Sooooooo.....it's been a while :)

Not much time to post, but suffice it to say that things are a bit different as of the New Year. We found a new practice of doctors closer to home and so far, we are very pleased. Jade had lengthening rods placed on February 20, 2012. While the surgery itself was a success, we had a few setbacks and remained in the hospital for a few weeks. She ended up coming home with a GJ tube because of increasing reflux/vomiting post-surgery. She also had an emptying study which indicated she has very delayed emptying of stomach contents. She is now on continuous feeds via pump. It's both a curse and a blessing!

Since we are new to this practice of brain docs, we felt that since she was going to be hanging out in the hospital, we might as well hook her up for an EEG. It had been a couple of years since she had one and I was curious about many of the actions she was exhibiting. I couldn't figure out if they were seizures or not. It turns out that her EEG is showing an origin of seizure activity in her right occipital lobe (explains the many "eye deviation" seizures we see) and the activity spreads immediately to the rest of her brain, causing tonic seizures.

Jade underwent continuous VEEG monitoring for 4 days to ascertain whether she is a surgical candidate. Her epileptologist and the neurosurgeon both feel that a Corpus Callosotomy is the best option for surgical treatment to help prevent the spread of seizure activity. Yikes! That, obviously, is on the back burner for now since we are still trying to get back into her home routine after the spinal surgery.

During her EEG monitoring, the docs stripped her cold-turkey of her Keppra, Banzel, and Clonazepam, and halved her Phenobarbitol dosages. I was, of course, nervous about stopping so many meds so quickly for fear that she would bottom out with seizure activity. But, we needed to get a clearer picture of where the seizures were coming from and spreading to. Needless to say, she became much more alert and we saw many smiles in the week after the med decrease! She didn't "bottom out" as expected and it is such a relief to not have to dope her up so much. She was sent home on Depakote with instructions to slowly wean the rest of her Phenobarbitol. This particular doctor (the epileptologist) believes that if two or even three meds do not work to control seizures, than why keep adding more? I completely agree, and it is obvious it is true considering her seizures are not much different from the very first one we ever witnessed.

So, we head back next week for another consult with the epileptologist and a follow-up with her new neurologist. Keeping my fingers crossed for productive visits...

The latest...

I can't believe it's been since February that I've posted! Moving took a big chunk of time and energy, and we still have contractors coming to the house each week (we moved March 20). I absolutely love the house though, and the water view is incredible! We had our housewarming party a couple of weeks ago and everyone had a great time. It was nice to be able to entertain again.

As for Jade, we had a follow-up visit after her hospital admission. The seizures had been creeping up in numbers again since starting the Phenobarbitol (no small surprise), so her neuro decided to try her on a newly released drug called Banzel. It is supposed to be effective in treating Lennox-Gastaut seizure patterns. It's difficult to say if this has positively affected her because she still continues to have large seizures each day. She also caught a cold and is still battling a lot of drainage from it. That, plus seasonal allergies, up the number of seizures she has each day. This week has been pretty decent though since her return to better health. She is more alert and interactive and it's so awesome to watch! We have a new game called, "Yay, Jade!!". She LOVES this and her personality shines. She enjoys the attention and the excitability of our voices. She has also been spoiling us with half-grins each day, which are so cute to see :)

I'm keeping my fingers crossed that the Banzel does the trick. It can take a while for it to become fairly effective, and she still has room for increases if needed. After that, we move on to Depakote, which I am loathe to do. Wish her luck!

To scream, or not to scream?

Obviously, I've wanted to post since my last entry, but time keeps running away from me :)

Jade was released from the hospital last Tuesday, a day or two earlier than anticipated (small Yay!). She was completely weaned from the diet as of Monday and they started her on Pediasure. It took a bit of time for us to get used to her new diet. No more measuring, sticking to strict food requirements or water intake, and no more oil! It's been so much easier and I'm pretty sure she is tolerating the Pediasure well enough by now. She's been eating more baby fruits by mouth too this week. But, the best part is that after she got home, she woke up more and is much more interactive with us! Not only was the diet changed, the doc stripped her of her Zonegran - cold turkey. Just in time it seems, since the FDA recently announced a major side effect in pediatric patients, metabolic acidosis. So, now she is on Keppra, Klonopin (nighttime only), and a hefty dose of Phenobarbitol. I wasn't keen on using this last med, as it sedates and causes more motor problems (like she needs anymore difficulty in this area). But, it seems to be working well. Her seizures are so much less severe and lower in number. Pre-admission, she was having no less than 20-30 seizures per day, with a lot of them lasting 5-10 minutes each. Now, she has around 5 brief (3-10 seconds) tonic seizures per day! It's weird.

