KayTar had an allergist appointment yesterday! We had previously seen an allergist (who we loved, but left us when her husband's fellowship ended and he found work in another state) that was not affiliated with our local Children's Hospital, so when we came to the point of deciding KayTar would need a peanut challenge, she had to refer us to the hospital's allergy department because they only allow peanut challenges on their patients.
Her initial appointment was this summer, but we ended up having to cancel it. The thing about allergist visits is that your child has to be off of all antihistamines for 7 days prior to the appointment. KayTar got sick this summer and we absolutely had to give her Benadryl, she was coughing and puking and having some minor difficulties with breathing. We held off for as long as we could, but in the end, we had to give it. It ended up being a non-issue because she landed in the hospital the day of her appointment with an episode and we would have had to cancel in any case.
We discontinued antihistamines last Thursday and when we found ourselves at a birthday party over the weekend in a germ laden bouncy house kingdom full of snotty and coughing kids, we experienced an ominous sense of foreboding. What were we thinking?!
You can probably fill in the rest. Wednesday night she was miserably congested and we were up all night. LITERALLY. As in, I went to bed at 1am and she woke up for the first time at 1:15am. From 1:15am-3am, we stayed in my bed, but she was fussing/coughing/gagging so frequently that sleep was not happening. At 3am, I caved and we came to the living room (kicking Josh off of the sofa and back to bed) so she could sit upright in her baby papasan seat. From 3am-5am I dozed off a couple of times, never for more than 30 minutes, before she would cry out again. At 5am, she fell asleep and so did I. My alarm went off at 6am. Awesome.
Our appointment was at 9am and we were on time, however, the office was not. We didn't see anyone until 11am! Two whole hours. All I could think was, I could be sleeping right now. Once it began, the appointment went smoothly. KayTar had negative scratch test results to all tree nuts and peanuts, which was old news. The new news is that she didn't cry or fuss at all this go 'round. She was a total pro. She is still classified as nut allergic for now, but we have a peanut challenge scheduled for November and from there we will schedule a tree nut challenge. If all goes well, then we can lift the nut ban! CHOCOLATE, PEANUT BUTTER, REESE'S CUPS. I can taste it already. On the other hand, if all goes well, then we are left with idiopathic angioedema (fancy talk for this type of swelling without an obvious cause) and she'll have to go through some immune testing to determine if things are functioning properly, like her complement system.
As soon as we got home (which was around 3 in the afternoon!), I gave the Snot Factory some Benadryl and she ended up falling asleep on my chest for 3+ hours. I skipped class because I was too tired to function on any type of intelligent level (and Chemistry is crazy difficult to stay awake in on a normal night) and I had a sweet little girl asleep on me that I didn't want to disturb. Last night we BOTH got some sleep. It was awesome. She's still feeling rough, but we're managing it with Benadryl/Albuterol and fluids through her g-tube. She has had little to no Pediasure in the past couple of days, which makes me a tiny bit anxious about the possibility of this resulting in an episode, but we'll play it by ear and hope for the best.
Showing posts with label allergic reaction. Show all posts
Showing posts with label allergic reaction. Show all posts
Friday, October 16, 2009
Wednesday, May 27, 2009
Like drawers of a filing cabinet, so are the days of our lives.
Medical:
This morning KayTar had an allergist visit. We love allergist visits. Seriously, we do! In addition to the fact that KayTar has decided that "specialist visits" are actually code for the KayTar Variety Hour (complete with a captive audience), our allergist has really warmed to KayTar and seems to genuinely look forward to seeing her. Turns out her latest labs didn't register any allergic reaction at all, so we're still avoiding nuts, but really unsure about the whole nut allergy. Because some people are reactive even though the immunoCAP is negative, the next step is a nut challenge, which they only do in the hospital. She's referring us to her husband, who is an allergy/immunology fellow at our children's hospital, at least in part because she said she wants him to meet KayTar, because she's such a hoot. I called about scheduling today and should hear back in the next couple of days. On a sad note, this was the last time we'll see her! They are moving to another state once his fellowship ends. We've only been seeing her for a few months, but she and KayTar click so well, we're sad to see her go. Strangely enough, when I called to schedule her genetics follow-up this afternoon, I discovered we were losing TWO doctors! Her geneticist is also moving out of state at the end of the month. We'll be seeing a new doctor for our follow-up visit, we're hoping he can look at the case with fresh eyes and see something someone else overlooked, since we've hit a bit of a dead end.
School:
I spoke with KayTar's new school and BubTar's transfer is a go! Unfortunately, they do not have a full time GT class, though, they do tend to group the high achievers together. There is a pull out program for GT and the teacher will be able to give him enrichment activities to keep him engaged in the regular classroom. While I'm a little bummed that it isn't a dedicated GT classroom, it sounds like he'll manage just fine. We could pursue grade level testing to move him upwards and I don't doubt that he could move onto third, but we think it is best that he stays with his same aged peers. He's just excited that there is bus he might get to ride and that there is no weekly chapel to sit through, such are the priorities of seven year old boys.
