures in the past. However, the Prednisone wean is over as of today. This is my thinking:

Adding the Zonegran may not have been a good move. With EVERY med addition we've done (Keppra, Lamictal, Topamax, Dilantin twice), we've seen massive seizure increase, but with the Zonegran we added Pred and Klonopin at the same time. I'm thinking that the Pred wean is now revealing the effects of the Zonegran addition.

This is completely contrary to rational thinking, though. This means the doctor may want to raise the Zonegran (DH, too), but I'm thinking, with Jimmy's peculiarities, that might make things worse. But it's contrary to everything I know to reduce the Zonegran, and no doctor is ever going to agree to doing that!

Cleveland has become inaccessible, due to nasty billing issues. Dr. DS will almost certainly NOT call Dr. Wyllie for consultation.

We have an appointment with Dr. DS on Tuesday. So far we have NOT told him about this - his reaction will be either to ignore us or overreact, so we want to be in a position where either his overreaction will be welcome or we're ready to fight for what we need.

Of course, maybe this will all blow over and all this circular reasoning will come to nothing!

If you pray, please pray that this LAST option is the one we end up with!!

I am intentionally burying this in another thread because I was not even sure whether or not to come out of the denial shadows with it.

[apmom]

Thanks Jen.

Ginny--Good luck getting everything done for your presentation, how exciting. :D Sorry about your migraine, I know this damp weather isn't helping mine either. Woo Hoo!!!! on no more szs for Sam.

Harriett--You must be exhausted. :( I'm so sorry you've seen a return of the horrendous night terror/behavioral stuff for Tim. That kind of thing is so frightening for everyone. Hoping the Klonopin gets him through the weekend, it will be easier to move forward next week if you and he have gotten some decent sleep. My heart aches for you. Yes, you DESERVE answers.

*heart

[apmom]

(((((((((Pam))))))))

We posted at the same time.

Oh, hon I am so sorry you are seeing all of this. :( It's brutal, and unfair to you all. :mad:

I have a couple of thoughts. 1) I wouldn't be so quick to reduce Zonegran, because so many changes were made at once, and I believe the chemical make up of Zonegran is different than what he's been on in the past, I think you need to keep your mind open, for a little while.
2) Jimmy being sick and illness triggered szs. Illness hasn't generally been a trigger for Olivia either, BUT when she got sick right on top of the dental abscess last Spring, it was a different story. I wonder if the two together lowered her resistance enough to slam her. Because Pred lowers the resistance also, I'm wondering if that could be at work here. :confused:

How IS his cold?

Praying, praying, for wisdom from Dr DS on Tuesday. I'd like to think that if necessary, Dr W will still take or return a phone call from you, even if a face to face appt is impossible right now. Again though, I would probably wait a bit to see where this is headed before calling, in case this is a limited option.

*hug for you, my friend.

[nick's mom]

((((((((((pam))))))))))))

wanted to add my hugs

*hug *hug *hug

and know that you will all be in my prayers.

*heart *heart *heart

[CasaDe]

I *heart you guys!

You're so right, Anne. I really don't want to reduce the Zonegran abruptly!! I was probably thinking too hard when DH said, last night, "Well, the only choice is to increase the Zonegran." Adding it was an internal struggle, so increasing it will be, too, if it comes to that.

His cold (this is day 8) is to that stage where it's hard to blow the gunk out, but there isn't too much gunk and it's a nice normal color. He's finally getting to the coughing stage, which is his normal route for a cold but really :eek: flips DH out. No fever. The same cold lasted 2 days in Hannah and DH, so the Pred is definitely giving him a hard time with it.

Thanks so much, Luanne!! The prayers are priceless.

Holding onto the "hope rope" you've tossed me, and tying a knot at the bottom through prayer!

[Guitarmom]

(((((Harriett))))))

I am so sorry that you have had such hard nights with TIm....lack of sleep for you, the fears of WHAT is going on......I hope that you can get the answers and get these to STOP soon! I hope he is HUMAN Today with the break from the klonipin....:mad: hating this starting up again!

