Back on track

Megan is getting back on track and doing fine with peanut again. Since desensitization is fairly new in treating anaphylactic food allergies protocols are constantly having to be evaluated and re-evaluated, changed and tested. Not everyone fits the same mold.

What works for one doesn't always work for another

What works for one doesn't always work for another. Megan is having some issues with her peanut. She is starting to react to peanut again. It is not severe enough to need EPI but still a reaction. Dr. Wasserman said this has happened in a few cases before post desensitization. They recently changed peanut protocol and said that once daily dosing was enough for the three months following desensitization. For Megan this is not working. She was doing fine on the two doses a day and started having issues only when we went to the one dose a day. Hopefully this is only a hiccup in the road and her body just needs more time with higher doses of peanut before decreasing. Dr. Wasserman said that he felt confident that once Megan gets back up to the 8 peanuts twice a day she will be just fine again. On a positive note, her peanut number did decrease over 50%.

Update

Megan went this week to get her one month post RAST peanuts level drawn. Next Tuesday she will go back to see Dr. Wasserman for her post desensitization appointment.

In a good place

Megan continues to do well with her maintenance of peanut. She eats peanut clusters containing 8 peanuts each twice a day. I crush her peanut and then mix it with melted chocolate and freeze them. Once in awhile Megan will crack a peanut or two to eat. She is slowly acquiring a taste for peanut which I am very thankful for. In about a week we will go get her RAST peanut level tested to see where it is. Megan had an anaphylactic reaction last week to tree nut. Not sure which one as sometimes it is hard to know but always a constant reminder of how delicate live is when living with anaphylaxis.

Where we go from here

In a month we will go get Megan's peanut RAST test done. I will be very curious to see how far down her numbers have gone. She will then have a follow up appointment to discuss her numbers and to see how things are going. It is going to be so nice not to have weekly appointments.

PEANUT DESENSITIZATION GRADUATE!!!!!!

Megan is officially a peanut desensitization graduate!!!! Today Megan did her 24 peanut challenge and passed with flying colors. It is truly amazing. And just to think that 6 months ago just trace amounts of peanut or touching peanuts would cause a severe anaphylactic reaction. Megan will now go down to the peanut maintenance dose of 8 peanuts morning and night for 3 months and then 8 peanut once a day thereafter. Thank you Dr. Wasserman for changing Megan's life and making it safer.

12+12=24!!

That is right, 24 peanuts a day. Megan DOES NOT LIKE PEANUTS AT ALL!!!!! After trying just about everything to make eating the peanuts more pleasant we have a winner. First I crush the peanuts finely until it is the consistency of peanut butter. I then roll it in a ball and make it as compact as possible. Next I dip it in lots of melted "safe" chocolate and put it in the freezer. Instead of fighting her to eat her peanut she downs it in under 30 seconds!!!!

Happy Dance!!!!!!

Happy Dance, Happy Dance, I am doing the Happy Dance!!!!!!!! Tomorrow Megan moves up to the 12 peanut dose. After this week she is DONE with her peanut desensitization!!!!!!!!!! Next week she will go back for a 24 peanut challenge and then on to maintenance. I am still in awe that she is eating peanuts. In one year we have accomplished making Megan's life safer, first with egg and now peanut.

Ugh, Ugh, Ugh

You either like/love peanuts or you dislike/hate peanuts. Megan would fall into the second category, LOL. I hope that over time she acquires a tolerance for the taste. Guessing she will never really like/love them but one could only hope. My arms are getting a work out twice a day from grinding her peanuts down, LOL.

10 peanuts!!!

Yesterday Megan dosed up to ten peanuts, amazing isn't it!!! Next week she will move to 12 peanuts and then the following week she will do an in office challenge of 24 peanuts. We are on the homestretch. It is so hard to believe that in a year Megan has completed two desensitizations making her life not so scary anymore.

Tomorrow is 10 peanuts!!!!!

