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Thursday, October 18, 2012

10th Cinic Visit--October 17, 2012

He made it!  The little guy survived all the upset stomachs and dose derailments.  He made it to his maintenance dose of 306mg of peanut protein, or 1 whole peanut a day.  Our journey started on May 9th and with all the protocol changes, he made it to this point a lot quicker than anticipated.  I knew that even if he had trouble with the dose today that he would still get there in his own little time.

Today was a lot different than even 2 weeks ago for the little guy.  Today, he didn't want me to pick him up early from school and was not happy he had to leave before recess.  I think he has made some good friends and finally enjoys everything about school.  He had a bit of a hard week though getting settled into a reading group.  He reads really well, so the teacher is challenging him just enough that he has to really focus when he reads.  How dare she make him work at school!  :)  He was a little out of sorts for peanut clinic because of a rough day with his reading.  I just hoped his mood wouldn't put a damper on his visit.  The little guy greeted the allergist for hopefully the last time for a while, had his vital signs taken, and ate down 306mg of peanut protein.  Aside from being a little cranky and emotional while we were there, he had no stomach complaints or other side effects!  He really truly did it.

So this marks the beginning of the "maintenance phase".  The little guy was given a month supply of the 306mg peanut protein that he will continue to eat each day.  We will pick up "refills" each month from the clinic and just plug along at home without having to go to clinic visits unless a problem arises.  I will peel him off the rest of his stomach medications over the next 3-4 weeks and hope that it all continues to go well.  After 3 months of doing our home regimen, we will go back and he will be given the powder equivalent of up to 16 peanuts.  The allergist breaks the dosing up into three increments.  If he can do well with that, then more blood work will follow.  For now, I will just enjoy having him at 1 peanut a day, knowing that if he made it here, in time, he will make it all the way.

This all happened at a perfect time with Halloween right around the corner.  I am going to buy candy this year that I haven't purchased in years.  He is excited to enjoy plain M&M's for the first time on Halloween.  I figured I would save giving them until then so it was a special treat.  Most of all, this means there is a comfort in sending him to school that he will be safe should he come in contact with peanut products.  He has made some good friends sitting near the "allergy kids" at lunch, so I'm sure he will keep sitting with them since he enjoys that so. Kindergarten has been a breath of fresh air for him in SO many ways.

I am so thankful to everyone reading this blog who has prayed for him and wished him well.  I am also incredibly grateful to live so close to a wonderful institution so he could get this opportunity.  He still has a ways to go, but he has made to a huge milestone.  I look forward to the day when he can fully understand just what he has done and at such a young age.

Next challenge is the yearly flu shot--that will be more of a trauma to him than any peanut experience!  Check back for updates!

to be continued...

Sunday, October 14, 2012

Almost there! October 14, 2012

The little guy is almost there.  Only 2 more doses until he goes back to clinic to eat his final dose getting him to one peanut a day.  I just hope he can stay well to get there!  He has been battling a cold for the last week.  He didn't have to miss any doses but on Wednesday he did have an asthma attack with his dose since he was sick. 

It is so hard to watch the little guy get sick.  For most parents, having your child get a cold may not even be that noticeable, or just a minor inconvenience.  When the little guy gets sick, I have to be right on top of the cold from day one, giving him 4 times the dose of his inhaled steroid daily than he usually takes.  He also has to have extra inhalers to open him up so he stops coughing.  Sometimes he even has to uses oral medication to help stop his asthma.  He is not a wheezing asthmatic, just one that coughs and often gets very croupy with his cough.  All these medications combined make him very moody and irritable.  I just feel so bad for him that he has to go through all this.  The little guy has more prescriptions written for him than some of the geriatric patients I take care of!

On Wednesday, he had had his cold for 4 days and seemed to be doing better.  No signs after school that anything was getting worse.  He had his dose of peanut and within 20 minutes he started coughing and coughing.  I had to give him 4 puffs of his rescue inhaler just to get the coughing slowed down, but it never stopped it.  I also started him on his Singulair (which makes his moods truly unbearable, but works like a charm).  For whatever reason, this virus seemed to hit his lungs worse than the last cold he had.  The allergist advised me to keep dosing his peanut through the week unless a fever surfaced.

Lo and behold the next day we had a good friend over and he did great!  Not one single cough.  Granted, by this time he had enough inhalers and pills floating in his system that he should be O.K.!

Still today, one week later he is still trying to get better.  I just hope we can ward off the next round of Kindergarten germs until we hit the clinic doors Wednesday!

to be continued....

Friday, October 5, 2012

In the Clear--October 5, 2012

The little guy is now 3 days into the 200mg dose.  So far so good!  After the first day of having some flushing there have been no noticeable symptoms for the last 2 days. I usually like to give him 5 days before I judge if the dose is going to go well or not but I think he should be in the clear. He is having reading assessments at school this coming week so I doubt I will get the courage to stop his medication. We will just take it one day at a time!

To be continued...

Wednesday, October 3, 2012

9th Clinic Visit--October 3, 2012

Today was a special day. Going to peanut clinic has never been a bright star in the little guy's day until school started. Even though he is doing well with school and really likes it, he knows that every other Wednesday he gets to leave school early and spend time with Mama. He ALWAYS reminds me to put a note in his book bag to tell the teacher he will be leaving early.  When I told him that we would only have one more Wednesday to come before eating our peanut at home for a few months he said he didn't like that at all.  I sorta understand how he feels.  This whole process has given us a special bond in our relationship.

The little guy didn't realize what a big step today was. Today he was the 2nd person to make the big dosage jump on the new protocol. I was certainly super nervous for him.  He did great the last 2 weeks. I was even able to lower his PPI stomach medication and cut it in half for the last week.  No stomach troubles resurfaced at all!  Today he made the dosage jump from 100mg to 200mg peanut protien (2/3 of a peanut!).  For about 1/2 hour he appeared to get a bit flushed and rubbed his nose a bit, but he never had the ominous quiet period. It seemed that the dose was a success, at least for today!    I asked the allergist how these big dosage jumps were tolerated in other studies at other institutions and he reiterated that the higher doses are much better tolerated than the smaller ones. Seems that the "peanut allergy receptors" are saturated by the time the higher doses are reached, so the body starts to accept more and more without having reactions.  The good man hasn't led us down the wrong path yet, so I have come to trust that he knows what he is talking about!

I have found that if he can make it through the first 5 days of dosing without getting sick, then he will be fine. If he does well this next week, I may get the courage to fully stop his PPI and continue him on just the H2 blocker. The little guy's routine has worked for him for over 4 months, so I hate to rock the boat until he makes it to the end!

In 2 weeks, if all goes as planned, he will go back to eat his final maintence dose of 1 full peanut. I feel so blessed and am so thankful he has made it to this point. I am so proud of the little guy and I make sure I tell him that each and every day.

to be continued...