(((((Pam)))))) I can understand your thinking about not wanting to increase the ZOnegran...I also see why DH would panic and want to go up....(Nooooo)

Adding in my prayers for wisdom and for DS TO listen for once!! I do not like how he does not like to have other doctor input or the billing mess that is cutting you off from CC.......praying for celestial scissors to cut red tape!

ginny

[Mom2Ava]

Because Pred lowers the resistance also, I'm wondering if that could be at work here.

Exactly what I was thinking too.

*hug

[CasaDe]

Well, so far we're holding our own - no more seizures, but still prodromal. That is good - usually we start with a seizure or two, a day or two off, then more seizures. In the rare instances when we've had isolated seizures, there were no prodromal signs, and no follow-up seizures, either. Hopefully his brain is backing its way out of this yucky zone.

Sadly, though, I saw something we hadn't seen in a long time (you know how that is - you see it and then realize it's been a while?). Jimmy's really extreme clonus is back, which makes me think the ESES is, too. I guess we'll find out in a few week!

SOOOOO happy, though, that we have no seizures!! :D

[Mom2Ava]

Sadly, though, I saw something we hadn't seen in a long time (you know how that is - you see it and then realize it's been a while?). Jimmy's really extreme clonus is back, which makes me think the ESES is, too. I guess we'll find out in a few week!

SOOOOO happy, though, that we have no seizures!!

I am happy too about the no seziures.
I am sorry you are seeing clonus, but maybe if his brain is backing out of the yucky zone, the clonus will calm and so will the ESES.
Wehn Ava had her status episode in the beginning of Oct ... I was seeing a lot of ickyness for a while ( the autonomic stuff I mentioned .... and also some clonus). I was really afraid we were getting back onto that blechy path we were on last October.
But it seems as though Ava's brain has also backed out of the icky zone and her threshold seem very strong right now.
No signs of anything. I hope the same goes for Jimmy.

[hmw74]

(((((Pam))))) *smallheart I am so sorry that you have seen more stuff of concern going on with Jimmy- but glad that there have been no more sz. I am with Jen in hoping that things will settle down! Do you have a date yet for the eeg? When is Jimmy's appt Tues? Wishing the very best... and for Dr. DS to be in one of his GOOD modes and to exceed all expectations!!

Please keep us updated.

Jen, I am so happy to hear about the turn Ava has taken for the better!! :) I hope she continues to do well and her threshold stays nice and high. I believe we have seen a similar thing with Shawn. He has gone so long with his only sz being ones that are provoked by illness that his threshold is, I believe, much higher than it ever was before to where even despite being very ill, his last sz while being sick stayed at just the *one* sz despite being on less than half the meds he was on 6 months ago! :D

Tim has taken Klonopin the last 3 nights- no terrors and a complete 180* turn behaviorally to go with it. He has calmed completely. No tantrums, playing wonderfully with his brother, much better cooperation towards us. I am utterly relieved but a bit confused as well. I expected, (with a bit of bated breath of course since we all know a med won't always work the 2nd time around) the Klonopin to stop the night terrors but to affect behavior THIS dramatically was quite surprising. The behavior was eventually affected in a negative way last time; in large part I think because it caused miserable insomnia- but he also wasn't on Depakote in the beginning and at the end wasn't on the dose he is now. (Who know if this matters or not... the Depakote was helping in other ways once we added it.) But it's only been 3 days so I need to rein myself in a bit here you know. But I can say this- for NOW- it's a huge difference. As this can med can dramatically affect Depakote levels I don't know what we will do (originally the plan was to NOT use it for more than these few days but in light of this dramatic change I am not sure what he will say now!) I need to call his psych and update him so I guess I'll find out.

The rest of us are OK today. Other than the gradual spiral I am taking into a blithering mass the more Spongebob I hear today... the Countdown to Spongebob Atlantis... or is it Atlantis Squarepantis? Twelve Hours of Spongebob we are being treated to today on Nick. They have it in for us, that channel does. I just know it...

