Emotional Rollercoaster

This entire experience is a constant up and down of emotions.  One minute, I'm feeling pretty good because we've had a successful dose increase followed by two uneventful weeks of home dosing.  The next minute, I'm stressed, scared, and worried about my child.  By the time we got home from his dose increase yesterday, his upper lip was very red and maybe a tad puffy, his nose was running profusely, and his chest sounded congested.  I couldn't tell if it was from the virus he has had for the past week, an allergic reaction, or possibly some combination of the two.  All I knew was that dose time was looming ahead of us, and I was terrified to do it.  

So again, I have to sing the praises of the amazing Dr. M.  I hated to bother him, but I decided to text him and explain that, and he immediately responded that I should give him Benadryl, put him to bed, and wait until morning to dose him again.  I was immediately relieved.  There is no way I could have slept last night with the anxiety it was all causing me.  I hope Dr. M. knows how much his simple texts can put a worried mama's mind at ease.  He really is a gift to the medical field and to people with allergies and asthma.  

We got up at 6am this morning to get Sean's dose in him a good two hours before his school day started.  We've been doing it everyday, so it is part of the routine now.  One of the first things he said this morning was, "It's so good to feel good again!"  I asked him if he felt sick the night before, and he told me yes, but I couldn't get him to elaborate.  Then we dosed him, and I watched him begin to resemble the way he looked the night before.  Red lip, watery eyes, runny nose, and just looking sickly.  You could just tell he didn't feel well.  Some of it was from being tired, some of it was from being sick, but I know that some of it was from ingesting his allergen.  Just in case, I gave him a dose of Benadryl before he went off to preschool.  

I called about 45 minutes into Sean's school day to check on him, and his teacher told me he was doing just fine.  Thank goodness, because I literally could not focus on my work until I knew he was okay.  My coworkers probably hated me because when I get anxious, I struggle to stay on one task and bounce around from one thing to the next, forget what I'm doing in the middle of a task, and simply can not concentrate.  I'm sure I was slowing down the work flow until I got that confirmation that he wasn't in danger.  It's amazing the power our babies can have over us, and it's equally depressing the power these allergies can have over us.  But not forever, I hope!  This morning when I was overly stressed out about it I asked my husband, "Why am I doing this to myself?"  His reply was, "It's not what you're doing to yourself.  It's what you're doing for him."  Those are my words to live by.  All of this stress, worry, anxiety, and fear will be worth it in the long run if it affords my son a better quality of life.

No News is Good News

Yes, it has been a while since I last updated, but thankfully, that's because everything went well the past two weeks.  (Insert happy dance here!)  Last night, we were getting ready for bed and Sean asked me what we were doing the next day.  I told him we were getting up very early to go see Dr. M. for a dose increase.  And he said, "Mama, that's not all we're going to do tomorrow" very excitedly like he knew a great secret.  So I asked him what else, and he whispered enthusiastically, "See Nurse Lety!"  He loves her!  She gives him his dose, checks his vitals, gives him applesauce and water to go with his dose, and most importantly to Sean, she hangs up the pictures he colors on the wall.  He is so proud to see his art on the wall each time we visit!

Today we went for Sean's next dose increase, and his final dosing on "Solution D" which he has taken in increasing amounts since the end of the first day.  This dose is 6.15mg of peanut protein, equivalent to 15mg of peanut flour.  He did well at the challenge for this dose, but he did get one red ear.  I see it frequently and to me, it is clearly related to his allergies and is a sign of reaction.  My husband tries to tell me that it's just their red Irish coloring making him more prone to it, and tries to downplay my concerns as "nothing" so it was validating for me to have Dr M. notice it and mention that he sees it very often.  He did go on to say that unless other symptoms appear, I do not need to treat it with antihistamines.  

I left the office feeling pretty confident and calm, which is a rarity for me on dose increase day.  I was feeling good because this dose increase was smaller than some of them.  Many of the dose increases are actually doubling the previous dose, and this particular dose increase was only a 50% dose increase, so I felt better about his system not being overwhelmed.  He did fine at the challenge, and I was feeling great.

Fast-forward to tonight.  When we got home and got him out of the van, I noticed that his top lip was red and maybe even a bit puffy.  He is mass-producing snot.  Now mind you, he has been sick this past week, and he and his brothers are all snotty beasts.  But this seems excessive.  And he has a little bit of a cough with it.  I know his brother has also had a cough with this current illness, so I'm trying not to worry too much and hope that it's just another symptom of this bug they're fighting.  But... I'm a worry-wart.  And my baby who just had a dose increase of his allergen is now sounding really congested and is breathing louder than normal.  So I'm on the verge of a freak-out, but I'm trying to ignore it.  I'm nervous to give our home dose this evening, so I'm putting it off.  Wish us luck!