I crushed Megan's TEN peanuts with a mortal and pestle until they were pretty much peanut butter consistency. I have started adding either honey or Enjoy Life chocolate chips and Megan seems to tolerate the "nasty peanuts" as she calls them, LOL. It is hard to believe but also so amazing that in two weeks Megan will have completed PEANUT DESENSITIZATION!!!!!!! The rest of the family has enjoyed having real peanut butter again, cheese and peanut butter crackers, candy with chocolate, ect..

MEGAN HATES PEANUT!!!!!!

Megan HATES peanut and it is sometimes very challenging to get her to take her twice daily dose. I have tried every way to making it more palatable but now that she is up to 8 peanuts per dosing it is getting more and more challenging. To condense her peanuts I have found that using a mortar and pestle and grinding it to peanut butter consistency works the best. Add a couple of chocolate chips and pray, LOL. How ironic that the foods that Megan is allergic to she hates and has aversions too. The body is truly amazing how it tries to protect a person from known allergies. Megan finished egg desensitization and HATES egg too. It is wonderful that we can use egg white powder mixed in pudding to get in her daily dose of egg.

A link to Dallas Allergy Immunology Newsletter

Dr. Wasserman's office puts out a newsletter and the current newsletter lists OIT information. http://app.cooleremail.com/v.pl?12be719003de7a55c526520b6b1472fa159e9b634eddb5c7

Eight PEANUTS

Today Megan dosed up to 8 peanuts!!! That is a whooping total of 16 peanuts a day, WOW!!

Human error

I somehow miscounted out Megan's peanuts when making her peanut clusters and instead of the 6 peanuts I accidentally counted out 7. So this past week she has been getting 7 peanuts instead of 6. Not a mistake that I am proud of but it happened.

Increasingly more difficult as we go

It is getting increasingly more difficult to get in the amount of peanut that Megan needs to eat every day for desensitization. Tonight I decided to crush up her peanut for tomorrows new dose up to see how it goes. The peanut clusters are getting larger and larger each week. I am thinking about taking the crushed up peanuts and Hershey's syrup and give it a go. I will have to say that peanut desensitization is much more difficult and the egg desensitization was due to the quantity factor. If I had one peice of advice for those thinking about desensitization when dealing with multiple anaphylactic food allergies my advice would be to start with something other than peanut because IMO it is so much more taxing than the egg ever was.

Texas Roadhouse

Today we went to Texas Roadhouse for the first time since Megan was a couple of months old. If you are not familiar with Texas Roadhouse, they have peanuts in the shell and after you eat them you throw the shells on the ground. Texas Roadhouse has been a forbidden restaurant due to the PEANUTS!!! It is Birthday season in our house and in past years we would celebrate at Texas Roadhouse. Megan did not touch or eat the peanuts but was around them and had no issues, AMAZING!!!! It was an evening of double cheers because not only was she around peanuts but she also enjoyed a salad with hard boiled eggs in it. This is something she could not have done last year but thanks to egg desensitization she could eat the salad. MEGAN STANDING ON PEANUT SHELLS

SIX PEANUTS

Well, it is Friday again and that means it is dose up day!! Megan is now at 6 peanuts. We are at the half way mark with regards to the number of peanuts per dose!!! After this week we will only have FOUR MORE WEEKS (7 peanuts, 8 peanuts, 10 peanuts and then 12 peanuts). Mommy is doing the happy dance.

Today is Friday so that means

It is dose up day. Today Megan moved up to 5 peanuts two times a day. Tonight I mixed Megan's 1 tsp of peanut butter along with her 1 Tbsp of egg powder that she also has to take in order to maintain her egg desensitization. I used chocolate pudding and it smelled so good. Megan was not liking the peanut butter taste all that well. She asked me if I would make more peanut clusters instead. She told me to make sure that all of the peanuts were covered with chocolate because she doesn't like to see the peanuts, LOL. I guess I will be stocking up on Enjoy Life chocolate chips. We are only at 5 peanuts I can't imagine how this is going to go down when she has to do 12 peanuts twice a day, WOWZERS!!!

