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namely, Where was Cliff parking the mail truck when he went to Cheers? Having gone there on this trip, I’m not sure I buy that he was hanging out in a place that is so expensive to park.
At any rate, when I last left you I had gotten food poisoning in D.C. The next morning, Friday, I felt much better. No stomach pain, still off, but better. Once again I had cured myself in a day. And we wouldn’t even have to cancel the next day’s trip to Boston. Oh, oops. Fooled again, but went to Boston anyway. When I get to travel I can power through. Had we been at home, I’d have milked the bejesus out of the situation. But I lived. And lost a couple pounds.
This trip we extended for pleasure. We flew in Saturday, but weren’t needed by the study until Sunday night. We spent Saturday afternoon checking out Boston University since it was only a few blocks from our hotel. There was some sort of regional track meet going on and runners were there from several schools. In fact, some were staying in our hotel. Yeah, you know what’s coming. I officially crossed into “old.” I am no longer the one keeping people awake. I am now the one calling the front desk at 3 a.m. to report “those durn kids that just won’t keep it down.”
Sunday we went to check out Boston Common and the surrounding area. I was disappointed that all the water was drained and ruined my photo op. We came upon the cemetery where Paul Revere is buried. Too bad I’m not teaching anymore. Since for some reason the state of Georgia thinks he warrants six weeks worth of social studies unit (I’m not saying he isn’t history-worthy, just not six weeks worth), I could have used this photo when struggling for material, perhaps made up a story about digging him up at midnight and running through the streets screaming, “The zombies are coming!”
Most importantly, we went to Cheers so I could have a beer. I went to Boston when I was 16 and couldn’t drink. It felt so wrong to go to Cheers and not have a beer, so I finally fulfilled that ridiculous dream, in spite of my funky stomach.
When we had free time, we also checked out Chinatown, and we went to dinner at Ann Davison’s house, one of my former co-workers who moved to Boston last summer. This is the view about a block from her house:
Chinatown:
Back to the TSC study, which is the reason why we were up there–Sunday night (at 10:30!) we had to take him for an MRI. Since it’s for the study, it’s not sedated; it’s a sleep MRI. All my MRI knowledge comes from watching House. Remember those scenes? A person is in the tube and the doctors talk to him while he lays inside. Everyone shares deep thoughts, the doctors discover secrets about one another, and House has an unrelated epiphany and runs out. Turns out that television does not portray things very realistically. I wasn’t worried about getting him to sleep. That was a piece of cake. The problem was that since we had to stay in there with him, we were given ear plugs. Paranoid much? 45 minutes of whirring is gonna destroy my hearing? Please. Chris maybe. Took him three days to get his hearing back after I dragged him to Lady Gaga.
It turns out that an MRI doesn’t whir. It’s more of a cringe-inducing series of mechanical groans that reminded me of Ripley trying to blow up the spaceship in Aliens. So he woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to…well, you get the idea. Eventually we called it quits and decided we would be opting out of this portion of the study. I want to help, but you’ve got to be kidding me. One of the techs even crawled in there with him at one point to calm him.
We also had two days of testing, some of which were the same as what he did on his first trip. It was really great to watch because he has improved so much since last time. Plus, the last time he had two seizures, so he wasn’t to into it. We still haven’t seen a seizure since February 10! He was engaged, cooperative, and the difference was awesome. The only problem he really seemed to be having with the testing was that sometimes he was too busy flirting with the ladies administering it to do it. I looked forward to hearing how the scores would show how much better he was. Finally, the big reveal! And the scores show….regression! Regression? WTF. How is that possible? Here is why. The Mullen Scale is bullshit. Last time we were there, due to the seizures he got sleepy and some had to be completed by parent report. They no longer do that, which is understandable as I see how it could inflate scores. So this time, it had to be done in front of them. Yet, he can do more! How did he regress? Last time he could barely sit, and this time he sat the whole time! Well, the way they score it is that there are a series of things he must do to be scored on. If he doesn’t perform one item, they stop. So when they got to the item where he is supposed to lay on his stomach and reach for an item, he insisted on just rolling over every time because he hates being on his stomach. Therefore, he didn’t get credit for that, nor did he get credit for the following item. SITTING. I don’t know what items came after that, but he didn’t get a chance at those either. So he was rated at a 4-month level in motor skills. He is delayed, but he is NOT at a four-month level. So clearly this test isn’t going to be particularly helpful for our personal purposes. I’m happy to have him in the study and I like the ladies in charge, but the Mullen and I are not friends.