*aaaaa

[nick's mom]

oh no harriett, not a spongebob marathon!! i know how much you love that show! i think i better be praying for you today. so glad tim is doing better with the klonopin on board. i sure hope the psych knows which direction to go with this.

pam, glad the seizures are gone but sorry to hear the clonus is back. praying his is making his way back out of the yucky zone.

thinking of anne and olivia as they get hooked up this morning!

cath in 2 days!! he still has the foggy, flipping and headache and i can't wait to see if it stops after that stent is enlarged. i emailed the cardiologist to see if he planned on keeping nick overnight since he's the 3rd case of the day and scheduled to start at noon. he emailed me saying he planned on making that stent as large as possible but would have to play it by ear about staying. he said to pack just in case.

hope you all have a great week!

[CasaDe]

Only here for a few seconds...

Praying for Nick!!

Harriett, we have seen basically no change in Depakote level with the Klonopin. Jimmy takes .5 mg Klonopin at bedtime and 1,000 mg Depakote throughout the day, and he's about 50 lbs.

Thanks, Jen, for the encouragement! I hate that Ava and Jimmy both have ESES, but it is very nice to be able to compare notes!

*hug to all! *heart

[apmom]

((((((Pam)))))) Glad for no more szs, but I am NOT liking the clonus. :( I do like Jen's theory about his brain backing out, I say we go with that one. :D

((((Luanne)))) Thanks for thinking of us this morning. :) We're good, just ran to the grocery store to get myself a fresh box of tea bags--something has to keep me up so I can push the button through the night. :eek: I'm so happy you're this close to the cath, I know it has felt long to me, must be interminable for you. :(

((Harriett)) So glad to see the positive Tim update. Great news! Umm, my kids think Spongebob isn't part of our cable package. ;) Olivia saw her first Spongebob during her last VEEG. Another plus to this AEEG--I still control the tv. :p

((Jen)) Wonderful to see how well Ava is doing again. :) I hope this was the LAST status.

I hope everyone is sleeping peacefully tonight. Olivia's all hooked up, I'm keeping her up a bit late tonight, but I'm about to give in and send her to bed. It was haaaard waking her and getting her out the door this morning, and I want to get a couple of hours of good work in with her in the morning. Theodore has a half day, parent teacher conferences, so it still won't be a "normal day."

*camellia

[CasaDe]

A quick note to say:

Jimmy had a GREAT day!! His speech was fine (it was getting really bad so this is terrific), and he was soooooo bright in his schoolwork (uncooperative but bright!), and he went down the stairs right-left-right-left, which we haven't seen in a long time!!

Hoping Nick is doing fabulously, and that Olivia enjoys her freedom tomorrow!

Wondering how Tim is doing, though...

[Mom2Ava]

YAY YAY YAY!

*backflip

[Guitarmom]

That is so great he went down the stairs that way and did so well in school work!!! Celebrating here!!!

[Guitarmom]

Some prayers for my meeting at 2 with Dr B would be most appreciated!! If this project is what God wants me to do... then let me have the right words to say....Please? thanks, and for Dr B to be receptive would be great!! THEN I have a huge job ahead of me to raise funding and whatever else I need to do....:rolleyes: more info later I PROMISE.....YOU guys will be in the know....

thanks!!

G

[Mom2Ava]

Prayers and luck to you Ginny.
Please let me know how it goes.

[hmw74]

Thanks for updating Pam! I was wondering how Jimmy was doing. I'm glad he was able to do so well w/ his schoolwork, attitude aside! :) Hoping for lots of continued good progress on his part. *smallheart

(((Ginny))) Wishing the very best today for meeting w/ Dr. B to work out!

