Monday, December 29, 2008
Tuesday, December 23, 2008
Thursday, December 11, 2008
Friday, December 5, 2008
I LOVE the day after Thanksgiving...it's when I allow myself to break out the Christmas cds...I have two faves...Jewel, of course (Al, I'm still faithful to this one -after, what, at least 8 or 9 years and 3 copies later!) and my Sarah, which I think I got two Christmases (lol, sp on that one?) ago?? I think. I love some Bing, but sad to say after buying two copies, I can't find either of them! I'm a traditional freak, so I can ONLY listen to them between Thanksgiving and Christmas...after Christmas, in the case they go not to come back out til next year!
My mind is turning with ideas for the Christmas card pics...Last year we took some last minutes by the tree...I was definitely not a good planner with a colicky 2 month old at the time. I even think the cards came out after New Year's! LOL I'm still cutting it close, but as long as they get out by Christmas this time, I'll be satisfied!
I can't divulge too many details, but we got the outfits (yeah, plural for BOTH our babies) a couple weeks back...and it may be a little Grinch-y...hmmmm. That could change..we'll see.
I must, must, must be realistic...an ashamed, costumed dog and a teething 13 month old...I'm already thinking of Plan B's. I know improvisation is inevitable! :)
By the way, helmet should be here Monday! :)
Wednesday, December 3, 2008
We will all be much better off with a team that cares even if we have to drive across the state to see them!
I'm just waiting for Austin to get up from his nap so we can go get our helmet ordered. I wish we could have done this sooner because we'd probably have it by now. I had no idea it would be such an ordeal...I'm excited to get it though so I can relax a little with him. He'll be soooo happy to get back out on his own and walk! There's no telling what he'll be able to do once I ease up a bit. I know he senses my nerves...I just know it. He'll be so playful and proud, but as soon as I run up to him and try to guard him he's not interested in much anymore. Now, I won't even let go of his hands...but, that's about to change, I hope!!
I'll keep you all POSTED!!
Monday, December 1, 2008
Wednesday, November 26, 2008
I decided yesterday to give them the benefit of the doubt. Instead of stalking them by phone yesterday wanting to talk to someone, I tried to be patient...to see if they would actually call me back. Well, of course they didn't yesterday, so I kept my cell on the nightstand last night in case of an early am call. Still nothing, so I called back at 9:30.
The lady who answers looks up our info and says, "Oh, she mailed you a script for the helmet."
The last thing I was told yesterday when I called was that someone would be calling me shortly to discuss our options in helmets. Hmmm. I guess they just assumed that I would wait patiently while my child is constantly hitting his head and just figure it out when we got the script in the mail! That still doesn't help me much.
I could go into a lot more detail on this one and why it's making my skin crawl, but I think you all get my point without all the nonsense.
Those people are unbelievable! Eeerrrr.
We gotta get a new team!
BUT, besides all that...
Austin is doing well. We had our first increase of the vigabatrin last night. I haven't seen too many spasms...Maybe 3 or 4 so far. It's close to 11 am now, so we will see as the day progresses. So far so good though!
I think he's cutting several teeth right now which is making him SUPER loud! He's trying to tear into everything in sight! So funny to see him try to stick his whole fist in his mouth!
Unless something major happens between now and Friday, I doubt I will have a chance to get on here much. We're doing 2 days of Thanksgiving! Why didn't we start doing this sooner?? Oh, wait because of me! Miss traditional (me) just couldn't stand to have turkey on any other day but Thursday! Now, I'm thinking how much easier it's going to be on everyone to divide it up. No having to eat and run on to the next family!
So, Happy Thanksgiving to everyone! And forget about those diets!!
Tuesday, November 25, 2008
Spasms are a little better amount-wise...but intensity...Whoa. He hasn't walked solo since about 11 am. He had a slam on the carpet and that was enough for me. He cried, I cried, and our social worker almost cried. It just breaks my heart knowing that it's dangerous for him to do what he loves most of all. Walking.