In retrospect, she should have been admitted a LONG time ago for her seizure activity. That's the hard part of circulating her among more than one doctor and nurse in the practice. Through it all, it seems that this treating doc (my preferred doc) is/was the only one to make the correct decisions on her behalf. I'm still very frustrated that I (and they) weren't more aggressive with her treatment. I honestly thought her level of seizure activity was the norm. Now, I know better.

Not everything is roses since our return, though. It seems she is developing an infection in both of her big toes from ingrown toenails. I am pretty sure she is predisposed to this happening as this is not the first time. However, this time around, it is serious enough to warrant an antibiotic and warm foot baths several times a day. The doc on call instructed me to take her to the ER tomorrow asap if it has not improved by then. Fortunately, I have an antiobiotic prescription from around Christmas I can treat her with until we can get in to see her pediatrician. He's on vaca right now. Why do the big things always happen when he is not around??!!

I am also at wit's end with the house. We were really really really hoping to get the CO yesterday, but there are a few things that need to be completed before that happens. Even if we do get the CO next week, it will be at least another week before I can move anything in. We were supposed to have sod delivered and put down today. I stopped by twice, and NO ONE WAS THERE - AGAIN!!! Grrrrrrrr..... 

Thank God for wine.

What would our year be like without a vacation at Shands?

Alrighty, here's the story...  

As most of you know, Jade's been having more seizure activity than we are used to seeing. After phoning neurology early Tuesday morning for some guidance, we were told to go to the local ER to assess her. The previous night, she was seizing no less than every ten minutes for 3-4 hours straight. I thought they were tonic-clonics, but I was later told they were not.  

We took her to the local hospital, had a bowel xray (since she hasn't been as regular as usual), and had labs drawn (I brought her in fasting). Both results were fine, and in the 5-6 hours we were there, she didn't seize ONE TIME! So, they sent us home with instructions to use Diastat when needed. We ended up using it that evening.  

We were scheduled for a regular clinic visit Thursday with her primary neuro. Needless to say, she had no less than 5 seizures in front of the staff in the 30-40 minutes of the appt. After discussing options, it was decided that after three years of being on the diet, it was likely no longer benefiting Jade. We had yet to try Depakote and her neuro mentioned this is the drug of choice for Rett girls (I have read this in previous posts). He said if it were up to him, he would admit her immediately and wean her from the diet within a week.  

So, here we are, weaning the diet, and she is completely doped up on Phenobarb. Their plan is to have her on regular fluids/foods by Tuesday and to start the Depakote around that time. They say it is not safe to take Depakote while on the diet. I have not known what to do for such a long time now, that it was a little bit of a relief for someone to make a decision. I am not happy that she will be on FIVE drugs upon our return home, but we can't take them all away at once without dire consequences. I think that ultimately, she will be weaned from her Keppra, the pheno, and possibly the Zonegran. We will have to return in 6 weeks from our discharge for further direction.  

I am told that we will be here no less than 5-7 days. I don't see it being less than 7. It won't be until Tuesday that they consider giving the Depakote and they need to see how she will respond to it. Her attending today said he spoke with the neuro we met with on Thursday and they compared past and present EEGs. Since last year, her EEG hasn't changed, only her visible seizure activity has. All the more reason to nix the diet, since we have tweaked it so many different ways during that time, with no real success.  

On the one hand, it was fortunate that we stayed for her admission on Thursday. She ended up having a 20-30 minute seizure not too long after getting her settled. They were just preparing to insert an IV when she began seizing. No time like the present, huh?!  

