PTR for Noah's wish trip -MAW/GKTW- April 7th - 13th, 2010

[noahsketomom]

Well, it's official --- we have reservations!

April 7th - April 13th, 2010 and we can't wait!!!

So in order to give me something to do with my nervous energy, I'm going to try to start a Pre-Trip Report....here goes!

Cast of Characters:

Me (Beth) and my DH (Brian) -- married for 12 1/2 years, college sweethearts, Diehard Patriot and Red Sox fans! We both thank God for each other and the rest of the characters every day!

John (9) - our leader....that is, the way our day goes is usually based on how John's day is going! Loves Star Wars and legos and might be considered "obsessed". Also enjoys baseball and video games.

Abby (7) - our creative one. Loves art, drawing, designing fashions. Is also quite good in gymnastics.

Noah (4) - our daredevil and the reason we are going on this trip (more on that later) Loves baseball, dogs (dalmatians are his favorite), and joins his big brother with a love of Star Wars and legos.

Ella (3) - our baby and resident drama queen. She loves baby dolls, princesses, singing, and loves to EAT!

As crazy as life is with four little guys, we are trying to stay sane and one step ahead of them. Though there are the inevitable battles, our kids generally love being around each other.

Next up......Noah's story....or how this trip came to be in the first place!

 

[noahsketomom]

The beginning of it all ----
Although it seems like it was forever ago, our lives changed forever on May 22, 2009 when Noah had his first seizure. Prior to this, his development was normal. He went on to have 3 more seizures in the next 3 days, with normal results on LP, CT, MRI and EEG. He was put on a medication and sent home. Two weeks later, we started noticing that he would have periods of “space outs”, occurring maybe one or two times a day. At our followup neurology appointment, he “spaced out” right in front of the neuro, confirming what we all thought -- these “space outs” were absence seizures and we were dealing with a more complex seizure disorder than we originally thought.

The spiral downward ----
Over the next few week, we changed medicines, added medicines and increased dosages. He was now having absence seizures every 2-3 minutes, and head drops/myoclonic seizures totaling about 20-30 per day. He was falling a lot and had taken to hanging out on the couch. By the first week in July, he was in Non-convulsive status epileticus (NCSE), seizing 100s of times a day, spending an average of 6 minutes out of every 15 in seizure activity. We temporarily broke it with high dose valium, but two days later he was back in NCSE. Noah was slipping before our eyes – not interested in playing with his precious legos, back in pull-ups, barely speaking, barely moving, and had gone from a solid 41 pounds to a scrawny 34 pounds in less than a month. He was diagnosed with Doose Syndrome, or myclonic astatic epilepsy, a med-resistant, catastrophic form. Prognosis is uncertain, but seizure control is key. Our doctor recommended either one more med, Felbamate, if we wanted to try one more drug, or the ketogenic diet. My husband had already read a book on the diet and was sold. I was leaning towards trying that last med, since I was fearful of the work involved with the diet, but neither of us could bring us to sign the release form for the Felbamate. (It has some devastating, but extremely rare complications) Since we were already in the hospital, we decided to try the diet.

The bottom ---
With Noah in such a compromised position, we also made the incredibly difficult decision to feed him via an ng tube. He was seizing so much and on so many different mediations that he wasn’t eating a thing. We also started hearing phrases like “drug-induced coma”, “concerned about brain function”, and “severe form of epilepsy.” It was at this same time that we had to cancel our original plans for Disney, scheduled in September. Not knowing what the future held for Noah, let alone the disappointment of something we had all been looking forward to, was heart-breaking. The whole summer long I kept thinking, gotta get him better so we can celebrate at Disney. It was not to be…… This was a dark day. But there were glimpses of light ahead!

The miracle diet ---
Remarkably, on day 4 of the ng tube keto feed, he became seizure free. He slowly regained his alertness and his EEG improved remarkably. We went home in August and slowly began transitioning to an oral diet. When we started the diet, Noah was on a total of 5 anti-seizure meds. He is now down to 2 and has been seizure free for 5 ½ months, except for a breakthrough t/c seizure 4 months ago when weaning one of his meds. The most remarkable thing is that the diet has given us our son back – he is thriving, alert, playing again with all his siblings, and just being his “trouble-making” self!

Next up --- what our current days look like….

 

[noahsketomom]

Ketogenic diet FAQ

So what is the ketogenic diet anyhow?
It is a super high fat, low protein, low carb diet that, along with a specific calorie allotment, puts the child into a constant state of ketosis.

What does it have to do with seizures?
Even experts disagree as to how it actually works to combat seizures, but it does – either by increasing ketones or lowering glucose in the bloodstream. For kids in particular with intractable seizures, it can be very successful--- over 50% have a large reduction in seizures and about 1/3 become seizure free.

