Scope # 4 Results

Well, to start off, the past 4 days have been rough, to say the least.

Friday, John was his normal self, eating fine, sleeping fine, everything was a-okay and normal.

Saturday, however, John started throwing up. I called the GI office in Greenville and the Doctor on call called me back with in five minutes. She didn't think that it was a reaction to the anesthesia because it had been two days since his scope but she was concerned about John becoming dehydrated due to his limited diet so off to the local ER we went. They evaluated him, decided that he did not yet need fluids and gave him some zofran to help with the nausea and make it possible for him to keep some fluids down. That worked for about 5 hours and he could only have it every 8. Sunday, still vomiting, more zofran. Monday, all seems to be okay, he's keeping down half strength formula and sleeping and playing like normal. I thought it was just a bug or virus and it had finally run it's course and we were past it.

This morning, more vomiting!! I'm losing my mind here! It's not looking like a bug. It's looking all too familiar.

It's looking like John is having an EoE flare up.

So I start making phone calls and wracking my brain for what on earth he could have been exposed to that would cause a reaction 6 weeks into a food trial when he'd previously been symptom free.

I took him to Dr. C and he ruled out virus or bug like we thought since John's only symptom is vomiting. He also ruled out an ear infection, strep, an intestinal blockage, and appendicitis. 

So, now I'm just waiting for the call from Dr. M's office to advise us on what we should do from here and to give us the results of his scope. 

John has been snoozing off and on all morning, something he hasn't done since he was 6 months old, so I know he does NOT feel good. 

After what seemed like forever we finally have the biopsy results back...

9

That's his eosinophil count.

There should be ZERO.

It's not bad, but it's not good either. It means that his disease is not in complete remission anymore, but it explains his vomiting. He has mild esophagitis. 

When his disease was full blown and untreated his count was 70-104.

However, we do not think it's from the sweet potatoes. We believe that it might be coming from a new PPI (proton pump inhibitor, like nexium or prevacid) that we had to switch him to, two days before his scope, because the pharmacy ran out of an ingredient in his normal prescription.

So, the plan of attack now is to get him on a new PPI, go elemental again and let things calm down. If John isn't back to normal by this time Thursday then we will do another round of steroids (one of my least favorite words this last year) and then wait some more. Once John is symptom free again we will start the sweet potatoes back up again. I'm not sure if Dr. M is going to want to do another scope before we start another food trial or if John's symptoms alone will be enough but either way our next food trial has been pushed back, for at least a couple of weeks.

I have some mixed feelings going on for sure right now. I'm furious with the pharmacy, I'm heart broken for my sick boy, I'm disappointed about having to stop sweet potatoes, and I'm anxious to get John back to normal and back on track, but I'm thankful that there is a pretty good chance that sweet potatoes are safe.

Now, because this wasn't  the happy celebratory post I expected it to be, I'm going to do a picture dump instead :) Enjoy

Halloween and Scope #4

It’s been a while since I updated last and a lot has happened!

Halloween was uneventful since there isn't much we could do with John this year. I made his costume and he was the most adorable Peter Pan that ever was, in my humble opinion. 

Next year I plan to make up some goody bags with little non-edible treats and a note explaining about kids with food allergies that can’t eat candy and other foods to explain why I’m giving toys instead. I wanted to do this this year but didn't think of it in time to prepare anything. We also plan to take John to do the traditional trick or treating and let him use his candy like money to trade for toys and things and then we will either eat the candy ourselves or donate it. 

We've been on the sweet potato trial for 5 or 6 weeks now and this week John and I went to Greenville for his endoscopy to check if they are a safe food for him or not. 

We stayed at the Ronald McDonald House in Greenville and first off I want to say “WOW”. What an amazing thing they have going!! John was greeted with a hand made quilt and a wooden car.

 I was  fed two meals every day and  had access to a kitchen stocked full of food for snacks and lunch. There was a toy room stocked full of all sorts of toys for John to play with and I didn't think he would want to leave!

I felt very safe being there without Doug, which I don’t think I would have, completely, in a regular hotel. The doors are all locked with a code that only residents have access to so not just anyone can walk into the house. 