Other:
The CHIP buy-in bill might not make it through state legislation if they don't get to it tonight, so everyone PLEASE (pleasepleaseplease), cross your fingers, say your prayers, or whatever else you can offer up that this one makes it through.
*I have a 3-drawer filing cabinet on my desk, labeled Medical, School, and Other...as I finished these paragraphs I sat back in my chair and caught sight of the drawers, the recurring themes of my life.
This morning KayTar had an allergist visit. We love allergist visits. Seriously, we do! In addition to the fact that KayTar has decided that "specialist visits" are actually code for the KayTar Variety Hour (complete with a captive audience), our allergist has really warmed to KayTar and seems to genuinely look forward to seeing her. Turns out her latest labs didn't register any allergic reaction at all, so we're still avoiding nuts, but really unsure about the whole nut allergy. Because some people are reactive even though the immunoCAP is negative, the next step is a nut challenge, which they only do in the hospital. She's referring us to her husband, who is an allergy/immunology fellow at our children's hospital, at least in part because she said she wants him to meet KayTar, because she's such a hoot. I called about scheduling today and should hear back in the next couple of days. On a sad note, this was the last time we'll see her! They are moving to another state once his fellowship ends. We've only been seeing her for a few months, but she and KayTar click so well, we're sad to see her go. Strangely enough, when I called to schedule her genetics follow-up this afternoon, I discovered we were losing TWO doctors! Her geneticist is also moving out of state at the end of the month. We'll be seeing a new doctor for our follow-up visit, we're hoping he can look at the case with fresh eyes and see something someone else overlooked, since we've hit a bit of a dead end.
School:
I spoke with KayTar's new school and BubTar's transfer is a go! Unfortunately, they do not have a full time GT class, though, they do tend to group the high achievers together. There is a pull out program for GT and the teacher will be able to give him enrichment activities to keep him engaged in the regular classroom. While I'm a little bummed that it isn't a dedicated GT classroom, it sounds like he'll manage just fine. We could pursue grade level testing to move him upwards and I don't doubt that he could move onto third, but we think it is best that he stays with his same aged peers. He's just excited that there is bus he might get to ride and that there is no weekly chapel to sit through, such are the priorities of seven year old boys.
Other:
The CHIP buy-in bill might not make it through state legislation if they don't get to it tonight, so everyone PLEASE (pleasepleaseplease), cross your fingers, say your prayers, or whatever else you can offer up that this one makes it through.
*I have a 3-drawer filing cabinet on my desk, labeled Medical, School, and Other...as I finished these paragraphs I sat back in my chair and caught sight of the drawers, the recurring themes of my life.
Friday, January 30, 2009
[Almost] Weekend Update
1. School Drama.
It totally diffused itself. I spent all weekend and week studying SpEd laws and putting all of my ducks into carefully orchestrated little rows and then yesterday I received a phone call from the special education coordinator who said, "I spoke to my supervisor and if you can just get us a letter from your pediatrician stating that KayTar has an underlying medical reason for the frequent absences, that will take care of things." TA DA! I have a feeling that she brought up homebounding to her supervisor who quickly set her straight, but that is just my inference. Regardless of the reason, I WIN! She keeps her placement and I don't have to send notes for every.single.absence. (She's had two just this week, Monday for the allergic reaction and today for another fever.)
2. Allergic Reaction.
We are now a peanut-free household. Because trace amounts of peanuts from cross-contamination were the only commonality between the two reactions, and because it was the only allergen she showed a response to, that is thought to be the culprit. Me? I'm slightly terrified now, because if that was her reaction to TEENY TRACES from cross-contamination, what in the world will happen if she gets a hold of the real thing? (Don't answer that, I already know.) I'm already tempted to never sleep again after realizing she was reacting all night long and I didn't even think about that being a reason for her restlessness. The pediatrician's statement that "The good news is she didn't anaphylax while you were sleeping." is both comforting and terrifying because, OH MY GOD, what if she anaphylaxes while I'm sleeping?! Such peaceful thoughts to lull me to sleep.
3. Insurance.
As of Saturday, the kids lose their coverage. We've gotten everything worked out, except for the fact that Josh's HR department seems completely unable to do their jobs and although we've been asking for certain paperwork for WEEKS, they still haven't done it. Urgent and time sensitive are foreign concepts to them, evidently, so my kids are going to lose insurance coverage, at least until our appeal can be processed. We filed it today, with absolutely no help from his HR department, so the coverage will lapse during the time it takes them to process the appeal. It is resolvable, thankfully, but it would have been taken care of weeks ago if his employer would have put in one teeny, tiny ounce of assistance. I'm clearly not bitter, but I may have said something to the effect of, "I WILL THROTTLE THEM!" when he told me that although they told him last week they had faxed the proper information, yesterday after he left them several messages, they emailed him and sheepishly said, "Can we get the mailing address, too, so we can send a hard copy WHEN WE FAX IT." making it clear that they actually never faxed the information and just told him that to make him stop asking. But no, I am clearly not bitter about this or the fact that if they just offered comprehensive AFFORDABLE insurance, we wouldn't be jumping through these hoops at all. Not bitter.