What does that mean for our daily life?
I measure everything that goes into Noah’s mouth. Every recipe is calculated with the help of a computer program. All kids have different ratios, but for every 1 gram of protein and carbohydrate, Noah must have 3 grams of fat. That leads to a lot of heavy creams, butters and oils. Every ingredient of every meal has to be measured on a gram scale, and every drop has to be eaten – we travel with scrappers! He cannot have anything that I have not prepared, other than water. He's also on 5 supplements, taken 1-3 times a day, in addition to his seizure meds. In a nutshell, it is a very time-consuming, effort-intensive, treatment….that saved our son’s life. I curse it and praise God for it every day!

Will he be on it forever?
Hopefully not. Most kids are on it for 2 or 3 years. But some are on it longer. We just celebrated our six-month mark!

For more information?
www.charliefoundation.org is a great resource.
Also, “First Do No Harm” is a movie with Meryl Streep, directed by Jim Abrahams, father of a keto kid. It’s based on a true story of a keto kid whose mom had to fight to get her son on the diet.

Hopefully this wasn’t too much information…..but I do feel like more people should be aware of it. We were lucky to have our doctor suggest it. Others aren’t so lucky…believe me!!

Now back to our regularly scheduled programming……our WISH TRIP!!!!!:

 

[maroo]

Awesome introduction!

I have been schooled on the Keto diet...I had no idea it was high fat!


I will put a link to this on the Wish Trippers thread, too, so that everyone can come over and say hello!


PS: Just four years before your May 22 on May 22, 2005 - a very dear friend of mine was in a boating accident and lost her leg. So I cringe at that date, too.

 

[Thumper321]

Hi, Beth! Glad that you got your PTR started! Your family is beautiful!

I have a question. . . how does the ketogenic diet make a difference in epileptic kids. I am very unfamiliar with this, and just don't know much about it. Aidan has endocrinology issues, and we put a lot of effort into keeping Aidan from being ketotic, so I guess I'm wondering how being in a constant state of ketosis benefits the child with epilepsy?

I am not questioning your methods or reasons for doing it, just not familiar with it and wondering how exactly it works for Noah and kids like him.

Congrats on the wish trip!

 

[noahsketomom]

Awesome introduction!


PS: Just four years before your May 22 on May 22, 2005 - a very dear friend of mine was in a boating accident and lost her leg. So I cringe at that date, too.

Hi Maroo,
Thanks so much!!
I'm so sorry to hear about your friend's accident. Yes, that date brings cringes here too. This might be too much to share, but on the same date in 1999, 10 years before Noah's 1st seizure, my father was in a horrific car accident. He survived, barely, recovered, then died 4 months later due to a complication. I spent the summer of 1999 in various hospitals with my dad....then to make matters worse, Noah's hospital room overlooked the area of the hospital where my dad died. I still haven't truly processed it all, but somehow, strangely enough, Noah's hospitalization brought some healing from my father's ordeal. That was another reason the ng tube was so hard on me....my father had one for most of his hospitalizations.

But life goes on and with it we have great hope for the future! I should mention that most likely my mom and sister will be coming down, staying at a hotel nearby to GKTW......ANY SUGGESTIONS ANYBODY???? That was just another reason canceling the original trip was so hard...it would've been close to the 10 year anniversary of my dad's death. My mom and sister had been planning on joining us to help with the kid to adult ratio! If you can't beat them, join them! So I'm really glad they are planning on joining us for this even more SPECIAL TRIP!!

Blessings to all of you and your awesome wish kids!!!

 

[noahsketomom]

I have a question. . . how does the ketogenic diet make a difference in epileptic kids. I am very unfamiliar with this, and just don't know much about it. Aidan has endocrinology issues, and we put a lot of effort into keeping Aidan from being ketotic, so I guess I'm wondering how being in a constant state of ketosis benefits the child with epilepsy?

Hi Miranda!
Funny thing is --- nobody really knows HOW it works...just that it does! Unfortunately epilepsy doesn't get that much research $$$ in general, and what money it does have usually comes from drug companies, which doesn't help with research on the diet.

That said, most folks think that when the brain runs on ketones (byproducts of fat metabolism) instead of glucose, it causes the brain to stop seizing, or raising the seizure threshold at least. Others think that just having a lower glycemic index, or glucose stores, help with it.

Ironically, it has been around since Biblical days....having people with seizures FAST...which naturally puts them into a "fat burning" mode...resulting in ketosis.

Hope this helps a little bit. I edited this, but with Aidan and his endocrinology issues: I know there are some contraindications and that Noah was screened before starting on the diet to make sure his body would break down the fats successfully. So maybe they want to make sure Aidan doesn't go ketotic because his body wouldn't be able to break down the fats? There's also a risk of becoming ACIDOTIC when you are ketotic, so it's a fine balance that we're always watching.....

