LIVING

With EoE, Allergies, Asthma and a G-Tube

Patch Removal – day three

The boys woke up and remembered today was the day they get their patches off. I woke up with some pretty strong anxiety about how bad it was going to hurt them. Even though a few came up in a few spots this stuff was like super glue.They have mom take it off one hour prior to the appointment because the tape can irritate their skin when you take it off. I had to tell Charlie 100 times that we would eat lunch then take them off and head to see the doctor. Noon rolls around and I ask who wants to go first. Charlie is so excited he wants his off first. So I give him a sucker and wedge him between my knees. I had him bend over one knee so that his skin would be pulled tight. I grab a corner of a patch and RIP! Charlie jumps up and starts crying. FUCK. 20 more to go. So Gage runs and gets Charlie’s yellow (blankie) and we go at it some more. Charlie jumps every time and starts crying more. I try to stay calm and try to convince him if he stays put we’ll get this done quick. Gage in the mean time has told me no way am I taking his off. UGH.  Then I hear Sponge bob. I hate that little yellow man but he might be my life saver in this instance. So we move to the family room. I sit on the coffee table and get Charlie between my knees again. He can see the tv, has his yellow and I have promised another sucker when we’re done. Every single patch hurts him. Some spots of your back are more sensitive which made it hurt worse. This was horrible. Gage still telling me “no way, my not gonna do it.” We approach the last 5 and do a countdown. DONE! With a huge sigh I looked at Charlie’s poor little back.  Having never done this before I had no idea what to look for. I did see a few hives but it really didn’t look that bad. Onto Gage.

Poor Gage. After watching his big brother try to be tough he just didn’t want to do it. So I let him pick out a sucker and we went to the family room where Sponge Bob was still laughing his annoying laugh. I told Gage to get his froggy (blankie) but he told me no, he was tough. Aww. So between my knees he goes. I rip the first one off and he sort of giggles a nervous laugh and again says “I tough”. I asked if he wanted froggy and he said no, so on we went. He squirmed, winced and grunted but never shed a tear. My 3-year-old is TOUGH! Apparently his skin is more sensitive to the tape. Just made me want to cry when we were done, they were brave and let me do it. I was just glad I didn’t have to pin them down and have them screaming. They both did it and it was over, time to head to our appointment.

Since it took a tad longer than I had expected we were running late. I got them in the car and just grabbed Gage’s tennis shoes. When we got to the hospital I went to put on his tennis shoes and I had grabbed his left and Charlie’s left tennis shoe. DAMN IT! Luckily we had brought the girl boots to return them on our way home. So he got to wear them.

We got right in and the nurse had them put on gowns. I love how cute they are in them. Circumstances always suck when they wear them though. The doctor comes in shortly after we have our gowns on and the boys both immediately ask if they’re going to get needles. Oh what have I done to them. The anxiety they must feel each time I say we’re going to the doctor. The doctor and I both assure them no needles today. So he takes a look at their backs then explains to me what he was looking for. He also informed me that he reads their backs at 48 and 72 hours. So still no baths tonight. I didn’t really pay a whole lot of attention to what he found because he said it could all change by tomorrow. So the boys each get stickers and we’re done for the day! Off to the boot store.

We take the boots in and I explain how I had accidentaly bought girl boots. The good ol’ country folk working there got a good laugh and told us to go find another pair. So as I’m on my knees looking at pre-schooler boots a man approaches me and asked if I needed help. Um, yes, as I’m 9 months pregnant crawling around on a store floor. I told him we needed the widest pair of boots he had. He told me it was my lucky day that he had just gotten in a load of wide width kids boots! Said they had never had kids boots in widths before, I told him I already knew that. So he went and got us a pair. They’re western boots with the pointed toe. Gage slipped them on and LOVED them. He was so excited. So we took them up to the counter and they were $10 cheaper than the other pair we had. Turned out to be a great day after all!                                   That night I again stood them in the tub and gave them a sponge bath. I then laid them on the counter and washed their hair in the sink  along with washing their face. All clean and ready for our last day!

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | Leave a comment

Our First Clinic

When we first discovered the boys had Eosinophilic Esophagitis we debated on going to the specialty clinic in Cincinnati. Once we found trust in our allergist and GI doctor we changed our minds. Since moving to a new state and finding new doctors I quickly realized I did not like our new allergist. While on the phone with one of the nurses she had mentioned that maybe we should go see the specialty clinic group. Having a group so close we decided we would give it a shot.

