Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!

Tuesday, July 29, 2008

Seizure Update, St Louis appt

Here's the St Louis appt update, ya know the one I should have posted last week. The news just sucks, so I'm avoiding it. How you can avoid it is beyond me, but I'm working on it anyway.

* Neuro is still NOT convinved Logen has CP. {Yea, me neither. How many other almost 5 y/o kids with CP walk, but can'talk. Not a single word, just ahh noises. Not for lack of trying though}
* His seizures pose a FATAL risk. Yes, I said FATAL. They occur on both sides of his brain. If left untreated and he were to have a lengthy seizure (we are talking 5 minutes= lengthy) If he has a lengthy seizure- this can cause chemical toxins to be emitted into the blood and pose a fatal risk. We are to call 911 immediately following a long seizure. We were instructed not to attempt making it to the hospital. It can take up to 15 minutes for us to the nearst one, and apparently that is to long of a wait for him.
* We left with 4 new prescriptions. FOUR. Not one, but 4.
* He *might* have reflux, so we are trying prevacid. I think this will get us no where. I am almost sure it won't. And his SLP pretty much agrees. He drools b/c he can't work his lips. He just can't do 'lip closure'. He doesn't control the drool. It just spills on it in buckets. He aspirates. How can you talk when you can't even swallow without keeping liquids out of your lungs.
* His med's (and those of you with kids on seizure meds, please comment or email about them!) are:
1) Zonegran- 2x a day. We mix it in applesauce since he can't swallow it
2) Klonopin- As needed for any seizure that is less than 5 minutes, we are to call the Neuro and ask about giving it 1st.
3) Diastat- (liquid valium, given rectally) to be given if he has ANY seizure lasting 5 minutes or greater. Call 911 immediately.
4) Prevacid- before breakfast
* Logen's seizures aren't that easy to spot. Thats an issue. His are typically ones where his head falls slightly backwards (but he does this LOTS, not just during a seizure. You can see it in some photos on the blog), his eyes just 'stare', and he's non-responsive to his name, etc. Problem is- we aren't sure if he's got behaviorial issues or just seizes alot. B/c he's non-reponsive frequently. He has seizures while he sleeps. He wakes up crying b/c of it. They scare him. Sometimes he will walk to our room in tears, and sometimes he stays put until (usually Adam) goes to get him.
* EVERYBODY that keeps Logen needs to know this by heart. We can't take the chance.

~ I'm not trying to be negative. I have high hopes that we get this med in his system and things will start to change. Please pray about this. Please. Thanks for the prayers already. You don't know how much we appreciate them.

* This morning was dose 2 of the daily med. His SLP said he laughed like a hyena for 30 minutes of the session and was fairly lethargic the remaining 30. I figure it is the zonegran. She said it could take a bit for it to get into his system.
* Neuro wants to see him in 1-2 months. They are working on getting him in. She said it's nearly impossible to fit kids in, but they'll do it.

Blog Widget by LinkWithin


  1. Oh, Jess......try to keep your head up, sweetie. I'm here for you if you need ANYTHING!!

  2. Hey Jess! Big HUGS! So sorry it's never the news you want! I know it is so much to take in, on top of everything else. What Melissa said-try to keep your head up!!

    Mona's seizures are on both sides, too (generalized seizures). Many people with epilepsy have general sz's (myoclonic jerks, grand mal, absence--staring).

    There's a new board on NBBC for epilepsy, go there and talk to those moms! Long seizures are dangerous and that's why you've got the Diastat. Don't be afraid to use it, and call 911. We've used it plenty, but never had to call 911 thank God! It is very very good that so far Logen has had nothing close to that long of a seizure. Go to www.epilepsy.com for more info. There is tons, on all seizure types, meds, everything. And bulletin boards. It will become part of your routine, eventually. Take a time-out for now. I feel you, really!

    The meds may make him act weird at first, but it will get much better after a week or so. It's so hard. But it's so much better than uncontrolled seizures.

    HUGS again. Sorry for all the info but I just want to let you know you're not alone, and offer any advice that may help. If you need to just vent, please call or write.

    Mona's mom

  3. Big Hugs Jess, it's amazing how strong you and Adam remain through all of this.

    Just know that you have done so much for little Logen and it doesn't go unnoticed.

    Hopefully the new meds will help with his progress. Poor little guy, such a tough road.

    Continued prayers for you all as always.

  4. Jess,

    I am so sorry to hear about the news with Logen. You and your Hubby are great parents, and I know how hard it is. My son Ben also has Tonic Clonic Seizures that last 20 minutes or more. We also have Diastat on hand at ALL times, and had to use it 2 weeks ago when he had a major seizure and ended up being intubated. My son was put on Keppra because this is a solid drug for fever induced seizures. He used to be on Tegretol but when he had that high fever, the seizure "broke" right thru his medication.

    I feel for you Jess. I know how scary it is, and it is so hard not to live in fear and paranoia. Ben does not have him in his sleep(at least not yet), but would it help your piece of mind to put a monitor with a camera in there so you cant watch him when you want to? Just a thought...

    Either way, I am praying for you, and keep us updated on your little guy.

  5. My seizure meds made me extremely lethargic at first also. Then I would alternate between extremely hyper (could NOT sit still-HAD to be doing something) and lethargic.I think its just the body's way of adjusting-hang in there!

  6. I'm so sorry that you got so much information - tough stuff to hear. You don't need any more on your plate. You're a tough cookie and so is Logan. Hang in there!

  7. The nuerologist visits are usually a bummer (for me anyway).

    Here in the deep south (LA and AR) phenobarbitol is the first line of defense against seizures in children. Charlie takes a ton every day, but it works!

  8. Hey, I am thinking about you and praying for you guys. I agree with what everyone else says, you are such a strong person and we all admire you guys. Keep us posted.

  9. Oh Jess, my heart is aching for you! This was some tough news to handle! But you're so strong and have been through so much, I know you'll get through this too. I hope the new meds help him and protect him from the seizures. What are the doctor's thoughts on getting a proper diagnosis? I'll keep you all in my prayers and pray for the doctors to have wisdom too. ((HUGS))!

  10. Jess,
    Sam is on Zonegran 2x a day, 75 mg each dose. We have upped him 3 times recently because of weight gain and breakthrough myoclonic seizures. He went on it when he was like 18 months old and within 24 hours, his seizures stopped all together. His were very noticable, though, like big startles. The last time we upped the meds the seizures looked different, like he was pulling his arms in toward his body a few times in a row. The only times we've seen the breakthrough seizures have been at nap time and bedtime at night. I also think Sam has some startles still in the night, because he will night wake now and again, and he also seems scared and screams. We are also on Prevacid before dinner (make sure you wait 30 minutes before feeding him anything after the meds. And some of the ladies on the board also mentioned that seizure meds should be separate from the Prevacid which is why we do dinner time.) The Prevacid really helps Sam with his nightime reflux, but that was obvious with him, also. We also have Diastat at EVERYONE'S house and in the diaper bag for trips. We had the neuro call us in 3 RX's on purpose so we could have some everywhere he goes during the school year when I'm working. I thank God we haven't had to use it yet. The Zonegran doesn't have any side effects with Sam, but he has bloodwork, urine samples and renal US's every 6 months since Zonegran can cause kidney stones...FYI. He has been fine on it since day 1...actually his personality and attentiveness improved DRAMATICALLY after he went on the meds! It has been a Godsend!!
    Good luck with everything... HTH..

    Ellen :)


Please share your thoughts.

Scroll Fx


blogger templates | Make Money Online