If you are interested in learning more, feel free to PM me and I can give you TONS more info -- you can also check out the Ketogenic Diet by Freeman, the "keto bible" so to speak!!

Ok, off my keto soapbox!!! Funny, I would gloss over when people mentioned the diet originally, now I'm a diehard fan!!

 

[yinyanggirls]

Hurray for dates! You'll be leaving right before we get there (4/17). I have heard of the diet from a friend of ours whose dd's both have undiagnosed conditions that include epilepsy. The dd on the keto diet is also tube fed. My dd has seizure-like activity but has never been diagnosed, because her tests never show activity. She finally had one in front of one of her many specialists and the doc was kind of watching my reaction. Phoebe's "seizures" are absence seizures with myclonic jerking. I held her through it and when she came out I told the doc what all the tests have said and what the other docs have said and how having a diagnosis might not even help us. She currently seizes a few times a day, and knowing all the side effects of the meds I'm not sure it's worth it to medicate her. After I said that the doc agreed and said, let's wait and see. Just watch it and if you feel it's getting worse we'll do more tests. If she did receive a diagnosis she would be eliminated from her favorite thing, horseback riding. It might sound weird, but for her, I just don't think it's worth it.
Having said that, Phoebe and I attended the funeral of one of her classmates who died during a seizure, so I know this is not something you can take lightly when they have so many seizures a day. My friend with the two daughters is always thrilled when the seizures drop in number, and she has had great results with keto since they tried it. It sounds like you guys are awesome parents, putting in the effort required to make your son's life better. I'm glad this trip is going to help you all celebrate being seizure free and bring your mom and sister close to you again as well.

 

[Momofwishkid]

Wonderful start to your PTR! You have a beautiful family. I cant wait to follow along.

 

[jessica52877]

Coming along for the ride! My DS7 would get along great with your two! He loves legos and star wars and baseball and video games!

 

[dmbfan]

What a great pre trip report. Can I ask where about in RI are you located? We are right over the RI/MA line...but in MA. Do you go to Hasbro Children's for your son's care?

As for your mom and sister, my sister and my stepson came with us on Jake's trip and they paid there way, however they were able to stay with us at GKTW. I think you can fit up to 7 or 8 people in one villa. Plus they are allowed to eat there just like the rest of your family.

Can't wait to follow your pretrip...

 

[noahsketomom]

Hi every body! This is so much fun to talk with you about this as my hubby isn’t quite the planner that I am and is getting tired of hearing about my already growing lists! Don’t get me wrong – he’s super excited, though he probably won’t start his packing until late the night before we leave….seriously!!

Melissa – I’ll try to stay in touch to give you any last minute tips since our trips are so close. My daughter would be jealous of Phoebe…she’s begging me for riding lessons!
Jennifer – Can’t wait to hear how Gavin’s trip goes! We are also homeschooling here. We started last year due to a teacher conflict, and haven’t looked back. My kids love it!
Jessica – my boys would LOVE it….c’mon over!
Dmbfan – we’re in Portsmouth! Where are you? I loved your trip report…what a beautiful family! They told me only 7 would fit in the villa, so with my sis AND mom that makes 8. So they’ll be staying down the road at a hotel, but spending most of their time with us.

So the planning continues…..
I’m a crazy list maker, so I’ve already started. My main concern (shocker) is FOOD. Before Noah went on the diet, I never realized how much everything we do in life revolves around FOOD!! Fortunately he’s a pretty compliant kid with it, but I’m also trying to plan so he can have some of his favorites down there. I just want to prevent him from getting to sad (on HIS special trip) about what he can't have. I eventually have to call the TSA to find out what I can travel with, and then I’m going to find a way to get a few items down there that are critical. One is 40% fat cream – not available everywhere – but hopefully something I won’t have to bring with me.

Does anybody know where the closest grocery store is? Is the Walmart a grocery or just a store?

I think mostly we’ll play it by ear with eating at the parks, but I did want one planned meal to sit down at, preferably with characters. So I made one at Chef Mickey’s, but have yet to contact them about Noah. Hopefully they will either be able to help me or allow me to bring his food.

One question for post-trippers……how easy is it to go back and forth between GKTW and the parks? If kids get tired, is it worthwhile going back for a bit, then returning to that park or another one? Or is it more of a pain to do this?

Lastly, we are going the week after Easter….so I’ve already decided that their Easter baskets will be filled with “practical” items for Disney – sunglasses, stuff to do on the plane, etc.! (Kill 2 birds with one stone!) If there’s anything in particular you can think of that would be helpful, can you let me know? THANKS!!!!!

 

[pnutallergymom]

Yeah!!! Another trip report!! Can't wait to follow along!!! There sure are alot of us going in April!!! Woooo Hooooo!!!

