Dose Increase 3/23

Today, we drove to Dallas for Calista's first dose increase.  It was really an easy visit.  She was given 1ml of 25mg/ml peanut solution.  We then stayed in the doctor's office for one hour for observation.  After it was all said and done, we enjoyed a fabulous lunch from Freebirds!

She will stay at this level for at least 7 days and will return to the allergist next Friday for another increase.

Contact Reactions and thinking everything around is a bomb...

I really feel bad for our school secretary.  Every time she calls...I'm immediately thrown into emergency/panic mode.  Usually she isn't calling about a reaction, but every single time I see the school's number on caller id...that's my immediate thought.

Calista's eye is itchy and one side of her face is red.  Really???  She hasn't eaten anything unsafe, but that is just a tiny piece.  She has had multiple contact reactions, so someone could have eaten nuts with breakfast and had just enough residue to cause a reaction.  It could just be something in the air- I know the pollen counts are crazy right now.  BUT we have no idea. And now, I'm on the verge of freaking out...and I know her teachers are cautiously watching for the reaction to end or get worse.  Just a great reminder as to the importance of this desensitization treatment and how much better her life will be once she completes the treatment.

The tools

Several have asked how we administer the peanut solution. The peanut flour is mixed with water (and a little grape Kool Aid). The solution must be refrigerated. Calista doesn't have any problems with the taste. I am so worried about running out or having our solution spill (because we are 2 hours away from the allergist).

Day 7 of Desensitization

Just got an email to fill out forms for Calista's next appointment. Friday we will travel to Dallas for a dose increase.  Things are going so smoothly...I almost hate to think that or say it out loud :)

She has now had 36 doses of peanut solution with no reactions (other than the mild tongue itching on Day One when she wasn't washing it all down).  If the treatment takes 18 weeks, that will total approx. 252 doses.  Woohoo - only 216 left.  Okay, I know that is silly, but I'm just super excited about this treatment and the life changes this will bring about for all of us.  No more "special" cupcakes at birthday/school parties.  No more giving away candy that doesn't have a label.  And possibly an end to Mommy standing/hovering like a crazy person with EpiPen in hand...one day I may be able to focus my crazy elsewhere.

I hope this treatment becomes available everywhere very soon.  There are too many children with this life-threatening allergy.  Too many families who have this stress that a food could kill. I cannot wait for Cal's name to be added to Dr. Wasserman's list of those who have successfully completed treatment (yes, I know that we are months away, but that is closer than I ever thought we would be).


This link has a list of doctors who are working with desensitization treatments.  I did not create this list.  I found it on a Facebook Group, but I think it is great resource.

Interview with Dr. Wasserman

Click here to view an interview with Dr. Wasserman, patients and mothers of patients.  He explains a little about the desensitization program and why it is successful.

Day 5

I feel like this blog is so boring...but that's really a good thing at this point. No reactions, no problems with her doses. I was really stressed about allowing a doctor to give peanuts to my child. I have avoided peanuts for 5 very long years. I have worried about the unseen peanut residue everywhere around her. I wasn't expecting her to have a reaction. I have complete confidence in Doctor Wasserman and the staff at his office (we've visited both locations). BUT, the idea of giving her peanuts (even the tiniest fraction - was still pretty stressful). Now, I'm just really excited about this journey and praying that she continues to do well. I'm sure we will have a setback or two, but I feel like there is a light at the end of the tunnel and it isn't all that far away.

Day 3

We have now had 3 doses at home. So far, so good. No reactions whatsoever.

For those who have asked for dosing info:

On Day One, we started with:

1 ml of 2.5 mcg/ml

2 ml of 2.5 mcg/ml

4 ml of 2.5 mcg/ml

1 ml of 25 mcg/ml

2 ml of 25 mcg/ml

4 ml of 25 mcg/ml

1 ml of 250 mcg/ml

2 ml of 250 mcg/ml

4 ml of 250 mcg/ml

1 ml of 2.5 mg/ml

2 ml of 2.5 mg/ml

4 ml of 2.5 mg/ml

6 ml of 2.5 mg/ml

Every fifteen minutes, she was given a dose. She had each level twice except for the final 6 ml. So 1 ml of 2.5 mcg/ml and then 15 minutes later, she had another 1 ml of 2.5 mcg/ml.

