Well where do we begin. It’s been quite a while since we have had an update so here goes! Johns last MRI was in September of 2012 and all indications is that the growth on his left occipital lobe is stable. There does not appear to be an increase in its size. Both Dr. Takeoka and Dr. Sahin from Boston Children are pleased. We will continue to get yearly MRI and monitor it closely. We also had a neuro-psych eval done on John by Drs. Boyer and Heideman. Dr. Boyer is the tops in her field and very hard to get an appointment with, but thanks to Dr. Sahin and the Sturge-Weber protocol in Boston, we did. They had him for two 3 hour sessions. The purpose of the test is to determine where John is, compared to his peers. This test is also a good indicator of where we are with Johns IEP (individualized education plan), and what services he requires. The long and short of it is this. He’s okay. John will continue to need some speech therapy and occupational therapy at school, which we expected. The greatest relief was hearing that John is a normal well-adjusted kid. We never know if we are “doing it right”. We asked about therapy and how to address Johns feeling about losing his Mom. They let us know that we are doing just fine. Meghan and I almost burst in to tears, we were so happy to get that news!
The bad news! You knew it couldn’t be all good news. After playing musical doctors for Johns eyes we have come full circle. We started when John was very young by seeing Dr. Fulton at Childrens. She is on the Sturge-Weber team. We followed her advice and were seeing our regular eye Dr. in Springfield. About a year ago after patching and glasses and the whole nine yards we moved on from him. The Dr. told me we have taken John’s vision as far as we could and that now we would just have to monitor it. Well that wasn’t good enough for me. We ended up at vision therapy in Northampton. Dr. Ruggiero gave John a very in depth eye exam and testing. We proceeded with 3 months of vision therapy. At the end of the therapy it was recommended that we get a second opinion at Mass Eye and Ear in Boston. We ended up seeing Dr. Rizzo there. After more testing, he basically told us we needed to get Childrens and see and eye specialist there. It was then that we knew only Dr. Fulton could help us. Finally we went to see Dr. Fulton. We discussed patching, therapy, and my whole problem of bouncing around. She and two other eye Dr.s examined John for the better part of 5 hours. He was so patient. On the one hand your so proud of your kid for having such a good temperament and patience with the tests. On the other hand, its sad, because he is so patient due to having to have so many tests in his short life. Dr. Fulton thought she may have seen something on his cornea. She said that 95% of Sturge-Weber kids have the same thing and only a handful require any kind of surgery. To be on the safe side she suggested that we meet with the surgeon Dr. Calderon. Her thoughts were that if John’s eye pressures increase and we need to get him into surgery, at least Dr. Calderon will be familiar with John. So, in the end, we are watching Johns right eye very closely. The left eye is virtually perfect, but the right is not very good at all. John wants to play baseball again this year. I explained how he would have a hard time because of his vision hitting the ball. He didn’t care. (tough little kid) Needless to say we have a lot of practice ahead of us!
10/29/12 A long overdue update
It's been so long I don't know where to begin. The seizures, well there are under control! Thank God, and without the use of meds. At our most recent MRI we see that the blood vessels are pretty much the same. The lesions or whatever you want to call them on Johns brain have been staying put and we are so very lucky. Its the eyes. The eyes have been whats really been giving us the run around. Johns right eye is almost legally blind. On top of the that the depth perception is working against his good eye. As he reads he tilts his head to almost shut off the the right eye so that it doesn't conflict with his good one. The words seem to float around the page and it is making it difficult to read. We tried vision therapy for several months and you just never know if its working or not. At a recent Sturge-Weber conference I all but tackled an eye Dr. after his speech. I was in tears just begging for help. I can't seem to nail down the answer to whats going on with his eyes and what the best treatment is. Then like an epiphany it hits me. There are no answers! John is in a small family of Sturge Weber kids. You never realize it until you go to a conference and look around the room. Only a couple of people from Massachusetts are there. Its just rare. Regardless we push forward to get some answers or at least some treatments to improve his vision. Its a constant struggle to get him to use that eye more and more. His body will eventually turn it off because its a pain in the ass to him, We WILL NOT let that happen. So we have some upcoming appointments with some specialists in Boston and we will nail this down. You feel bad for John and yourself for a second, then you realize how bad some other kids have it. We are keeping are heads up and fingers crossed. One day at a time!
