Wednesday, December 23, 2015

2015 Year End Update

 
Merry Christmas, Happy Holidays and Happy New Year! That should cover it right? I hope everyone is doing well. We've had a busy but also a really good year.

I haven't posted any updates in quite a while-since the summer.  I definitely had good intentions but our family is involved in so many activities and I'm not the greatest time manager! I always post a lot of pics and updates on Facebook because it's much faster and easier to make a quick post there, so if you are interested in keeping up with us and getting more regular updates, you can follow that page here. PBJ Facebook

So, allergy-wise, Matthew is doing very well. If you'll remember in June he had his study unblinding and after a double blind placebo controlled peanut challenge to which Matthew had a bad allergic reaction, we were told that he had been on the placebo patch for the year.



At that point he was switched over to the high dose patch which he will wear for a year and then get more testing to evaluate whether he is still allergic to peanuts and if so to what level. With the new patch he gets an obvious raised, red itchy circle on his arm every day and I love it because I'm hopeful that means it's working! After 6 months of wearing the patch, Matthew says that the redness and itchiness are much less pronounced than in the beginning. Another good sign!:)



This fall at his appointment in Baltimore Matthew had blood work drawn to check for chickpea and tree nut allergies. I had made a chocolate chickpea muffin while trying to eat healthier this year (it didn't last), and when Matt took a bite he said "What's in this? It feels like I ate a peanut!". He did not have any further reactions but it warranted deeper investigation. He had no idea that chickpeas were in the same legume family as peanuts but apparently legume reactions are not uncommon with peanut allergies.



His blood work was mildly positive for chickpeas, pistachios, cashew and hazelnuts. His doctor didn't feel like he needed strict avoidance to chickpeas, but would probably want to avoid because of his discomfort eating them. He also suggested a food challenge to hazelnut and offered to fit us in for an appointment which was super nice considering his busy schedule but I opted to find a local allergist and have it done closer to home which I haven't done yet. He felt the pistachio and cashew levels were low enough to just try at home. I haven't done that yet either! Haha. They are on my mom mental to-do list: you know the one that never ends and runs around your head at night when you are trying to sleep?! That list.

My biggest allergy related issue right now is my son's teenage-ness! He is getting a little bit complacent and probably has some of that adolescent invincibility syndrome.  We were at church recently and he looked at the treats on the welcome table and asked if I could taste one and see if it had peanuts. What?! I said "Matthew you know you cant eat something unless you ask the person who made it or can read the label!'. He actually continued to give me a hard time until I said "Son, you are terrifying me right now! You are going to be out on your own soon and you have to know what to do!!!". Ugh.

I'm also trying to get him to self carry. I had his doctor and nurse sign consent for him to carry his Epipen at school but that was the easy part! The hard part is getting him to remember to take it every day. Now that he is traveling with high school sport teams and eating on the road more often we really need to be more vigilant about making him independent with his food allergy. It's a work in progress.

All of our kids are keeping us super busy with sports. Some days we feel like all we do is pick up and drop of children! Ryan and Matthew both played football and are now wrestling. Matt's doing wonderfully as a wrestler! He has won most of his matches so far. He's very dedicated! It helps that he absolutely hates to lose! I mean, more than most people. He could lose at Chutes and Ladders with a five year old and bitterly complain the game was rigged while throwing his game pieces off the board. I'm only slightly exaggerating!
 

 Jessica rides horses and does gymnastics and we're very proud of her too! She has no fear! A quality that seems to be very important for both sports as she is riding an animal 10x her size and then also leaping and flipping all around in gymnastics.
 

Dave and I are just enjoying our crazy busy life. Running kids around, working and both in graduate school. But we do enjoy it! One thing I have learned is that you have to stop waiting for life to slow down, and start loving all the moments among the busyness. Once a month or so while the kids are in school and we are both off we head to Annapolis, MD for a date and eat and go shopping and finish a whole sentence without kids interrupting! Those are some of the best days!
 

I hope that you have had a good year too. Until the next time, have a great New Year and stay safe!







Friday, July 31, 2015

Told You So!


I hate to say I told you so but, I told you so! All throughout the year we have suspected our 14yo son Matthew was on the placebo peanut allergy patch, rather than the low dose (100mcg) or high dose (250mcg) patch. We found out this week that he has indeed been on the placebo. I would have loved to have been proven wrong because then maybe he wouldn't be allergic to peanuts anymore! The good news is that this is a three year clinical trial with a placebo crossover, meaning that now he will get the high dose patch for the rest of the year (There is no placebo group for the rest of this trial).