The specialty group is an allergist, GI and nutritionist that all work together. They actually sit down together and discuss each patient.

It took 3 months for us to get in and today was our first day. The papers said it would be a 2-1/2 hr appointment. We would review their history and what was to come, along with patch testing. Patch testing intrigued me. We’ve only done blood work and the ever dreaded prick testing.

So with a bag full of entertainment, snacks and two thick stacks of files we headed off. It takes an hour to get there so we ate lunch in the car. Strapped in and nothing to do, that’s when they eat best! We arrive and head right in. They must have been on top of things. We learned Charlie is finally gaining weight, he’s up to 44lbs now!  Gage is still putting on some pounds, he’s an ounce away from 36lbs.  With only 4″ between them I’m wondering how soon Gage will catch up! The nurse leads us to our room where another one comes in to get our computer file pulled up. We only had to wait about 10 min to meet with the GI doctor. I was impressed things were moving along. I had a timeline of the boys reactions, allergy testing and scopes all written up. This made things so easy. We covered all angles of their allergies, EoE, possibly scope plan and their diets. She quickly learned the boys are not the typical EoE patients as they don’t have the symptoms. The only proof of the disease is their scopes. Typical kids have lots of tummy troubles, heartburn, diarrhea, trouble swallowing…etc. So with that said we’ll approach things with caution and have our game plan on Thursday. After we went over everything came time for the patch testing.  Patch testing is taking an actual piece of food, mashing it up and putting it on a small disc. The disc is in the center of a square piece of medical tape which is then placed on their backs. They wear them for 48 hours. Charlie was nervous and upset at first, the unknown was going to be placed on his back where he had been stabbed with a stupid little caterpillar in the past. Once he realized it was only tape and didn’t hurt he was just fine. Gage’s reaction was to immediately tell me he would not be doing it too. With the promise of  a sucker when he was done Gage did get his patches on. Since Gage has anaphylactic reactions to egg and recently had blisters around his mouth from peas we avoided doing those two foods. So now I have two boys with tape all over their back that cannot come off until Wednesday. This should be interesting. No bath or shower, no getting sweaty and no taking them off!

We go back on Wednesday and remove the patches and read the results. It’s suppose to be an in and out appointment. Wednesday afternoon/evening the three doctors meet and go over a plan for the boys. Thursday afternoon we go back and go over things.

On top of having his back all taped up Gage came down with yet another cold on Friday. I’m guessing from his first week at pre-school. By Sunday he was wheezing and today he keeps going down hill. I have called in his oral steroid because the albuterol in the nebulizer just doesn’t seem to be helping things this time.

September 12, 2011 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , | Leave a comment

EoE, It’s in the family

I had mentioned not too long ago my niece Ellie was recently diagnosed with Eoe. Here is her story written by her mom.

My daughter, Ellie, was diagnesed in mid-July, at age 2, with EoE.  Her diagnosis suprised me because she does not suffer from the “typical” EoE symptoms.  Ellie was born with a cleft soft palate.  Early on she was on reflux medicine because she constantly spit up; however, once she had her repair surgery, the spitting up stopped.  Ellie has always been a good eater, especially compared to my older daughter.  At 14 months, , Ellie had her first, and only, “true” allergic reaction.  After one lick of cake batter, the area around her mouth broke out with hives.  I had her allergy tested for the top eight.  She reacted to eggs and peanuts. For reasons, I cannot remember, I felt like she also had a milk allergy; however the skin test came back negative.  By testing time, Ellie had already started soy milk and liked it so much, I never switched her back. 
Ellie has never had a solid bowel movement.  Her butt is and always has been red, had sores, and irritable.  Though she was always a 12 hour night time sleeper, starting around Februrary of this year, she began waking several times a night.  Around this time, too, Ellie’s eczema, which we have battled since infancy, became a permanent fixture.  I have tried four steroid topical creams but none have worked.  Ellie has asthma, but it is only noticeable when she is sick.  She is a thriving child that does not choke, vomit, or ever appear to be in pain. 
So why have her go through an endoscopy and colonoscopy?  I had been telling her ENT that I believed, as a mom, that she has more allergies because of her constant diarrhea, sores, etc.  Of course, I mentioned that my brother and two nephews have EoE.  My concern was that she had EG, EGE, or EC, but not EoE.  After being referred to a local GI and being scoped, I learned that I was wrong, Ellie does have EoE.
After her diagnosis, she went egg, peanut, nut, wheat and milk free.  Blood work indicated a wheat and milk allergy, but the skin test did not confirm.  No other allergies were confirmed with a skin test.  Since taking her off wheat and milk did not clear her eczema, last week I removed soy from her diet.  To my excitement, her eczema has improved tremendously. 
I am still confused since she is not testing positive for many food allergies, but I am hoping to get a greater clarification when I meet with the doctors at Cincinnati’s Center for Eosinophilic Disorders (CCED) in September.
When Tina called me with Ellie’s news I was so upset for them. It angers me that kids are dealing with this and there is no cure or clear answers for anyone yet. We definitely know that EoE is in our genes. Leads me to wonder what will this disease do when my boys have kids. Tina doesn’t have EoE but could she be a carrier of the gene like women do for colorblindness. Will Tina’s other daughter carry the gene? There are a thousand questions and I hope someday soon we get some answers.
Thank you Ellie, and Tina, for sharing.