So, I got busy trying to find a protective helmet immediately after the social worker left. I called the insurance company first. Then the durable medical supply places. Then our epilepsy clinic (for recommendations). Then got online to check them all out again. Everything is set for when we actually choose the one we want...After we get a recommendation and certification from the epi. So, surprise, surprise, that's the only thing holding us up! No call back...as usual.
I'm giving it until noon tomorrow and I'm going to use my best judgement to order one. The longer I wait on them, the longer it will take to get the ball rolling. I probably know better what he needs anyway. I'm the one who knows exactly what gets impacted on falls...I just thought it would be helpful to have someone with experience recommend a good one. There's several to choose from.
I'm not giving up yet on the vigabatrin, but I'd like to be prepared if it doesn't work. I've already cleared out all the "problem toys" that make me a nervous wreck for him to play with. I thought that would calm my nerves a bit. And it did...until he started hitting his head on the floor so hard. Now, he's back to being "bubble boy". That's what I need...bubble wrap for every hard surface in the house...hmmm.
Anyway, he's been such a sweetheart today despite Mommy being so controlling! I've been getting tons of smiles and giggles! He's coming around in that department. Much more interactive. So good to see...I missed that so much!
Madie and Trev, I'm thinking of you two!
Monday, November 24, 2008
Mom, thanks for the encouragement to keep it going despite the fear. Not one tear shed since we spoke.
Jen, thanks for sending me to Connor's site. What a fighter! What a strong Mommy she is too. It made me realize how much I need to focus on what he IS doing. My Austin IS rolling over...he's WALKING! He's not seizure free, but he's an active, happy baby despite all the seizures. Yeah, he's delayed in a lot of areas, but he's starting make a little progress here and there.
We WILL make it through this. If vigabatrin's not the one, we will keep searching until we find THE ONE.
I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.
It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.
So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).
We are trying to take it one day at a time, and this day stinks.
Tuesday, November 18, 2008
Monday, November 17, 2008
Saturday, November 15, 2008
We're going on a week now...
What's the hold up?
Surely it's not STILL sitting in NY!
I'm crossing my fingers that USPS is merely failing to update tracking info for the vigabatrin that's supposed to be on it's way to us. No news since it arrived in NY on Nov. 9. I'm not familiar with international shipping and how the customs procedure works...Hope there's not a problem there.
Al, with her optimism, tries to reassure me that it's only a technical glitch...that it's on it's way and will show up at my door any day now.
I can't take the suspense any longer! Now that we have other avenues to pursue, I'm ready to get this stuff going. I'm dying to find out, once and for all...if this is it. THEN, I will know whether or not to cancel the MRI in December and make an appointment in Detroit. If OUR hospital can't get us in for two months, I can't imagine what the wait must be like for Dr. C's! BUT, that's only if the vigabatrin doesn't work. SOOOO, we need that stuff NOW, so we will know by then. These seizure meds are always a test of patience to give them time to do their thing...it takes dosing tweak-age, time, and sometimes even creative cocktails of different meds before you really know. I just hope Mr. Doom and Gloom ES guy knows his vigabatrin!
Friday, November 14, 2008
For some reason I just had a sudden urge last night to email the most sought after neurologist (for Infantile Spasms) in the world for his opinion on my hunch. I left out no details as to why I've been suspecting a connection with Austin's spasms and the left arm dominance.
And within hours I got word back...Can you believe that? Probably the busiest pediatric neurologist in the country responds to me quicker than Austin's own doctor (who really uses his nurses to respond).
He agrees with me. He believes that what I told him does suggest a focus. He said that would explain Austin appears to have a sensation in his right hand. Why the left arm is dominant. Why there is movement on the right side during some seizures.
