Christmas Challenge

Christmas this year was exhausting. Last year wasn’t so bad because Kip got to taste food for the first time, so it was strictly baby food we knew was dairy-free – like pureed beans and baby cereal. Now, he can eat with those chompers of his and can eat regular table food.

What’s nice about cooking your own food is that you know what you put into it. When you eat at relatives houses, you have no idea. Things that you wouldn’t think they have added butter or margarine to, they have. I was on edge still since the daycare Epi-pen incident, so eating at places with unknown food additives just added to it. We got by pretty good until we ate at my husband’s grandmothers. Little did we know, she had put butter in the peas…. the PEAS for goodness sake. He had broken out on his chest and all around his mouth again… and getting him to take Benedryl was like fighting a cat to take a bath. We finally got it into him, and had to repeat the dose again later, but he was okay after that.

Constantly being on edge and having to be so careful is nervewracking. Not only am I constantly facing struggles with my own care 24×7, but his as well… especially now that he’s also showing signs of swelling when he comes in contact with dairy. But that’s our life. I wouldn’t trade him for the world. I’ll do any and every thing possible to keep him safe and healthy.

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I Never Dreamed…

As a diabetic, it’s not weird to me for shots to be given. It’s not strange to be in an emergency situation where glucose is needed and to keep other people calm, because, after all, I’m the one low and can tell when panic is needed and when it’s not (mostly). It’s not odd for me to have to tell people, “Okay, I need you to call this number and tell them I’m (insert situation – low, high, etc).

But when it’s your kid… your 16 1/2 month old baby… who has just barely had another child touch their cheese-y finger to his mouth… and his normally tiny, thin lips are the size of your own pinky and his face is blotchy and he’s panicked…

Used Epi Pen

There’s no time to think. Panic rushes through your own heart as you try desperately to call someone – anyone – to meet you at the ER to help you keep your own sanity. You take open the one thing you never wanted to use, rip off his outfit and place it in his leg to try to stop the allergy attack.

Yesterday was the first day we had to use the Epi pen on Kip. It was something I wanted to be prepared for, but never use. It’s sort of like the diabetic’s Glucagon kit – you want to have it on hand, but hope to goodness it expires. It’s money that you want to have to waste and not value that you’ve spent.

Image

Sleeping after the Benedryl fully kicked in.

I am so glad that I pushed for him to be seen by an allergist a couple of months ago. If not, we wouldn’t have been prepared because our pediatrician never prescribed an Epi pen. He is better now, but I’m still worried. I’m still on guard. The ER doctor prescribed prednisone and Benedryl for him to take over the next couple of days. I asked why, and he said that a lot of times after the initial dose wears off, the patient can still have a re-reaction because of the allergen still being in their system, and you have to suppress it until the allergen wears off or works it’s way through their system. By this morning, the chance is little, but I still couldn’t help but worry… and be relieved when I heard him moving around to wake up this morning. I worried as I dropped him off at day care… they’ve taken steps there now that they’ve seen how reactive he can be. They even asked for a permission slip to give him the Epi pen and asked for a spare one to keep there in case they had to give it to him before I could get there. Apparently this sadly was what it took for them to realize it’s more than just a rash and I’m more than just being whiny about the way they need to take care of him.

And here we are – right at Christmas. Our Christmas holiday feasting begins Saturday, and because of this, I’ll have to be on my guard even more so. No “yeah, let’s try it and see if he likes it” or “yeah, we can let him try and and just give him some Benedryl if it happens to be made with some milk…” No. Strictly foods that I know without a doubt are “safe” foods for him. With his system already compromised, I don’t want to add even the littlest nano-particle into the mix.

Itchy

Since Kip turned one, the pediatrician wanted us to try different forms of dairy to see if he was possibly out-growing his allergy. He has, after all, been able to handle baked goods pretty well without hardly any sign of allergy.

Last night, he was eyeing my sandwich, which included a slice of provolone cheese. So, I let him try it. He didn’t vomit or cough so we thought that maybe we were in the clear since this had been the only sign lately that he wouldn’t be able to have whatever the food was you had just given him. It’s been months since he actually had a break-out of any sort in reaction to milk products. This was around 8pm.

