Archives for category: Food Allergy

Life since having Alexander has never been boring! Today I rushed him to the 45 minute window of walk-in hours at our pediatrician. Over the weekend he had a fever that bounced around. He has been irritable, not eating, and barely drinking. Yesterday the fever was totally gone! Except he was covered in a rash on his torso and kept putting his finger in his ear. I called about the rash, they said that was normal after a fever. By nighttime it had spread to his pelvis. This morning the rash was worse and had spread to his face. When I went into his room his finger was in his ear.

I got them both up, dressed, fed, and out the door in record time. I am talking about 20 minutes here! That is unheard of.

He was cleared of having an ear infection! Phewf. However, he does have Roseola. Another virus. He keeps getting slammed with one after the other. On top of that he still has his chronic diarrhea. It flared up a bit yesterday through today.

Tomorrow he has his GI appointment. Our pediatrician did not want him to wait until the end of April to see one, so she called the GI office and had them figure out a way to see us sooner.

I would be lying if I said that I am not stressed out. I would be lying if I said I wasn’t totally exhausted. I would be lying if I said I wasn’t in a constant state of worry. I would be lying if I said that I didn’t feel anxious every time I went to check his diaper. I would be lying if I said I sleep soundly at night. I don’t. Not one bit. I would be lying if I said that this hasn’t started to take a toll on me physically. Last week I was nauseated for 4 days straight. Terrible nausea that barely allowed me to get off the couch. I forced myself to, because I had no choice, but I was barely able to be upright. It took all of my strength.

I have a hard time asking for help. Maybe I am stubborn. Maybe I am too proud. Maybe I don’t want to bother other people. Maybe I am a control freak. I think it is all of those combined. I have been dealing with 99% of Alexander’s medical appointments, symptoms, issues, hysterical moments, record keeping, etc all by myself. My husband is insanely busy with his company. It is in a good way. Growth! But it just so happens to coincide with Alexander going through this rough patch in his health. Life works out that way sometimes. Good and bad together. Nothing is ever truly perfect. Tomorrow my mom is coming to the GI appointment with me. I feel like a slight amount has been lifted off of my shoulders. Even if it means she takes Jackson into the waiting room because he is getting squirrelly from being at the 1203043 appointment of his baby brother’s.

This is hard on him too. He breaks down crying anytime Alex is hysterical and upset. He tries his best to always make him laugh. He just wants his little brother to be happy. Today at the pediatrician he started getting upset before she even performed an exam on Alex because  Jackson knew Alex wouldn’t like it and was going to cry.

I would be lying if I said this hasn’t been hard on all of us.

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Bros

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This pretty much sums up how he has felt since Friday 😦 

 

I love someone rare

It is Leap Day. It is also Rare Disease Day. My sweet little boy is the reason I am talking about this day. This sweet little boy has kept me on my toes since I was pregnant with him. He is always up to something and giving me some kind of scare. From being admitted at 35 weeks pregnant due to low amniotic fluid and possible very early induction to save him, to an umbilical cord that took a wrong turn and took months to close up and heal, to FPIES, to an ER visit yesterday morning because he got his sweet chubby thigh stuck in the crib all night and it was covered in welts, swollen, stiff, and he limped. I rarely have a dull  moment with him.

He is so full of life. He is very brave. I do not see him hesitate in life very often. If he sees something he wants to do, he will 99% of the time go for it. He loves to make me laugh. He loves to feed people or share his food with them. His smile is contagious. I dare you to see him smile and try to keep a smile off of your face. He is a fierce momma’s boy. I say this a lot, but it is true. I am always holding or snuggling him. Did you know, I literally get a standing ovation every time I walk into a room and he sees me. He stands up and claps, cheesy grin plastered across his sweet face. He loves his big brother so much. The way he watches Jackson makes my heart melt. Jackson had his 5 year vaccinations last week and completely freaked out. Alex had been fine mischievously walking around the exam room up until that point. As fat tears fell on my arms while I held Jackson, Alexander walked up, watching. I slowly watched his face transform from curiosity, to concern, to outright devastation, as he too began to sob. I love to hear him say Dada. If I just mention the word Daddy he lights up and says Dada, DA! DADA! That is his biggest buddy. He tries so hard to keep up with the two big guys around here, when they play catch or when they wrestle. Which is frequently to both things.