Although nothing is confirmed through testing, I just feel a huge weight lifted off my shoulders. Nothing has changed, but somehow I feel better. Maybe because I don't feel so much like a lunatic anymore. This man agreed with me. Our nurse would barely even listen to what I had to say when I called about it last week. I seriously think she used her own judgement to determine what to tell the ES and that was that. When she called back, her response was no where near relevant to my questions.
I'm still in the process of collecting videos of Austin's seizures and writing a letter to send the ES. I want to know, without a doubt, that he gets all the accurate, unfiltered information and can even see for himself (as opposed to the nurse deciding what SHE thinks is important). Since I have gotten validation from the IS guru himself, I will know that if he dismisses me, I need to dismiss him!
Dr. C recommends that we go ahead with the vigabatrin. If it works, nothing more should be done, but if it doesn't, he wants to evaluate him in Detroit to see if he's a surgical candidate. Surgical? Scary, I know. I've tossed and turned over this one many times...even though we've never even discussed surgery as a possibility. But, I'm sure many parents dealing with this must secretly hope their child could be a candidate. That would mean possibly an end to this nightmare...a possible cure...possibly a relatively "normal" life...Could I do it? Could I let someone do that to my baby? If it meant his chance for seizure freedom AND a normal life...
That's not a decision that I can give you the answer to now. Even after all the articles, books, and success stories I have read. The fact is, EVERY case is different...which means different associated risks for every child. I can't even begin to fathom what an excruciating decision that must be to make.
I am just praying that this vigabatrin works, and we won't even be faced with such a decision.
We will just have to cross that bridge when we get there.
Wednesday, November 12, 2008
November is Epilepsy Awareness Month and we need your help! As you know, we're asking all Americans to sign our epilepsy petition (http://www.epilepsypetition.com/).
Our goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message! So far, we've collected 10,000 signatures online.If everyone that signed our online petition collected just 10 signatures, we'd reach our goal! Will you take a few minutes and collect 10 signatures in the next couple weeks and help us reach this amazing goal?
Collecting signatures is a great way to raise epilepsy awareness.The more we talk about epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Collect some signatures and help us make a difference!
You can obtain a copy of the petition by clicking here .
If you have questions, comments or want to get more involved please contact me at the email address below. Many thanks for your support!
Director of Grassroots Advocacy
8301 Professional Place
Landover, MD 20785
Wednesday, November 5, 2008
Tuesday, November 4, 2008
I'm impatiently waiting right now for someone to call me back from the epilepsy clinic...I'm starting to piece some bits together that could potentially be extremely significant. I know I've talked about Austin and his preference for his left arm. It's becoming even more obvious that there's definitely something to this. I've wondered since I first noticed it a month and a half or so ago, if maybe there's a focus that can be identified. For those of you with limited knowledge of seizures (that's me too -but I'm learning a little more), there's two classifications: partial and generalized. Within those classifications there are different types (too many to list). Austin's seizures are considered generalized myoclonics. Generalized meaning the whole brain is affected, and myoclonic being the type of seizure ("muscle jerk"). It is hard to determine the focus (where in the brain the seizure originates) in generalized seizures, probably because it spreads so rapidly throughout the brain -as opposed to partial seizures that involve only certain parts of the brain. I'm certainly not going to go through all of the details because it is very complicated...I just needed to explain the basics so everything else will make sense. Generalized seizures are more difficult to control, particularly myoclonics. If an affected area in the brain cannot be found, then the treatments are limited -namely surgery. With Austin, I'm starting to wonder if maybe there's something to be found in the left side of his brain (left side of the brain controls movements on the right side of the body). I also just read that speech is typically located on the left side of the brain as well. He had a looong cluster day before yesterday...only his right arm and right foot would move. He's always, always, always "checking" his right hand. He brings it up in front of his face and holds it with his left as if he's getting a some sort of sensation. Not only that, he tends to prefer using his left arm/hand for everything. Sometimes he keeps his right arm plastered at his side as if can't use it at all (I know that's not the case because he does use on occasion). All of that combined with the fact that we first started noticing him grabbing his right hand around the time we first noticed the spasms. I did not connect the two until very recently. We thought it was cute, him grabbing his hand...it looked like he was checking his pulse! I remember him doing that in the hospital and he had just started doing it. Only when I started thinking something was strange about it, did I realize how long it had been going on. Quite a coincidence...Anyway, I didn't mean to get into so much detail. I'm just soooo curious as to what this may mean. It could give us the insight we need to explore certain areas. It could be Him giving us a direction. Or...I could be misinterpreting and it could mean something devastating. I certainly don't know enough about the anatomy of the brain, or epilepsy for that matter, to draw my own conclusion. Call me back people! I just want to know what this doctor may suspect...some possibilities anyway.