He went to sleep and I put him in his crib around 9-ish. I didn’t think to check him for a possible breakout or anything. By 10pm, he was stirring in his crib. We thought he may be just rolling and wanting his paci, so we went in 3 different times to try to settle him back down.
The last time I went in, he was scratching his stomach in his sleep. It hit me. I pulled up his shirt and there it was – red, inflamed, swollen bumps everywhere – he looked like he had been attacked by ants or something.
I immediately pulled him out of the crib, turned on the light and looked… I went into panic mode. He was so covered in hives that it looked as if he had been burned from the knees up in patches as big as my hand. It was the worst I had ever seen on him.
We couldnt get him to stop scratching. I hurriedly covered him in his eczema itch cream and we changed him into a looser shirt and left his diaper off so his skin could cool down. He was breathing fine, but he was just screaming because he was so uncomfortable.
We called the pediatrician who told us how much antihistamine to give him and told us to keep an eye on him. By 12, he was resting again and his skin was beginning to cool down under the fans. We were able to put him back to bed, and he stayed there the rest of the night.
I cried. I cried so much. This was my baby. I gave him the cheese that caused this reaction. True, I didn’t know this would happen or how severe the reaction would be, but even today I cannot get the guilt out of my mind.
He was pretty well cleared up this morning when I left him at day care. I have to go back later to check on him and give him another dose of medicine, but he looked and acted so much better.
I don’t know if I’ll be trying “milk” products again for a long while. I can’t mentally take the guilt of seeing him like that.

Learning

Kip has been on all sorts of antibiotics lately for recurring ear infections. One new one gave us cause for concern as the pharmacist gave us a warning that a lot of people are allergic to one of the main ingredients of the antibiotic. So, with hesitation, I gave it to him and watched him for a reaction – which there was none – and sent him off to school.

I dropped by later to see how he was and to drop off some extra diapers for him. A couple of the nursery workers made mention that he had thrown up a lot that morning, but otherwise seemed happy and content. So, I picked him up and checked him over to see if there were any signs of a pending rash that usually accompanies a recent dairy exposure. There was nothing. I thought maybe this was just a random thing… that he had just played hard or did something to make him just throw up, no biggie. Then I thought, “Well, what if it’s a delayed reaction to the medication? It is a 12 hour one?”

That night, we gave him the second dose. Nothing. No reaction, no throwing up, and he was happy and playful as ever. My husband and I thought that his spell at day care just must have been a fluke and nothing provoked it.

Today, I picked him up from day care and was informed that he had, yet again, thrown up. Once again, just as the day before, I kindly asked probing questions to see what he had eaten that day. Just the typical green peas, pears, and some other baby food that was known to us to be safe. No biggie.

Then the kicker. While in conversation, the girl stated that “he must not like cheese is all we can think of”.

There was the answer. The one thing we had been trying to figure out since the day before.

She went on to explain three different exposures he had to dairy. A taste of cheese, a cheese puff, and a bite of another child’s birthday cake.

Three different instances to explain the three different episodes that he’d had before.

I explained over to her that he could not have dairy and that was why, along with the rash that comes up within 24 hours, he throws up so violently but then acts like he’s perfectly normal. She didn’t know about the allergy, which I can’t blame her since she has only been working in that room for a month or so. I do, however, blame the daycare facility for not having better planning for things such as this. With babies and kids possibly having some sort of allergy, there should be a way to mark their allergies or specific needs in a place that all workers, no matter how long or short of a time frame that they have worked in the area, should be able to see on a daily basis.

I am not mad or upset at the situation. How can I be when this is something bound to happen again? I’m learning that I can’t place him in a bubble. I can’t keep him at home and care for him 24×7 and watch everything he eats or drinks until he outgrows this allergy (if he does). There will be other parties. He will probably reach over and eat another kid’s cheesy-puff one day. He may try to share some icing or birthday cake with another student. These things I cannot control when I’m not around. While I know he is not allergic to the point that he has anaphylaxis, I also don’t want him to be sick unnecessarily. I need to find a way to the best of my ability to make sure that the people who do care for him when I’m not able to know him and his dairy allergy.

I hate testing.

I hate testing foods.

Especially ones that I know have a huge possibility of breaking Kip out.

We had his 9-month checkup at the pediatrician’s office this past Thursday and he suggested trying some new things. With his first birthday coming up, he thought it would be okay to try maybe different types of dairy, to maybe see if he was growing out of it or to maybe see if he’s not quite as sensitive to it as we had thought. He told us to hold off on testing full-fledged milk until his first birthday, but to try different things like various types of cheeses or maybe even yogurt.

This weekend, he’s been teething an awful lot and all of the saliva is making him cough and stuff to the point that his throat is sore. So last night, I thought, since they doctor suggested we try yogurt, and it’s sorta cool and coating and comforting, I’ll see if it helps. But instead of giving him the whole individual container, I only gave him about half. He did great eating it. No problem whatsoever.