Tim: I am not sure. He did fantastic all weekend when we added the Klonopin. NO terrors and wonderful behavior. The best we have seen in so long!! Then comes yesterday. He didn't get Klonopin with bedtime meds (still got his normal 375mg Depakote) and oh my... had such a bad outburst. Horrendous aggression- kicking, punching, pushing, throwing, etc. As he was calming down he tells me he couldn't make his right hand stop moving. (I put his hand/wrist between my palms and it was moving- more than a twitch but not enormous forceful jerks, I can't describe it well, having no experience here with anything like this.) Questions/thoughts: 1/ He'd been up about an hour by then and hadn't had meds yet. I try very hard to get meds into him RIGHT away because historically he just fares better this way behaviorally. So I know this didn't help. 2/ Can a tremor be one handed? 3/ He'd missed Klonopin the night before; but only had .25mg the previous 4 nights. 4/ He was much better today (only mildly uncooperative but not the fierce aggression of yesterday) and had his Klonopin last night. He kept dropping his pills, rolling them off his hand and I asked him, getting really impatient when it was taking 10 minutes to get 5 pills into him what his problem was- and he said I DON'T KNOW WHY I DROP THEM. It was his right hand. There are other mornings this happens; not the shaking or whatever was happening to his hand yesterday but trouble using his hand well enough to take his meds. So, again, wondering about a one-handed problem. :confused:

Oh: Pam: I meant to tell you the other day and forgot! Klonopin does wacky things to Tim's Depakote levels, unfortunately. He was on 500mg at one point over the summer while on .25mg of Klonopin and his level was 75. He was taken off the Klonopin; Depakote stayed the same but his level dropped to 58! (Both labs were a fasting trough done at the same place.) I hate it when this stuff starts interacting; I wish it did not for him and we could just add and subtract this med as needed- especially since Tim is now on 750mg Depakote. The psych is not going to want to continue the Klonopin long-term again, I don't think... (well, nor will I if insomnia comes back but oh well....)

[CasaDe]

(((((Harriett)))))

I don't like the arm thing. The med tremor is usually intention-induced (sounds like something you would say, so you must know that!). If Jimmy is trying to write or eat or whatever, he has tremor, but rarely when he's not trying to use it. If writing, the tremor is most notable in his right arm; when eating, his left. Also, I've heard that if you hold the limb and the tremor stops, it is med induced.

With the Klonopin up and down, I would think that, as usual, there's no way to tell if the Depakote is going high or not. Tremor is usually worst, though, a couple hours after a dose, as opposed to just before.

I spoke too soon. As I lay in bed last night it occurred to me that his late pattern has been clear speech when the seizures set in. This morning he is drooling and slurry, and when I asked if he was having trouble with his spit, he said he awoke at 4 a.m. with his face all covered in drool. That sounds too seizurey to overlook to me.

(((Ginny))) Praying for nothing more or less than God's will!

[Guitarmom]

Thank you everyone for the prayers!! I had a WONDERFUL meeting with Dr B....it is amazing to have a NON Medical meeting with a doctor I do respect on a proposal that I REALLY believe in!!

NOW....I would like to keep this among a small group because I am NOT trying to sound "full of myself"....this is something I really wish to do from our family in celebration of what CHB has done for Sam, namely they have, as a team, been the only place we had to turn when no other doctor/hospital would see him almost 4 year ago after he was taken off meds 5 years ago...As I put it in my letter to Dr B....My offer to raise the funds is based on the care my son has had for almost 4 years here. We literally have had no place else to turn, no doctor to take his care on and he has had care here during the most difficult times in our lives. It is beyond gratitude that we wish to return. Nothing can repay the life that Children’s has preserved. We still have our son, and he has treatment, despite a very difficult to determine condition. Without treatment we are not sure where he would be. It is difficult to express with words that he has a quality of life he had lost off of medication. His musical skill and desire to read and think at higher levels was going and his personality was waning. We still do not have solutions or diagnosis for Samuel, but we have seen the glimmer of his skills and desire to live come back. Last year he was fighting to die and this year he is fighting to live. We as a family wish to celebrate that by helping all families of the Epilepsy program of Children’s Hospital of Boston through a website for information.


SO......he and I had a GOOD talk about this....I had printed out portions of Dr Thiele's site and also the Experience Journal from Children's of Boston has for Several program's...they have not done one for Epilepsy before.....I said that I will contact the place that does the Experience Journals to see if they WILL do one for EPilepsy...it is not as extensive as Dr T's..............obviously....the more they want to do, the more fund raising my family will have to do................I explained to him that WGBH would probably not do another website since it already did Dr THiele;s but I will contact them and also the other place......and I will do whatever I can....he will talk to his team and get back to me to see if they want to do this.....

