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Tuesday, January 29, 2013

The results are in...January 29, 2013

Today I received the message from the allergist about the little guy's blood work.  It seems his IgE level is 22.  That is not yet at the goal of 15 that is required to enter the next phase of the study.  It seems like going from 29 down to 22 is not a very big drop.  On the contrary, he has made a great deal of progress.  The allergist said that when people start this type of allergy treatment their IgE can rise 50-100 points as the body reacts to ingesting the allergen.  (hence all the fun stomach upset the little guy experienced)  So if you take that into consideration, his number could have gotten as high as
80-130 during the initial phase of the study.  To be back down now to 22 means that his immune system is showing a good response.  That's our M.O. around here, always "moving in the right direction"!

Now our plan is to hold the course for the next 3-4 months or even longer to give his number a chance to come down nicely--preferably well below 15 according to the allergist.  The little guy will keep eating his 3-5 peanuts a day and we will plug along.  The allergist doesn't want to torture him with too many blood draws and wants to wait long enough that the next one will hopefully be the last.  It takes a lot for doctors to impress me and this guy is good.

to be continued...

Sunday, January 27, 2013

One Week In--January 27, 2013

It has now been just a little over a week since the little guy finished his big peanut challenge day.  Now he has had to get used to the taste of real peanut butter.  He really is not a big fan, which is not surprising.  The first day, he tried peanut butter M&M's.  He ate 3 of them, but didn't really seem to enjoy doing so.  He did o.k. with that dose.  That is a pretty big daily dose increase, so I didn't know how he would do eating a higher daily amount.  The allergist said we could go slower and build up if he seemed uncomfortable, but we are trying to shoot for around 4 peanuts a day.  The only symptom I notice in him is that he starts to sound like he has some mucous in his throat he needs to clear, that isn't there before he eats his dose, but even that has improved over the course of the week. 

Since he wasn't a big fan of the candy, I searched the peanut butter isle for anything that might taste a little better.  We don't have too many options since the dose has to be able to be quantified.  You can't be sure just how much peanut is in certain candy bars or even a Reece cup.  Our options include Reece's pieces, dry roasted peanuts, Peanut or peanut butter M&M's, or peanut butter.  Now they even make flavored peanut butter.  I was able to find a choice from Peanut Butter and Co. called "Dark Chocolate Dreams".  It is regular peanut butter mixed with dark chocolate.  I picked up a jar hoping that might appeal to him.  Since it is flavored, it counts for 4 peanuts per teaspoon, whereas regular peanut butter contains 5 peanuts per teaspoon.  Perfect.  A nice "middle of the road" dose, tasting like chocolate peanut butter candy.  It has been a hit so far, or at least something he is willing to tolerate daily.  I spread the teaspoon onto a half a slice of bread and make a mini sandwich.

This past Thursday was also the big day for the blood work.  The allergist had given me some numbing cream I applied to his arm before we left home.  I really hyped it up that "he wouldn't feel a thing".  I knew that wasn't entirely true, but when you have a 15-20 minute car ride ahead of you with a innocent 6 year old who knows what is ahead for him, you just say what you need to say.  He was actually very brave this time and the whole procedure was over in no time. He even watched the blood come into the tube! These lab results will tell us his IgE level to peanut and if it below the magic number of 15.  His number started out at 29 last spring, so I bet as well as he is doing that it will be below that mark.  If it is, he will go on to the peanut avoidance stage of the study.  The allergist said we should have results as early as 1/28 or 1/29. 

Even though we have reached this point, the same rules apply for his dosing that we have had all along.  The peanut must still be eaten on a full stomach, no dosing while ill with a fever or other serious infection and must avoid physical activity for 2 hours after dosing.  Even though his risk of reacting to the peanut is much lower now, it can still happen if we break the "rules".
The little guy is very good about it all at this point.  He loves to draw houses and build houses with his legos so we can always find something quiet to do.  He is such a brave child to go through all he has in the last 9 months.  We are all so very proud of him.

to be continued...  