She's been sleeping the entire time. At least her noticeable seizures are way down. What I don't like is that she is not emptying her bowels, and they had to cath her this morning because she went almost 12 hours without a wet diaper. At least she's peed since then. The best part of my stay (if there is a best part), is that I have a private room! I had to share last night and my roommates had the tv and lights on well past 4 a.m. I just don't get it. She's all decked out in her "skull cap", pink IV board wrap, and she gets a luxurious Tempur-Pedic mattress! No wonder she's been sleeping the whole time :)

And, of course, we plan to move into our house the week after next. Let the saga go on...

Chillin' and Illin'

You know it's Winter when your kids get sick, recover, then get sick again right away! Baby J is coming down with a cold, thanks to big sissy. She's been sneezing a lot, which is good because then she can get some of the nasties out since she can't blow her nose. Poor little bug!

As for seizures, they're still hanging around, but some days are better than others. Our latest flurry can be explained by her current illness. Not as bad as I expected - yet. I dropped 50mg of her nighttime Zonegran. I honestly swear that each time I do a med drop, she gets sick! Crazy, but seemingly true. My goal is to have her weaned of Zonegran by our February 19 neuro visit. The pharmacy we get it from no longer carries the generic she had been taking. The manufacturer changed and I don't want to play around with different formulations of anti-seizure meds. I don't care how many docs think that generics work just as well. I don't and never will subscribe to that thinking. There's a reason generics are cheaper...you get what you pay for :)

The house is down to the nuts and bolts stage. Tile went in last week and should be finished by Wednesday of this week (boy, that's a story in itself with the installer - quite a piece of work he is). They are almost finished hanging doors, the painters have the biggest job, but are about 3/4 of the way finished. Our dining room is fantastic! The ceiling is a piece of art in itself and the wine room is extraordinary. All of the base cabinets are installed in the kitchen and the appliances arrived Friday. There is still a lot of detail work to be done, but I am seriously keeping my fingers crossed we can have the CO by the second or third week of this month. Keeping my fingers crossed..

.  GO STEELERS!!!!!!!!!!!!!!!!!!!

Baby steps

The seizures continue unabated. In fact, she's been throwing in tonic/clonics on top of her usual pattern. The last few days have been especially hard on her, particularly in the evenings. Whether it's from the cold weather or not (yup, it got below freezing overnight on three consecutive nights!), I can't be too sure. We've made some significant changes to her diet and some meds, so compounded with all of that, it could be anything. Any way we do things, though, she continues to seize.

Our biggest change was to her diet. I got it into my head that maybe she is allergic to her soy formula and a milk ingredient in another supplement. I temporarily blamed the mucous buildup on a suspected allergy. We ended up getting her blood drawn to rule out any common allergies only to get the all-clear on everything!

While we were waiting on the lab results, our alternative to the soy was to feed her baby food (duh! why didn't I think of that?!). She's been strictly on formula since the day she got her g-tube that it never occurred to me that I could put any FOOD down the tube! Since two Fridays ago, her menus are half baby food and half fats. 

Now, the good news is....(drumroll please)...she is eating some of the food by mouth!!! I thought it would be nice for her to have a taste or two of some sweets, so we've been trying to feed her the fruit portion of at least one of her meals each day. The first day I tried it with her, I was ecstatic :) I honestly thought she had completely forgotten how to eat and swallow, so I was in for a big surprise. She might manage about a half teaspoon of a fruit per day, but at least she is getting some positive (and rather tasty) stimulation in her mouth! 

Other than that, everything else remains the same. T kicked butt at his basketball game again today. He's quite an athlete! E is busy selling Girl Scout cookies and kicking butt academically :) They're such good kids!

Seizures, seizures, and MORE seizures

So the seizures are back with a vengeance. What else is new. This time, I have no clue why they are so bad. The only changes to her daily diet/routine were the addition of a probiotic (suggested by her paed) and a new multivitamin. I called the company who makes the probiotic to make sure there weren't any added carbs and they assured me there is nothing aside from what is listed on the bottle. Today was the first day I gave her the vitamin, so that can't be the problem. She's been seizing like this for days.