4. Sick, sick, sick.
KayTar is sick again. SHOCKER. It looks like another upper respiratory infection, her illness of choice, but I think we're going to go see the pediatrician today to be on the safe side, since as of Saturday she is no longer insured. (NOT BITTER, THOUGH.) Josh is once again relegated to the land of fairies and princesses. It keeps the magic alive only getting to sleep in the same bed every couple of weeks or so. ;) KayTar talked my ear off all night long, as she does when her fever spikes, exclaiming things in her sleep, "Stylish! I'm so stylish!", having conversations with me while she was awake, and dramatically overreacting when I had to use the bathroom, "But WHY, Mom? WHY did you LEAVE ME?!". Thank God for coffee.
It totally diffused itself. I spent all weekend and week studying SpEd laws and putting all of my ducks into carefully orchestrated little rows and then yesterday I received a phone call from the special education coordinator who said, "I spoke to my supervisor and if you can just get us a letter from your pediatrician stating that KayTar has an underlying medical reason for the frequent absences, that will take care of things." TA DA! I have a feeling that she brought up homebounding to her supervisor who quickly set her straight, but that is just my inference. Regardless of the reason, I WIN! She keeps her placement and I don't have to send notes for every.single.absence. (She's had two just this week, Monday for the allergic reaction and today for another fever.)
2. Allergic Reaction.
We are now a peanut-free household. Because trace amounts of peanuts from cross-contamination were the only commonality between the two reactions, and because it was the only allergen she showed a response to, that is thought to be the culprit. Me? I'm slightly terrified now, because if that was her reaction to TEENY TRACES from cross-contamination, what in the world will happen if she gets a hold of the real thing? (Don't answer that, I already know.) I'm already tempted to never sleep again after realizing she was reacting all night long and I didn't even think about that being a reason for her restlessness. The pediatrician's statement that "The good news is she didn't anaphylax while you were sleeping." is both comforting and terrifying because, OH MY GOD, what if she anaphylaxes while I'm sleeping?! Such peaceful thoughts to lull me to sleep.
3. Insurance.
As of Saturday, the kids lose their coverage. We've gotten everything worked out, except for the fact that Josh's HR department seems completely unable to do their jobs and although we've been asking for certain paperwork for WEEKS, they still haven't done it. Urgent and time sensitive are foreign concepts to them, evidently, so my kids are going to lose insurance coverage, at least until our appeal can be processed. We filed it today, with absolutely no help from his HR department, so the coverage will lapse during the time it takes them to process the appeal. It is resolvable, thankfully, but it would have been taken care of weeks ago if his employer would have put in one teeny, tiny ounce of assistance. I'm clearly not bitter, but I may have said something to the effect of, "I WILL THROTTLE THEM!" when he told me that although they told him last week they had faxed the proper information, yesterday after he left them several messages, they emailed him and sheepishly said, "Can we get the mailing address, too, so we can send a hard copy WHEN WE FAX IT." making it clear that they actually never faxed the information and just told him that to make him stop asking. But no, I am clearly not bitter about this or the fact that if they just offered comprehensive AFFORDABLE insurance, we wouldn't be jumping through these hoops at all. Not bitter.
4. Sick, sick, sick.
KayTar is sick again. SHOCKER. It looks like another upper respiratory infection, her illness of choice, but I think we're going to go see the pediatrician today to be on the safe side, since as of Saturday she is no longer insured. (NOT BITTER, THOUGH.) Josh is once again relegated to the land of fairies and princesses. It keeps the magic alive only getting to sleep in the same bed every couple of weeks or so. ;) KayTar talked my ear off all night long, as she does when her fever spikes, exclaiming things in her sleep, "Stylish! I'm so stylish!", having conversations with me while she was awake, and dramatically overreacting when I had to use the bathroom, "But WHY, Mom? WHY did you LEAVE ME?!". Thank God for coffee.
Monday, January 26, 2009
Well, that's one way to wake me up.
Last night KayTar slept fitfully, moaning, crying, waking, coughing...I finally brought her to our bed, so we could all get some sleep. This morning when the boys got up and ready for work and school, I stayed in bed with her because she was nuzzled against me and if I had extricated myself, she would have woken up and after last night, I wanted her to get a bit more sleep. We dozed together and the next thing I knew, KayTar was tapping on my shoulder and saying, "Mom, look at me. My tongue is hurty." I rolled over, expecting her to have a sore throat, instead I saw this:
That was NOT the most peaceful way to wake up. Immediately my partially functioning brain did the math:
I grabbed her epi-pens, benadryl, and my cell phone. I called the pediatrician. I usually don't call the pediatrician unless I'm returning a call. I prefer email as I find it much less disruptive, but panicked pre-coffee minds don't really think about things like that. She answered, told me to give her a dose of benadryl, wait 30 minutes, give another dose if needed, and watch her breathing...if she started to struggle, give the epi, go to the hospital. A little while after her second dose of benadryl, the swelling stopped progressing. She is still sporting the Angelina Look, but it isn't spreading or getting worse. According to her, her tongue feels better, too. WHEW! I'm supposed to keep her home today (perfect timing, right?), give benadryl every four hours, and hope that we won't have anymore excitement today.