05/07/2010 Visit w/Dr. Sahin at Boston Children's Hospital
Today was our 6 month visit with Dr. Sahin. We also see Dr. Takeoka at BCH every 6months, so we end up going there on an every 3 months schedule as we try to alternate appts.
Traffic was a bear on the way up although we left at 7am, we made our 10am appt just in time!!!
JP weighed in at 42 lbs and is now 42 inches tall! Almost as tall as Mommy! LOL!
Dr. Sahin was pleased to hear all the things JP is involved in: Tae Kwon Do, Tball, and pre-school. He is also glad the migraines stay away as long as we are mindful of his diet (not giving JP too many nitite containing foods in one day(cheese, hotdogs, pizza, donuts, etc). Jp's reflexes are all normal. The next step is do his annual MRI--the new protocol for SWS is annually and JP's last MRI was in Jan of 2009.
His trileptil (seizure med JP takes) lab level came back as 13. The MD likes the level to be therapeutic btwn 15 and 30, but closer to the 30 end to have a most beneficial effect. Sr. Sahin increased the trileptil dose to 10mls twice a day instead of the 8 mls twice a day which he has been taking. Of course this omes after Mommy placed the 3 months refill for the 8ml dosing. UGH another fun phone call day with insurance companiesto come!!!
The GREAT news is, that Dr. Sahin wants to see JP annually instead of ever 6 months now since he is doing so well! We had increase his visit frequency a couple of years ago when his migraines were more often. But since things are going well, we can cut down on our visits. However, he encouraged us to call him right away if any seizure symptoms presnet themselves or anything else comes up!
Thank you all again for your prayers! Mark, John and I KNOW they are working! :)Kel
Boston Children's Follow Up with Dr. Takeoka.
We had an appt. for 2:30 which was not the best idea. Since we were so late in the day, it took us almost am hour to get seen. I guess we realized quickly that the earlier in the day you are, the less likely you are to get pushed back and delayed. When we did get in, JP checked in at 39 lbs. of pure boy! The doctor checks his reflexes etc and all was in order. He suggested that we raise his Trileptal to 8ml twice a day to stay consistant with his weight and to keep the level therapeutic. John was very well behaved considering the delay, but was eager to show the Dr. his new train cars. We ended up grabbing lunch in the galleria across the street and stopping in the Harvard bookstore. Of course we couldn't get out of there without getting a couple Thomas the train cars. Since JP was such a good bo, we caved pretty easily. We did ask Dr. Takeoka about some night terrors that JP has been having. Dr. Takeoka said that for his age that the terrors were pretty normal. He also said that as long as they were not seizures then we shouldn't really be concerned. All in all it was a pretty good check up overall. We zipped home after being in traffic quite a while as JP slept most of the way. We'll keep you posted onthe next appointmnet. We appreciate the thoughts and prayers! They are working!
Today i brought John in for his 5 year check up. He received several shots and was pretty cranked as you can imagine. John in now 31/2 feet tall and a healthy weight. The only real spot of concern is Johns hearing. We tried several test, but they were kind of inconclusive. I am scheduling a more detailed exam with a hearing specialist. We also have an upcoming eye appointment with Dr. Seefeld. The good news is that our boy now has all his vaccinations and is ready for Kindergarden.
Today we saw Dr. Seefeld fro an eye appointment. It turns out that JP has a slight lazy eye on his right side. They believe that this is not caused by his Sturge Weber. While I know that the news could be much worse, Im just curious as to when are we going to catch a break. Jp now has to wear glasses all the time. Again, no big deal, but for a kid that has so many other forces working against him, it just stinks. At least I got him a cool pair. They are blue to bring out his blue eyes. JP's eye pressure looks good and no sign of glaucoma. We pick up his new specs in a week.