Connor’s physical therapist about flipped when I shared this with her. The Battelle test she uses on him requires three fails in a row in an area before you move on to a different section, not one. So while I had already dismissed the Mullen as a load of crap, her agreement made me feel even better. Some kids have splinter skills. Meaning they may lack a skill that should have come at an earlier age, but they have developed other skills that are more advanced. Connor is such a case. He can sit fully independently, maintain a standing position for at least a minute holding the couch, and as of his most recently PT session, he can also maintain a crawling position for a minute (we just gotta get him moving).
We also took the opportunity to have him seen in the Boston TSC clinic. Dr. Sahin looked him over and we did the Woods lamp test for the first time. Skin involvement is common in TSC, but Connor doesn’t have anything particularly noticeable. He did have some small raised white spots on his legs I suspected were TSC related, as well as a tiny white spot without pigment, but nothing I would have thought much of were it not for the TSC diagnosis. Dr. Sahin confirmed the little white bumps were tiny little shagreen patches, and the lamp revealed some other de-pigmented spots not visible to the naked eye. Nothing that really phased us. Perhaps there is a benefit to the possibility of him inheriting my pasty skin rather than Chris’s ability to tan. His white spots will be less noticeable. He also looked over the MRI that was done right before Connor’s surgery. He said he was too young for it to be a great MRI, but he did point out some tubers, and the SEN’s Connor has were very, very small. SEN’s are the brain growths that have the potential to grow and become SEGAs which can be very serious, needing surgery or the drug Afinitor, so it was good to hear his are particularly small. His social area of the brain also looked good. Connor will have his annual clinical MRI with them next time we go in August. We should be able to tell a lot more about what areas are affected then.
We cut our trip short by a day due to the storm that was supposed to hit. Naturally, that meant the storm ended up being downgraded. You’re welcome, Boston.
Random thought for the day: I think Connor should have been the e-Trade baby.
Because of Connor’s motor delays, we’ve introduced the chunkier foods later than normal. Now we’re starting with the finger foods. He just tried Cheerios for the first time.
Back-to-back trips = no blogging for a couple weeks. I’m not one of those travelers that’s motivated enough to lug around a laptop, much less add one more item to the list of things TSA can harass me about. I’m already getting crazy with secret 4-5 oz bottles of*gasp* liquid! On February 26 I caught an early morning flight to DC to join other staff and volunteers of the TS Alliance for training and meetings with representatives and senators. Little did I know that of the four flights I would have over the next couple weeks, this would by far be the best one. It was almost empty and everyone could have their own row. I was traveling with Wendi, and she’s one of those social types that actually engage total strangers in conversation (I’m trying, okay!?). We began talking to a guy that, quite by fluke of another medical issue, had discovered that both his daughters had a health issue related to a faulty gene as well. Theirs is quite different though. I can’t remember what it was called, but basically they are lacking the ability to create an enzyme that creates a protective coating of organs such as the lungs and liver. So although they don’t have any current health issues, the basic drinking and smoking that other people may partake in casually, is a whole different ball game for them. They are at a very high risk for cancer because of this. They are young now, but that’s a lot of pressure as they get older. Those teen and college years are going to be awfully stressful for those parents…
We arrived at the Melrose Hotel with plenty of time to spare before training, so we went strolling through Georgetown and stopped for lunch, where I categorically deny having any wine. We also happened by DC Cupcakes of reality show fame. Cute cupcakes, but honestly, I think they were from the day before. Apparently the sisters on the show (which I really don’t watch) only come in when they are filming. Oh, the lies of reality television. We all received matching shirts to wear on the Hill which is great for visibility, but bad for the amount of time I spent obsessing over what to wear before I left. I suffered a closet induced mental breakdown for nothing, but whatever. My Jackie O. dress is still a bit tight where my body mistakenly thinks there is still a baby inside. My ribs would have hurt by the end of the day anyway. We rose early to get through security and where I met my favorite government employee of all time. As we prepared to pass through security at the entrance of Cannon, there was a hysterical number of abandoned coffee cups just inside the door on a ledge. Had I had the time, I would have taken a picture. A female security guard walked over, took one look, and it was, “Oh Hell NO! This isn’t a trashcan! Tell those people outside to use the one out there!” Then she stormed off yelling, “This is bullshit!” I should apply for that job because I used to do that when I worked at Barnes & Noble and Starbucks, and I always got in trouble…