He said that in the 10 years he has been there he had to get the program running smoothly and they just were not focused on this....

He thanked me for pointing this out and was very gracious.....

I also talked to him about the issue of siblings and there needs....about our daughter......how she blames so much on epilepsy and Sam and me.....the 5 years of Sam not being helped and that she has left our home and faith and it is all Sam. I said that we have done all we could all along to find balance for her.

I showed him the books my kids wrote years ago and Anna's on a sibling's view of Epilepsy and talked of how that has helped so many others. I have taught others how to get kids to talk about this etc....a patient is NOT the only one who has the DX I told him.....the whole family gets the DX and is affected...I explained to him that Anna would get no help when Sam was not treated because how can a doctor help HER If there is NO epilepsy in her brother?......he then asked if she was younger .....I said no....she is 18.....he asked if she was now getting treatment and I explained she was moved out and refuses all treatment..I had gotten a chance to speak to Anna yesterday and tell her that this Website is for HER as well. SHe is often angry about any epilepsy thing that I do. I was able to tell her that I DO Know she was hurt and I have heard her. I DID do all I could all along. (her phone rang during the meeting just as I was talking about her too!)

Dr. B kept the copies of the kids books. He has never read Sam's word of how things were early in his epilepsy before. I wonder how he will see things from Sam's view and Anna's view. These were all written before things got so bad.

I explained WHY a hospital site had more credibility and why it can be a help for his hospital and why we are offering....

he thanked me for coming and he will get back to me............it was a wonderful meeting....

thanks for praying!
Ginny

[RathyKay]

Tim.....As he was calming down he tells me he couldn't make his right hand stop moving. (I put his hand/wrist between my palms and it was moving- more than a twitch but not enormous forceful jerks, I can't describe it well, having no experience here with anything like this.) Questions/thoughts: 1/ He'd been up about an hour by then and hadn't had meds yet. I try very hard to get meds into him RIGHT away because historically he just fares better this way behaviorally. So I know this didn't help. 2/ Can a tremor be one handed? 3/ He'd missed Klonopin the night before; but only had .25mg the previous 4 nights. 4/ He was much better today (only mildly uncooperative but not the fierce aggression of yesterday) and had his Klonopin last night. He kept dropping his pills, rolling them off his hand and I asked him, getting really impatient when it was taking 10 minutes to get 5 pills into him what his problem was- and he said I DON'T KNOW WHY I DROP THEM. It was his right hand. There are other mornings this happens; not the shaking or whatever was happening to his hand yesterday but trouble using his hand well enough to take his meds. So, again, wondering about a one-handed problem. :confused:
You reminded me of my neighbor. She's in her ???70's??? Back when Tom first was diagnosed with epilepsy, she told me about her sister. She said her sister had a bad hand (I think the sister referred to it as her "dumb hand" but it's been awhile and my memory could be off). She would drop things with this hand. Going along with this, she would occassionally get up in the morning and tell her mom she didn't feel good and couldn't go to school. Fortunately, the mom let her stay home. I'm not sure how long this went on, but one day the sister came home from school and took a nap. That's when they saw a seizure. When they went to the doctor (I'm assuming a neuro), he had her put her hands behind her back. He placed an object in her bad hand and asked her what it was. She couldn't tell if it was hard or soft, much less what it was. She moved it to her other hand and knew immediately it was a penny.

Anyway, I really don't know anything about tremors. I just tend to think "seizure" all the time.

(((Hugs)))

[Mom2Ava]

Hey Kathy ...
Has anyone heard from Joan????

[Guitarmom]

Have not seen her

Sam is sick again....still? One seizure on monday, but Dr B finally answered my email late wed...suggested going up on Topamax, I agreed and he replied right back that he would update the chart!! YEAH....love having him work with us !!

Website is updated and still under construction www.seizethefacts.com

book is also underconstruction....first one is a siblings work book... my mom is illustrating this one....the next will be for younger siblings.....the third will be a work book for kids with e....