In about ten minutes, his mouth started breaking out. I just thought that since he didn’t throw it up immediately like he had been doing with milk products, that he might actually be getting better.

He started getting fussy and so I took him to change his diaper. I sat him on the changing table and he started gagging. Within seconds, his body was in full-fledged forceful vomiting mode. Anything and everything came out of him, just as it had gone down. By the time I had started to take his clothes off to give him a bath, his chest, neck, cheeks, and back were covered in a rash.

(And no, his face isn’t swollen, it’s just the position he’s laying on my arm)

I took him and washed him, the whole while he’s moaning and shivering. It was an instant flashback from when I was in my teens. I had tried Nair and instead of doing the “patch test” as suggested, I went on and covered my legs and waited for it to do whatever that stinky mess does. Just a couple of seconds in, my legs started itching. Then came the pain. I couldn’t breath it hurt so bad. I immediately washed off as much as I could and did the only thing I knew to do – run a cold bath. I hated it so much. The rash was so painful, I was shivering. I couldn’t even feel the cold water. The same sound and breathing and shivering I did then was the same thing he was doing last night… all from milk.

I hurried and got him sponged off, dried, covered in his rash medicine and dressed. He was miserable. He wasn’t crying his “I’m fussy and don’t want to go to sleep” cry, it was his “I’m in pain, make it better” cry. He knocked out without wanting a bottle or anything. We were able to get some Tylenol in him and then get him off to bed.
He was much better this morning. The spots that broke out the worst are still there, but the other is not near as bad. A few more days of medicine and he’ll be better. It just kills me that it takes less than 2 minutes to do this to him, and days for it to go away.
So my thoughts for *possibly* giving him a regular cupcake for his birthday are gone. I have 3 more months to test-bake some diary-free ones and see how they turn out. Wish me luck!

Never Ending Hunt

I used to take everything for granted as far as food was concerned. After being diagnosed with diabetes when I was a kid, the only thing that mattered in food was what type and how many carbohydrates the food contained. I looked at labels, but only for 2 things – carbohydrate count and to make sure sugar was not in the first three ingredients of the food. And, since then, I can pretty much “eyeball” a food and tell you how many carbs were in it and if it’s a sugar food or not. Of course, I am not always perfect at this, so I can be a little off sometimes. But in those times when I’m off, the way I pay for it is with a high or low blood sugar later on.

With Kip’s allergies, I have quickly learned there is not really such a thing as “eyeballing” the food. You either have to read the label to be sure (unless it specifically is a food made with the food he is allergic to – ie – icecream, milk, butter, cheese, eggs, quiche, etc), or you have to ask the person who made it what’s in it. The stares that come from asking that are irritating. The look that someone shoots back at you as if to say, “Why does it matter?” or “Why, are you on a diet or something?” And even then, when you’re just told “Oh, I put a little bit of everything in it”, I then have to ask – “Do you know if you used any milk, milk products or eggs in it?”. Most of the time, I get just an answer back that is a simple yes or no. Other times, it leads into a whole, “Why do you ask” sort of thing.

I probably wouldn’t mind it so much if people would be open to understanding there is a difference between a dairy allergy and a lactose intolerance (so much like there is a difference between type 1 diabetes and type 2). Those who don’t understand, I try to explain what a dairy/egg/soy allergy is. But even with my best efforts, sometimes I get all sorts of stories back about how their aunt/cousin/niece/great-uncle-in-law can’t have dairy either because of lactose intolerance… and they stress lactose intolerance when they are speaking to me, as if I got the term wrong and they are correcting me. Which then leads to the whole speech about how they are different and that he has a dairy/soy/egg allergy, not an intolerance.

Granted, yes, I know his allergies aren’t classified as “severe” as he doesn’t have any type of immediate reactions such as anaphalaxis or swelling side effects to eating them. But he does break out with eczema patches, and that requires treatment over time,  as there is no fast, immediate treatment for it. Just as most rashes, it comes up within a couple of hours, and takes about 10 days for it to go away with consistent treatment.

It’s something that’s always, and will always, be on my mind. I’m on a never ending hunt for what makes him break out and making sure it doesn’t enter his system. I’m constantly on guard, watching and waiting to see if he breaks out with different foods we try (since he’s started on solids a few months back). And, if we see a reaction, we wait a month and try the food again. If he breaks out again, it’s off the list. If he doesn’t, there may have been just some freak thing happen where he got something he’s allergic to from somewhere else, and then we hunt for that.

Beginning

At just a three weeks old, Kip started breaking out on his face. Thinking it was just “baby acne”, we let it slide and treated it as just a normal rash… Washing his face like normal, applying lotion like normal… nothing out of the ordinary.