We Georgia volunteers managed to meet with the offices of all the representatives but three, Paul Broun and David Scott, as we never got a response to our requests from either office, and Sanford Bishop, who responded, but had no staff available to meet with us. The morning started off great as our very first meeting was in the office of supporter Rep. John Lewis who promised 
continued support. We had other positive meetings, but this was the only straight up yes on the spot. Of course, given that we were there just before the sequester, these meetings were a little different from what they would usually be. What we should have been doing was asking for them to sign the FY2014 Dear Colleague letter to support tuberous sclerosis research. Problem is, as you probably know, Congress never got around to dealing with 2013. So we were trying to get that through, and let them know that eventually there will be a letter for 2014. You see, the House wrote a bill that funded the Tuberous Sclerosis Complex Research Program last summer, but things came to a stop at the Senate and here we are still awaiting a budget for a year that will probably be over before anything gets done. So thanks to the sequester that went down a couple days later ,there are more cuts…to everything. I could rant here about how this kind of performance in the private sector would lead to mass firing, but other people are far better at discussing politics.
That evening the Alliance held the Volunteer Awards dinner, my final evening of being introduced to people and pretending not to know who a lot of them were already, as if I haven’t spent the last several months since Connor’s diagnosis stalking everyone online to see how others were faring with TSC. “Oh, hello, nice to meet you!” (In my head: So you’re the mom of so and so, who’s 10 years old, loves soccer, and went as a zombie for Halloween).
Dinner was steak, potatoes and asparagus. Why am I telling you this? It’s significant and will affect the next several days of my life.
Then there were drinks in the lobby, and a trip to a bar across the street.
It was a fun evening, but given the nature of the trip I didn’t get too crazy with the drinks. That turned out to be stupid. I might as well have danced on tables for all the good it did me because when I woke up the next morning, I was NOT well. Wendi had an early morning flight, and should be very grateful of it. I spent about an hour or so being “not well”. And then a miraculous recovery! That’s how I roll. I’m never sick for long. So I spent the next few hours before my flight checking out the monuments.
I found myself feeling particularly tired after a couple hours, which I chalked up to the fact that I hadn’t gotten much sleep the last couple nights, so I headed to the airport early. This turned out to be the only reason I got home that day. I arrived at Reagan to learn that my flight was cancelled and I could either go standby for the next two (full) flights home, or I could take the shuttle to Baltimore and fly from there. Two other early arrivers were in the same boat. I’m quite grateful to one of them, who is a weekly business traveler and had beat me by only a few minutes. Despite the clear skies and the fact that they had another (full) flight departing 45 minutes after ours, AirTran tried to tell him it was weather related. He called BS on that one, and they finally admitted the plane had mechanical issues. So at least for my irritation I got a free shuttle ride and plane ticket (which will probably be so blacked out I can’t use it). While I appreciate the free ticket as compensation given that I still ended up on a flight that departed roughly the same time, I DO NOT care for them lying. I don’t care if it’s typical of the industry…it’s crap. I also do not care for the fact that I had booked a 2:00 flight, and two weeks earlier I received an e-mail that my flight was cancelled and I was now on the 4:00. I accepted that change–it was fine. But now this, too. And he said, well we sent you an e-mail today. I said, “Yes, you did send me an e-mail today, and it contained my itinerary exactly as it still was. The reference to the cancellation, I thought, was reference to the 2:00.” And I’m not crazy because the business traveler got the same e-mail and didn’t understand the flight was cancelled either. His colleagues that hadn’t arrived yet would later receive e-mails that they could not fly out until the next morning.
At any rate, they paid for a shuttle in which we had to bully the driver into actually taking us. And then when he finally left, he turned around to go back and get someone else despite our protests that we would barely make it as it was. Nonetheless, we did make it. And I thought I was dying the whole way.
