Headed Down A New Road...

It's been nearly 4 weeks since Nathan's scope, which by the way was not good. His EOS counts were high again indicating that the foods we were trialling (potato, chicken, rice) were hurting him. Mark and I have given tons of thought to our options and weighed all the pros and cons of each over these past 4 weeks. We aren't 100% comfortable with any of the options.

Our two options are:

1.) Keep doing what we're doing with no steroid treatment and continue getting no where. (We've been at this 2.5 years now and haven't been able to find anything safe to add for the last 2 years.) Trialling and removing foods has been awful, such an emotional roller coaster for all of us.

-OR-

2.) Start him on a swallowed steroid and begin food trials again in hopes that the steroid will work it's magic and allow for us to find more "safe" food for Nathan. I use the term "safe" lightly here... as these foods are highly likely to be unsafe if eaten without the steroid medication. In essence, the steroid medication will keep his body from sending out army's of eosinophils to his esophagus when he eats food. For some kids this works wonders and for other's it doesn't help. Medicating him so he can tolerate eating healthy foods just doesn't make sense to me, it's so frustrating! We already do this with the Erythromycin we give him 4x a day for his gastroparesis, which I hate the idea of just as much. 

Since the scope on August 22nd, Nathan has refused to drink ANY of his EleCare... he used to guzzle it down. This has nothing to do with the scope, in my opinion, just a timing coincidence... he says it tastes bad and that's why he doesn't want to drink it anymore. Can't argue with that at all, I wouldn't want to drink the stuff either. So we tried Neocate Splash "juice" in the tropical fruit flavor. He drank half of an eight ounce box the first one I gave him which was encouraging, but ever since he's refused to take more than a "baby sip", which equals sucking on the straw until the "juice" barely touches his tongue and then he stops and says, "I'm full." I tasted it to see what it was all about.... didn't think there was such a thing that tasted worse than EleCare, but there is... it's Neocate Splash tropical flavor. The fact that it's a wannabe "juice" yet it's a milky white color doesn't help thing either. 

Ever since Nathan was diagnosed our goal has been to treat this disease with as little medicine as possible and attempt to control it by diet alone. Two and a half years later that has turned into him literally surviving off of EleCare (probably the most unnatural, chemically induced "food", ahem... medicine out there) since he's just not into eating these days even his few safe foods. We are forever thankful for it because it's kept him ALIVE and GROWING, but it's really not in the category of us treating this disease without medicine. That being said we are going to go with option two and are going to try the steroid treatment. Another EoE mom shared her perspective, that it's better to give the steroid and have your kid be able to eat many REAL healthy FOODS vs. no steroid and living off  of EleCare and minimal real foods. I couldn't agree more... where was this mom and her advice 2.5 years ago!?!? The lesser of two evils that's what we're going with.

I spoke with Dr. Williams tonight and he agreed that it was time to give this a try. So he's calling an an Rx for Flovent tomorrow morning and we'll start it then. Excited about the possibility of Nathan being able to eat more "normally", but scared of the unknown long term side affects. Most kids who are on a steroid regimen treatment for EoE have not shown terrible side affects, but since it's an "off-label" use for the drug and there haven't been any long-term studies conducted for this particular use of the drug it's nerve-wracking. Taking this medication won't "cure" him of this disease, it will hopefully, allow him to be in "remission" from it. There will still be many food trials and endoscopies in his future to see if it's working or not. The steroid will need to be taken twice a day... FOREVER. If the steroid is working and we stop it, food could start hurting his esophagus again. So if for any reason we need to stop the steroid in the future, he'll loose the foods we added while he's on it and go back to just a few safe foods.

Since Nathan has ZERO safe meats/proteins right now, Dr. Williams wants us to go ahead and trail turkey and beef. If we can get Nathan some protein, we can reduce his EleCare volume which is the ultimate goal! Nathan's diet will still be quite restricted compared to a "normal" kid, as we will still avoid the top-8 allergens. That doesn't bother us as our goal with this steroid isn't for Nathan to be able to eat chemically infused, processed "normal kid"  junk food, we are just desperate for him to be able to eat HEALTHY REAL WHOLE FOODS without it making him sick.