I also had a lengthy discussion with one of the GI nurses about the amount of mucous in her tummy. She is puzzled about it, but at least she offered up some potential reasons. It could be that some of her meds are contradicting each other and creating a "gelatinous blob" in her belly (for lack of a better description). It could be because her secretions are increasing and somehow contributing to the problem (I forget how). It could be from scar tissue around the g-tube inside her belly that restricts the formula (another long reason I can't remember in detail). Great memory, huh?! :)  We hung up the phone agreeing that I would get in touch with her pharmacist to discuss the potential medication issues and go from there. I don't see any cut and dry answer, so anyone's guess is as good as mine.

I'm having another issue with the insurance company :/  They are arguing charges for her wheelchair seat that they previously approved. What kind of idiotic company approves a wheelchair frame but not the seat?! They will do anything they can to avoid paying for it, claiming it is a custom seat (it is, but that is because of her scoliosis and complete lack of tone). Mind you, this is from JUNE of last year! Unbelievable. So, not only do I get to battle these awful seizures, I now have to begin what will probably be a long and painful fight with the insurance company. It seems that the company who I am dealing with (the wheelchair company), sees this often from all kinds of insurance companies. It is unnerving, unnecessary, and UNBELIEVABLE! I had plans to purchase additional durable medical equipment that she also needs, but now I know how much of a problem I will get when I need them to step up to the plate. This sucks!

We are also still waiting on the completion of the house. We're getting there, but each day I get more and more antsy about our move-in date. Fingers crossed it's sooner rather than later...!

Another great start to another new year :( 

Another day in the life of J...

It turns out that she didn't have a UTI after all. No surprise there, I suppose. So, she is off the Bactrim as of tonight. Her pediatrician recommended starting her on a probiotic, which I have pondered doing in the past. Previously, I looked into a couple of brands labeled for children, but they are not Keto-friendly. No surprise there either. So, off to the health store tomorrow to see if they can recommend something a little more pure.

We also talked about the excessive amount of mucous she has coming out of her g-tube. He surmised it was allergy related, but I'm stumped as to why it happens all year round. If the probiotic doesn't help clear things up, then he wants her to try Cingulair. We'll see. Last thing I want to do is add another drug to her increasing medication list, but if it helps, then great. I am almost positive that the excess mucous is causing a lot of her seizure activity. It seems to clog her g-tube, most likely causing discomfort or reflux. For all I know, these "seizures" could be reflux! Whatever they are, they are happening too much for my liking and they are wearing her out. She's even been seizing during the night, which hasn't happened in a while. 

The stomach virus she caught seems to be gone, so now we are back to a bit of constipation. I lowered her diet ratio while she was sick, hoping the lower amount of oil would help alleviate the mucous and tummy discomfort. I am loathe to put her back at the high level she was on before, so I hope this ratio works out. She has an appointment in February with the Keto staff and her neuro. I plan on talking to them about potentially lowering the diet more. At this point, I would be almost willing to take her off of it. I would love for her to experiment with flavors in her mouth and not worry about meds with too many carbs. On the flip side, I need to investigate a more natural approach to her diet because I am pretty confident that gut issues are the cause of a lot of her troubles. I know my gut wreaks havoc on my system, so why wouldn't it be the source of her discomfort?

Oh yeah! CONGRATULATIONS FLORIDA GATORS for winning the National Championship AGAIN!! GO GATORS!!! It can't hurt that she gets her care at this school now, does it?? ;)

What gives with this time of the year??

It seems now that our little princess might have a urinary tract infection. This is almost identical to last year's ailments. While her seizures are still okay, she's had a couple more large clusters that are a bit out of the ordinary. Today, when I checked her urine stick, it showed moderate traces of blood, small nitrites, and small leukocytes. After a lengthy message with Jade's nurse practitioner (her pediatrician is on vacation until Monday), she immediately decided to prescribe Bactrim in case it is an infection. Her urine stick is generally a good indicator of this. Thank god I don't have to bag her or take her for a catheter draw. That would have been the icing on the cake!