Well, there's my ramble for the day. I keep checking Madie's blog to see how the new meds are working...I'm starting to get concerned...no post in nearly a week. Oh, I hope it's helping...Post Jamie!
Monday, November 3, 2008
On the same day of his well visit, the poo mystery was revealed. It is a bacteria, but not the lactobacillus gg. It's clostridium difficile (or CDF for short). It can be caused by antibiotics or from person to person. My money is on the antibiotics since the symptoms started just days after the antibiotics. We're going to treat with yogurt for now and possibly medication later if it doesn't resolve soon. The gastroenterologist did say that the fact that his immune system has been compromised, would greatly increase his chances for developing this bacteria. It only further confirms to me that he may not be ready for such a large dose of immunizations.
Oh, I almost forgot...we're starting vigabatrin soon! I'm anxious to get it rolling, but scared at the same time. It has been my safety net, so to speak. Through all of our trials of meds, I've had vigabatrin in the back of mind to keep me positive. I know we haven't completely exhausted our options, but I've been looking to this one to be our miracle. What if it doesn't work? Then what? Topamax? Ketogenic diet? Surgery? Besides surgery (if that's even a future option), I just don't have the high hopes for those as I do vigabatrin. We are having to order from the UK so I really don't know when we will actually get started, but I'm praying it's the last one we will have to try.
One thing he is doing quite a lot of is walking, walking, walking! He's still not running around or anything, but man, he's really starting to get around. He can probably take up to 15-20 steps sometimes! Then, there's times where he can't seem to put one foot in front of the other. He's certainly getting his fair share of practice though! We "walk" around the living room the majority of the day now. Of course, I've got a tight leash on him to keep him from hurting himself, but hopefully, I can lighten up soon.
Oh, I'm remembering all kinds of new stuff to tell you all! I guess I need to post more often to keep them shorter! At his well visit, the pedi suggested we stay on formula for now since Austin's still not eating enough solids...man, how I was hoping my formula buying and mixing days were over! BUT, he's starting to pick up the pace a little now! I can't believe how much more he's been eating over the past few days...I think yesterday he took down nearly 4 jars of baby food, a container of YoBaby yogurt, AND some potato salad! He was loving that potato salad! That's one of the first times I've been able to get him to eat table food, so that was a big step for us! Big boy milk, here we come! :)
Tuesday, October 28, 2008
Thursday, October 23, 2008
I've went on and on about how I never expected us to be in this situation...the disappointment, the anger...blah, blah, blah...Yeah, I'm soooo sad that this wasn't my ideal life...BUT, who does get their perfect life? Everyone has obstacles and roadblocks on their paths to the perfect life. I'm starting to learn that maybe this is just a detour and not a complete change in destination. Gosh, I hope so. I pray that one day very soon we will get passed this point on the map and just truck on to Italy. I've always dreamed of Italy, but Holland would be okay too!
So, here we are...in transition (at the airport?), waiting to see where we will be going!
