No reactions, moving along...

Megan's morning dose of egg mixed with water and kool-aid.

The easiest and best way to keep up with when doses are given.

Megan is doing great with her desensitization.

To the skeptical

To those that question and say, "Should a doctor be dabbling in such an experimental process such as desensitization"? Well, my answer is simple. What in medicine does not start out this way? With medicine nothing is a guarantee. All drugs, potential cures, treatments, therapies, even over the counter medications all begin at the experimental stage and if not for doctor's willing to go into unchartered territory medicine would still be in the dark ages. Yes, desensitization will not work for everyone but for the most part it has been overwhelmingly successful in Dr. Wasserman's opinion. He has been doing desensitization for 3 years and last month graduated his 100th SUCCESSFUL patient. Along the way he has seen what does and doesn't work. He has changed protocol as the need as arisen. Yes, we are still in the beginning stages of desensitization but in my opinion if this is something that can take a food that could potentially kill my daughter and make it a safe food I am willing to try it. There are risks with everything in medicine. There have to be BRAVE doctor's as well as patients willing to try such treatments in order to make progress. There may not yet be a cure for food allergies but in my opinion this is the first promising advance yet and I am excited to be a part of it.

Next week will be a big jump..

Next week, in my mind, will be a big milestone in our one step forward one step back desensitization journey. Megan will finally move up to the dose that she would have originally dosed up to the week after our initial 8 hour desensitization day if not for the mild reaction and Dr. Wasserman wanting to err on the side of caution. Since this is not a race and each individual will progress according to their own tolerance we are right on track. Megan will be moving from the 6ml 1mg/ml solution to 10ml 1mg/ml solution!!! To be honest I never thought this would work for Megan. I guess you could say that I was very skeptical and looking at the hole in the donut instead of the donut itself (an idiom that Dr. Wasserman used recently in response to one of my pessimistic comments). I am very excited. I am not sure what the long term future will hold when it comes to egg for Megan but as a mom I owe it to Megan to try to make egg safe for her.

Dose increase

Yesterday Megan increased her dose and is doing great. The eye that I thought was a reaction turned out to be not a reaction after all. Megan has a clogged duct in her eye.

Mild reaction today..

Tonight after Megan's dosing she had one eye that got a bit swollen. It is so strange because it is the same eye that got swollen with a previous reaction. We are 1 hour and 15 minutes into her dosing so hopefully nothing else will happen. Tomorrow she goes back in to Dr. Wasserman's to have her dose increase. Tuesday has kind of turned into our day to go in to increase her dose.

Going great!!!

Everything is going great!!!

Uneventful mean good!!!

I haven't posted the past couple of days because there is really nothing to post. Things are going great and Megan is having no reactions. Hopefully we can keep it up and keep moving forward.

Dose Increase

Today Megan went back for another dose increase. She did great and had no issues!!! I am not as nervous myself anymore. Megan is a champ and is excited when it is egg dosing time.

Daddy is on watch duty.

Due to a very late evening last night I ended up staying home from church with our little one. Daddy strapped his Epi-belt on and loaded up the kiddo's to go to church. Daddy officially is in charge of the after dosing watch.

All is well

Morning dose is done. Yesterday was a crazy busy day but very uneventful with regards to Megan's dosing.

Hanging out trying really hard not to jump around, run around or climb the walls. If any of you knew Megan you would know how hard this two hour no exercise wait is. We are watching lots of movies.

Uneventful morning...thank goodness

Well, I would be lying if I said that I was not a bit nervous about this morning dose. I was very thankful that we had a crazy busy morning because I was not sitting around waiting and wondering. Megan never said anything so, hooray!!!!!

A moment of panic...

