3 year old vs Epipen

Patrick climbed. He climb so high he found the medicine basket. And in that basket there sat an epipen. And in the time it took me to change a diaper, Patrick injected himself with the epipen.
Hello ER trip to be monitored. And might I add… my local er said I shouldn’t have even bothered coming in,that they were harmless past the first fifteen minutes. Please don’t listen to people who say that. If you do accidentally inject yourself, seek medical care for observation. I passed what they said on to our allergist just to be sure I wasn’t the only ones to complain over that.

Anyway here is some photos of the hour long observation.

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Patrick is fine and learned a valuable lesson to not play with the epi pen!

Running out of foods!

You ever get the feeling that the universe just is playing a massive practical joke on you…. or at least wish it could be resolved with a simple “haha, just kidding!”

Thing one and thing two went to the allergist yesterday. We weren’t prepared for what hit us. Patrick had (key word being HAD) successfully reintroduced all his past food allergens with zero ill effects. Just recently however, he started having major eczema flares and puffing up, along with coughing….gagging…. upset bowels…¬† you know, all the stuff you don’t want see in an allergy kid. Because of the eczema, we decided to do a full environmental panel and the top 8 just in case.

Patrick came back positive to Dairy and Soy again, and added on to that now are eggs, beef, codfish, cats and dogs.

We will most likely scoping Patrick sometime this year, probably after school goes back for Gavin.

Gavin’s new full list of skin prick positive allergies are:

Corn, Eggs, Beef, Pork, Chicken, Turkey, Tuna, Codfish, Flounder, Shellfish, Soy, Wheat, Potato, Squash, Cucumber, Peanuts, Tree Nuts, Blueberries, All Citrus, Mustard, Vanilla, Strawberries, Apples, Tomatoes, Dairy, and Rice. Along with all trees, grasses, and molds.

We are moving away from skin pricks for now, and doing RAST today. We are on our way to UNC soon to see their GI team as well. I haven’t changed Gavins diet yet. We’re waiting to see what RAST shows us and we’ll go from there. All of these tests are just a generalized path though….they aren’t for sure answers. So without a GI willing to do more scopes than once a year….we won’t know where we stand.

Right now I’m trying to get someone to write a scrip. For Splash at least to help supplement, it not an elemental formula, but our ped. Wouldn’t do it and our allergist wants to wait until we see UNC to decide that.

We are waiting for a phone call now to tell us when we’ll make the drive to Chapel Hill.

Good news???? Allergist wants us to trial beef since it did come back negative this time, and last night he ate lasagna with success

One year later

Gavin completed his first year of school. We are no closer to resolving triggers than we were on diagnosis day. In fact things are worse. We are waiting to get in to UNC to hopefully get him help. His first year of school flew by. He did so well and the school was amazing with his known IgE allergies. I look forward to another year with them.

Patrick *sigh* he is a walking eczema patch, he is reacting recently to more unknown allergens as well. It is scary to hear your child tell you their mouth hurts. Along with this he is having textbook EoE symptoms too. But with a younger brother it worries me that he could just be imitating his older brother. Its just a watch and document expedition right now.

Both boys have a summer filled with waiting rooms but we are getting on a stable path I hope.

On a brighter note. May I introduce the newest member of our clan: Willow Katelyn.

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So far she has shown a sensitivity to dairy. She fits in pretty well with our ragtag team. She has completed our family and we are blessed to have her.

I hope to post a better update soon. Allergist on Monday

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Diagnosis!

We have it! It is official! Are you listening all you doctors that refused to see that my child was sick? 

Gavin has officially been diagnosed with Eosinophilic Esophagitis. 

I will update some more on what all that is. We are just on cloud nine this afternoon to have a name for what is wrong with my baby. 

We love you all. Thank you for the wonderful support you all have given us. 

Again I will be back soon, maybe later tonight, so fill you all in on what EoE is and what we are looking at as far as treatment. There isn’t a cure, EOE is a Chronic condition, so this is a life long issue we will have to work with. I’ve felt since I started this blog that this was what my son had and I’m so glad to finally have an answer.¬†

Scope Day

Quick photo showing what all is looked at during a scope
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We arrived at the hospital in Greenville at 7:15am and after waiting about an hour, we were called back. Once we got to the Pre-Op area things got fun. They had a wonderful Child-Life Specialist that really was just amazing. The first thing Gavin got to do was decorate his own mask.
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He picked out Thomas the Train stickers (of course) and Mountain Dew scented chapstick as his scent of choice. They put the scents in there to help the kids with keeping the masks on.

Then we were given tons of toys! We were third in line for our doctor so we had some time before it was our turn. Gavin loved the toys.
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While he played with the toys, I briefed his team on his allergies and the reasons why we were there. I helped them through all things Gavin related. All of their faces had the same look to pity and fear when thinking about his list of allergens. Fear I understand, but don’t pity my child…He doesn’t need pity, he needs support.

