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EoE
Maybe We Can Do This
So not only are we dealing with EOE, food allergies, and everything that goes along with that, but I am also homeschooling. I pulled the boys from school a couple of weeks ago and have decided that this is what will be best for them, but that’s another post for another day.
Today we had a park day with a dear friend. Whenever I’m needing to recharge my cup and get some good girl time in, she happens to message asking if we want to do a park playdate. It’s like she knows I need her. Have you ever had that friend who makes you want to be a better mom, wife, and follower of God? That’s her for me. She grounds me, gives me peace, and makes me want to be better. After the past couple of days we’ve had, I knew I needed her presence around me. I just hope that I help her as much as she helps me.
She gave me some good tips for homeschooling, and some reminding that I need to be patient and have grace. Sometimes what I want to happen won’t happen, and that’s okay. Sometimes having some flexibility will work, and sometimes knowing that the kids just need to get out and have hands on learning is okay.
After the park, we went to Kroger. All I want to say is thank God for Kroger’s natural living section. I found so many safe things for Chris, and they taste really good! The mac and cheese was surprisingly really really yummy and the crackers are a big hit, even with my non food allergy kiddos.
I feel like maybe I have a handle on this. I don’t do well with change. I don’t do well with things I can’t control, so until I can find that control, I feel very out of sorts. Maybe, just maybe this is going to work. Maybe I can handle it all.
Oh Instant Pot!
I have joined the ranks of Instant Pot owners. I can’t believe I gave into peer pressure, all while not believing I didn’t get one sooner.
With the food elimination diet and all of the changes, I decided getting one would possibly make my life easier. I mean, how many times do I forget to take out dinner so I just went and grabbed something quick and easy? How many times did I say “we’ll just order pizza”?
Luckily I have a big family so an 8 qt isn’t too big for us. Amazon is sold out of the 6 qt for a few months so we hit order now and bam it showed up a few days later. I admit I was scared. Here’s this new kitchen gadget that everyone promises will change my life. What if it falls short? What if it blows up? What if I hate it? Oh the pressure (giggle)!
Okay this doesn’t look so scary. Sure it’s a little heavy and maybe a little confusing, but let’s just jump right in! I ran the steam test cycle, and it seemed to work fine. I decided that tonight was going to be my test run and if dinner screwed up, then we would have sandwiches.
I found a youtube video that was making a pork loin so I loosely followed that. Then I found another where she put potatoes in with her pork loin so I just said “Go big or go home!”
That’s a Smithfield pork loin, 2 cups of vegetable broth (better than bullion vegetable), and yellow potatoes seasoned with olive oil, fajita seasoning and Monterey seasoning.
I closed the top, hit the meat cycle, put it at 40 minutes (bigger roast and more potatoes) and let it go. Whew that was scary.
Now I admit I wasn’t sure that it was actually doing something until I started to smell the stuff cooking. It was very faint at first, and then got stronger. Some steam naturally escaped, which freaked me out, but it kept cooking so I just let it do its thing.
After it was done cooking, I let it naturally release for 10-12 minutes, and then released the rest. When it was safe to open, this is what it looked like.
From raw to completely cooked and ready to eat in about an hour. I am in love with this! The pork was perfectly cooked, and the potatoes were well done and had a ton of flavor. I am very impressed and very happy with my investment.
If you have any doubts, get one. If you are unsure, don’t be. Take the plunge. Join the Instant Pot club. You will not regret it!
Lots of Tears
Today was our first grocery shopping trip with our major elimination diet. When I say major elimination, I mean I read every label. I did research before going to the store. I was not going to screw up by accidentally getting corn or dairy somehow. The first hiccup we hit was when I asked Chris, stupidly, if he wanted some shrimp ramen for quick meals when we are running late. Then I read the label. Did you know ramen has dairy in it? I sure did not. Then I said, “I wonder about pork…no, Bubba, I’m sorry this has dairy in it too.” His face fell, but he kept on trucking. I skipped the cereal aisle, because I had just bought some, went to the baking aisle where I bought spices for homemade taco seasoning. Store made stuff has corn in it. I had no idea until I read the labels.
Then we went to the chips. I needed chips for the boys and was also looking for crackers. We went down the chip aisle, and Chris got so excited because he wanted his favorite chips. What are his favorite chips? Cheddar Sour Cream Ruffles, which he can’t have. He asked for goldfish, and I had to tell him no. He asked for Cheese Itz, and I had to tell him no. This is when he started sobbing. I just stood there and cried with him as we hugged. We cried because it’s not fair. We cried because his life is not ever going to be normal. I cried because he is so tough and go with the flow, and he just wanted some chips, his favorite chips that he shares with his daddy.
This is going to be a lifestyle change for all of us. It’s not going to be easy, but we will all do it so we can make sure Chris is as healthy as he can be.