This week marked the one year point of Matthew's clinical trial and the week the study would be "unblinded". He also needed his annual oral food challenge. This food challenge is double blind placebo controlled which means that neither ourselves nor the nurse and doctor caring for Matthew knew which day he was given actual peanuts and which day was an oat placebo. It became pretty obvious on the second day that he was eating peanuts when he blew up like a puffer fish after taking several doses. I told him he looked like Will Smith in Hitch!


For the oral challenge, either peanut or oat powder (if placebo) were mixed into pudding . There are other foods to choose from, like meat sauce, to have as a base for the test. I think that sounds kind of weird but some kids choose that! Matthew is rethinking his choice of chocolate pudding because he hates the food challenges so much that he now loathes all pudding. 


He received increasing doses of peanut in 9 doses each 15 minutes apart. Day one, Matthew was able to take all the doses. He felt a little itchy all over that day which the doctor says is not unusual. People can have placebo effects of itching and even hives just from the thought of eating their allergen.

Day two, Matthew's throat and mouth were itchy and burning from dose one. It became increasingly worse over the next few doses and he was drinking a ton of water. Dose four he got chills and dose five he got a stomach ache. He said, as he's said other times he's eaten peanuts accidentally, "I can't tell if it hurts because I'm hungry or something else" so they gave him some pretzels to eat. I really want parents to take note of this part, because if you think your child may have eaten their allergen and then they say their stomach hurts and thinks it's hunger pain this might be a red flag. Each child's reactions are different but this is something Matthew has consistently said to me early in a reaction and something I've read that other kids have experienced as well.

Over the next fifteen minutes Matthew said his stomach pain was getting worse but he went ahead with dose six anyway. Shortly after dose six he was in enough pain that they stopped the test and gave him his epinephrine, oral steroids and Benadryl. He didn't have any swelling or hives at this point and I said "maybe he won't get them this time!" Unfortunately I was wrong. The itching, swelling and hives started shortly after the last dose. Poor guy was miserable! The nurse kept saying, "don't scratch, it makes it worse" but he couldn't help himself. 


Interestingly, the nurse told me she could tell what hives were scratch-induced because they have irregular borders and spontaneous hives are typically more round. At one point I just squeezed his head (head, hands and feet get the itchiest) and pressed on his back and he said that helped a bit.

About thirty minutes later he said he felt that his throat was swelling. The doctor looked in his throat and then ordered another dose of Epinephrine. He also got another dose of Benadryl for the itching. Finally after almost an hour he started to feel some relief. It was really hard to watch my child suffer like this, even just for an hour. I can't imagine having a toddler or preschooler in this same situation. At least with Matthew, he is old enough to understand that this is pain with a purpose.

On the ride home, Matthew was reading some of the Facebook comments from my posts. He noticed that people thank him for what he's doing and tell him he's brave. "You are brave", I said. Then I said "You know, I'm glad that other kids will benefit from this. But I'm doing this to save your life." "Yeah?" he says. "Well, for the record, I'm doing this for all the little kids in the world with food allergies".  He's such a sweetheart! I mean, he's certainly not perfect. In fact, at 14 years old, he can drive me crazy sometimes! But he is a good kid with a great heart.

On the way home he was feeling much better. After 75mg of Benadryl, I couldn't believe that he didn't sleep in the car! We stopped by the Annapolis Mall to get him the very expensive new sneakers that his Nana said she would pay for because of his pain and suffering. By the time he got his shoes he was 100% improved.

Matthew goes back tomorrow (a week from the initial test) to get his new patches. He has to be observed for three hours on this patch and then I will take him back the next day for another observed patch placement, then we will have weekly checkups for a few weeks.

We are very excited about the next year may bring. Thanks for all the support! If anyone has questions, send me a Facebook message. I'd love to hear from you.

Friday, July 3, 2015

Better Luck Next Time!

Matthew has had a rough month! In May he developed Molluscum Contagiosum (little raised skin bumps from a virus) one of which turned into a mass that had to be surgically removed. Then, the last day of school he caught a cold from his brother that knocked him on his butt for almost two weeks. He had a horribly sore throat and high fevers for 10 days. All he could do was lay on the couch and watch TV. He didn't even play his beloved X Box! He also lost five pounds in a week because his throat was too sore to eat.