Once everyone was up to speed we sat there waiting and playing. We built so many lego towers and used the tools to knock them down. But we were having so much fun. After a little while I put on Disney and we kinda relaxed and enjoyed a down moment.
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When we became the next person in line the nurse came in and told us she would be giving Gavin some Versed to ease into being wheeled into the OR and having to put the mask on, because some kiddos don’t do well with that part. It took 10 minutes for the Versed to kick in and when it did he went from bubbly and playful to just there. I kinda hated seeing him so out of it. His eyes were twitchy, having a hard time focusing on anything. He just looked so out of it. But he needed that help too. Even with the Versed he cried as he left to the OR. But quickly calmed down and was an “angel” in there.
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I don’t have any pictures of Gavin in post-op, so I’ll try my best to paint the picture for you.

Before Gavin came out of the OR, his doctor came out to tell us how it went. She said he did very good and that over all she thinks they got what they needed.

The Good News aka “Healthy”
She said his stomach looked perfect, no hernias or any reason to be concerned with it.
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Picture of his stomach, as she was testing for a hernia. 

Also his Duodenum looked healthy too. She did take biopsies in both locations though, which was to be expected.
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Duodenum 

The Bad News aka the “Unhealthy”
His esophagus started out OK, but quickly went white.
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Entering his esophagus, you can look down and start seeing the white specks.
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Covered in White.

We are now waiting on the Path. report to see where he stands.We should know in 3-5 days how it looks.

Gavin Post-Op

When Gavin came out of the OR, they didn’t call us right away, but I watched him the whole time. He was awake as they wheeled him into the recovery curtain. When we got over there he was covered in wires and tubes. He had to be intubated for the scope (not everyone did but that is how we decided to proceed in case of a reaction to medication) While they had taken the tube out, his cheeks were bright red from the tape. His lips were pale white and super chapped as well. He had 3 heart leads on, an o2 sensor on his finger, a BP cuff and an IV in his foot. His poor foot, that looked like it hurt so badly. I could tell it was bothering him.

He couldn’t really talk when I got over to him, he was still coming to and getting a grasp on things. I scooted him over and climbed up in the bed with him to keep him calm. He started freaking out a little bit as he really came to. He said in a really wraspy voice, “Where Am I?” a few times, it really scared him because he didn’t remember leaving me because of the Versed. His throat was hurting him pretty badly, but his ankle where the IV was hurt him more.
We got him drinking some sprite soon after all that, and he kept it all down. He coughed a lot but that was b/c of the scope and the breathing tube. Our Post-Op nurse seemed really happy with how we was responding, and his vitals looked great so we were out of post-op over to the other side to get discharged. He finished off the can of sprite while we were over there…and as soon as he did he was trying to get off the bed. Our Nurse saw and got things ready for us to get out. However, when it was time to go… He didn’t want to leave because there were cool toys there!

We were told that clear liquid diet and lots of sleeping were to be expected for the rest of the day, given a sheet of things to expect and things we should be concerned about.

As we were being wheeled out of the hospital Gavin declared he wanted Pancakes. I wasn’t comfortable with that but he got some yogurt and fruit instead, then stole some french fries from Nana. He did great with them and has been eating well so far. No Spicy or Hard things though.

As for resting, that has been a hard thing to get him to do. As I type he is on the couch watching Thomas movies. Earlier though he ran after Patrick and started wheezing pretty badly, it actually worried me because he’s never had a wheezing fit like that, but it calmed down after a minute.

Overall today was a good day and I look forward to the Path. Report!

To Scope or not to scope…That is the question

This story started 3 days ago. A regular Friday at home with my boys. 

*Cell Phone goes off*

It’s the hospital. Great! We’ve been waiting on a call from them to tell us when our scope is.¬†

Wait what? THIS MONDAY???? My head starts to spin. All of a sudden we are overwhelmed with information. 

Our options ended up being Monday or they didn’t know when they could fit us in. Monday it is. We met all the criteria for the scope so we just went with it.¬†

This past weekend we focused on making sure Gavin ate only foods that could trigger a reaction. Knowing this was our best bet to get the reading we needed. It has been hard.

–Monday Morning–
Gavin’s been NPO since¬†midnight, but hasn’t ate or drank since 8:30pm Sunday. We have to be at the hospital by 7:30am. I wake up at 5:00 and toss and turn until 6:00. Get my kiddo ready and we are out the door by 6:30am.¬†

We get there about 7:15 and check in. The Nurse Practitioner comes in and has a piece of paper covered with his list of allergies. She has stars and circles around a few. She wants to know how severe his reactions are to Egg and Soy. Egg isn’t that bad, but Soy….. oh soy how I hate you.¬†

She asks if he has an epi pen. of course he has an epi pen. which scares her more. She starts talking about the drugs they’d use for sedation, and ruling different ones out because of concerns about his airway. We settle on one and all seems well.¬†

The nurse comes in with these Lidocaine patches for Gavin’s arms to numb the locations for the IV. He hated them because they heat up. We sat for 45 minutes waiting….and waiting….and waiting.