I took Jp for a hearing appointment to Dr. Petcu. We were reffered by his primary when JP had his five year check up. Apparently he failed the hearing test, so we were set for a bigger veal. A test revealed that his hearing in the left ear is not working properly. They used a tool that sends out a noise, and apparently your ear is supposed to make a noise back. JP's does not. We wil have to go for even further teasting. At this point I guess we can't get too worked up. We will see where this takes us. We aslo picked up JP's glasses today. As we walked into the shop he spotted a pair of cool sunglasses and tried them on. Well you know what happens next. Yeah, I told them to put prescription lenses in them. Hey, with all the crap you can buy kids, at least its something that he needs. His new glasses are cute, it just kills me that he has to wear them. He is adjusting well, but only time will tell. We are looking forward to Tuesday when we have an MRI in Boston. We will keep you posted!
I took JP to Boston Childrens for an MRI at 6am. We had to leave the house at 4:30 not very fun. Jp did pretty good. The nurse we had was fantastic and got JP's IV in one shot. We had a few tears, but he was pretty brave. The truth is that I was more upset than him. Onc ehe started to nod off to sleep, I had a breakdown. With all that is goin on with his Mom, all I could do is picture the two of them laying htere. I quickly got my act together, and sat through the very loud MRI. He came out of the anesthesia fairly quickly. he was a little whiney, but not bad. He slept most of the ride home and was finally back up to full speed by early afternoon. We'll be waiting for the results with baited breathe!
JP had a hearing appointment with Dr. Christina Lee at the Weldon center. Dr. Lee was very nice and immediately struck up a rapore with JP. The test lasted about a half hour and included multiple devices to measure the workings of his inner ears. She also put us in a sound proof romm with headphones on John. John had to say hwat she was whispering into the headphones. The bottom line..........he has normal hearing. Thank God. I don't know why I was just very worried about this test. Dr. Lee told me that he may have failed his earlier tests due to a cols or a little fluid in his ear. Many thanks to Dr. Lee for being so kind to JP and I.
After keeping JP up all night, we zoomed to Boston Childrens for an EEG. They put thirty leads attached to his head. He was not so thrilled with that. They wanted to monitor him while he slept. You already know what happend. Of course, he wouldn't fall asleep, despite being exhausted. They still ran the test. The results show thet JP's left side of the brain is running slower that the right. This is not unexpected especially with the atrophy of his left occipital lobe, but it still is painful to hear. We also had a folloow up with Dr. Takeoka. Dr. Takeoka upped JPs night time Trileptal dose to 12mg, based on JP going up in weight. I asked if we should still have the diastat for school. Diastat is a medication given rectally if JP has a seizure. I was hoping that since JP has not had a seizure in a while, we could stop using it, no such luck. Just what a kid needs. Its bad enough if you have a seizure, but then to have a teacher drop your pants and ram a medication up your rear end, it does wonders for your social life. Geez, can this kid catch a break. Hopefully we will keep our seizure free streak going and that med can stay in the package forever. School starts in a week and a half, check back for photos from the first day of school!
Appointmant with Dr. Seefeld. While the glasses seem to be helping JP's lazy eye, the doc wants to amp it up. JP now has to where and eye patch for two hours a day. Nobody loves pirates more than he does, but I can imagine after the first couple of days this is going to get real old, real wuick. It's for the best, so we will do what we do best. Keep on trucking!