G

[Guitarmom]

OK...not having a good week here....mom had suspicious event in church....neuro agreed that having the extra 50 mg every so often to combat Sunday and Monday icky days is the way to continue...she did not want to increase Topamax right now.....She is NOT happy that I have to drive to Boston tomorrow SO....the plan right now is that if I do not find someone to go with us............if I am not 100% tomorrow we will postpone the apt until next week when Dave can go with us.....(I hate this...) I LOVE My neuro....she got right back to me within just a few hours of my call. I agree fully with her plan....having the extra 50 mg when I need it works well for me!

Sinus infections and a late med just really messes me up!!

She was glad to hear that my last increase has helped me with the photosensitive stuff!! (me too).....

Sam is doing better after his latest bout with illness and a seizure...increased Topamax.....will talk to his doctor to see about Zoloft, if not tomorrow then next week, we hope....

g....

[mjcolenc]

Sean had his cast removed today, but he now has a walking boot, but no crutches. No gym till after his next appointment of December 28. He is not to do any running, jumping or bike riding either. He can take boot off to sleep at night and to take shower, but at all other times he is to wear it. He can now carry his own back pack and ride the bus again too.

[Mom2Ava]

EFA down again?

[owen's-mom]

Bummed that EFA is down!! Just when everyone needs it the most!!:mad:

[shanunlee]

Yep! I wanted to send Wren a note...today is the day huh?
I was in NO all day yesterday for Julia's NP and didn't have internet access so I am completely out of the loop.
How are you Gayle?

[owen's-mom]

Trying to prepare for last minute add on of a VEEG & Psych assessment!! Dr Duffy asked to step off atvain & risperdal Sunday! And now we have bucket full auras and subtle seizures going on!! We are going to be admitted tomorrow, but were seeing stuff already and I'm anxious to get in!! The beds are full so...

But He's had two big episodes of throwing up and it's not a virus!! It what we see when he's really off! During these times of uncertainly I get very nervous because of his history with Status!!


mouth hurting
stomach hurting
pale
diminished activity
loss of sleep
dilated eyes


So all in all I'm on edge!!! Thanks for asking!!

Hugs
Gayle

[Mom2Ava]

Oh boy ... sorry Owen is experienceing all of that.
Hope you get some good info from the veeg & psych.

[Guitarmom]

(((Gayle)))) I am so sorry you are going through so much!! Hang in there! I know this is a stressful time as it is! Going down on Ativan for the admit makes it more so!!

Call if you need to! Just got a new cell phone (same # ) old phone just DIED....

Ginny

[Denae]

ugh! thought it was just my computer.. it is really down huh?

[mjcolenc]

Any ideas when EFA will be up and running?

Gayle sorry things are so rough for Owen.

[nick's mom]

i thought it was my computer at first too. if i have trouble loading a site, it's going to be efa. but when it wouldn't load continually, i knew it was the site.

hope owen's doing better gayle.

[CasaDe]

Just got an e-mail from Wren...

No baby today. The test for his lungs was inconclusive. Next week, probably.

GRRRRR on EFA being down. Gayle, I'm glad we can still support you here.

[playful_ponderer]

hi friends :)
the ef site went down last night. I was trying to get in and post late CA time and no luck...I was hoping it was just an overnight deal but no such luck.

pam~ thanks for the update on wren *heart
I'm hoping the lung test isn't anything to worry about--are they just giving the little guy a little more time?

luanne~ how's nick doing? I was glad to read your updates from your appts but never got in there to reply back to you before the site went down.

gayle~ supporting you and the family with thoughts and prayers. I hope a bed opens up for owen as things are brewing with the drop of his meds.

peace~

[Guitarmom]

Thanks for the update on Wren! Is she handling wait ok, do you know Pam? Poor thing!

NO Idea on how long about the site....


Sam had a seizure this morning. We are back to weekly seizures again. Talked to his epi monday (the best talk we have had I think in a long time....after our second opinion, he and that doctor "ran into each other"....I know that she told him how much I showed respect to him. This makes two doctors I have consulted that have told him this.) He is as frustrated with Sam's loss of seizure control as we are. Dr P, my neuro who saw him was also very concerned at his seizures when I saw her last week (2 seizures ago.) She is more concerned about his depression. We have added Cymbalta. we have already seen an improvement at the first low dose. We can raise it again today. It is a big relief that this is helping him. Depression has always scared us more than his seizures! It has steadily worsened since last fall. At this point it was just becoming too much.