Turns out, I wasn’t better after all. But I can’t even claim nausea. It was soooooo much worse. More of a “stomach full of acid eating away at my insides” kind of thing. The TSA lines were thankfully short, just the perfect length in fact, for me to redress, run for the bathroom and retch loudly enough to horrify the entire row of stalls.
Oh my God, it’s Cambodia again. The only time I had ever thrown up on a plane before. Oh please, not again. I can still hear that mean French lady snapping, “Close ze bag! Eet smells!” I rode the wave of post-puke feeling better-ness into feeling hopeful all was well. Until I got on the plane and was seated next to two girls with attitudes that had seemingly never flown before. I mean, I don’t care if you’ve never flown, but I care that you can’t comprehend that the flight attendant has told you three times to shut off your devices and that you refuse to put your purse under the seat because the floor is dirty. I know an omen when I see one. I was so miserable between the bathroom and my seat, that I actually started to cry. The flight attendant was really sweet and gave me a hug. But then I was terrified of letter her know I was sick because she’d think I’d contaminated her, even though I was certain it was food related. Yeah, the ride home in Chris’s car wasn’t much better. But at least he brought plastic bags.
In defense of the hotel, I have to say I don’t know of anyone else getting sick. I thought the hotel was otherwise fantastic.
I feel bad if I picked this up elsewhere and I’m blaming them, but timing wise, I just don’t know where else it happened. And they were a little lax with the food I thought, as far as taking a long time to bring things out and letting stuff get cold…so that’s my guess anyway. I would have the pleasure of battling my body all the way to Boston, where I had to fly two days after I returned. But that’s for another entry if you made it this far…if the mention of vomit hasn’t scared you away. Don’t worry. That’s as detailed as it’s getting.
Ten days. It
has been ten days since we last recorded one of Connor’s eye rolling seizures with our SeizureTracker app. Yes, there’s an app for that. Just like that, after five months of this weird seizure activity and a 3-day in-patient EEG–nothing. It is awesome, and we just try to enjoy it without projecting ahead because there are no promises in TSC land. He’s so much more alert and engaged in the meantime. Even more giggly, more aware of his surroundings, and increasingly open to people he doesn’t know as well. He had his best swim class ever last week. I’ve been swearing to his instructor that my kid really does smile–I have pictures to prove it. But week after week, though he didn’t fuss or cry, he openly regarded us as dumbasses for requiring him to take an extended bath in an oversized tub to off key singing. But finally, he not just cracked a smile, but laughed and did all his own kicking without me prompting him to move his legs.
The class he has been enjoying immensely is music. He is very interested in the other babies, which is great because I want him to be inspired to crawl and move like them. First he seemed to have a man crush on Ben, but this morning a new love crawled into his life and knocked his socks off. Well, actually she crawled over and just yanked one of them off, but he was so instantly smitten by Priyanka’s bold gesture, that he grabbed both her shoulders and went in for the forehead kiss…or lick. He has made a wise choice. Mom is an ER doc. I feel good about having a doctor in the family. And if Priyanka ever seems distracted by any of the other boys, I’ve observed that I can win her back for him with my car keys.
Connor can now stand when bracing himself against the couch, which is nice. He is also firmly into the “it’s fun to throw everything on the floor” phase, which is less nice. He started speech therapy last week, and I sense some of his grumbling will eventually form into four-letter words. His speech therapist brought him some awesome bubbles that are unlike your standard Target bubbles. These don’t pop as easily, allowing him to catch them, stack them, and for me to scrape them off furniture for days afterward. But look how much fun he’s having.
Meanwhile, in adult world, I’ve been trying to motivate myself to go out more. It’s so easy to be lazy and do nothing when it’s cold AND you have a kid. I actually had two social engagements in one weekend. I felt like I was 27 again! Chris and I attended a paint and wine tasting function at a local gallery with our friends Giovana and Damien, taught by our friend Yuri Strom (insert reference to Yuri so that when she’s famous I can prove I know her). I love the way each of our paintings shows our personality. My “I need to please by doing it right, but I’m trying to emulate a carefree lifestyle” painting, Chris’s “OCD everything must be symmetrical” painting, Damien’s “I’m just here for the wine, so my sun’s gonna set in the east if I feel like it” painting, and Gio’s “I’ll show you, happy Tuscan countryside, exactly what pain is” painting.