We appreciate all of your thoughts and prayers as we turn down this new road, as it's one that's not been an easy decision.

Trying to remember: 

Here's our perfect, angelic, baby boy, fast asleep tonight as Mark and I made our decision.

Past 6 Months Update...

Sorry it's been so long since my last update... Nathan's been trialling 3 foods (potato, chicken, & rice) for the past 6 months. This is his second attempt at trialling these foods. Things were going great from the start when we added potato in the beginning of March. Six weeks later we added chicken, and he vomited once a week for the first 3 weeks of the chicken trial. I talked to Dr. Williams about it and he felt we should continue on with trialling it and chalk it up to being a random coincidence. So that's what we did. We had another appointment with Dr. Williams on May 20th and Nathan seemed to be doing okay with both potato and chicken so Dr. Williams wanted to add one more food before the next scope. He gave Nathan the choice between rice and apple, and Nathan chose rice. I wish I had taken a picture of his face when Dr. Williams told him he could trail another food. It was as if he had just been told that he was going to Disney World the next morning. Pure excitement! Priceless and oh so heartbreaking all at once.

The vomiting stopped after that 3rd week, but around the beginning of June Nathan began refusing to eat chicken. At first I thought he was just being a typical picky 3 year old, but after about a week of him refusing and choosing his EleCare over chicken and complaining of it hurting his tummy we decided to stop pushing it.

Another variable to the puzzle, is that Mark and I decided to stop the erythromycin in the beginning of June that we had been giving Nathan four times a day since March for his delayed gastric emptying. In hopes that maybe the delayed emptying was a flukey thing and that his little stomach would empty just fine on it's own. All seemed well but gradually Nathan was refusing to eat any food or drink his EleCare for most meals of the day and his g-tube was leaking like crazy again by July. A good day during this time would be him drinking about 10 ounces of EleCare and having 4-5 bites of food for the entire day. Nathan needs 36 ounces of EleCare to maintain the calories/nutrition his body needs to grow. We resorted to hooking him up to his feeding pump during the day and occasionally at night to get his nutritional needs met. Nathan would tell us that his tummy was full when we would try to get him to eat or drink even when there was no way it could/should be. He also vomited several times, so we started him back on the erythromycin on July 17th.

By August 1st he had his appetite back and would eat potatoes and rice but would refuse his other safe foods that he used to love. A couple days later he developed cold-like symptoms and a very hoarse voice that he even lost completely at one point. I took him to the pediatrician on August 6th and he was diagnosed with Tracheitis. So we started him on a steroid and antibiotic. Nathan seemed like he felt better about 3-4 days later, but his appetite still hadn't returned. Wednesday August 14th, finally he was hungry! The boy ate potatoes, rice, and raisins like nobody's business all day long. He still won't eat his green beans, carrots, pears, bananas and we're not sure why. Maybe it's just typical 3 year old behavior? Who knows.

In the past few days is appetite has been hit or miss. He'll tell us he's starving and ask for something to eat. Which breaks my heart, because even though he isn't "starving" thanks to his EleCare and feeding tube, he literally would be without it. We'll make him something he asks for and then he'll say he's not hungry. "I'm just good mama.", is his usual reply when I set his food on the table when he's having an off day. So we are really, really, looking forward to his scope this coming week. We aren't too optimistic that it's going to be a passing scope, but are trying to remain hopeful. Nathan's symptoms are so sporadic/atypical that it makes it so hard to tell what's going on. 

Your thoughts and prayers are greatly appreciated as Thursday rolls around. Even though this will be scope #6 for Nathan, it doesn't make it any easier for us to hand him over to the doctors. In fact, I think it gets harder each time knowing that there are risks with anesthesia and the endoscopy itself. It's hard to not wonder if this will be the time that something goes wrong. For now we'll remain positive and remember: Proverbs 3:5 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

37%...