It is a great relief that we have a great and caring neuro waiting in the wings when Sam outgrows Dr B. Sam wants to stay with CHB for now, and we feel this is the right choice. Dr P even felt that this was a good choice and his treatment is good....he is being treated. In her words.....she is there when he is ready......We have such a peace that his future care is not going to be such a problem as we once did. Present care is great and future is taken care of....

ginny

[CasaDe]

Blech!! So sorry to hear about Sam's seizure! I don't even want to have to puzzle through why, as I know you also don't want to do that.

Wren says Tuesday is now baby day. Just giving the little guy a bit longer to bake.

I didn't get to read about Nick's cardio appointment, Luanne! I think I was on last night when the site crashed.

Kids played in the snow for about two hours today! Jimmy finishes his NP eval tomorrow morning. He was in great shape for school today. He hates the NP testing - says it's really boring. Better boring than too challenging, I guess!

[playful_ponderer]

(((ginny and sam))) ugh! sorry to read about the seizures and depression. I hope the cymbalta continues to help him. Is he still in counseling/therapy?

pam~ how fun to get out and play in the snow! 70 and sunny here. I LOVE the look of snow from afar and viewing it from inside a cabin--but that is about it. I don't think I could ever live in it...but who knows...if I HAD to I suppose I'd be able to do it. I'm glad that jimmy is thinking the np eval. isn't too challenging :D

peace~
Cindy

[playful_ponderer]

Wren says Tuesday is now baby day. Just giving the little guy a bit longer to bake.


tell wren it was awfully kind of her to let the little one continue to "bake" so that hopefully by tuesday our ef forums will be up and running smoothly and we will be able to support here there ;)

peace~
cindy

[playful_ponderer]

E site just worked for me! but now robert and I are leaving to run errands!

[Guitarmom]

Yes, Sam is still in therapy, we actually will be starting more of that for him (he was just on medication therapy seeing the doctor for this and not as often for talk therapy...) So now he has realized he has to go back to talk therapy often enough to help the depression....he has been resistant to this for a long time..about 10 months....He is on 2 depression meds now...

Had another seizure today...

G

[Jerri in Boston]

Ginny,

I'm sorry to hear your son is having weekly seizures. My husband went almost 4 years without one and then last April (almost a year ago) he woke up with a seizure every day for a week! He was admitted to the epilepsy ward at Beth Israel (Boston) for a week and they changed his meds. He was released and was good for 10 days and it started again! This was the rest of our year.

His neuro added topamax about 12 weeks ago and it has made a huge difference. He went 10 weeks without a seizure and then this Monday, it started all over again. We were in the process of weaning him off Lyrica (3 in the AM and 3 at bed). We got him down to 2 in the AM. His neuro said we needed to add the Lyrica back. We did the weaning over several weeks.

I completely understand your frustration! Good luck and let me know if you have any questions.

[Guitarmom]

Thanks for your message Jerri! We added Topamax last fall as well because it helps me so much. It gave Sam 5 weeks with no seizures, but gradually we have lost that help.

I am so sorry that your husband has suddenly lost his control recently!
I hope he gets it back soon!

Ginny

[mjcolenc]

Had a talk with Sean last night. He said he has been having some focusing issues at school. Said he seems to be spacing out in school. Like he can be there and then the next poof and when he comes back, his hands and feet feel numb. Like some times he can be looking at the teacher and listening to her and then it's like she has moved on to something else. Says this has been going on for about a couple of weeks now.

This morning before school he had another absence seizure. It lasted about 5 minutes. Called the neuros office and they said he cold be going through a growth spurt and have to take him in for blood work this afternoon. He has another neuro appointment on the 28th of this month. hopefully if there is something up with his blood work they will let me know something before then. Like, if he needs to have his current med upped or changed completely.