It Begins
As y’all know, we moved from MS to TX over the summer. Due to insurance, I had to get new referrals for C to see his old EOE/Allergist team and it took a while to get him in. Today we had his first of many appointments for allergies and EOE.
I was nervous to go. I hadn’t seen them since he was first diagnosed in 2014, and I admit, haven’t really been following EOE protocol to the T. He has been growing, thriving, and not exhibiting any outward signs of EOE like other kids. We had been careful with his anaphylactic allergies but for EOE, we had been taking a wait and see approach. It wasn’t until we made the ear infection connection that I really became serious about this. So anyhow, that’s why I was nervous. He isn’t on any allergy medication, or asthma medication, or anything. We have epi-pens, we have benadryl and albuterol. I just was taking the wait and see approach. I realize that’s not always the best but it is what it is.
They come in, and I apologize for it being so long and him not being on any medication, but because of the move blah blah blah. They were absolutely amazing and understanding. It was so nice being able to talk to an allergist who understands EOE and the intricacies of it. It was so nice having the doctor say “he’s not a normal child, he is not typical, and we will not be doing any immunotherapy testing on him.” (Immunotherapy food allergy testing is where you slowly introduce an allergen by mouth and build up immunities to an allergy. It works, but for EOE kids, it’s not a good thing to do.) She said that she didn’t want to do skin testing on him because he is so reactive right now and being off of medication for so long, he will be hyper reactive. She also didn’t have a fresh banana, and she said that’s the absolute best way to test an allergy. However, she did do blood testing and will determine which skin testing to do based on his levels for that. I am curious to see if he really is allergic to banana and latex, and to see how his blood levels have changed since his last blood test a year ago. I told her what happened the last time he had a skin test done (he threw up about 30 minutes after the test), and she said that can happen especially when they are positive to everything you test them for. She said his peanut allergy is absolutely anaphylactic and I absolutely did the right thing by using the Epi-Pen on him back in March when he reacted to the banana. It’s nice, but scary, to hear “you absolutely saved his life.”
Now here’s the EOE news. He sees the EOE team (herself, GI, dietician) March 13th. Since we know he has EOE, he’s been scoped on EOE protocol and had positive results, there’s no need to wait to see the EOE team to begin treatment. We are starting his elimination diet, based on patch test allergies and his IGE allergies. (For those who don’t know, EOE triggers a different allergic reaction system than IGE allergies.) He will have to avoid chicken, beef, dairy, corn, peanuts, tree nuts, and bananas. I think I’m missing one, but I know he can have wheat, he can have rice and potato. He can have eggs and seafood and pork. Yes his diet is going to be changed, and it’s going to be difficult but if this gives us a beginning to help him feel better overall, then it’s worth it. I would prefer to start with diet elimination, then add steroids, then whatever else, rather than start with the big guns.
It’s hard to see and to think of everything he has to go through. I often question and wonder why this is happening to him. Why do children get sick? Why do children have to suffer more than adults do? Children are innocents and is just plain not fair what some have to endure. I don’t want to make him go through these surgeries and elimination diets and other crap. I don’t want him to have to be basically a test subject for this disease, but if he can help others and help the doctors understand, is it worth it? Isn’t it worth it for him to be able to exist and enjoy life without feeling like crap?
If anyone has any good ideas for dairy free cheese, yogurt, bread? Um, how do I deal with no corn? He can have corn syrup and oil but nothing else corn. I need non beef and chicken meal plans. I need help cooking fish. I don’t do fish, but this is something I’m going to have to start cooking more of. HELP!!!!
Normalcy
Normalcy, what is that? Being a mom to 5 boys, my life is definitely not normal. Having children on the spectrum means my life isn’t normal, and having one with different medical needs puts me at a lack of normalcy as well. For someone who is very type A and must control everything, this is hard to handle. However, today wins at normalcy.
C learned how to ride a bike without training wheels today. He just hopped on a bike and took off. I can’t stop crying, not because I’m sad, but because with all of this crap he’s been handed I’ve always said I just wanted him to have as normal of a childhood as he can get. And here he is, 6.5 years old and hitting a huge milestone of childhood.
We had a really good follow up from ENT today. The surgery was successful, and his left ear is healing beautifully. We are a go for surgery on his right ear in March. We have a speech therapy eval in February and maybe just maybe we can get him on track for speech. We can tell a huge difference in speech and hearing just in the 2 weeks post first surgery. His left ear isn’t completely healed, so I look forward to seeing his progress.
