Wednesday, March 2, 2016

Allergy Appointment 2.29.15

On Monday we went to Allergy and Asthma Affilates to get some more information on R's allergy situation.

The reason that we were concerned about food and skin allergies is because in the past R has had a few allergic reactions. Thankfully none were severe enough to cause major concern or result in an ER visit. Going into this visit we knew R was allergic to:
Strawberries-Vomiting & Diarrhea
Strawberry Flavoring- Vomiting & Diarrhea
Sweet Potatoes- Severe Whelps, Rash, & Mild Swelling
Squash-Severe Whelps, Rash, & Mild Swelling
Something Mysterious in Baked Beans-Severe Whelps, Rash, & Mild Swelling
Shrimp Sauce (From Japanese Restaurants) -Severe Whelps, Rash, & Mild Swelling

Any Scented Soaps- Severe Full Body Rash
Any Scented Lotions- Severe Full Body Rash
Glade Plugins- Red Eyes, Runny Nose, Coughing/Sneezing
Various Strong Smells- Red Eyes, Runny Nose, Coughing/Sneezing

I went into this appointment very concerned about what the tests would show. However, in the back of my mind I believed that I was just a crazy and overprotective mother who pushed for her child to have another test to clear her own mind. What the test showed completely blew my mind ( and I don't believe that I have fully digested it yet.) But before we go into the results let me describe how the test was performed through my own eyes.

Let me start out by saying that this clinic was so wonderful. The allergist we saw was beyond great and I would recommend him to anyone. All the nursing staff was very informative and helpful. I am so thankful to say that we had a great experience and we will be going back in six months.

On to the details of the actual testing process. 

The nurse came into our room with a little basket thing containing various liquids in a specific and documented location. Within the liquids was a tool with multiple prongs and an easy to hold handle. She explained how the prongs were in the specific liquids and they obtained a few drops of each one. The instrument looked similar to this:
The tool they used on R was much larger than this one so imagine this tool being larger than your hand.

Once the procedure was described and I understood (as much as I could) she proceeded to clean R's back with an alcohol swab. Once it was all clean and dry she had me hold R with his chest to mine and his head over my shoulder. She wrote numerous numbers on his back in various locations then she placed the white tool on his back and the liquids transferred to his clean skin. He was in pain or discomfort as he sat there with the nurse "stamping" away. She did two big stamps with the white tool and three test locations with a smaller stamper thing.

He looked like this after the procedure was completed:

The 1&2 on the top are where the big stamps went. The little circles are the liquids being tested. The 1,2,&3 on the bottom of the three test locations.

 She advised that she would return back in 15 minutes and see how R's skin had progressed with the various liquids being tested. The nurse instructed us to keep R busy and not let him scratch his back or rub it against the wall. She said that the affected areas could become itchy but would not result in pain.

Shortly after she left the reactions began. Can you say SCARY?! Here I was... Alone in a room with my shirtless child, covered in sharpie, random fluids in blotches all over his back, and if that wasn't enough these whelps began appearing everywhere. It looked like he has been burned from the stove eye in random places on his skin. It looked so painful... The whelps were red and I felt like they were growing with every breath that I took. Unfortunately, I was uninformed that this was what the reaction was suppose to look like. So for fifteen minutes I sat there terrified and very concerned. R never acted like he was in any pain or discomfort. He just sat there and played with his toys and climbed in and out of the window.

This is a positive reaction during an allergy test. As you can see the whelps vary in size and shape and the redness surrounds them. 

 This reaction appeared within minutes and continued to worsen over the next 22 minutes. Once we reached the 15 minutes post administration point the nurse returned with ruler in hand. She measured the size of the affected area and in detailed documented each reaction. She explained how the whelping was normal and could signify a positive reaction. The nurse completed her documentation and said the doctor would be in shortly to explain the findings.

 Around 30 minutes post administration the whelps began to shrink and the redness began to turn pink. At this point the nurse returned with a pinkish steroidal ointment to apply to R's poor back. Within 15 minutes the medicine worked wonders and he looked normal excluding his normal eczema rash.

She left us with two new duckies for R's growing collection!