A New Dose (Finally!)

Before I start on today's update, I would like to take a moment to comment on how absolutely amazing Dr. M. is!  Sunday night, Sean had an apparent reaction to something and had a rash around his mouth.  I texted the picture to Dr. M. who responded immediately that he was in an area without data but that he would look at the picture later that evening and give me his input.  He asked how his belly had been doing since his previous reaction where I administered epinephrine, and he responded later that night with his opinion on the rash in my picture.  I don't know any other doctors who are so incredibly accessible that they will text with me on a Sunday night on the long Labor Day weekend about my concerns.  It just does not happen!  This is a man who truly cares about his patients, and I could not be more grateful!

After being stuck at the previous dose for about a month, Sean finally went back to Dr. M's office today for a dose increase.  I wasn't able to go with him because I had my own appointment today (more on that later).  At Sean's last appointment, we were in the room with another peanut OIT patient, "T", as well as T's dad.  Today, Sean was there at the same time as "T" again and made good buddies with his mom, "M".  He apparently told her all about how to play Candy Crush Saga on daddy's phone, and he said she smiled at him.  He even gave her a hug and a kiss before they left the office!  It is so funny because he is actually quite shy and quiet around people he doesn't know well.  He is only four years old, but he has a strong intuition and can sense a person's character.  "M" must be awesome if she won Sean's affection in one short hour!  "T" is much further ahead of Sean in the OIT program.  Today he dosed up to 6 whole peanuts (twice a day!).  To compare, Sean's new dose is the equivalent of 4.1mg of peanut protein.  Six whole peanuts contain 1,500mg of peanut protein!  You can see that we have a long road ahead of us in order to make it up to 8 peanuts.  I just desperately hope that we make it there!  Right now, he is on such a small dose that I can't even fathom a day where he can eat an entire peanut, let alone multiple whole peanuts!  

I notice that during this treatment, Sean's ears have been red a lot.  My husband thinks it's normal and that it is because he has reddish hair and fair skin.  I get nervous that it isn't normal because for one thing it is much more common now that he is on OIT and is exposed to his allergen on a regular basis.  I also worry because other allergy moms in my online groups have mentioned that red ears are often the first sign of a reaction in their children.  I suppose I will ask Dr. M. his opinion.

As for my appointment, I was meeting with a new doctor about possible Lyme disease.  Ugh.  I wish I knew what was wrong with me.  He's going to treat me with antibiotics as if I have Lyme disease, and gave me orders for around a dozen more tests.  None of the tests for Lyme disease are perfect and I just desperately want some answers as to why my body (my nervous system in particular) has declared mutiny against me over the past 4 months.  So if you happen to send positive thoughts, prayers, well-wishes, vibes, etc. to Sean for his peanut OIT, please send some for me as well.  

I Hate Uncertainty

Since Sean's incident where I administered the Epipen, he has done well.  He took a 3-day course of a steroid, then began daily Zyrtec.  There hasn't been any sign of a problem until today.  Six to seven hours after his dose of peanut, he had a rash pop up on his face around his mouth and chin.  All I have is a poor cell phone picture, but I think you can see it well enough to get the idea.  We did have lunch at Panera Bread a couple hours before the rash popped up, which we have done several times in the past without problem.  I'm not sure if he may have been exposed to something different this time, or not.  He also has been incredibly nasal today.  He just sounds like his sinuses are congested, but not really producing mucus.  Just to the point that it sounds really stuffy when he tries to breathe through his nose.  So I'm not sure if he's just experiencing some extra seasonal allergies or what.  I texted the picture to Dr. M., but he was in an area without data service, so he couldn't look at the picture and said he would be able to see it in a few hours.  We waited around an hour later than his usual dose time in hopes that Dr. M. would respond with some wisdom, but he didn't respond yet, so we just dosed as normal.  It has been about 30 minutes now, and so far, he's doing okay.  But last time he had a serious reaction, it was almost two hours after his dose!  So of course I won't rest easy for a couple more hours.  Why must this entire process be so terribly nerve-wrecking?  As of now, we're set to visit Dr. M. on Thursday for his next dose increase.  I really hope nothing happens between now and then.  We've already been on this dose for nearly a month, thanks to the other reaction.  Don't get me wrong, I am in NO hurry to finish the treatment and I want to take our time and go as slowly as possible.  It's just discouraging to be having so many problems already.  I feel like I need a long, long stretch of time with no reactions to make me feel more confident that this is the best decision for Sean.  

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