One peanut at a time

This week I bought Megan her FIRST JAR OF PEANUT BUTTER!!! She has the option of dosing with peanut butter that is carefully measured out. There are only a couple of brands that are nut free so I went with Peanut Butter & Co. One tsp of peanut butter = 5 peanuts. This Friday Megan will be moving up to FIVE PEANUTS!!! Right now Megan is enjoying her homemade peanut clusters that I made her. As she increases the amount of peanut we will probably have to stick with either peanut butter or peanut powder until she reaches maintenance. Just to recap, Megan's upcoming dose increases are as follows: 5 peanuts twice daily, 6 peanuts twice daily, 7 peanuts twice daily, 8 peanuts twice daily, 10 peanuts twice daily, 12 peanuts twice daily!!! In a bit over 6 weeks Megan will be done with her PEANUT DESENSITIZATION!!!!!!!

Megan is up to 4 peanuts!!!

Today Megan moved up to the 4 peanut dose. She is doing great and has had no issues with her dosings.

Three, 3, III.......

Today Megan is up to the three peanut dose for a total of six peanuts a day!!!

Add in some chocolate and you have...........

Megan has decided that she is not too fond of peanuts. I am having to resort to more creative means to get in her twice a day peanut dose. She tends to be a bit of a chipmunk storing the peanuts in her cheeks and then taking too long to chew them up. Today I decided to melt some Enjoy Life chocolate chips and make peanut clusters. I counted out the peanuts and put them on waxed paper and spooned the chocolate onto the peanuts. Who doesn't like chocolate and peanuts!!!! If for some reason my child is strange, LOL, and doesn't like the peanut/chocolate combo then I will move onto a mortar and pestle and grind up her peanut and add it into pudding or something else.

Back to PEANUT FLOUR

After consulting with Dr. Wasserman's office we have decided to go with peanut flour for now in order to get in our peanut doses twice a day. Time to stock up on more chocolate pudding, LOL. Megan currently uses chocolate pudding at night when she doses with her egg powder that she needs to maintain her desensitization for egg. We will need to purchase peanut flour from Byrdmill.com.

Peanut War

Megan has decided that she does not want to eat her peanuts. She hoards them in her mouth chewing and chewing and chewing and chewing. Instead of dosing with peanuts we will move to either peanut flour that can be mixed into pudding or dose with a nut free peanut butter. If Megan was nut safe she could dose with peanut M&M's but that is not an option.

Back up to two peanuts again!!

After our disappointing and very scary setback last week today Megan increased back up to two peanuts again. I will say that it is hard for me to not think about the four peanuts that she would be at this week if it were not for what happened last week. I try to keep in mind that this is a process that sometimes has bumps in the road.

Shelling peanuts

It seems so crazy in my mind that I am actually shelling peanuts. I would have never imagined a couple of years ago that I would be doing this. Because Megan has tree nut allergies, in addition to her peanut allergy, she is only allowed to use peanuts from the shell for desensitization and after. Megan will be unable to eat many products with peanuts in them due to cross contamination with tree nuts after she finishes desensitization. But the HUGE upside is that she will be safe around peanuts!!!!!

One peanut is better than none!!

As I have been sulking about Megan decreasing from three peanuts back down to one I realized how silly I was being. Good grief, my child is eating a PEANUT!!!!!!!! I never imagined her eating peanut and so the fact that she is even eating one peanut is amazing.

Two steps back...

Megan is still in the hospital but if all goes well this morning then Dr. Wasserman has written orders for her to go home. Dr. Wasserman decided that with all that has happened Megan needed to be bumped back down to one peanut twice a day. Though this is disappointing I'd rather be play safe so one peanut it is. Megan's asthma is still not under control so she is having to do breathing treatments every four hours and is on steroids.

A bump in the road......

After dosing Megan is supposed to avoid exercise and do quiet activities for two hours. Well, last night after about an hour and fifteen minutes she went outside to play with friends. The combination of being outside (pollens) and supervised activity where she was a bit active put Megan's system over the edge. Being "a bit" active inside does not seem to be an issue. It is so hard to keep Megan the monkey still for two hours. She had a significant anaphylactic reaction. She ended up having to be admitted to the hospital due to asthma issues from the reaction. Megan has been doing so well with peanut desensitization and we will try to focus on that. It was an ugly reminder of how severe food allergies can be. This reaction made us even more thankful for desensitization and what it will mean for her IN THE END. It has been a heartbreaking set back and very scary. Megan will decrease her peanut amount so that her system is not overtaxed.