**Side note about his "Eczema" pre-appoinment I allowed R's eczema rash to go untreated for 3 days to allow the allergist to examine his rashy skin. He did not believe R had eczema he said it could be a few things. It could possibly be keratosis pilaris, an allergy, or an early sign of cystic fibrosis related diabetes. I am going to talk to my CF Clinic team and see if we can find a dermatologist to examine him and figure out his skin issues. We still use the triamcinolone, mupirocin, and organic lotion mixture daily.**

Shortly after R returned to normal the allergist reentered the room. He explained that he was very surprised by the test results and was sending us for blood work immediately. R's results revealed that he was allergic to wheat, milk, various grasses, and two types of dust mites and was mildly allergic to dust.

The words circled above reflect what he was tested for. The things highlighted are R's allergies. The #1 signifies its importance over #2. The food allergies > the grass allergies
The allergist explained how R's positive reactions were very positive. He said that he was shocked that we had not had a severe reaction yet especially since R consumes milk and wheat on a regular basis. 
(Whether that be by milk, ensure, yogurt, cheese, butter, sour cream, and etc, plus anything that he ingests food wise always contains wheat. ) So.... Hmmm... 

I was so confused... How could I have not known that he was allergic to milk and wheat?! He described it like this. He turned on the faucet in the little room. The faucet barely dripped and he posed the question what if I left the drip on what would eventually occur? & I said the sink would eventually overflow. He replied, correct and which drip would result in the sink overflowing. I said, I have no clue. Exactly, he replied, all the drips together make the sink overflow. No one drop results in the water overflowing... What he was saying was that even though R has had his allergy related food it just takes one random drop to push it over the edge and result in a catastrophe. 

The allergist sent us home on a NO DAIRY diet and limited wheat diet. 

After discussing with the doctor about R's test results we were sent to the hospital for bloodwork. The bloodwork will be done on Friday and we will know more about the severity of his food allergies. For now we are working on correcting his diet (& mine too since I'm still nursing). We have visited a few grocery stores and bought a few different wheat and dairy products. So far R has liked zero of them... My biggest fear is that his weight will begin to reflect his lack of consumption. Since R is dairy and wheat allergic it makes finding high calorie, salt, and fat food very difficult...

We were there for quite a few hours waiting.... 

**Sidenote: While waiting the lab was packed and we were stuck in the hallway. Since R has CF he is required to wear a mask during his stay in the hospital. So imagine standing in a hallway with a one year old wearing a mask. That alone is enough to turn a few heads. Then add onto that him trying to rip it off and his crazy mother wrapping him in a blanket and skipping down the hallway singing the ABC song for 3 hours... Did I mention we had already been in an hospital setting for 3 hours..? Needless to say it was a very bonding time for R&myself... Poor guy...**

Then finally it was our turn. Two nurses and two painful sticks and digs later R produced the blood he needed into the vile and we were out the door.

Once we received the conformation of R's allergies I called our CF team. They sent the nutritionist down to see us and kinda help me absorb how this was going to affect our lives. She gave us some free samples of dairy free carb powder and some documents of milk and wheat allergies. She told us to try our best and she would see us soon in clinic and we would go over everything and create a diet that works for my perfect son.

This was a very long and alarming day. To say that I have absorbed the results would be a lie. Honestly, to say that I have absorbed that my son had CF would be a lie. Sometimes I feel like I have R's care plan under control then somethings shakes up the boat and I end up back at stage one... I am so thankful for my child and I am so blessed to be his mother. Every day he impresses me in someway and he always keeps a smile on my face. He encourages me to be a better person and to push myself in more ways than one. He gives me a joy that I never knew I could achieve. The void I have always felt is filled by him. Whether he is crying, smiling, laughing, talking, yelling, or throwing a fit he fills my void. He makes my heart flutter and gives my life purpose. I cannot express how much I love and admire my child. Yes, he may be complicated, time consuming, and a little overwhelming but he is perfect. He is the good in the world. He is hope. He is who I always dreamed of being. So happy and full of life. He is my child and my hero. Being diagnosed with food allergies is just another part of his journey. Hand in hand he and I will tackle it head on. I know my God has a plan and he will lead us every part of our journey. 

**Sidenote: R is currently battling enterbactor again along with his first cold. He is going on day 8 on a pretty scary cough, sneezing, and a continually running nose. Thankfully, we have not had a fever or green snot. So we are not treating it yet with antibiotics. We have however added breathing treatments every 4 hours. He is also suffering from night terrors which keep him up throughout the night. (He has had these ever since his first time under anesthesia) But even though so much is going on with him health wise he has never missed an opportunity to smile or play. He is the joy of this world...**

Thank you Lord for my life and my perfect yet. I give you praise for all things. I know all good things come from your loving hand. Bless my child...

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