The NP comes back in. She tells us we can’t do the scope today. Says that she is uncomfortable with his list of allergies and the ability to keep him sedated enough to preform the scope as needed. Says something about how they “really should of had this list Friday so they could make better plans” I start getting mad. My¬†response¬†was “Well I found out at 4:00pm on Friday we would be here today”¬†

We have two choices at this point, neither give us the scope came for today. 
Option 1: a different sedation team that uses a different set of meds. Still carrying the risk that none of the meds they use are allergen free for him and they stress the importance of his airway. 

Option 2:¬†Anesthesia. We’d have to go to the OR, Gavin would be intubated, but all parties would be happy.¬†

I chose option 2. 

So now we wait again. I know we are on the schedule to be back at the¬†hospital¬†tomorrow….now we wait for time. The OR schedules patients Youngest to oldest, which means there is a high likelihood that we’d have to be there at 6:00am for a 7:30am scope.¬†

This day has been so stressing. I hope tomorrow goes well. We need this to go well. 

OH and Gavin had a topical reaction to the lidocaine patches. great news huh….. That’s not a fun thing to think about.¬†

Oh well…. Wish I had better news.¬†
-Jessica

Gavin’s Barium Study and general updates

We just got the results from Gavin’s study, so don’t think I was ignoring you, I just didn’t have any new news.¬†

During the test I got to watch everything as it was done. It was fascinating to see it work its way through his system like that. I had studied so much as to what to look for that could be bad. As I was watching I noted in my head, no reflux…. no structural obstructions…… emptying seems to be going well.¬†

Turns out… I was RIGHT!
Barium test went fantastic! Nothing bad on the report, he passed with flying colors! 

So now we are waiting on a phone call from the hospital to tell us the scope day. Which has to be done 3 months from now. We have started reintroducing foods, which has been rocky to say the least, but it has to be done. 

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Gavin turned FIVE yesterday, though his party is Saturday. He had a great day yesterday, but was mad he didn’t get cake haha. I told him he’ll get cake this weekend…but kiddo wants cake NOW. I’m so proud of my big little man. He has grown so much in¬†the¬†past year.¬†

Now we have one more update for you guys…and it’s kinda big

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-Jessica

July started with a Bang!

I know, it’s still the beginning of July, however I feel like I’m already so far in.¬†

Gavin and I had our date we had been looking forward to. see I’m leading with the happy news first!¬†

We went to watch the 4th of July Fireworks together. It’s our yearly tradition, and we had a wonderful time.¬†
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We have 7 days until out swallow/emptying study. I’m not nervous about this one. I’m just wanting to get it over with…kinda.

Today I found out something that really….really….REALLY sucks.
For Gavin’s scope I knew we had to have him on a PPI for 6 weeks prior, even though he’s only ever reacted to some of the ingredients in the past, He needs to be on them to rule out GERD during the scope. No big deal, right. Yea I could handle a 6 week wait for the scope.¬†

Now, though, it will *HAVE* to be a 3 month wait for the scope. And the reason will make you cringe a little.

Gavin has been on this elimination diet for a year and a half now. Well….we have to add every…single…thing back in. We have to get a base line scope on a full on diet. So for three months prior to the scope we have to deliberately give him the foods we have spent so much time avoiding. The Rational side of me knows it needs to be done, we have to get an¬†accurate¬†scope for diagnosis. But this other part of me is dying.¬†

Will he understand why we have to give him food that will make him hurt? Will he go back to refusing to eat period because all of a sudden ALL of his foods will be making him throw up? Will he blame me? How can I knowingly cause my baby boy, who has already been through SO much, harm?

I just don’t know where this year is going to end at for us. I hope that in the 5-ish months left in the year, we have a huge leap in how things are. I don’t want to end the year with no answers AGAIN. I can’t.

I know it’s¬†only¬†July…but soon it’ll be September, and school will be starting…then Halloween, Thanksgiving, Christmas… not to mention (since we are right on the coast) Hurricane Season is about to pick up… There are so many¬†obstacles¬†in the last part of the year when you look at trying to schedule something like this. I hope we can get a scope in this year. I am almost ready to pack a bag and take him up to Children’s Hospital of Philly and get the help we need to find out what is going on! I might end up doing that depending on how the rest of this month goes.¬†

Gavin is doing well, for the most part. We are just in limbo right now. :/