As for what triggered it? Who knows.
[speculation] KayTar had a homemade cookie last night before bed. The ingredient list was innocuous; butter, sugar, flour, eggs, cream of tartar, and cinnamon. Cinnamon was a likely suspect, but then I remembered she frequently snacks on cinnamon rolls (sans icing) without any kind of problem. The cookies were made in the same kitchen at the same time as cookies containing peanut butter and peanuts, so the only other thing I can think of is cross-contamination, though with her borderline numbers I don't know how likely that is. [/speculation]
The pediatrician said she was likely reacting all night, causing the fitful sleep and coughing, but I didn't think to check her lips for swelling in the middle of the night. I guess I will from now on, though.
The allergist did say that if she continued to have episodes of swelling without cause, we might need to do immune testing. I'd prefer a peanut allergy to an immune problem, but I usually don't get a vote with these things. For now, though, I'm just glad that the swelling is no longer progressing and that I didn't have to jab an epi-pen into her little thigh and rush her to the hospital today.
That was NOT the most peaceful way to wake up. Immediately my partially functioning brain did the math:
lip swelling + tongue swelling = anaphylaxis
I grabbed her epi-pens, benadryl, and my cell phone. I called the pediatrician. I usually don't call the pediatrician unless I'm returning a call. I prefer email as I find it much less disruptive, but panicked pre-coffee minds don't really think about things like that. She answered, told me to give her a dose of benadryl, wait 30 minutes, give another dose if needed, and watch her breathing...if she started to struggle, give the epi, go to the hospital. A little while after her second dose of benadryl, the swelling stopped progressing. She is still sporting the Angelina Look, but it isn't spreading or getting worse. According to her, her tongue feels better, too. WHEW! I'm supposed to keep her home today (perfect timing, right?), give benadryl every four hours, and hope that we won't have anymore excitement today.
As for what triggered it? Who knows.
[speculation] KayTar had a homemade cookie last night before bed. The ingredient list was innocuous; butter, sugar, flour, eggs, cream of tartar, and cinnamon. Cinnamon was a likely suspect, but then I remembered she frequently snacks on cinnamon rolls (sans icing) without any kind of problem. The cookies were made in the same kitchen at the same time as cookies containing peanut butter and peanuts, so the only other thing I can think of is cross-contamination, though with her borderline numbers I don't know how likely that is. [/speculation]
The pediatrician said she was likely reacting all night, causing the fitful sleep and coughing, but I didn't think to check her lips for swelling in the middle of the night. I guess I will from now on, though.
The allergist did say that if she continued to have episodes of swelling without cause, we might need to do immune testing. I'd prefer a peanut allergy to an immune problem, but I usually don't get a vote with these things. For now, though, I'm just glad that the swelling is no longer progressing and that I didn't have to jab an epi-pen into her little thigh and rush her to the hospital today.
Wednesday, January 21, 2009
Predictably unpredictable
Yesterday KayTar had an allergist appointment to get her RAST results.
She tested negative for eggs and tree nuts, but borderline for peanuts.
Exactly borderline.
Negative is LESS THAN .35, her peanut level was .35 EXACTLY.
That's our girl, slightly abnormal, but never clear cut.
With such borderline results, there isn't an across the board recommendation for avoidance. It seems to be our decision in the end, so long as we are never without Benadryl and her epi-pens. RAST levels aren't always indicative of the strength of a reaction and the deciding factor is what happens when she actually ingests the allergen, which is also a little unclear.
She reacted strongly to the Blizzard; peanuts are the only allergen we could place at the scene of the crime and also the only allergen she showed any response to. She has eaten a small amount of peanut butter once since that time, I gave Benadryl immediately through her g-button, and she never reacted (though, she did have runny stool the following day, but that could have been from another cause altogether). The pediatrician said that she likely would have had some reaction if peanuts were the culprit, but the allergist said that sometimes Benadryl is enough to occlude the reaction if given quickly enough.
If the decision lies with us, I think we are leaning towards avoidance at this point in time. I do feel reassured that we have the epi-pen, in case something does happen, but I never want cause to use them. Even if there is a slight chance of reacting negatively to peanuts, I don't want to offer them to her. At the same time, I'm a bit torn because her diet is already so severely self-limited, saying no to any food seems like sacrilege. In the end, though, I think the possibility (even a very slight one) of anaphylaxis trumps my qualms about limiting her already limited diet. We'll keep an alternative, equivalent product in the house in case she wants some, but Josh and I are both more comfortable avoiding the (ever so slight) possibility of a negative reaction.