It was also really nice to be able to talk to other parents with chronically ill children while I was there. It made things feel a lot less lonely. I read somewhere the other day that the feeling of loneliness isn’t about being alone, its about feeling like no one understands/cares.

I’ve decided that I want to give back to the RMH. I’m going to call the local RMH and see what I can do/give. I’m hoping to make some blankets to donate and maybe some meals and some of my weekends too.  I will probably be spending more time than I care to at the Greenville RMH so I feel like the least I can do is give something back to the one in my own town, that thankfully, I do not have to utilize.

This was John’s 4th scope in a year and on the anniversary of his first scope, almost to the day. The day after to be exact. He did well, like he always has at Greenville Children’s. 

It will be a few more days before we get the results from the biopsy taken during John’s scope but Dr. M said his esophagus looked good. He also said it looked like there might be some slight irritation in his stomach but it’s hard to tell just from looking. 

So we wait. 

In the mean time I’m making plans. 

We met with John’s dietician while we were in Greenville. She is a little concerned with the rate of John’s growth. He has only gained one pound since June, weighing in at 21 lbs. So we are looking for a high calorie, high protein food for our next trial. It was between Bananas, Avocado, or Quinoa (Keen-wah). Avocado and quinoa are the better two options as they are both super foods meaning they both are packed with vitamins, are high in good protein and good fat. Avocado was what I really wanted to do but with the holidays coming up I didn’t want to have to deal with the storage issue of them turning brown when exposed to air. Also it’s the wrong season for them so finding fresh ones that he could eat that same day would be hard. 

So, quinoa it is!

We are going to start with the flakes and add them to his sweet potatoes (assuming he passes them!) and gradually increase the amount of quinoa and decrease the sweet potatoes until I have him eating just quinoa.

With quinoa I can do soooo much! Pancakes, crackers, flat bread, and at some point , when he has more safe foods I can use quinoa to replace a lot of things, like oats, flour, wheat and pasta in other recipes.

I was super nervous and hesitant to start the sweet potato trial but I’m waaaaay excited about starting the quinoa. I can hardly stand it. 

We also talked about John’s texture issues and she said I needed a better blender/food processor. 

Apparently there is two out there on the market that will puree an apple or a pear and it not be gritty AT ALL. Seeds and all! The grittiness of the apples was the reason I had such a hard time getting John to eat them! The problem is that these blenders are insanely priced! I’m talking like $500.00- $700.00!! 

I guess for now, I’ll stick with my basic cheapo food processor and smooth foods for trials, like avocados and bananas. Maybe by the time we start trialing other foods I wont even need to puree them anyway! 

I will update again as soon as I get John’s pathology report back. I hope it will be with good news!!

Vlog Time!!

And here it is!!

Thanks for asking questions!!

Scope Number Four

We now have the date set for John's next scope to check and see if we can officially call sweet potatoes a safe food! 

Hospital policy says that Dr. M has to see John with in three months of a scope so we have to go in the day before the scope for a visit. We also have an appointment (FINALLY) with the registered dietitian that works in Dr. M's clinic. 

Since all three of John's appointments over two days are early in the morning and we live over three hours away I have asked to be put on the waiting list for the Ronald McDonald House in Greenville. 

I hope that I will be able to drive up with John on the 6th and come home after his scope on the 8th. Hubby cannot get off work so John and I will be making this trip on our own.

I got some really great questions for my vlog and I'm really excited to answer them.

I tried to do the vlog yesterday and found out that my webcam only records in 7 minute bursts so, I either have to talk faster, shorten my answers, or have Hubby splice two videos together. I hope I will be able to post it soon. So, thank you for responding!!

PAUSE

I guess I'll start with the developmental pediatrician. She didn't mention the autism diagnosis so I'm going to assume that it still stands. She said that verbally he is at a 20-24 month level but socially and his play he's at a 12-14 month level. So we need to work on his interaction with other people, which is hard since I cannot just put him in a day care or mothers day out program.
John's OT has started combining his Tuesday therapy with another little boy to see if that helps. The first session did not go so well but we are hopeful.

One week into the trial and NO SYMPTOMS!

The trial.
John LOVES the sweet potatoes now! As long as I sweeten them.... A LOT. :)
I'm okay with that as long as he's eating them. He was eating up to 4oz a day, willingly, with a spoon. No more hiding it in his bottles.
But...