Ironically, this was the first time Matt was sick all year, and it happened to fall over the week that he was supposed to have his peanut challenge and study unblinding. We had planned to go to Baltimore Monday and stay in a hotel 2 nights to make a little summer vacation out of the long appointment days, but we didn't even try to go Monday because we knew he was too sick.

Tuesday afternoon we packed up and headed out, deciding that we would stay the night in the city and go to Hopkins Wednesday for his appointment and let his allergist make the decision. We checked into our hotel and then walked to the National Aquarium for a few hours. We planned to have dinner at the Inner Harbor, but when we came out the skies were black and we had to run back to our hotel before the huge thunderstorm hit! The kids swam for exactly seven minutes before they had to get out of the pool for lightning. We ate dinner in the hotel restaurant since we were stuck there because of the rainstorm. Jessica and I normally get super excited about staying in hotels, but this room while nice, was pretty tiny for the five of us. Not our best trip ever but we were making the most of it!

On the right, Dave and Ryan are touching the Atlantic Stingray!

The next morning we got ready and drove over to the hospital. Unfortunately, after assessing him, Matthew's allergist felt he was still too sick to have the food challenge and chance an allergic reaction on top of his illness. He was able to have his blood drawn (55ml of blood, about a quarter cup), and his skin prick test. His peanut prick developed a big hive. Matthew looked at it and said, "well...I'm not NOT allergic to peanuts". If you've been keeping up with our story, then you know we have been thinking this patch has been a placebo all along so we will not be surprised at all if he is still allergic. That said, we also know that skin tests are only marginally useful whereas the food challenge is the holy grail of food allergy tests, so I will reserve judgment until it's all complete.  

Matthew playing games to keep his mind off the very itchy hives on his arm.

Playing in the Hopkins playroom. Matthew got his sister this bear from the prize box after his blood draws. It says " I helped Johns Hopkins learn something today!"

After the appointment we wanted to make up for lost time from the night before, so we went to the World Trade Center and up to the "Top of the World" on the 27th floor. It was an absolutely beautiful 360 degree view of the city. Jessica was scared at first but soon Daddy was able to coax her off the bench and over to the viewfinder. After that she was sold. When we were done we took a ride on the paddleboats in the harbor and then had lunch at the Cheesecake Factory (SO good!). 

Our view from the Top of the World: The Aquarium, Federal Hill and the Power Plant.

A few days later Matthew's throat was considerably worse. he could barely open his mouth or talk due to the swelling. I gave him steroids and he started a Zpack and finally started to improve! He was well enough Monday to start his high school football conditioning: weights and running. Next week he goes away to youth group summer camp, and the following week we have rescheduled the food challenges on the 13th and 15th. Praying he stays healthy and we have no more delays!
Next time will not be a vacation since we have work and Matt has football. We'll let you know any updates.

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Sunday, June 21, 2015

Tomorrow is the big day! Maybe...




Tomorrow is the day that we are scheduled to go to Hopkins for the unblinding! That means we will find out if Matthew has been on the placebo or the real peanut patch. We have been anxiously awaiting this moment for a year! We thought it would never come, but here we are. We have said all along that we believe he has been on the placebo, but we will know for sure very soon:).

HOWEVER...Matthew has a cold. He has had a fever of 102 for 4 days and a sore throat and cough. He's been lying around on the couch doing nothing. And by nothing I really mean nothing; he has actually been too sick to even get up and play on his Xbox!

I've been in contact with with the research assistant daily and she says we may not be able to go through with the challenge this week. I believe it's because the sore throat and cough could make an allergic reaction difficult to discern, but it could also be a bad idea to expose him to peanuts with an already compromised immune system. Ugh.

Anyway, here is the plan as it stands: We go to Baltimore Monday and Wednesday all day for the peanut oral challenge. Just like the first time, one day will be a placebo and one day will be actual peanuts. The dosage goes MUCH higher this time.  During the initial food challenge last June, Matt consumed the entire amount of 1044 mg of peanut, or about four peanuts. This time the dosage goes up to 5044mg! That's 21 peanuts, and enough to make any food allergy mama uncomfortable. They will stop the challenge when he starts to have a significant reaction.
They will also draw 55ml of blood (about a quarter cup) so they've told me to make sure he is well hydrated.  