After what can only be described as a traumatic experience, JP is alright. After losing his mother. JP continues to persevere. Over the last few months JP has worn his eye patch with some success. Dr. Seefeld tells me that he could legally drive with his eyes the way they are. We are continuing with the eye patch for six more weeks at four hours a day. The doc says we might as well try one last big push to see if we can make it just a little a stronger. I have weened JP off of his seizure meds trileptal. John has not had a seizure in several years(knock on wood) and so we wanted to give it a try. Like anything else its a risk vs. reward scenario. We are taking the chance that he may have a seizure, but the long term effects of the powerful medications may not be able to be measured for years. JP has hair on his arm longer than mine, so unless the drug is absolutely necessary, than we need to take a shot. He has already perked up since being off it. I'm not sure if I can keep up with his new energy level, but it will be good for both of us to jump around more. As far as losing Kellie, he is really ok. We talk about Mom often and how she is in heaven watching over us. We will both get through this together.
Sorry its been so long, but this single parent lifestyle doesn't leave much time for much. While this area of the web site is dedicated to medical updates, I felt it appropriate to update you as to where JP is mentally as well. The glasses are all but done. We have a final appointment with Dr. Seefeld coming up, but at last check JP could drive without them. Not that he would at the age of 5, but that was the Dr.'s goal, and we have reached that. We do have an upcoming appointment in Boston with one of JP's neurologists. You may remember that we also had a neurologist in Spfld. Well we have stopped going to him. The reason Kellie and I kept him was to adjust meds should the need arise. On the last several appointments the Dr. (who clearly has no idea wjat Sturge-Weber is) would ask ridiculous questions like, "can he jump in place" or "can he run". I would laugh, but the sad fact is that this guy has no clue about JP. He obviously isnt reading reports from Boston, and since I took JP off of Trileptal, why waste our time? The docs at Boston Childrens are on top of it so one less is not an issue. I recently had a meeting at Johns school for his IEP (individual educational plan). John receives speech and occupational therapy to assist him. I have also hire a tutor to work with him 1 to 2 times a week. He doesn't really need one, but I am staying ahead of the curve, rather than play catch up down the road. The staff at Johns school told me that in the last two months John has made leaps and bounds. Why? You know the answer to that already. Obviously are life has been in turmoil over here. While Kellie was ill, I was gone very frequently to attend to her and had various family members and friends step in to care for JP(of which I am forever grateful). After Kellie died, it was hectic an emotional, but we finally settled back in to the task of daily living. JP needs structure and planning. Once we got back to our routines, he snapped right back in to place. I can't stress enough the importance of keeping my emotions intact for him. I cry and breakdown, but I always talk to him about it, he is perceptive and can tell if I try and make stuff up. We talk about Mom, all the time, but his emotional attachment to her is less and less. While its hard to even put that into words, its the way it has to be. Kellie is his mom, there is no changing that, and we will never forget her, but we are moving in ine direction, forward. Sometimes I feel like I'm repeating myself over and over, but I feel like I have to. Despite everything I feel like sometimes I need to walk on eggshells for everybody. The good news, for me anyway, is that those days are over. JP and I spent a week at Disney and had the time of our lives. While I enjoyed the peace and quiet of being away from it all I did some serious thinking. I can no longer explain myself or worry about what everyone thinks. It has to be JP first, me second, and the rest of the world will have to figure out their places. I'm spending way too much time worrying how others perceive my actions with JP, with my own life, with Kellies memory. The staff at his school gave me the best vote of confidence telling me that JP is a very well adjusted kid. They tell me that he talks about his Mom, but is ok with it, and that I'm doing a great job. Thanks Ladies, not that I needed the pat on the back, but hearing it from the people that spend the most time with him, makes me feel good. I will update toward the end of the month on our Boston appointment until then we just keep on plugging!