We've had to push the pause button on the sweet potato trial. 

John had started to cough and have increased reflux. He was also showing signs of having difficulty swallowing. To rule out a virus we temporarily pull the trialing food and wait to see if symptoms clear. Once he's clear then we will re-introduce the trial. Once I pulled the sweet potatoes John developed diarrhea. That points to a virus since that hasnt been a typical EoE symptom for John in the past. That doesnt mean that it isnt EoE, just something to take into consideration when trying to decide if symptoms are due to an offending food or a bug. I swear we are the only parents that HOPE that our child has a virus. It's so much easier to deal with a virus or a bug than an EoE flare and failed food trial. 

It's been a couple of weeks now since I pulled the sweet potatoes and all symptoms have cleared up so I'm going to try re-introducing them today and see how we do for another week. That's about the time that we will need to go ahead and schedule another scope for John. He will continue to get scopes every 4-6 weeks while we are actively trialing foods.

So that's where we stand on the food trials.

John has been really stressed out this week because Doug's work schedule changed. He is now home in the mornings but not around to bathe and put John to bed at night.
John has become very clingy, not sleeping well, not wanting to work in therapy and more autistic tendencies are showing themselves. He's rocking more, now even when he's standing he's rocking, or I guess I should say swaying, from one foot to the other. He flaps his hands near his face when he's scared and he's zoning out more when he spins the wheels on his cars. We are working on helping John transition through this change as easily as possible but it's so hard to see him effected so much by something seemingly so small, like this change in his schedule. I'm sure he'll be adjusted, just in time for Doug's schedule to shift again...

I will try to do better in keeping you updated on food trials! I didn't realize it had been so long since I updated!!
So, now I want to hear from you!
I'm thinking about doing a vlog next and want to answer your questions!
Ask me anything about EoE or our life living with out food and I'll try to answer them all in my vlog! 

A Day in the Life - Link-up Party!

At the insistence of my sweet sister over at Living with Renewed Strength I've decided to try out this link up thing. :) I'm linking up with Holly who is hosting this little "Day in the Life" shin-dig.

So, the idea is to give you all a peek into my life here at The Hemme Haven on a normal day for us, so here goes!

*edit* I could not get the button to work :( but I linked back to your blog above Holly. :)

6:15am The Hubsters alarm goes off and Sadie, our 4 year old Corgi jumps up for a cuddle.

7:30am John wakes up, so I drag myself out of bed and go get the happiest kiddo on the planet out of bed. Diaper change and into the highchair. I brush John's teeth and he get's some medicine that is pretty much nexium for babies and has to wait half an hour before he can eat after taking it. So I turn on Leap Frog Phonics Farm. While he's watching that, I weigh myself, brush my teeth, let the dogs out, back in, and feed them, then I get to drink my protein shake. Sometimes I have to wash bottles from the night before.

8:00am John get's his first bottle of the day. I usually make his first bottle of the morning 1.5cal/ml but since we are trialing sweet potatoes right now, I make a 6oz 1cal/ml bottle with about two tablespoons of pureed sweet potatoes in his morning bottle. We watch Leap Frog Number Land while he's eating to keep him distracted enough to eat with out thinking about it. It takes him about half an hour or so to finish a 6oz bottle.

8:30am I turn on our favorite Pandora station, Raffi, and John plays while I check my email, Facebook, and get John's cloth diapers ready for the day.

10:00am On Tuesday and Thursday John has therapy from 11-12 so on those days I start getting us both ready to leave which involves brushing my hair and finding clean clothes for us both, a diaper change, packing John's bag, and any food we are trialing.

10:50 Walk out the door to go to therapy.

11:00am-12:00pm John is in therapy with his Occupation Therapist who we LOVE. She has brought him so far with his oral aversion and things are improving every week. She usually uses a Z-Vibe off and on through out the session. She works with him drinking water out of  a cup. Works on gross and fine motor skills. If we are trialing a food, like we are right now, she will work on getting him to eat that food with a spoon. The last 10-15 mins she lets him play in the gym. He loves the ball pit and the swing.