As we laid in bed last night, we had a good chuckle about the results. It is just like her to give us a little something that indicates a problem, but she never gives up enough information to yield an answer with any kind of certainty to it. Take this one instance and multiply it hundreds of times over and you've extrapolated the KayTar experience, abnormal yet nonspecific to the Nth degree.
She tested negative for eggs and tree nuts, but borderline for peanuts.
Exactly borderline.
Negative is LESS THAN .35, her peanut level was .35 EXACTLY.
That's our girl, slightly abnormal, but never clear cut.
With such borderline results, there isn't an across the board recommendation for avoidance. It seems to be our decision in the end, so long as we are never without Benadryl and her epi-pens. RAST levels aren't always indicative of the strength of a reaction and the deciding factor is what happens when she actually ingests the allergen, which is also a little unclear.
She reacted strongly to the Blizzard; peanuts are the only allergen we could place at the scene of the crime and also the only allergen she showed any response to. She has eaten a small amount of peanut butter once since that time, I gave Benadryl immediately through her g-button, and she never reacted (though, she did have runny stool the following day, but that could have been from another cause altogether). The pediatrician said that she likely would have had some reaction if peanuts were the culprit, but the allergist said that sometimes Benadryl is enough to occlude the reaction if given quickly enough.
If the decision lies with us, I think we are leaning towards avoidance at this point in time. I do feel reassured that we have the epi-pen, in case something does happen, but I never want cause to use them. Even if there is a slight chance of reacting negatively to peanuts, I don't want to offer them to her. At the same time, I'm a bit torn because her diet is already so severely self-limited, saying no to any food seems like sacrilege. In the end, though, I think the possibility (even a very slight one) of anaphylaxis trumps my qualms about limiting her already limited diet. We'll keep an alternative, equivalent product in the house in case she wants some, but Josh and I are both more comfortable avoiding the (ever so slight) possibility of a negative reaction.
As we laid in bed last night, we had a good chuckle about the results. It is just like her to give us a little something that indicates a problem, but she never gives up enough information to yield an answer with any kind of certainty to it. Take this one instance and multiply it hundreds of times over and you've extrapolated the KayTar experience, abnormal yet nonspecific to the Nth degree.
Wednesday, January 07, 2009
Allergist Appointment
Yesterday I took KayTar to the allergist to try and get to the bottom of the Botox for Babies situation. It was our first time meeting the doctor and I was pleasantly surprised. She was intelligent and warm and totally captivated by KayTar, which is always a bonus. KayTar was in true form and had the doctor in stitches. At one point, while she was taking her history, she asked about our pets, what kinds, whether they were indoor or outdoor, and after I answered the questions, KayTar said, "Oh Mom. Now you're just making fings up." It was so hilarious! The timing was superb. She was on a roll that entire appointment, really. She charmed them all, the receptionist, the nurse, the doctor, the whole clinic.
It has always been interesting trying to introduce new doctors to KayTar's medical history as it is impossible to wrap it all up with a nice little diagnostic bow, but these days it is even trickier, because there she is in all her chatty, smart, hilarious glory, while I'm listing her totally invisible conditions. Brain lesions. Profound unilateral hearing loss. Feeding disorder. Gross motor delays. Chronic constipation. Neurological episodes. Asthma. A year ago, when she was globally delayed, you could see there was a problem at first glance...but now, there's not a trace of it left, not until it is pointed out. She's left the world of cognitive delays behind and impresses just about everyone she meets with that little noggin of hers. It might work a little differently, but it sure works efficiently. Her differences have by and large left the developmental realm and are squarely in the medical realm now. I have to admit that it is kind of nice that her challenges aren't immediately visible these days, but it does increase the number of inquisitive looks I get when rattling off her medical history.
Once we finished going over her sordid history and KayTar had satisfactorily entertained the physician, we got down to business. KayTar's initial reaction puts her at a high risk for anaphylaxis, because it involved two body systems, her skin (swelling) and her gastrointestinal tract (vomiting). The allergist didn't feel comfortable doing skin testing because of that, so she came up with a short list of allergens to be tested via KayTar's blood. She said that the Peanut Butter incident didn't necessarily rule out a peanut allergy, because the Benadryl might have occluded the reaction. So the short list was: peanuts, all tree nuts, and eggs. She also called in a prescription for an EpiPen Jr, given the high risk of anaphylaxis (does KayTar do anything small, ever?).
This morning I took KayTar to have her labs drawn at the hospital and it wasn't too traumatic. There were a few tears, but it didn't take three of us to restrain her like in the olden days. I don't think she's had blood drawn (outside of a finger stick or draw through an IV) since 2007! That is forever in 'Tar time. The results should be back in 1-2 weeks and we have a follow up appointment on the 20th to touch base. I'm hoping the tests do show something and give us a clear cut allergen to avoid, because otherwise, High Risk of Anaphylaxis will be lurking around every corner and in every bite of food. No thank you, I'd prefer to know what the enemy looks like and steer clear of it. The single lip swelling incident was more than enough for me, and after that day she momentarily couldn't breathe, I'd be perfectly happy to never see her in any kind of respiratory distress again. So hopefully, unlike every other test that has been run on KayTar, we'll get some easy, clear cut answers just this once.
