We traveled to Mayo Clinic in Rochester, MN (Feb 11-14th) last week.
We had many options of places to travel after finding out our doctors didn’t have anyone who specializes in Opsoclonus Myoclonus Syndrome (OMS). At first we tried to go to Illinois to see Dr. Pranzatelli, the world leading expert for OMS, but he cancelled our appointment the very night we were leaving for a medical family emergency. That left us feeling hopeless, scared and just extremely disappointed. We worked so hard to get that appointment, make the travel arrangements, and we were sitting at home watching our son go through some of the scariest things weve ever seen with no where to turn. We were turned away by our local hospital so we couldn’t just take him to the E.R and we couldn’t just call the doctor to ask what to do, in fact many therapists dropped service with us because they didn’t know what to do with him. So everyone who was helping me started leaving the second they told us he has OMS. When I first came home from that hospital (where they told us they were confident he has OMS) I sat on the living room floor, holding him and crying because I thought we lost HIM, i thought we lost his neurological state and his happiness and his personality…. I felt like he was not the kid we used to know. I felt a lot like many neuro moms feel if they knew how their kid was without a neurological issue then one day they were just damaged and then the realization sets in that you lost who they are. That is what I felt and it was HARD and that lingered for weeks! When I looked at him sleeping with his eye lids half opening and fluttering, and the irritability…. I didnt have a clue what to do and I tried so dang hard at everything! Well a few weeks later he just improved all on his own without any treatment (a few weeks after Dr. P cancelled us) I was sitting in the living room actually re-evaluating him to receive physical, occupational and speech therapy (I threw up a fuss after they cancelled us and got him a new evaluation) out of nowhere he just was looking RIGHT AT ME. He was listening to me talk to the evaluator and he was just watching me. That sounds like a very small thing but this was HUGE! He hadn’t had a steady eye movement in weeks, he constantly looked like exorcist took over his body and now he was looking at me! (Here is a video: http://www.youtube.com/watch?v=ZT1fgmVGQUM ) That day forward he just never went back to worst ! He kept improving little by little… soon he was watching tv again and looking at light… then he started smiling again and gaining some of his happy personality back… and before you know it i felt CONFIDENT that he did not have OMS.
So how did we end up at Mayo Clinic? When Dr. P cancelled on us I contacted everyone that was suggested to us. I contacted a Dr. Wendy Mitchell in LA while looking up different charities that could possibly help with flights. Then she said she would see Zane if I could get a referral. I asked the special needs clinic and our oncologist for a referral… they didnt recognize her name and they suggested Mayo Clinic. Then I went to a follow up Neuro appointment and told them I would like a referral to Mayo Clinic… they looked at Zane and where i saw huge improvement and even said “I don’t know how much your going to be able to see… his eyes are pretty steady now” they saw OMS STILL. They sent the referral for us to see a second opinion neurologist at Mayo Clinic. They thought OMS however like I said previously no one in our area was confident enough to treat it because they’d only seen a very small number of OMS patients go through Children’s Hospital of Wisconsin. We started the process and it took 2 and a half MONthS to get our appointment. That is a long time when you are told your child’s immune system is eating away at his own brain thinking it’s a cancerous tumor! What choice did we have though? So we waited and waited and Zane got better constantly with no treatment at all.