12:15pm Back home for a diaper change and a quick 1 cal/ml bottle of Elecare Jr Vanilla, then it's NAP TIME! My most favorite and least favorite time of day.

12:30-2:30pm John naps. I, however, eat lunch, usually left overs from dinner the night before, pick up the living room, vacuum. Do dishes, clean the counters, whatever laundry needs to be done, and general tidying up. If there is any time left I might sew, crochet, update the ol' blog, and/or Facebook stalk. Some days I even indulge in a nap for myself!

2:30pm John starts to wake so I get his sweet potatoes into a bowl, then go get him. Change his diaper again, and try to get him to eat a little bit. Depending on how much he ate of that I might make a small bottle since it's only been a couple of hours since he ate last he wont eat much.
The rest of the afternoon is pretty much just spent doing whatever. Playing around the house, going to the park, going shopping, whatever we are in the mood for. No real schedule, except John's feeding.

4:00pm John gets another bottle and another diaper change. 1.5 cal/ml OR 1cal/ml with sweet potatoes.

5:00pm Hubby comes home and I start cooking dinner while he get's some one on one time with the boy. I love hearing my son giggle while I'm cooking, knowing that he is thoroughly enjoying his Daddy.
When we eat depends on what I cook but John sits in his highchair watching a movie while we eat.

6:30pm Not every night, more like every other night, The Hubs gives John a bath. Every night, he gets more medicine. Feed the dogs again.

7:00pm One last bottle for John, usually an 8oz 1.5cal/ml.

7:30-7:45 John goes down for the night.

8:00-11:00pm The Hubby and I watch TV, talk, surf the internet. We both clean up the living room and kitchen. Hubs get's all he needs for work the next day ready to go. I throw a load of cloth diapers into the wash and then it's off to bed!

And there you have it! A day in the life of The Hemme's

Sorry I don't have a bunch of cute pictures to accompany my play by play. This was a last minute post and I've not documented most of these things before. Maybe I'll do that one day. 

I hope you enjoyed your peek into our life. 

Retrain your Brain

Last night, I really really really really wanted to give my son a hot dog. I mean what kid doesn't love hot dogs? They are like a childhood staple!!! I wanted to give it to him so bad that I found myself trying to reason with myself about how it might not be so bad if I were to just let him eat it, this one time! I had a moment of wanting to just say, "I'm done with this disease!"

I just want John to be able to enjoy his childhood. That's the main thing. What I need to realize is that he does NOT need food to have an enjoyable childhood. At least not in the sense that I'm referring to right now. I need to focus more on making his life full of memories that don't involve food. I want to make my life that way too. Looking back on my childhood, my best memories involve food! Mac'n'cheese with my siblings and cousin at our Grandmother's house during the summer, Grandpaw walking us to Mc Donalds, Sunday night's after church at Cancuns, Thanksgiving's at Granny's, the family dinner table.

I've got to be creative in making memories for my child that don't involve food.

My husband and I have been on a diet for a few months now. We realized how much we abuse food. It's about a life style change more than a diet. Learning to listen to our bodies. Thinking of food as sustenance, not a social activity. I wish society, as whole, would get into this mind set. We would no longer be the most obese country in the world! And it's not just about portions and only eating when you're hungry, and stopping when you're body is satisfied... it's about being more conscious about WHAT you are putting into your body! Read the ingredients list on the back of your favorite snack or lunch. How many of those ingredients can you pronounce? 

I would love to go back to the hunter/gatherer life style. Minimalist! One day. :) When we have land and can grow our own food. 

Speaking of growing our own food. I've decided that whenever John passes a food trial, we are going to make a big deal out of going to buy that foods plant or seed, planting it in our yard and growing it ourselves.

Let's hope our first planting is a sweet potato!!

Yesterday I started the trial and John was refusing to eat it with a spoon. :( I did some polling of the AMAZING girls in my support group and came up with  the plan to put a few table spoons into his bottle of formula. This morning and last night John had sweet potato milk. :)

This way I will know that he's getting enough of the sweet potato in him to call it a trial and if he does okay, then I'll put in the hard work of getting him to eat it! We are still trying to get him to eat it with a spoon but not pushing too hard until we know if it's even safe for him. 

Sweet Potatoes

We are trialing sweet potatoes now. We started today!!