I talked to Dr. Williams tonight and Nathan's gastric emptying test showed that Nathan's stomach is emptying 37% in 90 minutes. A normal individual's stomach should empty at the rate of 50% in 90 minutes. So yes, he has gastroparesis. :o(

We have tried so hard to avoid medications treating his EoE and have been fairly successful, avoiding his trigger foods and Prevacid has been working well. I guess EleCare would be considered a medicine too, but without it Nathan wouldn't be here, so maybe we aren't avoiding medicines all that great after all, but I am just happy we are able to keep him off of the steroid treatment for now. Giving him a daily steroid just doesn't sit well with me. We made need to go there one day, but Mark and I aren't ready for it just yet. We are still faithful that we can find Nathan foods he can tolerate without it.

Unfortunately, there aren't many options other than taking medicines to treat gastroparesis. So Nathan will begin taking Erythromycin (a low dose antibiotic, grr!) 3 times a day... forever... or until this magically disappears which, at this point I don't know enough about gastroparesis to know if that is even possible.

So, I'm one disappointed momma tonight finding this out. Trying to look on the bright side, and think about the positives, Nathan getting his appetite back, and for his g-tube to stop leaking all over the place! I am thankful for all of the wonderful medical advances in today's world, but it frustrates me to no end that medicine is required to get Nathan's little body to work like it's supposed to. Eating healthy food should make your body function appropriately, but EoE is a crazy thing. :o/

Scope #5 & Gastric Emptying Study...

Nathan's scope on February 28th went great! Based on Nathan's lack of interest in food over the past several months Dr. Williams was surprised to find his esophagus is such good shape visually. The furrows had healed and there was no inflammation! The highest eosinophil count from his biopsies was 12.... a bit frustrating to me because he's had 0 in the past with the same foods he was eating, but nonetheless it's a low enough count to be considered a pass. (15 is the minimum number were EoE is considered to be uncontrolled) So it's cutting it close, but we're going with it and trialling potatoes again!

We started the potatoes on March 6th and I wish I had gotten a picture or video of Nathan's excitement when I told him I was cooking him potatoes for breakfast that first morning! It's been 12 days since we started them and about 3-4 days ago he started with a runny nose and the dreaded coughing and gagging at night. Mark and I have both been a little under the weather the past week too, so we are going to keep the trial going and just pray it's a cold he has. 

Since Nathan's scope didn't reveal a reason as to why he's not been interested in eating lately along with the fact that his g-tube has been leaking like a faucet when he's hooked up to his pump at night, and the fact that I mentioned that broccoli pieces Nathan had consumed 24 hours prior were still in his stomach when I vented his g-tube one night Dr. Williams wanted to do a Gastric Emptying Study to check on his stomach and how it is emptying.

A zillion years ago, way back before we even knew that EoE even existed, Nathan had an Upper GI Barium Swallow test done to try and figure out the reason for his constant projectile vomiting. The results showed delayed gastric emptying and a pyelorospasm. At the time we were told that it was likely due to a milk allergy, so we stopped the dairy and continued on with the barfing until we discovered it was in fact, EoE. At that time we were so happy to find out what was wrong with Nathan and once we began treating it his symptoms improved we never gave those results another thought, until now.

The Gastric Emptying Test was done last week on March 14th. We are hoping to get the results tomorrow... the wait is about to make us crazy! So I'll be sure to update once we know what they are and what the plan is. I don't want him to have another diagnosis alongside his EoE, but gastroparesis would certainly explain why he's not hungry at mealtimes. For now, we'll practice our patience and wait and see what Dr. Williams says.

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

Philippians 4:6

In recovery after his scope on February 28, 2013

This boy can do anything with Mickey and Gigi by his side!

Brave, Nathan laid perfectly still like this for 90 minutes!

Not the greatest picture of the first image, but you can get the idea of what his tummy looked like at the beginning and towards the end of the test. 

Appt. With Dr. Williams...