It has always been interesting trying to introduce new doctors to KayTar's medical history as it is impossible to wrap it all up with a nice little diagnostic bow, but these days it is even trickier, because there she is in all her chatty, smart, hilarious glory, while I'm listing her totally invisible conditions. Brain lesions. Profound unilateral hearing loss. Feeding disorder. Gross motor delays. Chronic constipation. Neurological episodes. Asthma. A year ago, when she was globally delayed, you could see there was a problem at first glance...but now, there's not a trace of it left, not until it is pointed out. She's left the world of cognitive delays behind and impresses just about everyone she meets with that little noggin of hers. It might work a little differently, but it sure works efficiently. Her differences have by and large left the developmental realm and are squarely in the medical realm now. I have to admit that it is kind of nice that her challenges aren't immediately visible these days, but it does increase the number of inquisitive looks I get when rattling off her medical history.
Once we finished going over her sordid history and KayTar had satisfactorily entertained the physician, we got down to business. KayTar's initial reaction puts her at a high risk for anaphylaxis, because it involved two body systems, her skin (swelling) and her gastrointestinal tract (vomiting). The allergist didn't feel comfortable doing skin testing because of that, so she came up with a short list of allergens to be tested via KayTar's blood. She said that the Peanut Butter incident didn't necessarily rule out a peanut allergy, because the Benadryl might have occluded the reaction. So the short list was: peanuts, all tree nuts, and eggs. She also called in a prescription for an EpiPen Jr, given the high risk of anaphylaxis (does KayTar do anything small, ever?).
This morning I took KayTar to have her labs drawn at the hospital and it wasn't too traumatic. There were a few tears, but it didn't take three of us to restrain her like in the olden days. I don't think she's had blood drawn (outside of a finger stick or draw through an IV) since 2007! That is forever in 'Tar time. The results should be back in 1-2 weeks and we have a follow up appointment on the 20th to touch base. I'm hoping the tests do show something and give us a clear cut allergen to avoid, because otherwise, High Risk of Anaphylaxis will be lurking around every corner and in every bite of food. No thank you, I'd prefer to know what the enemy looks like and steer clear of it. The single lip swelling incident was more than enough for me, and after that day she momentarily couldn't breathe, I'd be perfectly happy to never see her in any kind of respiratory distress again. So hopefully, unlike every other test that has been run on KayTar, we'll get some easy, clear cut answers just this once.
Wordless Wednesday: Yesterday/Today
Friday, December 26, 2008
Well, I got what I wanted...
KayTar was healthy and happy, and we were all able to enjoy all of the festivities together! The kids got what they wanted, too, as you can see.
From Mr. SC (as BubTar addressed his letter), KayTar got a set of the Disney Princesses and a dress up trunk and BubTar got a camcorder (small, but at 30 fps it is actual video quality!) and a little mp3 player. From family, they got way too much...our house is covered in pink and purple and glitter, princesses and dresses and Barbies all around...and on the flip side, the floors are covered with Legos and Star Wars and Transformers. I love Christmas day, the work is done, everyone is pleased, and a hush of new toy joy falls over the house that is pierced only by squeals of delight. Lovely.
Yesterday evening, Josh ran an errand and while he was gone I was watching the kids and doing laundry, taking trips to the garage to start and change the loads and trips to the bedroom to lay out the clean ones. Josh arrived home and called my attention to something. KayTar. WITH THE PEANUT BUTTER JAR.
Since the Swelling Incident, I've been ridiculously careful about peanuts and peanut containing items, our Christmas candy supply speaks to this (have you any idea how many things "MAY CONTAIN PEANUTS"? Too many.). We have informed the extended family, taken precautions with holiday meals, and steered clear of everything with the possibility of peanut contamination. After all of that, there she was ON CHRISTMAS DAY with a jar of peanut butter in one hand, the other hand stuck in her mouth, slurping peanut butter from her finger. I. almost. passed. out. Josh says, in his typical, practical Josh manner, "Well, I guess this will be the allergy test."
I dosed her with Benadryl immediately and then tried to sit still as my nerves attempted to claw their way to the outside of my body. Peanut! Allergy! Swelling! Puking! Anaphylaxis! I watched her and waited. She fell asleep (thanks to the one-two punch of Benadryl and Christmas exhaustion) without complication and I continued to check her often, for hours. No swelling. No puking. No reaction. I don't know enough about food allergies to know if Benadryl is strong enough to prevent a reaction when given immediately (before the reaction begins) or if this means it isn't peanuts at all.