August 16, 2011 Posted by | LIVING | , , , , , , , , , , , , , , , , | Leave a comment

Negative Corn

Blood results in and Dr says corn is negative. Rice is still a low 1.2 and oats is a 1. With both of those numbers being low and I’ve never seen a reaction we keep him on them. I argued about the corn and the Dr said we can do a test in office to see how he reacts to corn. He doesn’t want me to take him off corn because there isn’t a lot left with out it. I already know this. Dr says feed him corn, I will feed him corn.

So today at lunch I pull out a jar of baby food that is a safe veggie blend for him with corn. It’s all organic too. An hour later, diarrhea. Three hours later his bottom is starting to get inflamed again. I also gave him a popsicle (corn syrup) and his face flared up some more. It hasn’t gone away since this new stuff popped up. So Dr. still don’t think it can’t be corn. *gasp* I guess I have some anger. I told my husband tonight that I knew when Gage was allergic to soy and the Dr doubted me. BOOM big time allergic. I’m pretty sure I’m right this time too.

Not the most flattering picture of him but you can see how’s he broke out. It’s not eczema. It starts out as little dots, like on his forehead. Around his mouth the dots are becoming more dense in certain areas. I was told they are more environmental. He really doesn’t have any environmental allergies. Two came back positive: Russian Thistle and (get this) COCKROACHES! Who in the world is allergic to cockroaches? 

Hopefully the GI Dr can give me some more insight as to what’s going on. I’m very nervous now about rice and oats because who knows what’s going to make his throat swell more.

May 11, 2010 Posted by | Gage's allergies | , , , , , , , , , , | Leave a comment

Amish Allergies

So I grew up in a small village with lots of Amish surrounding us. I’m talking, no electric, horse buggies, strict Amish. I had a thought the other day. The Amish grow up farming, always outside, around animals, hay, all the pollen, do they have allergies? Then I wondered, do they have food allergies?  I’m so curious about this. If they don’t, what in the world are we doing different?

My mom is going to ask a local Amish lady what she knows of allergies.

I know of a lady in Italy that was just sort of “diagnosed” with EE and they don’t know enough about it to help her. So is EE only mainly in the United States? What is going on?!  I’ve been told and have read that they’re thinking we are getting more allergies because of immunity shots. Our body has nothing to fight against so it’s creating these allergies. Dagg-on-it. I want my kids healthy and believe in vaccines but these food allergies are really getting us down.

So Amish – what’s your secret? No shots right? Are vaccines common in other countries? I know they are trying to link autism to vaccines but I’m really wondering if vaccines are the cause of rising allergies.

May 3, 2010 Posted by | daily life | , , , , , , , , , , | Leave a comment

Poor itchy Gage

This morning Gage woke up and had a few more dots. By noon he was itching like crazy and I had spoken to the on call allergist. Keep Benadryl and allergy meds in him. He will be tired but it should keep him comfortable. So we did that along with limiting his diet down to a few single foods. He had some corn at snack and a hive popped up beside his mouth. OH CRAP! Not corn. By evening he was feeling much better. Not itching as much. He didn’t get anymore hives. We’ll see what tomorrow brings. Monday he will go to the allergist and we’ll get this figured out!