Oh, this stupid IS! Wouldn't it be so much easier if we just knew something??? What route we will be heading??? Will our babies be part of the lucky 15%? No one knows. Isn't that the hardest part? Wondering what the outcome will be...will the delays or damage be permanent, will they recover...partially...fully..at all? What is the perfect drug...what's the perfect dose? As horrible as this may sound, I would rather a different disease -of course, not life threatening, but treatable. At least then I would know what to prepare for and what to do for my baby.
But, that's not in the cards for us. We are dealing with IS, and I'm trying to learn how to deal with it and accept it. I'm trying to stop pretending that it's a dream, or suddenly time will turn back. It's not, and I have to move on and help Austin. If I only knew how. Love, acceptance, hope, advocacy, and patience are about all I know right now.
The best thing right now is that Austin seems so much happier. The happier he is, the easier the journey. ACTH wrecked everything -we had continuing spasms AND misery to accompany them. Poor baby...he still hasn't recovered his good sleeping habits. But, thankfully, it's nothing like it was! He's losing the weight (and unfortunately his appetite), sleeping much better, seems to feel WAY better...everything is a little better in a sense. At least it's not all the spasms AND the ACTH effects anymore. I wish we would have never started that treatment, but I would have always wondered if it would have worked. At least there are no doubts.
Now Zonegran! I know it does have some effect on the spasms. The nurse at our epilepsy clinic didn't seem to think such a tiny amount spilled would make such a difference. She kind of acted like I was overreacting...I've seen this happen at least three times now! It's not a coincidence. EVERY single time that has happened (where he didn't get all of his dose), there has been a dramatic rise in spasms soon to follow. Plus, there's the new cold, his tummy issues...add it all together for an even lower threshold for seizures. Like I said before, I know my baby. They may have treated lots of kids, but if they knew it all, we wouldn't still be dealing with this right now!
We are going BIRTHDAY shopping tomorrow! Yes, I am THE procrastinator! Party is Sunday and I'm shopping on Friday! Classic Holli for you! I'm getting so excited...I've got balloons, banners, crepe paper, you name it...I can't wait to decorate...but, of course, I'm sure I'll wait 'til Sunday morning! :) I'm sure Mom is laughing right about now!
Wednesday, October 22, 2008
Thursday, October 16, 2008
Tuesday, October 14, 2008
I've noticed a very slight decrease in seizures/spasms. He seems to be adjusting a little more to the increased Zonegran dose too (we're up to 300mg/day now). At first, I was beside myself because I couldn't see what good it could do since all he wanted to do was sleep. He would get up, take meds, practice standing for a while, and was ready to collapse. This cycle would continue throughout the day. He's still sleeping more than normal, but his alertness is improving slowly.
Another reason I've been sort of MIA lately is because of this new book I've been reading. I've just been glued to this thing. Although it doesn't tackle Infantile Spasms so much, it does have tons of info that I've been trying to understand for months. It actually makes sense. I was telling a fellow IS parent about it earlier in an email. It points out so much that I need to check into. I'm learning more from this than all the research I've done over the past five months combined. I'm looking into every possible avenue for an underlying cause...whether that means finding it or ruling it out. Remember, we want to rule them ALL out. We DON'T want to find a devastating metabolic disease, brain abnormality, etc. BUT, it is so crucial that we know one way or another. I'm also realizing that every little detail matters. The right arm (not sure if I got into that on here -I will soon), the direction he rolls his eyes during a seizure...
These doctors MAY spend thirty minutes observing/evaluating these kiddos every few months. In that time they may or may not have a seizure. I'm with Austin 24/7, so I KNOW when something is off, or when something new is occurring. That's all I do, all day, everyday...is watch. Watching for a sign of either something new, or something that could point to something else. When you don't have ANY answers about ANYTHING, all you can do is LOOK LOOK LOOK. I'm looking for anything and everything that the docs may not have the opportunity to see for themselves...that could be relevant and crucial. Just as I told Danielle, my old preconceived notion that these doctors know it all, is gone...out the window. Duh, I know they know more than me...BUT, they DO NOT know my baby more than me! I know every move he makes, they certainly don't!