We had planned to make this little science experiment into a vacation again like we did last summer, but I haven't been able to book a hotel yet since I don't know for sure if we are going. I guess we will have to wing it in the morning. We have an annual pass to the aquarium so we'll definitely go there, and then I think we will hit the B&O Railroad Museum too. Of course, all my kids ever require to have fun on a trip is the hotel pool!   

As of now, I just gave the poor guy some Tylenol and tucked him into bed. He still has a fever and is feeling miserable. 

Hoping for a miraculous recovery in the morning!


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Saturday, March 14, 2015

Spring Update

Hello! I hope everyone had a great winter and is enjoying the spring weather. I haven't had an update in a while, mostly because life has been pretty uneventful, which is always good:).

Matthew has been healthy and his peanut patch trial is still going well. He has not had any side effects at all in fact he didn't even have so much as the sniffles this winter. He's just finishing up the wrestling season and he and his little brother have thoroughly enjoyed it! Matt is growing like a weed. He's just one month shy of turning 14 and is almost as tall as his Dad!

Matt and his wrestling coach at his match.


Matthew had his patch checkup in Baltimore last week. Just the usual; vitals signs, height and weight, peak air flow studies, skin assessment and a big old bag of new patches. Our next appointment will be in June for the food challenges and then the unblinding where we will find out if he has been wearing the low dose, high dose or placebo patch. We can't wait to find out!!! We definitely have our money on placebo but time will tell. 

It's been super exciting reading about the patch trials that are being resulted! In the phase 2 trial, 50% of kids wearing the highest dose patch for 12 months showed a significant increase in tolerance to peanuts. That's a huge number in the science world! Here is the link to the company that produces the patch if you'd like to read more:DBV 

We had an accidental peanut exposure a few weeks ago. Dave and Matt were driving home from church in Delaware and were about an hour away. They drove through McDonalds and ordered an Oreo McFlurry as they have a hundred times. Matt took one bite and realized they had given him a peanut butter cup McFlurry instead. He spit it out and said he only swallowed a little. 

Dave called me right away to ask if they should give the Epi and I told him I would call the allergist (he wants to be notified of any exposures and/or Epipen use). Unfortunately I couldn't find his number quickly enough so they just decided to give it. Matt did not have any symptoms at all, but we don't know if that's because they gave the Epi so fast, because he ate so little, or because of the patch.

You might be thinking that we shouldn't order any ice cream from McDonalds since they have peanut butter and you'd be right. Even though they mix each ice cream separately with a clean, disposable spoon, this is just the kind of thing that could go wrong.

Really, I knew we shouldn't, and I had actually voiced this out loud several times, but we felt the risk of cross contamination was pretty slim so we continued to buy them. Also, this used to be a safe food, as they previously only sold M&M and Oreo flavors, with the addition of Reese's being new. As an allergy parent, I hate to keep crossing safe foods off the list of foods he can eat, but lesson learned. We won't make that mistake again!

Our family is planning a vacation to Disney after Easter and we are super excited! We aren't telling the kids until the day we leave, so if you know us personally, keep it on the DL! My Mom has been generous enough to pay for the whole family, and we have an amazing week planned:staying in the Animal Kingdom Villas, eating all of our meals in the park, and getting park hopper passes.  Disney is known for being extremely accommodating with food allergies, as has been our experience on past trips so I'm excited to share all of the details with you. I'm going for purely investigational purposes, you know. Just to find out about food allergies in Disney. It's a tough job, but hey-someone's got to do it!

That's all for now, so until the next time, Happy Spring!

P.S.- I have been absent on social media for a while because I am detoxing and spending time with my family, so I apologize if you have tried to follow one of my sites and have come across a dead link. Working full time, going to school, having kids and being a Pastor's wife keep me super busy and I just needed to cut something for a bit. I do miss being on Facebook, but it has been really refreshing to put my phone down and be more present. I'll be back soon!

Monday, December 15, 2014

Halfway there!



It's Christmas time and that means Matthew has been in his peanut patch clinical trial for half a year now! I'd like to say the time has flown by but actually it seems like we should be further along than six months. We're just so anxious to unblind this study and find out what's going on that it makes the time go slowly!