FINALLY Feb 11th arrived (If you want to see the cute travel baskets I made for the big kids check my video out here:http://www.youtube.com/watch?v=WdJx4FR9o1Q&list=UUOE3iv-ikN1iWKN0K-P9qaw&index=4 )
We packed everything in the minivan (good thing we have a minivan now right?) and FINALLY headed to Minnesota. I say FINALLY because everyone just had this sense of excitement and relief that the day to get Zane seen by more doctors was here! I posted a few videos from the car and when we got to our hotel:
Minnesota border: http://www.youtube.com/watch?v=28ZPUZ3q3j8&list=UUOE3iv-ikN1iWKN0K-P9qaw
Zane stretching his legs: http://www.youtube.com/watch?v=SQgpJh0sCoQ&list=UUOE3iv-ikN1iWKN0K-P9qaw
Our first look at hotel room: http://www.youtube.com/watch?v=3Rs52OA07oE&list=UUOE3iv-ikN1iWKN0K-P9qaw
6am on schedule (wake up at 5am) this is us leaving the house:
What did we have stuffed in that van? had a big bag of medical records and i mean BIG (Zane has a lot of paperwork!), apnea monitor, suction machine, diaper bag, feeding pump with extra feeding supplies, a bag of medical supplies (food bags, syringes, toothettes, sanitizer, cleaning supplies for his gtube), a cooler with fresh mixed formula, medicines that have to stay cold, CLOTHES bags for all four kids and me and David, a playpen and stroller (how else will i navigate the mayo clinic with a BIG bag of papers and equipment without the stroller and where would zane sleep withou a playpen?) We also brought snacks for the car, the travel baskets for the big kids to keep them busy, DVDs for the car tvs, David brough the xbox to keep the kids entertained in the hotel….. this van was packed to the max! (I have no idea how were doing it in Florida this summer! hahaa)
We got up at 5am like I said, on the road at 6am like I said also… drove for 5 hours… stopped at Ronald McDonald who we weren’t surprised was full but they were able to fax a discount over to our hotel (Extended Stay America) then we navigated to the hotel, unpacked the car in lighting speed, filled the drawers with everyone’s clothes and literally got out of there fast (kids didn’t like being rushed but that was what HAD to be done) we ate a quick lunch at McDonald’s and found the Mayo Clinic (didn’t know our way around yet so we wanted to be early to figure it out) The Parking Garage there is always packed and you see every liscense plate imagineable, everyone comes there from around the country. You can see from one trip through the parking garage we X’d off this many plates: (this was only one and we saw many of the missing ones on different trips in that garage)
They have a subway system which is not a rail train system it’s just an underground walkway. There are some hotels directly connected to the clinic through hallways underground, there is about 2 hours worth of underground hallways full of shops and eating places. They have several buildings and on your scheduled it will tell you which building then which floor you need to go to. They give you a booklet almost of your appointments locations and times at the end of each doctor visit and boy do they like to change it up on you! I think all of our clinics were in the Mayo building but all the buildings were connected underground and it was BUSY like you were walking around the mall of america or something! We went to our first appointment which was pediatric neuro. It was very flashy at first… fancy lighted pillars that looked like trees, lots of artwork everywhere and they had a magician in the waiting room who was GREAT! He had my fooled! I kept going “WOW how did you do that!” There was someone who traveled from Saudi Arabia next to us just to go to this clinic! They had a free books cart and the magician made the kids rainbow paper birds. They liked that a lot and it helped after sitting in that car for so long! BUT then we got called in to the first appointment! We tried so hard to go to the clinics as a whole family but the kids could not handle being in these tiny pod like patient rooms. David ended up watching the kids in waiting rooms our whole trip while I raced from appointment to appointment with Zane. Ped. Neuro came in and my firs impression was that she looked very nice and kind, professional lady…. THEN I tried to talk. lol. She would not let me tell his story! Everytime I mentioned costello she switched subject, cut me off, just anything. I really wanted to ask her about Zane’s seizure like activity and find out if he was having seizures (he had a bad fever fit 104.9 two weeks before we got there) and she was straight focused on OMS only. Almost like she judged him before she even looked at him. within 20 minutes she sat me down to say “im sorry he has OMS”. I left and i felt angry and I almost wanted to just go home. I was mad because she did not listen to who he is! She wouldnt let me tell her why I thought this or that or tell her my debate on how he improved so much or how this trait or that trait matched this diagnosis or that diagnosis of his (and he has many) so i felt she got a terrible evaluation. I felt defeated and like we came to Minesota for nothing. I tried not to give up hope so we trucked along. However that same night Zane was crying the whole entire night, and I got up and he felt HOT. I went OH NO! And checked his fever which YES He developed a fever! He caught a cold and we were miles away from home. I spent that night putting cold clothes on his head, turned the heat in our hotel room completely off, conteplated running the air conditioner in the middle of winter 🙂 , I wanted to do everything to prevent him from “seizing” or having to go to the emergency room away from our team/people and totally out of my element. I gave him IB Profen and got the fever to stay steady at 100 degerees F. The next morning I was off to Genetics and oncology. I was supposed to see a social worker also but the genetics appointment went over time and I didn’t make it to that one.
“You are going to be famous whether you like it or not”- Dr. Kirmani
Oh he was hilarious! He was such a fun Genetcist! He was very excited to see a medical marvel like Zane. He only saw one other Costello before so he seemed happy to see him. Zane is 1 out of about 300 Costellos in the whole world and according to this genetcist he is probably #6 (according to an article Dr. Gripp wrote studying Costello cancer) in the world who also got neuroblastoma! (Neuroblastoma is the more rare cancer for a Costello with Rhabdomyosarcoma being much more common). He took a video which I believe they can use to teach other genetcists what a Costello looks like so they can continue to spot more Costellos and diagnose them in the future. He also said he would send the video to Dr. Gripp who is famous for studying Costello Syndrome to see if she would do a virtual consult with us. (We are hoping to meet her in Florida this summer) He said he didn’t know a lot about Costello eye movements but he would contest to the low muscle tone is definately a Costello trait so they can’t really say that is his myoclonus (muscle weakness, part of OMS). He pulled all the other genetcists in the room to see Zane and they all also loved him and were happy to see him. One of the genetcists a few days later even recognized us in the hallway “Zane?” hahaaa… he sure leaves an impression! One thing Zane definately does is…. anyone who has every met him or heard his story never forgets him. He leaves and impression everywhere he goes. This kid is going to do big things by just being himself!