This book has inspired me to take control of the situation. To explore options, research, observe...I did not realize how important that could be. There is SO much more to this disorder than I thought...thanks to our horrible previous neurologist that didn't have a clue!
I will definitely try to update more often. I've just been so consumed with all this new info...still trying to figure out where to start!
I still have so much to say, but running short on time...Austin's up from his nap and we're going to get ready to head to NANA's!!! I'll be checking back soon...
Wednesday, October 8, 2008
Monday, October 6, 2008
First of all, nothing has really changed in Austin's condition. There are some issues that I tried to blow off because I did not want to see them. We did not find anything new at our appointment, we just were more informed and the veil I was using to conceal the unwanted was lifted.
Unfortunately, Austin's EEG showed no improvement. It only further confirmed how much he is struggling with. He has what they call "myoclonic seizures", some of the most difficult to control. I'm not going to get into very much detail on that, just enough to explain what we are up against. In fact, I still consider myself uneducated in that area...although I'm trying to learn more. The fact that his seizures have not been controlled by ACTH, Zonegran, or Keppra is a big concern. It indicates that we may be dealing with "intractable seizures", seizures that are difficult to control with anti-epileptic drugs. However, I have not accepted that just yet. There are still several options we have yet to try. It may just take longer to find that right dose and/or drug. Vigabatrin is still an option, even though the doc did not want to give us false hope that it will work.
Now, the hardest part. We have loads of new testing we will be doing. We had to repeat a genetic test to rule out a genetic disease as the underlying cause (it will take several months to get the results). We had to repeat because the first came back inconclusive. Second, we will also have a repeat MRI to check his brain again. I was misinformed by his neurologists earlier on about this one. It was done while Austin was in the hospital the first time. It came back normal. However, we were just informed that an MRI done that early in life is unreliable. He will also have a lumbar puncture (a spinal tap to test the spinal fluid) following the MRI. I guess those results will determine which direction his treatment will go. These tests are crucial. We want to rule out these possibilities and we do NOT want to find what they are looking for in them. Anything found can negatively affect his prognosis. Unfortunately, I have to add that his doctor implied that we may. I pray that we don't. A truly idiopathic case (meaning there is no known cause) has the best prognosis of all. Especially when the child is otherwise normal (developmentally)...AND has a quick response to meds.
We have two of these factors working against us right now...and one more to be determined -the testing. I have raved about Austin's development, I know. And, his gross motor really is something for me to rave about. But, I have left out all the other details. I have not shared much of my concern about his other skills -except maybe his babbling. He has not made much progress socially/verbally/communicative since he was diagnosed nearly 5 mos ago. I blamed it on his meds. It's possible some of it may be due to the meds, but not all. I wanted to blame it on everything but what it is. Regardless, Austin is taking steps...a truly miraculous milestone in my eyes, and I'm not trying to take away from that by pointing out negatives.
The spasms continue. We increased the Zonegran by 50 mgs/day and decreased the Keppra by 2mL/day and are adding B6 as well. We will have him completely off the Keppra by Friday...it was a joke to begin with, but that's another story...maybe I'll share that one later!
I'm trying not to put a negative spin on things here. Truth is, it's not all as negative as I may sound. There's still a lot to be determined and so much can change over time. It's just far more serious than I let myself believe or accept. I knew that this diagnosis of IS was going to change everything from now on, but what I didn't realize was that it is going to be this hardest battle we will ever face. It is going to take all the patience, persistence, faith, prayer, hope, and love to get Austin through this. I'm not prepared to do anything less than what it takes...regardless of how much hope the doctors think we have.
There is so much more to say, but I think this post is long enough for today. Thanks for all of your encouragement and prayers! I will definitely keep you all posted on how he responds to the latest increase of meds.