ROCK AND ROLL......

Megan is now up to 3 peanuts twice a day!!!!!!!!!!

Moving along!!!

Tomorrow Megan will move up to 3 peanuts twice a day!!!! I can hardly believe it. In 8 weeks she will be done with her PEANUT DESENSITIZATION!!! This week is 3 peanuts then in the coming weeks 4, 5, 6, 7, 8, 10 and finally 12 peanuts.

Peanuts, peanuts and more peanuts!!

Today Megan moved up to 2 peanuts twice a day.

Megan ate a PEANUT!!!!

Megan has finally made the jump from peanut flour to peanuts.

Megan not sure what to think about holding a bag of peanuts for the first time.

Megan looking at her peanut. About to eat my first ever PEANUT!!!!

Hmm, I can't believe I am going to eat a peanut.

Some of Dr. Wasserman's oral desensitization patients that have graduated (completed) desensitization.

Last peanut flour dose!!!

Tonight is the last dose of peanut via peanut flour. Tomorrow she moves up to PEANUTS!!!!!!

Tomorrow is a HUGE milestone

Tomorrow is A VERY BIG DAY for Megan!!!!!! Tomorrow Megan eats ONE WHOLE PEANUT!!!!!!!!!!!!!!!! I am so excited. I can hardly believe that this is actually real, pinch me. I will be taking LOTS OF PICTURES FOR THIS BIG EVENT.

Peanut flour

Peanut flour doses of 50mg, 100mg, 175mg, 250mg and 500mg!! Dr. Wasserman has the peanut flour precisely measured out and put into capsule form by a compounding pharmacy so that each and every dose that is taken is the exact amount.

Last week of peanut flour!!!

This week Megan moved up to 500mg of peanut flour. Next week she will start eating peanuts!!!!!!! She will start with 1 peanut and move her way to more each week. I am so very excited for Megan and what this means for her life.

Dose up time

Yesterday Megan went for her every 7 day dose up. She is now taking 250mg of peanut flour. After this week she will have one more week of peanut flour at 500mg and then we are on to the real deal thing, PEANUTS!!! Megan is very excited about this. She is not too fond of the peanut flour. We mix the flour with Hershey's Syrup. But even with the syrup she always has a "shiver of, this is gross" when she takes it. If all continues to go well Megan will finish her peanut desensitization the beginning of August. It is amazing that in one year she will have completed both egg and peanut desensitization. Truly amazing!!! When Megan was first diagnosed I would never have thought that DESENSITIZATION was a possibility. Actually, I had never even heard of it. I am so very grateful for advancements in medicine and to those few doctors willing to embark in such endeavors despite much of the medical community still not in agreement with food desensitization.

Dosing up again

Yesterday Megan dosed up to 175mg of peanut powder. I am so very thankful for each week that she gets behind her. Before we know it she will be moving up to eating peanuts!!!! Desensitization has changed Megan's life in so many ways. Not only does she not have to fear death from peanut but she will be adding one more food into her diet.

Today was dose up day!!!

Today Megan moved up to 100mg of peanut flour. She is doing great!!!!

Moving to peanut flour

This week Megan moved to peanut flour in capsules. She is now at 50mg of peanut flour. Next week she will increase to 100mg followed by 175mg, 250mg and then finally 500mg. After that point, we will move to eating PEANUTS!!!! Twice a day we open the premeasured peanut flour capsules and mix it with something yummy. Right now since it is a fairly small amount, Hershey's syrup works great. Megan continues to remain reaction free since starting. I was a bit concerned this week with how she would do because her allergies are flaring a bit, thanks to the wonderful pollen counts, but so far it does not seem to be affecting how she tolerates the peanut.

Peanut Flour

This week when Megan doses up she will get peanut flour capsules instead of the peanut liquid solution. The peanut flour can be mixed with foods such as pudding, applesauce, ect.. Every day that I dose her I am in disbelief that she is actually eating peanut. The amount may be small at this point but it is still PEANUT!!!

Today was dose up day again!!!