The next “morning” I went to Barcelona Wine Bar for brunch…at noon. We live in the Bible-thumping state of Georgia, and only just got Sunday alcohol sales. Of course the government still feels the need to regulate the hours that is permissible, so they can’t serve until 12:30, thereby destroying the essence (mimosas) of the brunch. So, I guess it was really breakfast for lunch. Oh well. I showed the gov’ment by ordering an entire bottle of wine.
Oh, good. Everyone got the brunch boot memo.
One 45 minute test equals 4.5 hours in the hospital.
Ah, the electroretinography (ERG). a routine test you are supposed to have done every three months while taking Sabril (vigabatrin). You are also required to have an eye exam every three months because this particular drug carries a risk of loss of peripheral vision. Sabril has only been approved by the FDA for a few years. Before that you had to order it from Canada. But then it received approval here, the cost skyrocketed, it became heavily regulated, and it’s only available through specialty mail-order pharmacies. Many people resent being treated as if we’re too stupid to understand and take on the risks.
Given the risks, should we keep a close eye on the vision of our children? Certainly. But the intrusive nature of the ERG makes many families angry. It’s no simple test. We took Connor in for his second one yesterday (mmm hmmm, we’re behind schedule). We had to be at the hospital by 9 and get admitted through day surgery for a test that won’t start until 11. Yup, I told you it’s not a simple test. Then there is lots of information gathering, weighing, measuring, and finding a vein for the IV. Connor likes to make things difficult by hiding his veins. He always requires the IV team, rather than a regular nurse. Then we take him down to the room where they will place contacts in his eyes that test his reactions to stimuli. But he won’t be awake. He must be sedated with propofol (yup, Michael Jackson propofol). Once it’s over, we must wait for him to wake up and drink before they will pull out the IV and we are allowed to leave.
These tests and the frequency with which we are expected to undergo them frustrate a lot of people. We know there are risks to the peripheral vision. But we didn’t put our kids on this drug just for the heck of it. If someone is taking it, it’s for pretty dire reasons. The primary reasons I know of for its use are infantile spasms (why Connor is taking it) and frequent compex partial seizures that have not responded to other medications. Most people (based on my interactions on message boards) wouldn’t take their kids off this drug, even if they were told vision was being affected. Infantile spasms, left untreated, can cause major brain damage. What good is fantastic vision if your brain is fried? And the people taking it for other seizures have likely tried every cocktail in the book and are having so many seizures that their lives are being adversely affected to the extreme. So is being sedated every three months a bit much? You decide.
I’m not really freaked out by Connor being sedated, I guess because I’ve seen so much in his 10 months. I also know he’s being closely monitored. It’s not like Michael Jackson, who was abusing it with the help of a shady doctor. I just think the overregulation is an American agency assuming we are idiots. Should we keep an eye on vision? Yes. Every three months? Some people are on this drug for years. What hell. Especially if you are getting it through Accredo Pharmacy, specialty pharmacy of Medco. If so, you are probably already going through the monthly hell of securing your refill from this incompetent place.
We recently increased Connor’s dose of vigabatrin again in hopes of putting a dent in these eye rolling seizures. We are seeing some improvement. We actually had a day recently where we didn’t see any, which hadn’t happened in a while. We are also having more days in which we only see 1-2 clusters of eye rolling. But other days we see up to 4 or 5. Then again, for a while we were frequently seeing 4-6, so it’s definitely an improvement. His other seizure med is keppra. His neurologist is considering adding Onfi, and if it seems to help, we will wean him off the keppra.
Any TSC families reading this, I will be going to DC at the end of the month with volunteers from all over the country to meet with members of Congress regarding TSC research funding. I’m in need of personal stories and letters to your congress people. If you can help, e-mail me at pin.the.map@gmail.com. I can give you more details.
Thanks to everyone who has been voting for me to the right by clicking on the Top Mommy Blogs button.