Alright... so I failed to post about Nathan's biopsy results from back in November. That's partly because the news wasn't good, just as we expected based on what Dr. Williams saw when he did the scope and partly because I just thought that maybe if I didn't post it, it wouldn't be true. Silly, I know, but it was my way of thinking and then... time just got away from me also.

So the results showed 30-35 eosinophils in all areas biopsied, which means his EoE is active and not under control. His esophagus also showed furrowing which is a sign of damage to the esophagus caused by the elevated eosinophils. When Nathan was first diagnosed in March of 2011, his counts were 75+ and he didn't have furrowing of his esophagus, just another way this crazy disease makes no sense at all. No wonder it's so hard to treat. Ugh.

Today we met with Dr. Williams again to determine the next step in Nathan's course of treatment. He will have his next scope on February 28. This will be his 5th scope in two years. Since  his scope in November and removing so many foods Nathan's appetite has been terrible, at first we thought is was just him adjusting to having his favorite food (potatoes) removed from his diet, but it's continued on now for 10 weeks. Nathan will say he's hungry, we'll offer him the 6 foods he can eat and he either wants none of them and grabs his EleCare, or he'll say he wants something, takes one bite and then tells us he's not hungry. Needless to say, mealtimes, which we don't even really do in our house anymore, (because every hour or so we're offering him food in a desperate attempt to get him to eat something) haven't been fun. It makes for an exhausting day constantly pushing food on Nathan in hopes he'll want it. He lost weight in December due to this, so we have increased his amount of EleCare and he's done pretty good drinking it on his own, but we are back to using his g-tube fairly regularly again, but because of this he as regained the weight.

Last week he ate two small bananas one right after the other and then asked for a third, I was elated because he hadn't wanted a banana other than jarred baby food banana in weeks. The third one he just looked at and didn't touch, I didn't mind because he had just had two, but since that day he won't even touch a banana now. This is pretty much what he does with all of the foods he's allowed right now. It is so frustrating!!! He'll eat something pretty good for a day or two and then want nothing to do with it for a week or longer. We are at a loss as to why and Dr. Williams is also. We are hoping that the scope reveals an answer, which means his counts will still be high. Which is a double edged sword; it will explain why he's not interested in eating right now, but it will also mean that these 6 foods he "passed" last year are no longer safe.

A couple of weeks ago Nathan was begging Mark for some broccoli, Mark gave it to him out of desperation for him to eat that day even though it wasn't one of the 6 "safe" foods, Nathan enjoyed it. He's asked for it off and on and done well with it so far. Today he asked for it for lunch and he ate the tops off of two pieces and then said he was done. For dinner tonight he asked for it again, and ate 4 whole pieces, which made Mark and I happy. (It's kinda sad when your child eats 4 pieces of broccoli and you're excited and think that he ate a good dinner, but that's what we do.) Aside from his EleCare this is all he ate today, and this is what a normal day is food-wise for him currently. It's very frustrating as a parent to hear your child say, "I'm hungry" and then them not want to eat, or just barley eat and then say they are finished. Frustrating isn't strong enough of a word... it's downright heartbreaking. We hear this from Nathan daily. It's awful.

So, we've definitely moved backwards with all of this EoE stuff this winter, but Mark and I are trying very hard to remain optimistic and keep our faith that this will get better and Nathan will be able to eat without food hurting his little body one day. Some days are harder than others, but most days are good, we've lowered our expectations for him for now so that we don't beat ourselves up too much over how hard living with this really is. He did so well in the beginning once he was diagnosed and we began treatment that Mark and I kind of lost sight that this can be a back and forth process treating this disease. Despite all of this though, Nathan remains his happy, silly, energetic little self for which we couldn't be more thankful. He smiles all day long and has no idea how amazing and strong he is. He mentions a food that he can't eat because it makes his tummy hurt, and follows up with, "I'm so sorry, mommy." Bless him, he's so content with a situation that would be unimaginable to most.

Rejoice always, pray without ceasing, give thanks in all circumstances.

1 Thessalonians 5:16-18