Then I went to Oncology, she was also VERY nice, loved HER! She listened to everything i had to say, what I hoped to get or learn from her… very direct. She has seen many OMS patients before and she said she was not convinced Zane has OMS. We also talked about treatments and Zane’s conditions and what I got from her was a… *drum roll* ORDER TO VACCINATE! We agreed that the risk of him getting sick was much greater than the risk to vaccinate. The theory is that if someone has OMS that vaccinations can send their immune system into overdrive and their immune system is busy attacking the brain so it causes a lot of neurological effects however the vaccine still works. if he gets chicken pox vaccine even if he gets nasty neurological effects IF he has OMS he will still be protected from chicken pox which otherwise could kill him if he got. So we weighed the risks and the benefits and I got one of the big things i went there for…. VACCINATION ORdER! YES YES YES! (He will be getting those on Monday in 2 more days! He has to catch up but i just want to dance and celebrate this victory) Try living in a bubble for just a little while and you’ll understand! Every grocery cart gets wiped down with a sanitizer clothe, every child that coughs or even looks at Zane sends chills down my spine in terror that he will get a flu that will kill him…. it is a truely fearful way to live. I barely see anyone anymore because Zane’s respiratory system is already working hard and the fact his immune system could be attacking himself and having no immune system at all… Ive been keeping everyone far away! So God bless the oncologist! She was wonderful!
We ate at Bakers Square that evening, Caitlyn came to all those appointments with me that day alone and ate with me in the hospital cafeteria for lunch. We colored a lot in front of these gorgeous big windows on the top floor: (David and the boys were getting the car fixed ,… the steering wheel was shaking and me and Caitlyn took a shuttle bus to the hospital that morning)
We went back to the Hotel, the kids played video games with David, we all rested and that was Day 2 DOWN, 2 to GO!
Day 3 ! We only had to see the eye doctor (That peditric neuro added TONS of stuff to my schedule but I didn’t want to over stress Zane when we were already seeing some of the top doctors in our own hospital for some things…. so I cancelled like three cardiologist visits, the social worker and a neuro immunologist (she was just dead set on treating Zane with some seriously harmful chemicals. I cancelled that one mostly because they switched that one on our schedule three times and then no one explained to me who he even was….. I was frustrated and cancelled him. Turned out to be a great decision tho so yay ! go figure!)
We went to the eye doc…. He numbed and dilated Zane’s eyes (Jacob went with me in to this one… they were taking turns) Also moved things around to see if he would follow things and take note of the style of movement his eyes were doing. When he looked in his eyes though he saw something wrong with both of Zane’s Optical nerves. He asked us if we could come back the next day because there was someone who did a great job with this subject and so we went home in total suspense wondering if Zane was blind or what did they mean? What did he see? That day we had the entire rest of the day to ourselves. Being we were all sick (Zane finally got rid of that fever after about two days… I actually called his special needs nurse and said WHAT DO I DO! hahaha and tracked down an infant pulse ox to get his heart rate and oxygen level… we deteremined he was doing OKAY but if he got worse he’d go to the E.R. but he got better and his fever went away- YES!) we wanted to rest but we also wanted to do something fun while we were there for the kids. We asked the hotel desk attendant what is fun to do? And off we went to a place called Wildflower Creations! There we all picked out a peice of blank pottery and we got to paint it! Andy painted a tank, Jacob an owl, Caitlyn a kitten and I picked off the Valentine’s shelf for 50% off found a nice heart shaped vase ! Per the greatest idea of the lady who owned the store…. I put the kids hand prints around the vase and painted stems on them to make them look like flowers! SOOOO excited to get that! We had to leave everything there to go in the kiln and she is shipping to us for free. She also said because we were Ronald McDonald House we got free sessions… so they waived our fees there! We were considered attached to RMH because we were paying a very low rate at the hotel because they had no room in RMH and because they dont allow more than 5 people per family (EVEN if ones a baby) at RMH, so it’s like we were staying at their outside location sorta in a sense right?
We went “home” to the hotel and they even gave us a coupon for a free pizza at the restaurant RIGHT by our hotel (from the pottery place) so thats what we had for dinner! Then we packed as much as we could that night, more video games and went to bed!