This week Megan will increase to 2ml of the 25mg/ml solution.

Doing great!!!

Megan is sailing along with her PEANUT DESENSITIZATION!! She is having no issues reaction wise and each day brings her a bit closer to our final goal, PEANUTS. Megan will go in again this Friday to dose up.

Dallas Allergy Immunology Graduating Inforamtion on Food Desensitization

THIS INFORMATION WAS TAKEN FROM DALLASALLERGY.NET


Oral Immunotherapy Graduating Classes


Due to safety reasons, we are not posting pictures or names of the individuals that have graduated from the food oral immunotherapy program. However, we would like to share the number of individuals that have successfully graduated from our program. If your child has a food allergy, and you are interested in speaking to the parent of a child that has completed our food oral immunotherapy program, please contact our office at 972-566-7788. We will be happy to connect you for more details on our program from a patient/parent point of view.

GRADUATING CLASS OF 2012:
Milk -
Egg -
Peanut -
Wheat -
Cashew -

GRADUATING CLASS OF 2011:
Milk – 13
Egg – 7
Peanut – 22
Wheat – 2
Cashew – 1

GRADUATING CLASS OF 2010:
Milk – 11
Egg – 4
Peanut – 30
Wheat – 1

GRADUATING CLASS OF 2009:
Milk – 10
Egg – 7
Peanut – 15

GRADUATING CLASS OF 2008:
Milk – 1
Egg - 4

Peanut Talk

Today was dose up day!!!

Today Megan went in for her next dose increase. This week Megan will be getting lml of the 25mg/ml solution. The desensitization process for peanut is a bit shorter than it was for the egg. After this week Megan will have one more week using the peanut/water mixture and then she will move up to using peanut flour!!!! Amazing. It is exciting and hard to believe that if all goes well, in 17 weeks from now Megan will be totally desensitized to PEANUT!!!

Tonight when dosing Megan decided to smell her peanut solution and IT SMELLED LIKE PEANUT!!! I was not expecting it to be that potent yet but WOW!!!!

And the ants go marching on.....

Megan is moving right along with her peanut desensitization. She is doing GREAT, WONDERFUL, STUPENDOUS. Megan has had no reactions with her doses so far and will go this Friday to get her next dose increase. Another week closer to having peanut.

This weeks dose

Megan will maintain at the dose for 7 days before we go back to Dr. Wasserman's for a dose increase. Since the peanut amount is so small for the beginning weeks it is mixed with water and usually Kool-aid to make it more enjoyable for children to take. There is such a difference between our first experience with egg desensitization an now peanut. I honestly was terrified, paranoid and worried about reactions the first time through. This time around I am more relaxed and confident. I know that DESENSITIZATION works and am grateful that Megan is able to take advantage of such a life saving program.

Egg and Peanut

Megan has already successfully completed egg desensitization with Dr. Wasserman. In addition to dosing with peanut twice a day, in order to maintain her desensitization to egg, Megan has to dose with 1 Tbsp of egg white powder every evening. You may wonder why egg powder and not just egg, well the answer boils down to protein issues. As egg is cooked or baked the protein is denatured and so it would vary too much on a day by day basis to just use eggs in baking or eating eggs scrambled, fried, ect.. Megan is able to eat as much egg as she wishes. For those interested here is a link to Megan's egg desensitization blog
http://eggdesensitization.blogspot.com/

An Early Morning

Since Megan's last dose yesterday was at 3:10pm I had to wake Megan up before 6am this morning in order to dose her in the window of time given. Doses have to be given no earlier than 9 hours after the last dose and no longer than 15 hours after the last dose. After the one hour observation time I let Megan go back to bed and sleep.

In order to remember when doses are given I use a small dry erase board. You would be amazed but with the craziness of the day it is very easy to forget when you gave the last dose.

