Food Fear

Food is meant to nourish our bodies, bring us enjoyment, and is a HUGE part of our lives. When certain foods become potentially life threatening, sometimes anxiety, fear, and avoidance become a daily struggle. Megan remembers what it is like to go into anaphylactic shock! Now that this is her reality yet again, anxiety and fear have taken hold. With a handful of food allergies, from severe to anaphylactic, food can become a scary monster. Add in the mix a predisposition to anxiety already and you end up with a train wreck!! After her diagnosis with EoE which resulted in weight loss, nausea, vomiting, and often feeling sick after eating, the problem intensified. Megan is now getting help through several medications as well as weekly therapy to help her cope and deal with her health conditions. I am extremely grateful for a wonderful therapist who is patient, understanding, and knowledgable about the daily struggles that Megan faces. As a mom I cannot change or take away the health problems but I intend to support, empower, and give Megan the tools she needs to fight.

Life continues....

Megan is on a regiment of swallowed Pulmicort to hopefully put into remission her EoE. She will be scoped again in a couple of months to see if her esophagus and stomach look better. That scope will determine which road we will be taking. If her EoE is under control then we are good to go but if her EoE is not better Megan will loose egg. Megan went through Egg Desensitization too. Egg could be contributing to her EoE but at this time we do not know if it is. We have also been told that there is a chance that DIARY may need to be taken out as well. I am really praying that is not the case. Megan already has many dietary limitations due to Celiac Disease and a handful of other food allergies.

Not a good ending.......

Megan has been diagnosed with EoE. She has been dealing with severe GI issues for some time now and last week a scope revealed damage to her esophagus and stomach due to EoE. Biopsy results confirmed EoE. After graduating from peanut desensitization, Megan began having issues with maintaining proper maintenance dosage of daily peanut. Over the years we have had to continually decrease the amount of peanut until we were at 1/2 of a peanut for daily dosing. Maintenance is 8 peanuts. As of today Megan will stop peanut and unfortunately go back to her prior anaphylactic state. Megan has a great deal of anxiety. Life will change again. I will continue to update on how she progresses. At this time Dr. Wasserman is uncertain how long it will take for her body to revert back to her full anaphylactic state. Being that her peanut numbers are still quite high and she was only doing 1/2 of a peanut I am sure it will not be long. Time will tell............

Update Long Overdue....

Megan continues to eat peanuts on a daily basis. For quite some time Megan has not tolerated the whole maintenance dose. She eats 3-4 peanuts a day. If she eats more peanuts she tends to get a bit nauseated and her throat gets itchy for a short time. She HAS NOT had any anaphylactic issues, just minor issues that resolve on their own. Megan still really dislikes peanuts so it does not bother her that she cannot tolerate a lot of peanut. From time to time she will eat a peanut butter and jelly sandwich without issue. Since Megan has other nut allergies she is limited in the peanut area due to cross contamination issues. We stick with peanuts in the shells and tree nut free peanut butter.

An update request...

Megan's peanut desensitization has not been as flawless as her egg desensitization. Off and on Megan has had issues with nausea after her daily dose of peanut. Unlike egg, Megan really does not like the taste of peanut and I really think that is why it has not gone as smooth as egg. But on a positive note, Megan has NOT HAD ONE relapse anaphylactic reaction to peanut since completing her peanut desensitization. Just recently Megan has decided that she likes peanut butter and jelly sandwiches, HUGE SCORE!!! On several occasions she has eaten more than one sandwich. For those like Megan who haven't warmed up to the food desensitized to it is crucial to maintain the 8 peanut a day dosing. For a long stretch Dr. Wasserman was having us decrease her daily maintenance dose due to the nausea and mild mouth itching. Symptoms would always subside and go away within a half hour of dosing. Megan's favorite way to eat her peanuts are with chocolate chips. We don't restrict her in the amount of peanut she eats, rather we just always make sure that she eats the daily required amount. I cannot tell you how grateful we are that Megan's life is not held captive by peanut anymore. Desensitization has definitely changed her/our lives!!!!

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.