Zane slept GREAT for two nights in a row btw!
Woke up bright and early and I just started packing stuff and getting ready…. the hotel had a nice breakfast bar every morning literally only a few feet from our door so we’d sneak out grab something and a coffee and lounge around taking our time in the morning. We woke up EARLY everyday though but we were moving so well that we didnt feel RUSHED. or atleast i didn’t! 🙂 Zane was the last one up on the last day. I just kept letting him sleep and when we just had nothing else left to pack in the car I had to wake him up so we could get the playpen in the car! 🙂
Off we went to our last day at MAYO CLINIC!
We finished up a summary in Genetics first… Jacob went in with me and we were in and out within 15minutes (before the rest of the family could even get up the elevator to meet us there! haha)
Then we finished up and summarized in pediatric neuro… as I suspected still pushing the OMS, still not listening and almost even insulting me! She said “i think you are only hearing what you want to hear” like Im crazy because I think he doesnt have OMS if he has something physical wrong with his eyes and no proof he has myoclonus… well what is there left that is convincing enough to put tons of toxins in my sons body? (read my Opsoclonus Myoclonus Section to read about those treatments but I was worried a daily steroid was too much for his enlarged heart to handle, chemo increasing his risk for cancer too high and potentially giving him something way more deadly, and blood infections that can come from having a central line, the nasty head aches and irritability IVIG causes) So I kindly told her “Thank you for you opinion, I will take your suggestions back home to our doctors and we can deliberate about what you wrote in the report when I get back with some of the people who really know Zane well since he was born” and reminded her that i know him better than anyone and altho “with all do respect” I don’t see enough evidence to convince me he has OMS. basically! I was so happy to get out of there!
So the family went to the gift shop! The boys got stuffed owls and caitlyn and zane got stuffed dogs that are after a therapy dog named Dr. Jack that is in the hospital! We all got mayo clinic pens and I bought myself a bracelet that says “What Cancer Cannot Do” (See my blog post on that)
After that we went to the Mayo Clinic Education Center! There they had many many models of the human body and it’s organs and structure. For me i was like OOOH I just love anatomy from my surgical tech days! I sat and explained so much to the kids, probably too much and was probably too confusing to them! hahah… David got into it and showed them where Zane’s tumor was and I shower them how Zane’s heart has thickened walls and I especially like the model of the trachea and larynx cause that is just hard to describe if you cant see it! I picked up tons of free Dvds and information materials to learn yet more about some of Zane’s issues! It was a good little place in the hospital ! Would love to see something like that in Milwaukee actually… I think it would be so good for the kids at Children’s Hospital to see!
Lastly I went to the Eye Doctor… this guy was AMAZING! He is one of the very only in the country, maybe even the world who does such an amazing job at pediatric NEURO EYE. He had about 4 other ophthmalogists look at Zanes specific eye movements, he made a video and sent that to a world expert Dr. Z (not sure who that is), and number & dilated his eyes again, took a look himself….. He concluded that Zane has Optical Nerve Hypoplasia
That means …. his eyes didnt fully develop in utero and this is actually very normal amongst Costellos so it matches. He said it’s not the worst ONH he’s ever seen and he thinks Zane can see more than we think he can. He does however have a really hefty prescription now (which i tell you after driving all around Milwaukee I ended up ordering these things online, IMPOSSIBLE at the regular stores)
This is AMAZING news. We thought he was blind and could only see light… turns out he may be able to see a little more than that and everyone believes this will improve over time. The first eye doctor told us it was permanent (thinking permanently blind I worried a bit all night but KNEW we could adapt to whatever Zane needs) ANd LETS SEE…. Steroids, IVIG and CHEMO VERSUS Prescription Glasses…. could not be happier! Most people wouldn’t cheer when they hear their chld has serious optic nerve damage but i was thrilled! It meant he does not have OMS. This ped. neuro eye even called the ped. neurologist that I didn’t like and got her opinion, watched my youtube videos, and took EVERYTHING into consideration before he made his final decision. He said it’s unlikely Zane has OMS and he thinks his eye sight will improve in around a month with glasses! Now do I follow up with this same doctor in 3-4 months all the way in Minnesota or do I…. risk getting his prescription or adjustments screwed up by going to someone less qualified ? I wonder if next time maybe just me and Zane could take a train or bus and come back right away. i don’t know??? what do you all think??
And so we drove home 5 hours more, this time in the pitch black of night. Got home and our dog was the happiest camper to see us again!
To Follow us much more often and to see more mayo clinic photos… here is Zane’s facebook page: