Dylan ER visit for allergic reaction (03.12.2011)
Less than 48 hrs ago we were giving an update on how great Dylan is and how happy we are on his progress. Well looks like we get to kick ourselves in the behind (and for those wondering this is typically why we wait 24 hrs or so to do a journal update, stuff just changes so quickly).
The semi-short explanation of what happened and for those who didn't know before, Dylan has anaphylaxis to Dairy and a severe peanut allergy.
Around 3:30 yesterday we went to a friends house for his birthday gathering. They had hors devours out and Dylan was hungry. Like always we looked over everything and made sure their was no dairy or nuts in what he was about to eat, furthermore he has had almost all of it before (same brands and everything). The only suspect item was smoked salmon, which ingredients listed nothing that Dylan couldn't have. We allowed him to eat the salmon and he loved it but approx 5-10 mins after eating it he got a runny nose, 15-20 mins his lips swelled up like a balloon; literally like 3-4x the size they normally are, maybe even more...it was insane. His cheeks got puffy, his eyes watery and we were beyond concerned. Amber immediately put a dose of Benadryl in him. I on the other hand jumped on the phone with his Kaiser GI doctor, Dr. Edward Rich MD, Dr. Rich is an amazing man and a even better doctor. He is always available for us via phone and has been since we first met him. He truly is a special person to us and we are so grateful for the care that we get from him. I gave Dr. Rich the run down on what happened and my reasoning for calling Kaiser vs. Stanford was I felt we needed to communicate with our primary care doc first. Dr.Rich made quick conversation and gave me a run down as fast as he was doing the math in his head. Its amazing how smart this guy is, he literally figures dosages and converts lbs. to kilos faster than a chart and while he's doing it he sounds it all out so you get to hear his thought process...we're always amazed how fast he can do these things in his head. Even more so I know he was busy with family or a party of his own as I could hear he was out and about doing his personal life, after all it was a Saturday. So he says how much does he weigh, I say 46lbs and instantly its: "46 lbs is roughly 21 kilos", how many milligrams of Benadry was given (I replied with 1 dose = 12.5mgs), he replied with "give another dose immediately to make it 25mgs total". He then recommended a massive dose of steriods to be given, he again starts sounding it out. "He's 21 kilos, 21 kilos is allowed 1-2mgs of Prednisone per kilo, I recommend on the high side of doing 40mgs of Prednisone but you need to call Stanford to have them confirm with my recommendations on this. Also if he has the slightest issues in his breathing to use the Epi Pen (this is Epinephrine and it causes an adreline response to counteract the immune response) and get him to the ER right away". I thanked Dr. Rich and was on my way to calling Stanford.
I placed the call to Stanford and waited for the on-call transplant doctor to give me a call back. In addition around this time I emailed my cousin, who's son also has severe allergies and has had major issues getting it all under control. Luckily she has found this great Allergist/Dr. at Stanford whom she works closely with and there son is doing great. I as well let her know the run down and she forwarded it off to the doc. I got a call back from the transplant on call dr. and they advised verbatim what Dr. Rich advised but they wanted this done in the hospital, apparently after a allergic food reaction their can be a delayed reaction that comes 6-8hrs later. At this same time, I also got a call from my cousins kids doctor, she as well agreed with everything and that he should be seen in a hospital setting. So off we went to Kaiser ER, we quickly had to make a choice of which one because some of them just aren't the best equipped for stuff like this. We decided the one next to our house would be best, only issue was we were 45 mins away, as we weren't near home. So we made the trek North towards the ER.
We arrived at the ER and were immediately taken to the back, its sad when you walk into the ER and the nurse's recognize you b/c you've been there one to many times in the past. We again gave the run down, the docs recommendations and the on call ER doc said he would be more comfortable calling Stanford as this is something they never deal with (Pediatric kid with a liver transplant) and he just wanted to confirm he can do the course of action with no repercussions. He came back and said Stanford agreed and he went and got the steriods to administrator. Dylan was observed for a few hrs and then we were let go, as we could finish this up at home. He is now on 40mgs of Prednisone x 5 days. Its really disheartening b/c Stanford was going to remove his Prednisone on Monday/tomorrow (for those who don't know, this medicine is the devil as well...it such horrible stuff and at this level its amazing how fast you see negative changes, I hate this stuff. Don't get me wrong its an amazing drug but the side effects are just horrible).
We were advised that D could develop severe allergies post transplant but he had nothing too out of the norm. We religiously read labels and check for milk and nuts (known allergies to Dylan).
Today was scary, this is the first time the Epi Pen came out and almost got used...I never want to have to use that on Dylan, he has so much going on I just always held in my mind that after transplant life would get easier (after the hard parts of course)...maybe I'm not being realistic and that's what I get for being foolish.
How fair is all this stuff? As if having BA, liver transplant, and allergies isn't enough; now he gets to re-undergo testing all over again for what is most likely additional allergies now. The anti-rejection med is what is most likely causing this, Prograf is a horrific drug. Its amazing how it can suppress the immune system but it comes at a cost, this often times is severe allergies develop, headaches, skin cancer, liver cancer, hand tremors, insomnia, etc... Dylan already is showing signs of headaches, insomnia, hand tremors, and now of course more likely than not severe new allergies.
I mean it when I say look at your life, your loved ones, and be thankful for what you got. As cliche as it sounds, you could have our lives = not the easiest. Could it be better or worse? You bet, and were thankful that D is ours and we get the privelage to care for him but it still doesn't make any of this easy.
-Noah
The semi-short explanation of what happened and for those who didn't know before, Dylan has anaphylaxis to Dairy and a severe peanut allergy.
Around 3:30 yesterday we went to a friends house for his birthday gathering. They had hors devours out and Dylan was hungry. Like always we looked over everything and made sure their was no dairy or nuts in what he was about to eat, furthermore he has had almost all of it before (same brands and everything). The only suspect item was smoked salmon, which ingredients listed nothing that Dylan couldn't have. We allowed him to eat the salmon and he loved it but approx 5-10 mins after eating it he got a runny nose, 15-20 mins his lips swelled up like a balloon; literally like 3-4x the size they normally are, maybe even more...it was insane. His cheeks got puffy, his eyes watery and we were beyond concerned. Amber immediately put a dose of Benadryl in him. I on the other hand jumped on the phone with his Kaiser GI doctor, Dr. Edward Rich MD, Dr. Rich is an amazing man and a even better doctor. He is always available for us via phone and has been since we first met him. He truly is a special person to us and we are so grateful for the care that we get from him. I gave Dr. Rich the run down on what happened and my reasoning for calling Kaiser vs. Stanford was I felt we needed to communicate with our primary care doc first. Dr.Rich made quick conversation and gave me a run down as fast as he was doing the math in his head. Its amazing how smart this guy is, he literally figures dosages and converts lbs. to kilos faster than a chart and while he's doing it he sounds it all out so you get to hear his thought process...we're always amazed how fast he can do these things in his head. Even more so I know he was busy with family or a party of his own as I could hear he was out and about doing his personal life, after all it was a Saturday. So he says how much does he weigh, I say 46lbs and instantly its: "46 lbs is roughly 21 kilos", how many milligrams of Benadry was given (I replied with 1 dose = 12.5mgs), he replied with "give another dose immediately to make it 25mgs total". He then recommended a massive dose of steriods to be given, he again starts sounding it out. "He's 21 kilos, 21 kilos is allowed 1-2mgs of Prednisone per kilo, I recommend on the high side of doing 40mgs of Prednisone but you need to call Stanford to have them confirm with my recommendations on this. Also if he has the slightest issues in his breathing to use the Epi Pen (this is Epinephrine and it causes an adreline response to counteract the immune response) and get him to the ER right away". I thanked Dr. Rich and was on my way to calling Stanford.
I placed the call to Stanford and waited for the on-call transplant doctor to give me a call back. In addition around this time I emailed my cousin, who's son also has severe allergies and has had major issues getting it all under control. Luckily she has found this great Allergist/Dr. at Stanford whom she works closely with and there son is doing great. I as well let her know the run down and she forwarded it off to the doc. I got a call back from the transplant on call dr. and they advised verbatim what Dr. Rich advised but they wanted this done in the hospital, apparently after a allergic food reaction their can be a delayed reaction that comes 6-8hrs later. At this same time, I also got a call from my cousins kids doctor, she as well agreed with everything and that he should be seen in a hospital setting. So off we went to Kaiser ER, we quickly had to make a choice of which one because some of them just aren't the best equipped for stuff like this. We decided the one next to our house would be best, only issue was we were 45 mins away, as we weren't near home. So we made the trek North towards the ER.
We arrived at the ER and were immediately taken to the back, its sad when you walk into the ER and the nurse's recognize you b/c you've been there one to many times in the past. We again gave the run down, the docs recommendations and the on call ER doc said he would be more comfortable calling Stanford as this is something they never deal with (Pediatric kid with a liver transplant) and he just wanted to confirm he can do the course of action with no repercussions. He came back and said Stanford agreed and he went and got the steriods to administrator. Dylan was observed for a few hrs and then we were let go, as we could finish this up at home. He is now on 40mgs of Prednisone x 5 days. Its really disheartening b/c Stanford was going to remove his Prednisone on Monday/tomorrow (for those who don't know, this medicine is the devil as well...it such horrible stuff and at this level its amazing how fast you see negative changes, I hate this stuff. Don't get me wrong its an amazing drug but the side effects are just horrible).
We were advised that D could develop severe allergies post transplant but he had nothing too out of the norm. We religiously read labels and check for milk and nuts (known allergies to Dylan).
Today was scary, this is the first time the Epi Pen came out and almost got used...I never want to have to use that on Dylan, he has so much going on I just always held in my mind that after transplant life would get easier (after the hard parts of course)...maybe I'm not being realistic and that's what I get for being foolish.
How fair is all this stuff? As if having BA, liver transplant, and allergies isn't enough; now he gets to re-undergo testing all over again for what is most likely additional allergies now. The anti-rejection med is what is most likely causing this, Prograf is a horrific drug. Its amazing how it can suppress the immune system but it comes at a cost, this often times is severe allergies develop, headaches, skin cancer, liver cancer, hand tremors, insomnia, etc... Dylan already is showing signs of headaches, insomnia, hand tremors, and now of course more likely than not severe new allergies.
I mean it when I say look at your life, your loved ones, and be thankful for what you got. As cliche as it sounds, you could have our lives = not the easiest. Could it be better or worse? You bet, and were thankful that D is ours and we get the privelage to care for him but it still doesn't make any of this easy.
-Noah
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