I dosed Megan tonight and within 5 minutes she came to me and said that her mouth and tongue itched. My heart started racing and I started to panic a bit. I called the after hours answering service and Dr. Wasserman called back and said that it was not that uncommon to develop itching in the mouth. He told me to call back if she worsened or the reaction progressed. He told me to make sure that she drank right after dosing and to try hard to not let the liquid touch around her mouth because the skin is more sensitive and does not have mucus membranes like the mouth does. I had Megan drink a juice box and sat with her for awhile and eventually the itching went away. Ugg, talk about adding more gray hairs to my head.

Thankful for an uneventful day

After having a mild reaction yesterday with her dose increase I was a bit nervous and anxious about dosing Megan at home. I was even questioning if this was the right decision, starting desensitization. Many emotions erupt and it can be a bit overwhelming. But after two doses now behind us without reactions I am feeling cautiously optimistic. Megan seems to not be anxious or fearful and that is such a blessing. I have decided that I need to remember that "slow and steady wins the race". Or in Megan's case, "slow and steady gets the egg", lol.

Todays appointment

Megan getting a pre-dose exam.

Megan getting her new increased dose. She was bumped from 3ml to 4ml of the 1mg/ml solution. Megan chose to have her egg water mixed with tropical kool-aid this week. Last week she had cherry.

Hanging out in the infusion room for the required 1 hour wait after dosing. Chatted with another mom who's son was also doing a 1 hour wait for milk desensitization. It is fun and reassuring to talk to other mothers who's children are further along in the process and hear how it has gone for them.

Minor reaction requiring extra monitoring. Megan developed a hive over one of her eyes and developed wonderful allergic shiners. We waited about 50 minutes beyond the normal hour wait and the shiners and hive got much better. Angela came in several times to check on Megan. The reaction required no medication.

Nothing new

Megan got her morning dose and did great. Tomorrow she will go back to Dr. Wasserman's for her dose increase.

Day 4

Busy day running around getting ready for church. Dose taken. Hopefully the day will be uneventful and boring. Not usually what one whats in a day but in this case it definitely is what we want.

A great day...day three

Today Megan did great and DID NOT HAVE ANY REACTIONS!!! Even after yesterday today she was excited and has absolutely no fear or anxiety. I can not say the same for myself, lol. She is such a trooper.

No Megan Egg does not taste like Kool-aid

Megan has in her mind that egg's taste like Kool-aid. I explained to her that the egg powder and water is mixed with Kool-aid so that it tastes better. Poor kiddo, I wonder how surprised Megan will be when she really tastes egg for the first time. We are now on day 3 of desensitization. I had to wake Megan up again this morning. She still was not up and it is 13 1/2 hours since her last dose. I did not want it getting too much later since the next dose can't be given for at least 9 more hours. Again, let the two hour wait begin....


Because my life is crazy busy with 6 kiddo's I needed to find an easy way to remember when I give Megan her last dose. You would be surprised how easy it is to forget after a busy day. I bought a very inexpensive dry erase board that will hang up in the kitchen. I thought about making a spreadsheet to enter times but somehow papers get misplaced or moved around too much in our house.

Dose two day two

Megan happily ran into the kitchen when I told her it was time to take her evening dose of egg. Tonight's dose is half of what she got this morning. Megan will continue with this lower dose until her appointment next week barring no other reactions or complications. Now the two hour wait begins....

It has been two hours and no reaction!!!!!!

A funny

So daddy was talking with Megan when he got home and asked her how her egg was this morning. She told him she did not have any this morning. He said, "Yes you did", and she said "No I didn't, remember mommy woke me up in the middle of the night". She was talking about her 6am dosing this morning. I guess she assumed it was the middle of the night since no one else was up.

Anxiety and Fear

I would be lying if I said that I did not have anxiety and fear about this whole process. For 4 years egg has been a BAD WORD in our home. We have trained Megan to stay away from any form of egg. It is a bit nerve wracking to give your "anaphylactic child" the very food that could potentially kill them. With each dose I am watching and praying that she will be okay. I am very careful not to voice or show my anxiety because I want Megan to see this as a positive process to gain a food that for her whole life has been off limits. In some ways I think that being young puts Megan at an advantage because she does not have the more developed sense of anxiety that an older child or adult might potentially have. The drawback though is that I have to make sure Megan really understands the NECESSITY of being totally honest and open with how she is feeling when a reaction is happening. As we all know time is very critical when dealing with anaphylaxis.