She is currently taking 6ml of a 2.5 mg/ml peanut solution. I have no idea what that really means in terms of real, actual peanuts. I think Dr. Wasserman said the first dose is the equivalent of 1/400th of a peanut. I think someone said the 25th dose on Day One is the equivalent of 1/10th...but I'm not 100% sure.

She chose to have grape Kool-Aid added to her solution, so it is a light purple color. I think that helps because she was not thrilled when she could see little brown flecks of peanut flour in the plain doses.

We will spend 7 days at this concentration and will return to Dr. Wasserman's office for the next increase. The next level (according to our chart) is 1ml of 25 mg/ml solution. After 7 days at that level, we will have 2 ml of 25 mg/ml solution.

The next step will involve peanut flour. The level increases are 50 mg, 100 mg, 175 mg, 250 mg, 500 mg. She will be at each step for at least 7 days. At least 7, because - she won't go for a dose increase if she is sick (cold, virus, etc) or if something else causes us to miss the visit. The chart shows the treatment lasting a minimum of 18 weeks.

After the weeks on peanut flour, she will be dosed with actual peanut!! Starting with 1 and moving up to 12 peanuts twice a day.

Morning of Day 2

The last dose was 3:30 yesterday afternoon, so that meant setting an alarm for this morning's dose. She needs to have a little food in her tummy and doses need to be less than 15 hours apart. She asked that they add grape Kool-Aid to the peanut solution (during Day 1-she just had peanut flour & water) and didn't have any complaints when she tasted it.

Now, she has to be observed for an hour and can't exercise (or get her heart rate up) for at least 2 hours. If she does, it's more likely to trigger a reaction. She is extremely comfy on the couch, so I don't see that being an issue today - school mornings will be a different deal...

Please note--I am not a doctor. I am a mom...a mom with 3 kids & a to-do list that never quits & a brain that is running out of room, so I don't have all the answers and I may get some of the medical specifics wrong. This blog will be written as accurately as possible because I am excited about sharing this journey with others. Many children have had great success with this treatment and I hope my daughter will have her name added to that list.

Details & Rules (Lots of Rules)

Calista is participating in a Peanut Oral Immunotherapy treatment. We started Day One today with an all day doctor visit. She received 1 dose of peanut solution every 15 minutes. The volume of solution and concentration of peanut were increased throughout the day. She was able to receive all 25 doses (first goal achieved!). Her tongue got a little itchy at one point, but after a few drinks of water and she was a-okay.

We have been sent home with a peanut solution (now safely stored in our fridge). She will receive two doses of this solution every day for the next 7 days. The doses should be given 12 hours apart (with a 3 hour window on either side), she has to be observed for at least an hour after the dose and she can't exercise for 2 hours after (4 hours is even better). I'm a little concerned about the timing because of softball season starting, but I'm sure we will get it figured out.

Our next appointment is Friday, March 23rd. At that appointment, she will get a higher dose and be observed for an hour. If all goes well, we will spend 7 days at the new level.

Some children are able to eat some of the actual food by the second month and a whole serving of peanuts by the fourth month. What a change from reactions on playground equipment & toys!

Thank goodness for iPads, LeapPads, laptops, comfy chairs and tons of snacks! It was a long day in the doctor's office.

Day One of Peanut Desensitization

We arrived at Dr. Wasserman's office in Dallas at 8am. We were there with 2 other kids - one is receiving treatment for peanut and the other is being treated for eggs. The child being treated for egg allergy has already successfully completed a desensitization for milk allergy.

Every 15 minutes she will receive a higher dose. She's gotten three and so far, so good!