So, we will wait and see if this clears things up. It will be nice once this dreaded holiday season is all done so we don't have to deal with missing doctors, closed clinics, and idiotic staff (Apria). By the way, a rep from Apria called and said it was the insurance company's error. Go figure. That's what they told me the last time this happened. Yeah, right! Regardless, she got her supply about an hour ago, so that should hold us until the next time they screw up! :)

HAPPY NEW YEAR!!!

Cheers to a new year with many hopes of research success and breakthroughs, less seizure activity, no hospital stays, and a smooth move-in to our new home!

Wishing all of you the very best in 2009!

Everyone who hates incompetence, raise your hand!

Who can you strangle when everyone is pointing the finger at everyone else?! I have been in a battle with Jade's enteral supply company (Apria, for those of you who know how idiotic they are) since yesterday. I merely called to find out when she was getting her next supply of food (note: she's already 10 days late). I find out that some kind of authorization was needed to be signed by her doc for her food and supplies. Fine. I call her doc's office and they faxed this authorization on December 10th! Of course, Apria has no record of this and now they are telling me that this time frame for authorization has expired, whatever THAT means! I call the doc's office again, and this time the nurse calls Apria and gives them holy hell for not sending a child's food supply (you go girl!) and tells them it was faxed. Doesn't seem to matter, because when I called again today, they told me they are still waiting on the doctor's authorization. AARRRGGHHH!!! I cannot stand these people. Now, I am waiting on the nurse to call me back (she's gonna pull her hair out too). After Apria finally gets the fax they should have already had in hand, apparently the insurance company must approve it first before they can send her food. Thank god I have stockpiled her supplies because we would be in deep doo-doo by now if I hadn't. Bunch of backwoods dumba--es!

On top of all of this crap, Jade's running a fever. First temp today was 101.4. So much for her starting to feel better after the bout with the stomach flu. Now I know why she was seizing ALL DAY yesterday. Big, bad, ugly seizures. I have no idea what's going on, but I hope she kicks it in the butt soon. Speaking of seizures...gotta go :(

And four 10 second tonic/clonics later...

I guess she's trying to catch up from the past couple of days :(

Icky, yucky, tummy :(

Well, it's that time of the year again for illnesses! I finally know why J's seizures were so horrible this week - she has a stomach bug. What's terrible is that I knew she wasn't feeling well two days ago because she was feverish. Had I known that her stomach was upset, I would have taken it much easier on her with food and therapy. I guess her revenge is passing it on to me today! :( She's been sleeping since last night for the most part. Thank god for the g-tube, because I would not be able to get food or fluids into her otherwise. Bad thing is, she can't have Pedialyte or tummy meds because of the diet. Gotta ride this one out. At least she seems to have had only one seizure between today and yesterday so far. I'm keeping my fingers crossed because I lowered her Zonegran this week (before I knew she was sick). I am trying to see if lower doses of meds will "wake" her up and snap her out of the zone she's been in all year. I have a sneaky feeling that the Zonegran that we started last December is what is keeping her from moving the way she used to. She has no desire to roll over or do much of anything. We may find out if I can wean her off of it, or way down. Let's pray her seizures don't get worse as we drop the meds. Say some extra prayers for her that this doesn't happen.

I FINALLY finished wrapping Christmas presents. I thought I would never get done. I hope I'm not forgetting anyone or anything...! Now, I'm just waiting for the holiday to pass so that I can start packing up the house. Things are moving at breakneck speed now. The drywall will be done today. The pool deck was poured, acrylic was applied, and they painted the deck already! The outside of the house is completely painted. Soffit will be in place soon and the flooring will begin being installed in the next week or so. Now, the pressure is on for me to choose lighting, plumbing, paint colors, carpet colors, and landscaping. Yippee! I can finally see the light at the end of the tunnel with this project. I don't have a current photo, but I will try to download one soon.

I have a feeling I won't be posting again until after Christmas. I hope this post finds everyone healthy and happy. May your Christmas be very Merry and all that you hope for!

My own personal chef!