Minor setback..

Megan came to me about 50 minutes post dose and asked, "Mommy if I tell you I don't feel good do I have to have an epi". I explained that she would only need one if she started having a bad reaction. She started crying a bit and said that her tummy was not feeling well. We cuddled and I calmly went down the checklist of other possible symptoms and asked her if anything else was wrong. No, it was just the tummy. I called Dr. Wasserman and after talking a bit he decided to cut her dose in half. I dosed her with some antihistamine to counteract the slight reaction her body is fighting. This process is so individualized and everyone's tolerance and rate for progression is going to be different.

Dr. Wasserman called back to check on Megan and since she still was not feeling well we added a dose of steroid. We are now 3 1/2 hours out from dosing and she is feeling much better.

How severe is Megan's egg allergy

For those that may be wondering how severe Megan's egg allergy is, it is severe. Megan has had both airborne and contact reactions to egg. Megan had a reaction from touching an egg carton around one year of age. When younger she started having a reaction from going into a Chinese restaurant to get chinese take out. She broke out and went into full anaphylactic shock when wiping herself off with a rag that we later learned had egg on it. We do not had eggs in our house. Some condiments that have egg in them are also banned due to issues with accidental exposure in the past. Megan has gone into anaphylactic shock many times due to egg.

Early Morning dosing day two

This morning I had to wake Megan up at 6am to dose her. I will spare you all the early morning dosing picture. Since she had 25 doses yesterday we did not do a day one nightly dose. Since dosing has to be within a window of 9 to 15 hours from the last dose that meant waking her up early this morning. Now to keep Megan awake for the next hour for observation. Let the fun begin.

Since desensitization is still in its infancy changes in protocol are constantly being made. After Megan finishes the desensitization and begins her set daily dose of egg she will have to continue to use the Berry Farm egg powder. They have found that eating egg in the cooked form varied too greatly from day to day. Cooking egg breaks down the full intact protein and for a person dealing with severe egg allergy trying to maintain a desensitized state this just was not working. Megan will still be free to eat eggs but will have to continue to dose with the Berry Farm egg powder.



It is still so incredibly unreal that I am actually feeding Megan egg!!! Yes, it is very, very dilute right now but we are doing it. Until the concentration is larger this is how Megan gets her egg now. Amazing, isn't it?

Egg Desensitization Day One

Waiting for the doctor to do an exam so that we can start the desensitization.

Megan's surprise gift for the long day ahead.

The first dose of diluted egg power in kool-aid flavored water.

Watching a movie passing the time in between our every 15 minute doses.

The dosing started around 8:45am and Megan had her last dose around 3:00pm. In all their were 25 doses given every 15 minutes throughout the day. Every couple of doses increased in concentration. Her first concentration was 100mcg/ml and the doses at that concentration went from 1ml to 5ml's. The next concentration was 1.0mg/ml and the doses went from 0.5ml all of the way to 6ml's. The egg powder used is purchased from Barry Farm. To make the solution more palatable it was mixed with kool-aid.

Megan had a minor reaction after her 25th dose requiring no intervention except a cold wash cloth. One of her eyes got red, itchy and a tiny, tiny bit puffy. It resolved within an hour. They ended up keeping her about a half hour later to observe her.

Megan's Story

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 egg around 9 months of age turned into violent vomiting followed by being very tired. At the time we assumed she had a stomach bug. Her next exposure was very similar, violent vomiting and getting very tired and falling asleep. I cringe when I think back to those experiences as I know how bad things really could have turned out for her. By her third exposure, which was after diagnosis, progressed into full blown anaphylactic shock requiring epi and an ambulance. 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 my child 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 this year, when her 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 begins our journey.