Part of me is hoping that it means it isn't peanuts at all, because the sheer volume of peanut containing items is daunting. KayTar eats so little as it stands that saying NO when she wants to eat something feels profane. At the same time, if it isn't a peanut allergy, it means it is something else, something unknown, and we'll have to figure that out, which might be more difficult and will probably still lead to us saying NO to certain foods. If we don't figure it out, I'm going to worry about every bite of food that enters her mouth, always waiting for something bad to happen...I don't want that sort of shadow hanging around. I don't know what the best scenario is here, but I do know that the good news of the moment is that she didn't react yesterday, for whatever reason, and that was a nice little Christmas gift, all on its own.
From Mr. SC (as BubTar addressed his letter), KayTar got a set of the Disney Princesses and a dress up trunk and BubTar got a camcorder (small, but at 30 fps it is actual video quality!) and a little mp3 player. From family, they got way too much...our house is covered in pink and purple and glitter, princesses and dresses and Barbies all around...and on the flip side, the floors are covered with Legos and Star Wars and Transformers. I love Christmas day, the work is done, everyone is pleased, and a hush of new toy joy falls over the house that is pierced only by squeals of delight. Lovely.
Yesterday evening, Josh ran an errand and while he was gone I was watching the kids and doing laundry, taking trips to the garage to start and change the loads and trips to the bedroom to lay out the clean ones. Josh arrived home and called my attention to something. KayTar. WITH THE PEANUT BUTTER JAR.
Since the Swelling Incident, I've been ridiculously careful about peanuts and peanut containing items, our Christmas candy supply speaks to this (have you any idea how many things "MAY CONTAIN PEANUTS"? Too many.). We have informed the extended family, taken precautions with holiday meals, and steered clear of everything with the possibility of peanut contamination. After all of that, there she was ON CHRISTMAS DAY with a jar of peanut butter in one hand, the other hand stuck in her mouth, slurping peanut butter from her finger. I. almost. passed. out. Josh says, in his typical, practical Josh manner, "Well, I guess this will be the allergy test."
I dosed her with Benadryl immediately and then tried to sit still as my nerves attempted to claw their way to the outside of my body. Peanut! Allergy! Swelling! Puking! Anaphylaxis! I watched her and waited. She fell asleep (thanks to the one-two punch of Benadryl and Christmas exhaustion) without complication and I continued to check her often, for hours. No swelling. No puking. No reaction. I don't know enough about food allergies to know if Benadryl is strong enough to prevent a reaction when given immediately (before the reaction begins) or if this means it isn't peanuts at all.
Part of me is hoping that it means it isn't peanuts at all, because the sheer volume of peanut containing items is daunting. KayTar eats so little as it stands that saying NO when she wants to eat something feels profane. At the same time, if it isn't a peanut allergy, it means it is something else, something unknown, and we'll have to figure that out, which might be more difficult and will probably still lead to us saying NO to certain foods. If we don't figure it out, I'm going to worry about every bite of food that enters her mouth, always waiting for something bad to happen...I don't want that sort of shadow hanging around. I don't know what the best scenario is here, but I do know that the good news of the moment is that she didn't react yesterday, for whatever reason, and that was a nice little Christmas gift, all on its own.
Thursday, December 18, 2008
Like Botox for the preschool set...
Monday, right after posting my little list of miracles, KayTar woke up with a nasty cough and trouble breathing. What cold is complete with a little asthmatic bronchial involvement? I kept her home Monday because I couldn't control the cough even with the cough suppressant and her inhaler. Tuesday she seemed a bit better, so we went to therapy and school. Yesterday, she spiked a fever. The pediatrician wanted to see her, so we went in. After talking the pediatrician's ear off (she loves a captive audience), she was given a mostly clean bill of health. Clear lungs, ears, throat. Just remnants of the nasty cold.
The rest of the evening was fairly normal. Dinner. KayTar's feed. Cough medication. Playing. BubTar's bath. Same old, same old. Josh went out to run an errand and on his way back his picked up treats from Dairy Queen. I had a cookie dough Blizzard, but it was way too doughy for me and I only ate a few bites of it. KayTar was interested in it, so I gave her a few bites of the ice cream portion. A little while later, Josh, KayTar, and I were all in the bedroom. I was about to pull her up onto the bed to cuddle with us when she gagged once. Then she vomited. Projectile vomited, EVERYWHERE. We waited for her to finish, then stripped her down. I dunked her in the tub, Josh cleaned the mess. I dosed her with Zofran. (I actually thought maybe the puking was a sign that maybe she had a GI bug which was causing the new-onset fever) We jammied her and tucked her into bed with us to watch TV. I looked over and saw her rubbing her lip and got her some Chapstick (the same kind she's been using for months now) and handed it to her. She put it on and handed it back. I noticed she was still messing with her lip. Then she sat up and I saw it.
I sent the pediatrician a quick email. I wanted to make sure I could give Benadryl in conjunction with the meds she had already taken (dextromethorphan, Zofran), but it was late and she understandably didn't answer. I found a drug interaction checker online and put her meds in and got the virtual green light. It was still swelling, so I went ahead and gave it. Then I waited. About an hour later, her top lip swelled up, too!