I am choosing to not dwell on the what ifs with EOE. I do think he will end up with a G-tube eventually, just to let his esophagus heal enough to where we can start trialing foods. I don’t want to, but I also know that the EOE is making his ears worse, and we have to fix it. If that means a g-tube then that’s what it is. We already know he reacts to most all of the top 8 plus chicken and beef and bananas, so his diet would be extremely limited. Even if he’s not showing a ton of signs of EOE now, he will. As he gets older, the damage will continue and it will get worse. We will have to fix it.
For now, though, I am basking in the normalcy of childhood.
The journey continues
One thing that has never been unknown me is ear problems in my kids. Every single one of my children has had multiple ear infections, and 3 of them have had at least one set of tubes. Z has had 2 sets, and C, my poor C, has had 6 sets of tubes. Yes that is 6 sets of tubes. His problem isn’t chronic ear infections but thick ear glue (viscous fluid) that doesn’t move and a poorly shaped eustachian tube that doesn’t work. He is severely speech delayed and can’t hear. He has had his tonsils and adenoids removed to try to help with the ventilation to no avail.
We have seen various ENTs. He had a set of tubes placed when we lived in MS, and they lasted 2 months max. Even long lasting tubes don’t last for him. When I noticed his speech changing, and him reading lips and yelling, I knew we had started ear problems again so I made an appointment with a new ENT at Texas Children’s.
Here is a post I made on Facebook about his appointment:
“This is a hard update for us to digest. He is beyond tubes. Both of his ear drums (tympanic membranes) are collapsed so badly she couldn’t see the structures in his ears she needs to see. His ear drums are not strong enough to handle more tubes which is why tubes keep getting pushed out. Because of this, we have options of reconstructing his tympanic membranes, placing stints, or cutting into bone and rebuilding that way. All of the options are scary, but the best option (that she feels) is to take a piece of cartilage from the back of his ear, and to place it into his ear canal and use it as an ear drum. She will place an ear tube in there and then that will help equalize pressure and keep his ear drums healthy and allow them to strengthen. We can only do one ear at a time so we will start with the left ear. If we do both at the same time, he won’t be able to hear at all.
Now the really scary part, not like the first part wasn’t scary. The right ear wasn’t able to be seen fully and has fluid in it from some where. Yesterday the pedi thought he might have a perforation but the Ent today isn’t 100% sure. She needs to get a full look at his ear to know for sure. If it looks like the left side, we will go ahead and do the canaloplasty on the right ear when the left heals. If not, it means he has a cholesteatoma which requires an entirely different surgery and treatment plan.
Every option is scary and has risks. Some of those risks include hearing loss, including not doing anything (which isn’t an option). He is not a candidate for chiropractic adjustment, I asked her. She’s not against it but says it won’t work for him. She is also going to talk to the Eoe clinic (allergist/gi) to see if there’s any thing on their end they can do to help this to not keep happening.
Please pray for K and I for strength and peace to know we are making the right decision; for him to not be afraid and anxious and to understand why we are doing this; and for his team of doctors to have steady hands and full knowledge of everything.”
Scary right? Not news anyone wants to hear. It gets worse, though. He had a hearing test and his hearing is significantly impaired. He is a candidate for hearing aids with officially having moderate hearing loss. Anything more than moderate is beyond the help of traditional hearing aids to restore hearing to close to normal. Talk about a blow to the gut. Here I am, trying to stay on top of everything with his ears and health. I’ve taken him to the doctors. I’ve done everything they suggest and yet here we are talking about significant hearing loss and hearing aids.
We are, obviously, reeling from all of this news, and not quite sure what to do in regards to surgery. ENT and audiologist say it’s still on and the best chance he has. Then I started doing more research about EOE and ear problems. Someone on a EOE board Facebook pointed out a condition called Eosinophilic Otis Media, which is basically Eosinophils in your ear. C fits every symptom to a T. The thick fluid that doesn’t drain, the sudden onset, the not responding to normal treatments. He has EOE, so it wouldn’t be a stretch to think he has Eosinophils in other places especially since the throat is connected to his ears. However, with this, the surgery we are doing for C isn’t always 100% successful and sometimes even complete hearing loss is reported.
I haven’t called his ENT, yet, with this newfound knowledge. To be honest, I’m not quite sure how to approach it without seeming like I’m trying to tell her how to do her job. Regardless of the cause, we have to get his ears strong enough so he can hear properly. It’s just scary, not knowing what outcome faces your child. It’s scary not knowing if this is going to fix his ears. It’s scary not knowing if the worst will happen, and he will lose his hearing completely. This is where we have to have faith. We have to lean on God and His strength and know that He will be there for us whatever the outcome. That’s so much easier said than done, though, and I wish I could be 100% positive knowing we are making the right decisions.