My goal is to blog 2-3 times a week, but clearly that has not been happening lately. Our weekly schedule has gotten a whole lot busier. We’re really trying to amp up our time we spend with Connor working on his physical therapy. He’s finally sitting independently! He even retired his bathtub lounge chair and sits up like a big boy for bath time. He also had a checkup at the pediatrician and she recommended giving him solids three times a day. I may have let her assume I had stuck with her previous recommendation to go up to twice a day…
Look, it’s not that I don’t want to feed my child, but for the love of God, when she said three times a day, I almost asked her if I could just take a bullet to the head instead. When Connor started solids he was pretty cooperative, but as time went on, he decided it was fun to swing his head around vigorously while we desperately try to catch his mouth. Sometimes he seemed to think this was funny. The thing is, he doesn’t complain when the food is in his mouth, he just wants to make a game out of letting us put it in. Meal time stretched into oblivion. But I’m happy to say that while getting three solids in EVERY day has proved to be elusive, we are consistently getting him two, and once he realized we weren’t giving up, he started to become more cooperative. Sometimes, he chows down in a matter of minutes. Especially prunes. Hmmm.
We’ve added a few other things to our weekly schedule as well.
Monday-private music therapy
Tuesday-physical therapy (most weeks, not every)
Wed-group music class
Thurs-swimming
Fri-Mommy lies on the floor exhausted letting baby beat her about the head and rip her hair out just so she won’t have to get up.
And it won’t end there….we are looking at adding occupational therapy (more as a precaution as his fine motor skills appear much more on target than gross motor), and speech therapy (you’re probably wondering what this looks like with a baby that doesn’t even talk yet. Me too. I’ll let you know.)
Lest you think I’m going to be one of those overscheduling moms that ends up on Dr. Phil, this is all intended to be therapeutic and catch up on his delays. My dream is for him to catch up to his peers so I can be a normal mommy, dump him in front of questionable television programming, and spend all my time in the Macy’s shoe department.
We had a highly amusing moment in swim class the other week. One of the baby skills is blowing bubbles in the water. I kid you not, right as the instructor has us put our mouths under to do so, Connor makes the most incredible bubbles you’ve ever seen. Just not with his mouth.
I’m hoping he will learn to give me a kiss soon. I have no idea at what age kids learn that, but the other day, I thought we were there. I leaned down to give him a kiss, and he immediately reached up, grasped my hair on both sides of my head, yanked my face down to his, and….bit my nose. Soooo, yeah. No more Walking Dead for him.
Which leads me into some thoughts I’ve been having about some of the items that dropped his scores in Boston during the cognitive testing. Apparently, he should know the word “no” by now. But I realized he really hasn’t had the opportunity to learn it. Not to sound like one of those permissive moms where anything goes, but the reality is we don’t have a lot of stuff to say no to. He’s not as mobile as the average 10 month old, so he doesn’t get into stuff he shouldn’t. And I seem to want to teach him bad habits by snorting with laughter when he’s tearing my hair out of my head or pffting food at me. I’m going to rectify this by placing the following items around him on his playmat: a rat trap, household cleaner, a stick of dynamite, matches, and a machete. Every time he goes for one of those items I will scream NO! And that will be that. I should write a parenting book. There’s more gold where that came from.
I’ve also been busy preparing for the March on Washington coming up at the end of February. I’m working on updating the Faces of TSC booklet which features Georgia families affected by TSC that we share with our representatives and senators when we meet with them. I also started contacting some of the representatives to set up our meetings. This proves to be more challenging than expected as some don’t confirm a meeting until the last minute. There goes our brilliant plan to organize meetings in advance by building. But I’m excited about it. I think this will be a really interesting experience.
(Please don’t forget to click the Top Mommy Blogs link to the right to vote for me! You can vote once every day.)
I love the way my blog shows me search engine terms that have led to my blog (except in the case of the person that was googling “baby torture”. I guess that will teach me to make jokes about physical therapy). A lot of people are finding my blog searching for Casey Revman Runner’s World TSC. Interestingly, my blog seems to be the first to show up in the results…but I’m guessing all of you are looking for the article, which seems hard to find, so here is the link to the article that ran in December’s Runner’s World.
I have also been nominated for Blog of the Year 2012 by a fellow blogger and, in turn, will be making my own nominations shortly 🙂 Thanks, Sylvia!
A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!
Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.
He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.
I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).
Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.
So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.
And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.
Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.
Having your own Accredo issues? Please read my followup on Accredo here.
We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.
I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.
Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early. Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.
It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.
We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.
We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.
Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.
Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.
All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.
We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.
His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…
Mixed Up Mommy 