Then there are the moments where he does scare me because things seem to happen to him at a higher rate than did Jackson. Maybe it is because I am so hyper aware of all things involving him that I notice every small tiny deviation from normal patterns. Or maybe, things just do happen more frequently. It is likely a combination of both. We have had even more situations than I mentioned earlier. I really glossed over things there. I glossed over how scary it was when he was first having FPIES reactions and we had no clue what was happening. I will never forget when his tiny body went into shock and what he looked like. I will never forget the fact that when he was born, he didn’t cry. The cord was wrapped around his neck and the nurse took what seemed like an hour to get him breathing. It wasn’t an hour, it was probably a few seconds, but in that moment, having given birth previously, it seemed like an eternity.

His may not be the most dramatic rare disease. His may not even be the most dramatic case of FPIES. I am so incredibly thankful for that. Every day I am thankful that when it comes down to it, so far, he has just scared us with things that we are capable of managing in a healthy way. It doesn’t take away from the fact that these things seem to happen to him or that he does in fact have FPIES and is IgE allergic to bananas. Most tests came back negative, that one did not. We are still waiting on a few more results, including avocado and kiwi. I can manage these things. I can keep him safe. I am thankful that every day I get to see that toothy silly grin and those big blue eyes and that raspy voice say mom mom mama mom mama mama. There may be moments where I am utterly exhausted or feeling overwhelmed with doctor and hospital visits or just from worry or from regular mom stress, but all it usually takes is a hug and snuggle into my neck to bring me back down. And if I am lucky, big brother Jackson is telling me I am the most important thing in the world, even more important than monster trucks, and you know how much I like those mommy!

Happy Rare Disease Day 2016!

 

 

Elizabeth Stone has said “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” I have known this for the last 5 years, since Jackson was born. It seems to be resonating even more this week. We are on day 11 of diarrhea with Alexander. The pediatrician wanted to see him yesterday when I spoke to her about it. It had been far too many days for her to be comfortable with just riding it out.

In the office he happened to poop, which was actually helpful. Unfortunately, they found black blood in the diaper. Have you ever had moments in your life where time kind of stands still? I would describe it as how they portray it in a movie. A monumental moment in the storyline, where the character seems to move yet the world around them is in slow motion or totally frozen. I have now had two of those moments in my life. This was the second one. I did not expect her to come back and say that. She was gone less than 5 minutes. Alex was trying to tear apart my diaper bag and I was texting my husband back. She sat down to explain this to me. She went through the list of possibilities and what we are doing moving forward. I heard every word, but the world around me seemed to slow down. The smile I had on my face when she walked in quickly vanished. I was oddly aware of the motion of my face changing.

Today, the diarrhea is actually worse than it was yesterday. It has kind of gone back and forth over the past 11 days. He is unhappy at times. Large chunky tears rolling down his squishy plush cheeks. I wipe them away and kiss his sweet little face. I hug him and he snuggles his face into the right side of my neck and shoulder.

He is his normal mischievous self at times. Trying to grab his brother’s robot toy. Tearing apart the cabinet in my master bathroom. Rearranging all of my makeup, serums, and creams. Smiling his big toothy smile as he walks up with his arms out and says “mama mama” He is always a momma’s boy.

This morning I dropped off the additional vials for them to run labs. Now we wait. Now we focus on keeping him hydrated, avoiding an ER visit if we can. Now we hug and kiss him. Now we watch him play as our hearts are in our throats. Now I sleep restlessly and wake often. Now I scrub things around the house because sometimes that is what I do when I am particularly anxious. Now I try to remember that Jackson is having a hard time adjusting to the new way of life around here. Now I try to explain to him that he is important and special too. Now I try to give him extra attention. Now I wonder, where does all of the time go during the day? There is a lot to think of at every moment.