After what seems like forever we had an appointment today with Dr. Takeoka @ Boston Children's. While the drive up there brought back some tough memories of going back and forth to be with Kellie a loud, "Daddy the DVD stopped", from the back seat brought me right back to reality. We mad our appointment without a second to spare after negotiating some heavy traffic. Dr. Takeoka took us right in and went to check the chart. I said "hold on", and gave him a summary of the last six months. I weened JP off of Trileptal on my own over two months. While I would have loved to consult a doc, at the time I did'nt have much faith in the medical system. JP was put on Trileptal for two seizures that may or may not have occurred. The seizures were focal seizures and whether or not he was "spacing out", was a matter of debate for Kellie and I. Anyway, the long and short of it is that I alone made the decision to ween him off, took a chance, and it has paid off. The Trileptal had made him sluggish and tired and now he is border line ADD, bouncing off the walls with energy. Once again I defer to those who work with him everyday who state, "John has been a different kid in the last few months". Johns progress has made leaps and bounds, which speaks for itself. While I had prepped for battle with Takeoka thinking he would give me crap, he was completely fine with it. In fact he was happy saying the less meds the better. Takeoka wants to see him only once a year and reduce our travel down there to every six months and alternated between him and Dr. Sahin, our other neurologist. I also informed Dr. Takeoka that we are no longer seeing Dr. Jackson out our way. Its pointless really. The last few times were less than impressive and there is no need to waste his time or ours. I would rather drive a little and see the best. Dr. Takeoka was happy with Johns progress and told me to keep doing what we are doing. I was never so close to hugging a small Asian man before! It was just nice to go in with the expectation that this Neuro guy was going to push more meds on me, and we completely the opposite. We are keeping the Diastat which is a med administered rectally if a seizure occurs, since its only used if shit hits the proverbial fan, then its fine with me. We will keep our fingers crossed and schedule our MRI for sometime this summer. It is protocol for Sturge-Weber kids to get one yearly. We can only hope that the growth on JP's left occipital lobe has stayed put. So far so good, we will keep you posted!
It's been a while, sorry about that. The old saying rings true, no news, is good news, I suppose. Today we went for Johns annal MRI. After circumventing some heavy traffic, we made it in the nick of time. Our boy made s proud. When 3 nurses came into the room they grabbed a blanket. I asked what they were going to do. They said that they needed to give him an IV, and they wanted to hold him down. I explained that John is a very matter of fact kid. If you explain what you are doing, then he will not need to be held down. John held his arm out, as they inserted the needle. We both cried, but he never flinched. I explained that Mommy used to put IV's in people and that she would be very proud of him. Yes, a very tough moment, but together we are getting through this. While I am incredibly proud, I am also sad that he has become used to medical procedures. They slowly knocked him out and he fell asleep in my arms. The MRI went off without a hitch, other than a little wooziness he was fine. We will not have the results until next month when we see Dr. Sahin.
10-20-11 Dr. Sahin Boston Childrens
It's been a while since we have seen Dr. Sahin. We actually got off the elevator on the wrong floor and bumped right into to Dr. Takeoka. It was kind of funny because John recognized him right away. We made our way up to Sahins office to review whats been going on and review the recent MRI. Dr. Sahin informed us that they are no real changes in the MRI. This is great news. The growth on Johns brain is staying put and has not increased in size. Thats the good news. The bad news is that Dr. Sahin informed that ADHD is 50 percent more likely in Sturge-Weber kids. While John has not been diagnosed it seems we are heading in that direction. John is finding first grade to be challenging. It's a long day for an extremely active kid to sit still and concentrate. The staff at the school have been trying some tricks to keep him focused. We are awaiting some paperwork and tests do determine whether or not he has it. I will not medicate him, unless absolutely necessary. I realize everyone is different and deals with it the way they do, that's just my philosophy. Unless it's absolutely a need for his health. The diagnosis may trigger an increase in services at the school and more help for him, which would be a plus. We will see how this plays out.
Dr. Seefeld, eye appointment
Well after trying the patches and glasses to have Johns weak eye develop a little more, we have failed. John now has to wear glasses full time. His left eye is pretty bad and will be corrected with the new glasses. The doc advised me that after the age of six there is no significant gains made by continuing to use the patch. It's tough. I used to wear glasses and hated it. When we look at the grand scheme of things, it could be a lot worse. That constatnt theme of how much shit does one kid have to deal with just constantly resonates with me. The good news is that John eye pressures look good, and no glaucoma, which he is at high risk for. At least he got to pick out some new specs and has a few friends with glasses as well, so we march on!