Then, I was freaked out. I'd given Benadryl and she was still swelling up and it was QUITE close to her airway. I kept making her show me her tongue to make sure it wasn't swelling, but after she fell asleep, I couldn't check it any longer. I called the pediatrician's on call service. They tried to wake the nurse and couldn't. They connected me to a different nurse instead. She wasn't very helpful. She told me exactly what I was already thinking. We could stay put, wait it out, and possibly get into a bad position if the swelling affected her airway...or we could go in, possibly unnecessarily, and be in the ER for hours. After hemming and hawing, I decided to go in. I usually try to stay home at all costs, but this has never happened and I was too concerned about her airway to get any sleep anyway. I sent the pediatrician another email to let her know we were going to go in as I was getting ready and she replied. (Yes, my pediatrician is awesome and returns emails at 2 in the morning.) She said we could stay home, give more Benadryl in a little while, and if she wasn't actively swelling and her airway was okay, I could get some rest. If the swelling didn't stop progressing, we needed to go in.
After the Benadryl, I watched her for a bit and the swelling didn't seem to be increasing, so I tucked her in with me. (Sorry Josh, back to the land of fairies and flowers for you, sir.) I checked her periodically through the night and she made it through just fine. This morning there is some residual swelling, but not like last night.
The only new thing she was exposed to yesterday was the Blizzard from Dairy Queen, so that must have triggered it. Maybe the vomiting was actually the beginning of the allergic reaction, rather than a separate illness-related event. Maybe the Blizzard had peanut traces in it that she reacted to, though, she's never reacted to peanuts/peanut butter before. I really have no idea, but I definitely do not want to expose her to whatever caused it again. The pediatrician wants to test her for a peanut allergy, but in the meantime we will steer clear just in case and keep the Benadryl on hand. That is not an experience I want to duplicate!
Angelina Jolie called, she wants her lips back.
The rest of the evening was fairly normal. Dinner. KayTar's feed. Cough medication. Playing. BubTar's bath. Same old, same old. Josh went out to run an errand and on his way back his picked up treats from Dairy Queen. I had a cookie dough Blizzard, but it was way too doughy for me and I only ate a few bites of it. KayTar was interested in it, so I gave her a few bites of the ice cream portion. A little while later, Josh, KayTar, and I were all in the bedroom. I was about to pull her up onto the bed to cuddle with us when she gagged once. Then she vomited. Projectile vomited, EVERYWHERE. We waited for her to finish, then stripped her down. I dunked her in the tub, Josh cleaned the mess. I dosed her with Zofran. (I actually thought maybe the puking was a sign that maybe she had a GI bug which was causing the new-onset fever) We jammied her and tucked her into bed with us to watch TV. I looked over and saw her rubbing her lip and got her some Chapstick (the same kind she's been using for months now) and handed it to her. She put it on and handed it back. I noticed she was still messing with her lip. Then she sat up and I saw it.
I sent the pediatrician a quick email. I wanted to make sure I could give Benadryl in conjunction with the meds she had already taken (dextromethorphan, Zofran), but it was late and she understandably didn't answer. I found a drug interaction checker online and put her meds in and got the virtual green light. It was still swelling, so I went ahead and gave it. Then I waited. About an hour later, her top lip swelled up, too!
Then, I was freaked out. I'd given Benadryl and she was still swelling up and it was QUITE close to her airway. I kept making her show me her tongue to make sure it wasn't swelling, but after she fell asleep, I couldn't check it any longer. I called the pediatrician's on call service. They tried to wake the nurse and couldn't. They connected me to a different nurse instead. She wasn't very helpful. She told me exactly what I was already thinking. We could stay put, wait it out, and possibly get into a bad position if the swelling affected her airway...or we could go in, possibly unnecessarily, and be in the ER for hours. After hemming and hawing, I decided to go in. I usually try to stay home at all costs, but this has never happened and I was too concerned about her airway to get any sleep anyway. I sent the pediatrician another email to let her know we were going to go in as I was getting ready and she replied. (Yes, my pediatrician is awesome and returns emails at 2 in the morning.) She said we could stay home, give more Benadryl in a little while, and if she wasn't actively swelling and her airway was okay, I could get some rest. If the swelling didn't stop progressing, we needed to go in.
After the Benadryl, I watched her for a bit and the swelling didn't seem to be increasing, so I tucked her in with me. (Sorry Josh, back to the land of fairies and flowers for you, sir.) I checked her periodically through the night and she made it through just fine. This morning there is some residual swelling, but not like last night.
The only new thing she was exposed to yesterday was the Blizzard from Dairy Queen, so that must have triggered it. Maybe the vomiting was actually the beginning of the allergic reaction, rather than a separate illness-related event. Maybe the Blizzard had peanut traces in it that she reacted to, though, she's never reacted to peanuts/peanut butter before. I really have no idea, but I definitely do not want to expose her to whatever caused it again. The pediatrician wants to test her for a peanut allergy, but in the meantime we will steer clear just in case and keep the Benadryl on hand. That is not an experience I want to duplicate!
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