My heart walks outside of my body. Split in half. Each boy carrying a piece with them. The pieces made of porcelain. Alexander’s piece seems to be particularly fragile at the moment. Or maybe it is the carrier of that piece that is fragile. Regardless, my heart has not been my own in a long time. Half a decade. My heart belongs to them and all I can do is sit back and hope with all hope that it doesn’t get even one little chip on it. Knowing full well, the world doesn’t actually work that way. It will get battered and bruised as I sit here with open arms waiting to welcome the halves back whenever they need me.

Last Thursday we received a final diagnosis for some issues our little guy has been having his entire life. Long story short he has Food-Protein Induced Enterocolitis Syndrome or F-PIES. In simple terms it is a food allergy affecting the GI tract. You can check out that link for a ton more information. He also has a blood test coming up next week to check for a ton of other food allergies. We will have some more information on those in the next coming weeks.

I have known something was off with him since he was born. He has always been a puker. He had a hard time gaining weight. Once we started introducing solid foods and eventually dairy milk (he seems to be lactose intolerant on top of F-PIES), his vomiting and diarrhea continued. The offending foods so far have been bananas and avocados. If he eats them, it never fails, a couple hours later is his vomiting profusely. One time he got so dehydrated and in distress that I rushed him to the ER.

From what I have been reading over the last 5 days, my breastmilk likely was not helping him. I say this because I live to eat bananas. Or at least I did. They are dead to me now. But I would freeze plates of them and eat them like chips. I would eat them in my smoothies every.single.day. Every day that baby was being exposed to something that made him ill. I had no idea.

I did bring this up on multiple occasions. I showed up to doctor’s appointments with a list of symptoms and incidents. Before he was on solids, because he was still happy and not seemingly in pain after throwing up it was dismissed as reflux. However, not a serious reflux so he never needed medication. He would just outgrow it. I was referred to some allergists by our pediatrician after the multiple fruit incidents. We researched them and picked one. When I called, they refused to see him because he was under 1. Since we wanted to see her and everyone else said they really didn’t think it was an allergy because he was only throwing up etc, we waited. I feel awful.

When we did finally see her, we hated her. The whole experience was miserable. I won’t go into individual details, but it was a bad time for all four of us. Then she had no idea about FPIES but thought it could sound like that. She left the room and literally Googled it. She printed what she found and gave it to us. Promising to call us back that week. She didn’t call back until a week later. We went home and found the exact information she gave us on our very first Google search. We were not happy. I called my pediatrician and explained the potential diagnosis. It then clicked with her that she has a couple patients with that and has another allergist who works with them.

I saw him last week. He was amazing. He is very versed in F-PIES. He went through the whole process with me. We scheduled the blood tests. He prescribed EPI Pens, that I now have to carry at all times. He needs them in case he gets to the point of dehydration he got to before the one ER visit. It won’t stop the allergic reaction, but it will bring his blood pressure back up and prevent a more serious situation that comes from that kind of distress on the body. We were given a letter to give to the paramedics and ER so they understand what this rare syndrome is. As we have learned, many doctors are not familiar with it at all.

The last five days have been incredibly reflective for me. I will literally never forgive myself for not figuring this out earlier. I will never forgive myself for eating the very food that makes him so ill and then continue to breastfeed. I will never forgive myself for his struggle to grow during his first year. I feel just terrible. I feel terrible that I didn’t demand more answers. I feel awful that I just accepted the fact that this one allergist didn’t see babies under 1. Why didn’t I pursue another allergist who WOULD see him? Why did I want to see her so badly based on silly online reviews? Why did I just accept his throwing up as reflux? Why didn’t I Google more and more and more? I get a lot of comments for how much I Google symptoms. I always hear that I shouldn’t freak out because of what I had found on Google. What if I had searched a few more terms and come across F-PIES when he was 6 months old? What if? What if? What if? Mom guilt, it is for real. I have never quite experienced it like I have in the last 5 days. I have felt guilty over other things, especially with balancing two kids. They are both playing around me as I type this. Jackson trying to show me some monster truck tricks and Alexander is raiding the pantry. I have fed, played with, read to, and bathed them already today. It is not even 10, so a few minutes to get this off my chest is not a big deal, yet I still feel kind of guilty. But nothing about how I feel over the first entire year of my sweet baby boy’s life. Maybe the next 5 days will be easier….

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