My mommy instinct says it’s either the prevacid he just started taking, chocolate he had a lot of this week, corn, rice or the grass. I’m really praying its chocolate and not something major like the corn or rice!

May 1, 2010 Posted by | Gage's allergies | , , , , , , , , , , | Leave a comment

Pox or Hives

Over the past few days Gage has developed some dots on his head, face, behind his ears, under his chin… At first I thought they were hives. They looked like hives. Thing is though they don’t go away. This is about day 4 that I’ve noticed them. I called his allergist yesterday and they said “keep an eye on him (duh) and give him Benadryl” So that’s what I’m doing. Then last night I noticed the two behind his ears looked like they had fluid in them and thought oh no chicken pox! He had the shot so I didn’t know how he would still get it. This morning he only had one more, on the top of his head and still has the others. No more fluid in the ones behind his ears though. I’ve never had it happen where the hives stick around for a while. What is going on!

To be continued………

April 30, 2010 Posted by | Gage's allergies | , , , , , , | Leave a comment

A little Gage introduction

Gage is my latest creation.  I would best describe him now as shy, strong, loving, mellow and a great dancer.

He started with his food allergy issues before we even realized what was going on. Around 8-9 months when I started some table foods he would choke and puke everyday. I mentioned it to the pediatrician and we wrote it off as a sensitive gag reflux. A few months went by and he was still vomiting. But now it would be 15 – 30 minutes after a meal. He would also become horse. Knowing what I know now, we’re so lucky he never had an anaphylactic episode. My husbands food allergies are so severe that he instantly becomes covered in hives and basically has an anaphylactic episode if he eats the tiniest food allergen. So we didn’t really think of what was happening to Gage as being food allergies. Charlie had a few when he was little but he would get hives. So again I mention it to the pediatrician and he says we’ll watch him and we may have to check a valve or something. Well I was keeping an eye on the foods he was puking up and it seemed to be cheeses and things with egg. So I made the dreaded allergist appointment. This was in the fall of 2009. We didn’t do a full panel on Gage because I thought I could tell what it was and we did a few other highly known allergies. POSITIVE! I didn’t cry because at that point it was only egg, nuts, peas, all fish and wheat. No biggie I can handle that. Actually peas were negative but I had seen him get a few hives while eating them. We did a control test and he broke out in hives eating only 1/3 of a pea. So no peas. His wheat count was low so he was still getting that in small doses.

A few months later he had a horrible reaction at dinner and he didn’t have anything in the meal that had shown a positive reaction so back we went. I insisted it was soy, the allergist questioned it but tested it anyways  – BINGO! What is it they always say? A mom knows hers kids best or something like that. So we added soy to the list.

Another month went by and he started getting hives after more meals. So back to the allergist, this time we did a full panel. I actually laughed when the allergist told me all the positives. I guess that was how I kept myself from crying; egg, peas, soy, wheat, fish, all nuts, beef, all potatoes, rice, celery, mustard and sesame. What is this kid going to eat.

I can honestly say at this point I have no longer enjoyed grocery shopping. Those first few trips I went alone trying to find anything for him to eat. I do need to mention we kept him on rice because it was low and he had never shown a reaction. Still to this day I find myself almost in tears looking at certain kid foods feeling bad that he can’t eat it. I then struggle because his brother can, so do I buy it and sneak it to him? Should he miss out too? It’s these sort of thoughts and things that bother me the most. Gage is actually fine and doesn’t know any different. He’s healthy and huge – always been on the 75% for his growth.

After his last allergist appointment he mentioned EE to me and said let’s get him tested for it, it’s something that can be treated with medicine. Oh well that sounds great! Let’s do it. I hate the thought of him on meds all the time but if it helps him eat let’s check it out!  BUZZ WRONG ANSWER  I went home and did a little google search. Not really what I was expecting. Made the GI appointment and made my list of questions.

At the GI appointment she walked in, we spoke a little, she looked at Gage and said “He really doesn’t look like he has EE. However, he does have a lot of strange food allergies. We can scope him now or we might be scoping him down the road when he comes in with something stuck in his throat.” She was really positive that he didn’t have it. My husband and I decided let’s go ahead and scope him now because we’re going to have to do it at some point anyways. We had Gage scoped the end of January this year. Sure enough his little esophagus was so swollen the Dr was surprised he could even swallow food.

April 26, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , | Leave a comment

   

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