Same process as with the apples. I bought an organic sweet potato from Earth Fair, it's as local and fresh as I could get, next to the farmers market or growing my own.

first we peel

then we slice

then we steam

see the steam??

good grief I love this kid!

look at that face!!!

watching the steam from the potatoes cooking

my lovely food processor!

I want some!

So far he's acting like he doesn't like the taste. I'm hoping that it's just because it's new and things will get better. I'm going to try adding some sugar to see if that helps with the flavor any.

It's so hard to know what's learned behavior, (food makes me feel bad, I don't like food), what is that he just doesn't like the flavor of this particular food, and what is actually an allergic reaction!

I will report back in a week or so with how things are going!

Wish us luck!

no news...

.... is good news right?

I have a little bad but mostly good news so I guess it can be.

I left you last time with John doing a round of steroids to knock out the flare up that was caused by the apple trial. We did Prednisone for a week. This was our first time on Prednisone. Our old GI used Pulmicort for 15 days. Dr. M prefers Prednisone because it works faster so the less than desirable side effects are shortened but the side effects are so different!! We had very few if any side effects the two times we used Pulmicort. The biggest one with that one, we didn't even experience, is thrush. It was a pain trying to wash out his mouth every time we have him the medication, four times a day, (another pain), but it kept him from getting thrush. It was also harsh on his body being 15 days. Steroids stunt growth while you're on them.
But with Prednisone, there are horrible behavioral, mental, and physical side effects.
John was aggressive, sensitive to things like clothes and his diaper, and irritable. He was clenching his jaw and grinding his teeth. Pulling on his clothes and diaper and taking them off whenever he could. Throwing himself on the floor and flailing around. Throwing things at me, at my face. Hitting, pushing. Generally, just unhappy. He seemed to be so tense. It broke my heart to see him that way.
 The side effects last long after you stop taking the drug too. John was not 100% back to his normal self for nearly three weeks.

He is also still having some vomiting issues. They seem to be random and I cannot figure out if they are related to EoE, or his sinuses, or he just ate too fast or too much! So we are still putting off the sweet potato trial. I'm seriously considering not doing food trials at all, until he can request them himself. It seems to put his little body though more stress than it's worth, and it's putting a lot of stress on his father and myself for sure! It's so hard to decide what's best for your child when both options have a very large potential to make your child very sick. IF we were to go that route, of delaying food trials, he would more than likely end up with a feeding tube. We really need to find two dozen safe foods for him to thrive with out a feeding tube, or get him drinking a lot more of this formula every day.
He may end up with a feeding tube anyway!!! This formula does NOT taste good and it's really hard for older kids and adults to drink enough of it to sustain them everyday. I know I wouldn't be able to do it.
Another problem that we have with failed food trials, besides the vomiting, and the scopes, and the steroids, is that John stops eating for weeks when he's having a flare and it takes him a long time to get back up to the minimum amount he's required to drink to continue to grow. We still are not back to that point since the apple trial.

One thing we are working on with the therapist is getting him to eat shaved ice and his formula frozen and made into "ice cream". So far we are up to 2-10 bites per sitting. All of this is preparing him for his next food trial. The less stress that is involved in a food trial the better. So we can know for sure what's an EoE flare, or allergic reaction, and what is just reflux/stress/oral aversion, causing his body to reject the food.

We have a lot to think about, talk about, consult about.

John just turned 20 months on the 15th. He weighs less than 20 pounds.
He is still the happiest baby you'll ever meet and is progressing in therapy by leaps and bounds!
He has over 20 words, is starting to put two together.
He counts! It's adorable!
He is running, kicking balls, walking backwards, climbing on everything, and always on the move!
He sleeps amazingly! 10-12 hours a night and 1-3 during the day. He loves sleep as much has his parents.
He surprises me every day. He makes us laugh all the time.
He keeps me on my toes and I love him more and more every day. I would not change a thing about him or trade him for 5 healthy kids!


Here is a little flash back. John over the last 20 months. :)
Enjoy!

So much has changed in 20 very short months!!!


*Edit 8-29 9:50am*
We also have a follow up appointment with the developmental pediatrician tomorrow. We will see what she has to say about John's improvements and find out if she still thinks he has autism. -M