Jade and I made banana bread today! I really think she enjoyed helping me. She poured the dry ingredients into the bowl and helped mash the bananas. I think the mushy feeling of the bananas was really unique to her. She also held the measuring cups and the spoons and stirred the ingredients with a whisk! I think it might have all been a bit much for her, but she actually opened her eyes for the photo below!! It's great to see her do this kind of thing and "look" interested in something. :)

     Those are chocolate chips, by the way! :)

A budding artist

Hello all! I think I get about two minutes to update until the kids are back from their bike ride... :)

The weeks have been a whirlwind with the holidays and shopping and social studies projects and decorating and...it's BUSY!! But, in a good way :0) The dog is still crazy but loveable, Jade is still having seizures but not as many (just longer and more intense), the kids are excited about Santa, and I am almost done my Christmas shopping! Now, if it would only snow. Ha ha! It's still in the low 70's here, so I don't think THAT'S going to happen :)

Jade now has a homebound teacher coming to the house three days a week. She is such a nice woman and so bright and bubbly with J. I wish I had done this sooner! So far, she has had Jade paint and she brought Jade some simple communication devices. Now Jade can turn on the Christmas tree lights and turn on her music when she wants to! I am eager to stimulate J as much as possible. She seems so bored all of the time that this is exactly what she needs. Tomorrow, her pt is bringing her son to therapy and he will be playing music (I think a guitar?) while she receives pt. This is going to be such fun for Jade! We're all looking forward to see how she does. Hopefully it won't be like today when I had to "wake" her to feed her and to see her teacher. She pretty much slept through her whole class and they were painting!! I got some cute pics though :)

 

I hope everyone who reads this is enjoying the holiday season. Christmas can't come soon enough in this house!

What I am thankful for...

I suppose another update is long overdue :) First off, let's just say the dog is sucking the life out of me! He's a good pup, just very active and demanding of attention. We just got him neutered and microchipped this week and you would never know he underwent any sort of procedure. Obviously, he's recovering well :0)

E's pageant is over as of last Sunday. She did so well! I was a nervous wreck worrying about her being up on stage and about what the final outcome would bring. However, as she always does, she made us all proud by speaking clearly and intelligently and walking the walk that would have had me flat on my face onstage! She looked so beautiful up there and we are all so very proud of her. She also made it to the Semi-finals!! Next year (probably Summer), she will be taking part in the next level in Orlando. Now she's chomping at the bit to start doing the pageant circuit. Could my life be any more eventful?! ;)

   

 

Our Thanksgiving was very nice and pretty low-key (just the way I like it these days). I don't know who was more stuffed, the turkey or me! Suffice it to say that I was very thankful for everything I could possibly be thankful for.

As for Jade, she's still pretty much the same. I dropped her Klonopin a couple of weeks ago, and I don't think it affected her too much. After this and her Zonegran increase, I decided to take it upon myself and begin a small wean of her Keppra. One week now with a quarter tab drop and today I dropped another quarter tab in the morning. She had a pretty rough day yesterday starting in the afternoon and she continued to seize repeatedly until around 9:30pm. Some were rough, others not really minor, but smaller nonetheless. I hope today is a better day for her.

The main reason I decided to drop her Keppra is because of what her recent increase did to her (doped her up, made her more sleepy, and increased her seizure activity). She's been on it for at least two years now, so I am wondering what taking her off of it will do. It's hard for me to ascertain whether this decrease is contributing to her current seizure activity, or if it is from her increase in Zonegran. Only time will tell once again.

I have to admit, her level of seizure activity is enough to put me over the edge these days. I honestly can't stomach not being able to "control" this part of her and it's doing a number on me. Especially with the holidays right in front of me. It is so not fair that she can't celebrate like any other four year old would like to celebrate. Instead of me buying toys that kids her age would enjoy, I am exploring therapy mats, therapeutic swings, lift systems, cause and effect toys, adaptive switches, orthotics, standers....You get the picture. For those of you who are not affected by special needs children, be thankful this is not part of your lives. For me, I am thankful she makes it to another day, and does not land in the hospital or worse.

Ugh! That last paragraph is crap and it will be one of the last times you read anything so negative. I am generally an optimistic person, but when it comes to her, there are times I need to vent. My lifeline of support are my friends who are going through the same problems. Without them, I would be directionless and chronically depressed. Without the support of my family and those involved in her day to day care, I don't think I would hold up at all! Thanks to all of you for getting me through the tougher times. Most of all, thanks Jade for letting me draw strength from you each and every day. You have made me a much better person for loving you the way you are. You will always be my special little princess!