It’s Been a bit…
In 2015 my husband was laid off from a very well paying job in the oil/gas industry. The layoff hit us like a ton of bricks and sent us reeling. A family member offered us a place to stay and was going to give us the house and land, no charge. The only stipulation was we had to move to a different state. We felt like God was opening a door for a change for us so we went. Long story short, after a year there we decided God was calling us back home. We had many pluses for staying where we were. My husband had a job. We had a house. We had friends, and we were in an excellent school system. However, we still felt like we needed to go home. We needed to be within an hour drive of Texas Children’s Hospital for C’s EOE. We needed to be around family to help when medical emergencies popped up, which they tend to do, but most importantly, we wanted to go home.
We took a leap of faith and packed everything into a U-haul in the pouring rain, moved 7 people back home and into a tiny 2 bedroom house with my mother in law. My husband had no job prospects lined up, but had some ideas of what he could do. We had a decent savings and by living with my MIL, saved money. Within 2 months, he had an amazing job opportunity, making much more than he was making before, we had a really nice rental house and a brand new vehicle. It’s funny how things fall into place when they’re supposed to.
Now it’s almost 2017, and I can look back with certainty and know moving back home was the right thing to do. We are still established patients with the EOE clinic at Texas Children’s and with his allergist. He is seeing a world class ENT to help with his ears. The kids are in a small town, great schools, and thriving. We are still having tons of medical problems and diagnosis and unknowns, but I feel more confident knowing we are seeing the doctors at Texas Children’s.
Merry Christmas and Happy New Year to everyone. I have more updates, but for now this will do.
It Started with a Quarter
“Mommy I swallowed money. A big money. With a bird.”
This was something that you never want to hear especially from your almost 4 year old. We were on day 4 of a move. We were stressed out and barely tolerating each other. Half of our stuff was in boxes in our old house. The other quarter was in boxes in our new house and the rest was packed in the van. We had truck parts and engines in a shoddy storage unit 30 minutes from the new house. We were in a state of disarray. The last thing we needed was an ER visit, so when I heard this come from the back seat of the van I cringed. Of course it had to happen. I called the pediatrician to find out what I should do, and they said to go to the ER for an X-ray to make sure it was in the stomach and not trapped somewhere.
An X-ray and lots of laughter and teasing from doctors later showed a metal object the size of a quarter in his stomach. They reassured us it would come out on its own, and we had nothing to worry about. They sent me home with a bunch of rubber gloves and orders to make sure it comes out. Spoiler alert: it never moved. 3 weeks and countless X-rays later, it was determined that the quarter was not coming out on its own, and it had been in there too long so removal via endoscopy was required. The endoscopy was scheduled the in the next few days at Texas Children’s Hospital.
I will never forget the day of the endoscopy. I had my youngest, Baby C, with me and my mother in law met me up there to help me with him. Before going back, the gastroenterologist had me sign consent for biopsy “just in case there was something that looked off but it wasn’t expected to be necessary.” The procedure took longer than they were expecting and when the doctor came out he said “I had to take biopsy of his esophagus. It was red and inflamed and didn’t look healthy. It’s not cancer, and it could just be food allergies, but it’s not normal.” My stomach dropped. I don’t remember anything else he said after that. He reassured me that C would be fine, but he was sending samples off to pathology.
Quarter stuck in his stomach
A week later I received a phone call from Texas Children’s GI department. They had a follow up appointment scheduled the next week because the biopsy results were back. The morning of the appointment, I naively rushed out of the house forgetting to eat breakfast because it was going to be a quick follow up appointment. There couldn’t be anything wrong with my baby. I was flustered and frustrated because it was a waste of time for us to be there. I just wanted the all clear and to be done.
Then the GI doctor walked in along with an allergist and dietician. He said “Your son has Eosinophilic Esophagitis. He has food allergies and will have to have endoscopies for the rest of his life. We can treat this with diet or steroids but he has to be treated.” Then he walked out and I was left with an allergist and a dietician. I was shell shocked.
My head was spinning. I was so confused. I remember the doctor’s words just sounding like Charlie Brown. “Wait what? What was going on? My son, what is this disease of which you speak? How? Why? WAIT STOP SOMEONE TALK TO ME! See ME as a mom. See HIM as a child! Don’t just view us as a diagnosis! ” This is what I kept thinking as they rushed us from allergist to testing to dietician. I got handouts of what I can’t feed my kid and a small list of what I could feed him. There were talks of GI tubes. He was getting skin prick testing done. I got handed Epi-Pens and quick lesson on how to administer one and strict orders to avoid peanuts. They scheduled patch testing. They were going to do what with raw food on my baby’s back?!? All of this was spinning around me, and I was still stuck trying to process. I feel like I am still trying to process to be honest. This was 2 years ago and we are still trying to grasp life with this.
Patch Test stayed on for 3 days. It’s used to identify other food allergens.
Our lives were forever changed all because of a quarter. Funny how that works.
Black Quarter removed from stomach
A Baker's Love 