 

[Momofwishkid]

Hi Beth, I loved homescholling last year Gavin last year but this year were not doing it. Well not really. The program he was on bumped us when Gavin couldnt start this year because he was in the hospital. So we are still waiting on getting him into homebound schooling. It's taking forever. He hasnt technically been in school at all this year although I do some things with him at home on my own. Since his surgery he has alot of endurance issues and especially with anything he has to Think on. It wears him out pretty quick.
Anyway sorry I hijacked your thread.
I cant help with the food issues but Im sure somebody will have some answers.

 

[Thumper321]

I edited this, but with Aidan and his endocrinology issues: I know there are some contraindications and that Noah was screened before starting on the diet to make sure his body would break down the fats successfully. So maybe they want to make sure Aidan doesn't go ketotic because his body wouldn't be able to break down the fats?

This totally makes sense to me. Aidan has malabsorption issues and his GI tract just pushes the fats on through. In general, he has a hard time keeping any fat from what he eats and it is very hard to keep weight on him. When he is ketotic, his body is essentially starving. And many times, it does lead to acidosis. Obviously, I don't think it would be an option for him if he developed seizure activity. Thank goodness that's not one of his medical issues!

Thanks for explaining! I guess I'm so used to looking at things from an endocrinology / gastroenterology standpoint, that I didn't 'get' the neurological aspect. I still don't completely understand it, but I'm glad that it works for Noah! Each child is different, and if you find something that's working for your child, you have to stick with it.

I've subbed, so I'm in for the long haul!

 

[noahsketomom]

So, how is it that I skipped over how this trip came to be???

Noah's godsend of a nurse (in the neuro clinic) submitted him shortly after his discharge in August. She visited him almost every day in the hospital. She knew of the original Disney trip that was cancelled and we both just ASSUMED that's what his wish would be. Kids do have a way of changing their minds at the drop of a hat, right?

Well, the MAW folks suggested I play act with him prior to their visit. Enter lots of interesting "play act" scenarios with a 4 year old. Here are the highlights:

1. "I want HUNGRY, HUNGRY, HIPPOS!!!" What? NO IDEA where this came from, but it persisted for a while and guess what Santa brought?

2. Then, "I want to go to Disneyworld and fight Darth Vader". (His friend had gone in the fall and we saw a video of him doing the Jedi Training at DHS.) Not to mention, my boys are Star Wars CRAZY!! Okay, play acting "successful."

3. Then, all of a sudden, just a few days before the wish granters came, he says "I want a big pool in the backyard." Seriously? Where does THIS come from? Does he realize that we live in a place where pools are only used for the month of July? But my husband and I just throw up our hands (and perhaps our yard?) .... after all, it is HIS wish.

4. So comes the day of the visit, and we're still not really sure what he's going to say, and he comes out with "I want to go to Disneyworld....because there's a pool there!" So there it is!! Something tells me, though, that once we're there, there will be a lot more on his agenda then just swimming!!


Since that day, everything has moved really fast, and we are seriously so, so, so excited!!! I can hardly believe it is really going to happen!

 

[noahsketomom]

My mother and sister just booked their flights and will be coming with us !

This will help so much in the event we have problems with Noah, fatigue of the two little guys, etc. That way the older two can be guaranteed full days....unless they tired out the adults too -- possible!

They haven't found a place to stay yet, but hoping to stay close to GKTW, since we'll be doing things together most of the time. I know other folks brought folks along -- did anybody do it this way? (staying elsewhere?)

Medically, Noah's doing well and got a "good" EEG report --- compared to what it looked like last time, this is AMAZING. So we've decided to try to wean a med SLOWLY and it's getting me a bit freaked out, since the last time we tried this we saw a bad seizure. So far, so good, but at least we're doing this NOW and not closer to the trip!!

 

[Momofwishkid]

Im so glad Noah's EEG was good and am hoping the weaning meds will go smoothly for him.
on your family getting to go with you. Im sure it's going to help alot with the kids.

 

[dmbfan]

Beth, how exciting about your mom and of course Noah's medical update...

By the way, we live in Bellingham, small town just over the boarder of RI.. My guess is your by the water?

 

[noahsketomom]

Hi, dmbfan!
Yes, we're on Aquidneck Island (where Newport is), but very close to Fall River, Mass. We are close to the water (1.5 miles or so), but the whole island isn't that big, so everybody is pretty close! Did you fly out of TF Green or Logan? We're flying out of Green.

Thanks for the on his EEG. We are CAUTIOUSLY optimistic about this. I just feel like since life can change so fast, I want to protect myself and not get overly excited! Dumb, I know. He had a bad day the other day and I thought "OH, no. The med change is going to start this all over again." Then come to find out I had forgot to give him some of the carb of his breakfast meal (spaced out on adding the blueberries), so he had TOO much fat and was overly ketotic. ARGH.