Weekly update

There's not much to write. Jade seems to be doing a little bit better over the last couple of days, but I'm not holding my breath (ok, yeah. maybe I am). She had a doozy of a seizure last night around dinner. I thought it would knock her flat on her butt, but she stayed awake for a while after. The good part was that it seemed this was her only seizure all day. I was gone all day shopping with E, so I will pretend this statement is true :)

Speaking of E, she entered a pageant and was accepted to take part. The next step happens this weekend. She has an interview and photo shoot on Saturday, and Sunday is the big production. She's so pretty and smart, she's gotta be a shoe-in! I posted a photo of her in her formal attire!

Keeping my fingers crossed

While I haven't seen much improvement with the increase in Zonegran, there is potential I believe. She had a "better" day yesterday with fewer tonics and a longer gap in between seizures. However, the seizures she had were HUGE. 

I may be jumping the gun, but I decided to take away her morning dose of Klonopin. It was such a small amount, I really can't see that it is doing any more than sedating her through the day. Hopefully, the absence of it won't affect her too severely. My thinking is that the increased Zonegran will temper the Klonopin disappearance. I was halving the Zonegran between the a.m. and p.m. medication doses, but today I am giving it all with her first meal. This should give me an idea of whether she is sedated with the higher dose. I hope she won't be sleepy.

I haven't posted about the house too much I realized. We are coming up on the fun parts! Well, for me anyway :) I am in the process of picking out the flooring, fixtures, appliances, paint, etc. and it's a bit overwhelming! However, it's coming along nicely. Once I get another good shot of the front, I will post it. The closer move-in time gets, the more impatient I get with waiting!

Tebow is doing well. He is a much better family dog than Stryker was. He still nips and gets me up at the crack of dawn, but it's far better than the zillion daytime and nightly bathroom trips Stryker required. I heard they cropped her ears! A pretty look, but not a nice thing to do to her :(

What more can I do?

So, over the weekend, I came to the agonizing decision to put Jade on Felbatol. For those of you familiar with it, I am sure you know how difficult it is to come to such a decision. For those of you who are not familiar with it, it has severe and sometimes fatal side effects. Patients/parents are even required to sign a waiver to have it prescribed. You must now realize what we've been up against. We have seen so many seizures over the past few weeks and months, that it was time to do something, anything. Thus, Felbatol.

Of course, I call first thing on Monday morning and explain my decision to nurse number one. I tell her that I want to place Jade on the Felbatol, but decrease and/or wean the other three drugs she is currently taking. Nurse says okay, let me talk to the doctor and I will get back with you. In the meantime, plan on coming up here on Thursday a.m. to sign the waiver. Great, okay.

I hear nothing on Tuesday and figure things are as we spoke about on Monday. But, you never know.

So Wednesday rolls around. I at least want to confirm this tentative appointment since our drive is two hours each way. The end of the work day comes around, so I call the after hours service and ask to speak to the neurologist on call. I was intent on having Jade admitted because she had yet another round of harsh seizure activity and, you guessed it, something needed to be done.

I get on the line with nurse number two. She tells me, sorry, but doc absolutely will not prescribe Felbatol because of its side effects. ??!! I was floored. This, after our October visit where we discussed at length the pros and cons of the drug with another neuro in the practice, and where I was led to believe we shouldn't have a problem getting it for her? Confusing to say the least. She tells me that if it is something we feel strongly about, then we should come speak to the neuro and find out why.

I know he is a conservative doc, and a very intelligent man, but wow, I was thrown for a loop! After a pretty lengthy discussion between us adults, we decided that there was no point in driving all the way up there to hear the same thing we heard the night before.

So, now we are left with increasing her Zonegran. Zip, zero, zilch. The fat lady has sung. Finis, finito, done. We are out of options. All I can say is, wish her luck with the Zonegran. So far, she is lacking the lucky charm :(

HAPPY HALLOWEEN!!!