We still have check ups every two months and just had an appointment on December second. Each visit Matt has peak air flow testing, vitals and a site check. This time he also had blood testing and a scratch test, where they pricked his skin with peanut as well as a control (a histamine that will always cause a hive for comparison) and other common allergens like cockroach and trees.


Matthew had a  moderate skin reaction to the peanut scratch as well as to one of the trees, but our research assistant said not to put too much stock in the skin tests as they have such a high false positive rate. So essentially it didn't really give us any new information.

The arrow points to the peanut reaction



Matt still hasn't had any real symptoms or reactions to the patch as some kids in the study have. His cough, which I was concerned about initially has finally dissipated. This was his first visit where he has been cough-free and his peak air flow numbers where his highest yet.


He has developed keratosis pilaris over the last month which is a fine bumpy rash sometimes (but not always) associated with allergies in the same way that eczema may or may not be caused by allergies. His rash is on the back of his arms and not near the patch site, and his doctor doesn't think it's related.  


We made our next appointment for March, AND we made our two appointments in June for his two food challenges. I'm super excited and also scared for those appointments. 

I'm scared because he had a pretty severe reaction to his first food challenge and this one has a maximum exposure of five times the amount of peanut as the first!


Fear of food challenges has actually caused some parents to decline or drop out of this study. I don't love the idea of intentionally exposing Matthew to something that I know is potentially fatal for him, and he's not wild about it either. However, the greater fear for me would be not taking this opportunity, and having another accidental exposure someday with dire consequences. At least in this circumstance, he'll be exposed to peanuts in a controlled environment in one of the best hospitals in the world.


Of course I'm also excited because he could PASS the food challenge, which would be life changing! And if he doesn't, then hopefully it would be because he's on the placebo or a low dose patch in which case he'll be switched to the highest dose of 250mg for the next year.


Matthew is doing really well all around. Football season finished up in November and now he's in intramural wrestling which he really enjoys. Matthew and his little brother Ryan have loved WWE for years so this is their chance to try their moves on someone besides each other!

Matthew and Ryan warming up at wrestling


Until the next update, we wish you a
Merry Christmas and a Happy New Year!
Matthew making a gingerbread house with his aunt.









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Wednesday, November 26, 2014

Counting Blessings

As I was sitting in church this week listening to a message on thankfulness, my pastor said something I found intriguing . He said, "complainers will always find something to complain about".


I suddenly realized how true this is! We all know someone like this: a Negative Nancy or a Debbie Downer. That person in your life who is always miserable, always grumbling. The one who, when you see her coming near your cubicle causes you dive under the desk because you are afraid to get trapped in her endless tales of woe.


Wah-Wah-Waaah
This revelation has caused me to wonder: am I a Debbie Downer? How about as an allergy parent; do I focus on the negative and ignore the positive? If you are like me, you read more than one blog and follow more than one allergy related Facebook page. You have witnessed parents (and been the parent) complaining about friends, family or teachers who have been less than accommodating or helpful.

Of course it's understandable that we should want to vent a little. When we find a support group of allergy parents, we have found our people! Other parents who actually completely understand our struggles, worries, fears, and frustrations. People who get it.

It's easy to get stuck in a negative rut.


I know I find myself in this rut once in a while. Not just about my kids' allergies, but about everything! Case in point, right after this sermon about being grateful, I went to wash my hands in the bathroom and said, "Ugh. I wish this water was warm!" And then, after I realized the irony of my statement I joked, "I meant to say, I'm so thankful I have this icy cold water to wash my hands with!"

Therefore, in an effort to be more positive and appreciative, here are a few things I am thankful for today, despite all of the frustrations that come along with food allergies.
  1. My son is okay right now. He is not terminally ill or physically disabled. At this moment he is healthy, happy and playing video games as usual.
  2. We have food allergies in an age when there is knowledge, media and support. Twenty years ago, people with food allergies were on their own. Today we have research and advocacy. 
  3. I am lucky that I am a nurse and feel reasonably comfortable administering Epinephrine and handling emergencies. That said, when Matthew had his last severe reaction, I practically hyperventilated. 
  4. I feel fortunate to be in a school where our teachers and administrators have taken food allergies seriously. 
  5. We are lucky and blessed to have our son in a clinical trial where his peanut allergy could possibly be cured within the next few years.

Finally, I am thankful for you: my community of food allergy friends, family and supporters! Have a happy, healthy and blessed Thanksgiving.


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