Megan's story

Part 1 Megan was born a healthy and happy baby. When she started eating solids I noticed that something was different but could not put my finger on it. Every once in a while she would eat and an hour or so later she would throw up, get really sleepy and act strange. The doctor's kept on saying that she just had reflux but my mother's intuition knew better. After our experience with her older sister I knew that what we were dealing with wasn't reflux. Around 10 months old we fed Megan eggs and within about a half hour she violently started throwing up. She was lethargic and felt horrible. Her second experience with eggs was a repeat of the first. She ate some of a breakfast sandwich that I had and about an hour later she violently started throwing, got lethargic, and fell asleep. I took her to the doctor and asked for a blood RAST test for eggs. I told the pediatrician that I suspected an egg allergy. Not only did the pediatrician run a RAST test for eggs but she also tested for the other seven top food allergies. When the results came back we found out that Megan was anaphylactic to both eggs and peanut/nut. We were in shock. I called our allergist and asked what we should do. He said to make an appointment to bring her in to discuss the situation. When we went in to the allergist he further explained the severity of Megan's food allergies. We would have to make sure that Megan never got egg or peanut/nut in anything she ate. She was prescribed Epi-Pen Jr's and we were given a brief education in the use of the Epi-Pen and when to use it. I spent may weeks in shock and crying. Our lives forever changed. With each exposure her reactions increased in severity. Reactions now cause hives, face and eye swelling, breathing issues, vomiting, a sense of doom, ect. She has gone from ingested only reactions to contact touch reactions and airborne reactions. Part 2 Our daughter Megan was diagnosed with anaphylactic food allergies right around her first birthday. Originally I knew that egg was a possible problem but when her blood tests came back I received the dreaded call telling me that not only was Megan very allergic to egg but she was also very allergic to peanuts and tree nuts. As a parent I was devastated with this news. Though I was devastated I was also very grateful to know what we were dealing with. Megan's first experience with peanut was around 1 1/2 years of age. Megan's reactions are not only from ingestion of peanut but also from contact with peanut. Symptoms included violent vomiting(if it was ingestion), getting very tired, eye swelling, hives, breathing issues. While still in the learning curve stage I gave Megan plain M&M's once and only after sustaining a reaction realized cross contamination was a huge issue that always had to be thought about. I cringe when I think back to those experiences as I know how bad things really could have turned out for her. Upon diagnosis, Megan was prescribed Epi-Pens from her allergist and we were sent on our way in a daze with so many unanswered questions. I knew nothing about food allergies and was soon on a mission to figure out how to protect and keep Megan safe. I began searching the internet, reading books and navigating my way through living a life with food allergies. As a mother I feared for Megan and was scared every time I fed her wondering if she was going to be okay. I wiped down every surface, read every label and constantly watched Megan for signs of reactions. The first year I struggled with dealing with the diagnosis. Eventually I learned that I could not let food allergies define who Megan was, but rather it was just a part of who Megan now was. She was still the same child just a bit more special now. Over the years Megan has had her share of reactions that have required epinephrine and ER visits. We have had our ups and downs. When Megan was around two years old her allergist, Dr. Richard Wasserman, was beginning food desensitization with some of his patients. I was very curious but Megan was not old enough to qualify. She would have to wait. We patiently waited and when Megan's 5th birthday rolled around she finally qualified for the desensitization process. At this point we had to decide which food we wanted to do first. Because Megan is anaphylactic to both peanuts and tree nuts we decided to start with egg. So began our journey. Now that egg desensitization is done and behind us we are on to peanut!!!!

Day 1

Today Megan is starting peanut desensitization. Megan is severely allergic to peanuts as well as tree nuts. I am excited about this journey as we work our way towards making peanut not a potentially deadly food for Megan anymore. I am so grateful to Dr. Wasserman and his staff for their work in food desensitization. http://dallasallergy.net/
Angela the PA examining Megan before she starts her peanut desensitization.

Megan being silly.

Megan's first peanut dose of the day. She starts out with 1ml of a 2.5mcg/ml solution.

Today if all goes well Megan will have a total of 25 doses of peanut solution. Her first dose is 1ml of a 2.5mcg/ml solution and her last dose will be 6ml of 2.5mg/ml solution.
Megan successfully completed the whole first day of desensitization without any reactions!!!!!! Tomorrow she will start her twice a day dosing.

Here we go again....

Megan has successfully finished egg desensitization and soon we will move onto PEANUT DESENSITIZATION later this month!!! More to come soon.