1 month old. The first signs.

After all, our biggest worry at this time was a terrible diaper rash.The diaper rash was different than any diaper rash I had seen before. This one seemed to be more inflamed. After a week, his bottom was raw. Streaks of blood would be on the wipe from where skin was no longer on his bottom. He would scream out in pain with each wipe. We took him to the pediatrician twice, who just recommended not using wipes, and if it were a must, use the sensitive ones with no alcohol or fragrance, and to use the ultra-thick Desitin cream on his bottom until it cleared up.

This would work for about a week, but the minute we would stop using it, it was right back again. I tried everything from Desitin to Aveeno to homemade remedies like mixing neosporin, milk of magnesia, and vasaline together to make a cream. I even tried one remedy that suggested putting breast milk on his bottom and letting him lay with his bottom propped up so air could get it and heal it. The only thing that worked and worked well for us was the super-thick Desitin. It would clear up, we would be relieved, and then within a day, it would be right back again. Something in his poop was burning his skin off.

Then, I realized that his “acne” wasn’t clearing up, but rather getting worse. Now, it wasn’t just on his face, it was on his neck and some places on his arms. After another trip to the pediatrician, he suggested keeping with the Desitin for his bottom, and that he may have contact dermatitis because the rash was only on places that were exposed – thinking it could be that he was just simply allergic to maybe a perfume or something. So we switched everything. I stopped wearing perfume or bathing in body wash that had a scent, and so did my husband. We switched Kip’s washes from all the J&J baby-smelling stuff to Aveeno, then eventually Cetaphil for Atopic skin. It worked for the most part. His head, which started breaking out terribly, cleared up quickly. But we still had patches on his face, arms, back, and legs that wouldn’t clear up. I sat in his room crying with him after a bath. I felt like I had done everything I knew to do, but something in my gut was telling me there was more to it. We were given a steroid oil to use, which helped, but not tremendously. I knew there just had to be something else going on, and I certainly didn’t feel that it was okay to keep covering him in steroids. Not to mention, I simply refused to apply it to his head during breakouts, and the poor bugger had learned even at a month old how to scratch where it itched. I wanted it gone. I wanted him to be happy again.

I did lots of Google searches, which all kept pointing to the same thing – Eczema. All of the symptoms were consistent. The cause? Since we had switched everything else that could trigger it, there was only one thing left – something he was getting from me in his milk. I had hoped this wasn’t true, but still I felt it was the only answer. I tried to calm down and let it go, thinking maybe I was over-obsessing things and I just needed to give it time.

9/28 – Morning of Pediatrician visit.

On September 28th, I had enough. I couldn’t take seeing him scratch his face, staying fussy and miserable with each scratch. My husband and I packed him up and took him back to the pediatrician. There was no way this was just contact dermatitis. There HAD to be something else going on. I needed an answer. I needed to know for certain what was going on and what I could do. I was tired of the “let’s just let it ride out” period. After speaking with the pediatrician once more and confirming the eczema diagnosis, I begged him to let me put Kip on formula just to see if it was in fact something he was getting from me, he told me to not stop breast feeding under any circumstances and to go on an elimination diet. I would have to start off by eliminating all dairy and eggs for two weeks, then if he clears back up, wait another week, introduce milk products again, and if he breaks out, then he’s allergic.

I felt so defeated. Could I do that?? Milk is in EVERYTHING it seemed. The only thing that helped me was that I know what it is to have to restrict things from my diet already being a Type 1 diabetic (not that it’s a HAVE to, but it helped a lot to just say “no” to certain foods). So I did it. It was SO hard. I thought that maybe just by cutting back it would help, but nope. I had to cut dairy cold-turkey.

But you know what? It worked.
He cleared up.
No diaper rashes.
His face that had raw patches from where the eczema inflamed healed up quickly along with the use of his steroid cream.

10/22 – One month after dx and elimination diet.

Is he healed? No. But I now know it’s an allergy to milk and possibly eggs, and that it’s something we have to avoid to keep him from breaking out into itchy patches.

I started blogging all of this this morning because I was frustrated with something that happened at day care. I need a place to vent out my frustrations, and hopefully share what it’s like to live with a child with dairy / egg allergies.

**NOTE** Dairy allergies are NOT the same thing as being lactose intolerant. Lactose intolerance comes from the body’s inability to process the sugar that is in milk. Dairy allergy comes from the body seeing milk proteins (most common being casien) as an allergy, much like people with seasonal allergies sneeze when they come in contact with pollen.