Sunday, January 20, 2013

Challenge Day--January 18, 2013

Today was the day that all the little guy's hard work was put to the test.  I know he has been worried about it all week in his little mind. He just hasn't been himself this week.  He had to be off all antihistamine medications for a week before the challenge so a reaction to the peanut would not be masked.  Coming off of his Zyrtec is always hard for him because his allergies always flare up.  Each day off of it he gets a little more stuffy.  This morning he woke up with a little cough, so of course I was worried he may be getting sick, but turns out it was just from his allergies.  So between allergy trouble, missing school due to weather/holiday, and worrying about the challenge, the little guy has had a hard week.

We arrived at clinic this morning around 930.  The goal today was to complete 5 different doses, all measured out in powder, ranging between 2-4 peanuts per dose for a grand total of ~15 peanut equivalents.   The little guy already had a big breakfast so I gave him a granola bar to eat before his dose.  The allergist took his vital signs, listened to his lungs and then he started his doses.  He started with 2 peanut equivalents.   He did seem to have a little flushing and didn't quite seem himself after the dose.  He never complained of anything so we just kept close watch on him.  After about 20 minutes his symptoms seemed to subside. The little guy had to wait 30 minutes inbetween doses, so he was busy drawing houses to pass the time. Thirty minutes after the first dose, it was time for another!  We brought lots of snacks along, so before each dose he would eat a small snack.  Each dose was a large amount of powder, so it required him to eat a lot of applesauce with each dose. The second dose was around 3 peanuts. This dose seemed to go smoother for him and I didn't notice the facial flushing.  Once again, he went back to drawing and we waited out another 30 minutes.  The time did seem to pass quickly, but the little guy did seem to grow weary of all the sitting.  Finally dose #3 came and he ate another dose of around 3 peanuts.  Once again this dose seemed to go o.k.  The fourth dose he decided to mix with chocolate pudding. This dose was closer to 4 peanuts. He got a little burst of energy from the chocolate, so while we waited out that 30 minutes we used the magnet on our iPad cover to see what all he could find that was metal around the clinic.  He is studying magnets right now in kindergarten, so that kept him entertained.  Finally the time came to eat his final dose of around 4 peanuts that would put him at 15 total peanuts for the day. He decided to eat the last dose mixed in applesauce because the pudding gave the powder a weird taste.  By the last dose you could tell that he was feeling "different" from eating all the peanut.  He made it through without having a allergic reaction, but you could tell that he acted differently--sort of like how he used to act when he first started the study.  After eating the last dose, we had to stay in the clinic another 2 hours so the allergist could observe him for any allergic reaction.  We were there for a good 5 hours, so he was definitly wiped out by all the stress when we were done.  And so was I!

The last part the allergist and I tried to sneak in on him was the blood work to check his IgE level for peanut. This is important because if his IgE to peanut is now below 15, since he passed the challenge, he would do a strict peanut avoidance for a month and then go back to clinic and re-challenge eating 15 peanuts and see if he can pass again. This would show he has achieved desensitization, and the study would be complete.  If his blood level is not below the 15 mark, he would keep eating around 3-5 peanuts a day and would go back for lab work every 3-4 months until his IgE reached that level to do the peanut avoidance phase.  Needless to say he started a major meltdown when he heard he was up for a blood draw so after much coaxing and pleading we were not able to convince him otherwise.  Since he had been through so much already we conceded and I will take him next week after school for round two of fun.

So here we go!  He made it to a point that I was never sure he would be able to get to.  Another little boy was at clinic today and he was having to drop out due to severe stomach pain when eating even small amounts of peanut despite taking the stomach medicines the little guy used.  That made me realize just how blessed we are that the little guy was able to continue.  It is hard to believe that eating 1/300th of a peanut used to make him vomit and today he was able to eat 15 peanuts. As a mom I feel so lucky that I now have a little reassurance that he is a little safer now for reaching this point.

He still cannot eat large amounts of peanut--his daily goal is still everyday to eat 3-5 peanuts.  No more powder though!  He will have to get used to the taste of eating real peanut foods.  Did you know that 1 tsp. of peanut butter is the equivalent of 5 peanuts??  It is no wonder people have such severe reactions to peanut butter the first time they eat it if they are allergic.  It is very concentrated!  His first try at the real thing will be peanut butter M&M's.  It will seem so strange to give him something real like that.  To avoid it like the plague for so long and then pop open a bag of candy and give him 4 or 5 M&M's will be very odd indeed!

Today was my birthday.  And what a birthday it was.

to be continued...

Tuesday, January 8, 2013

Nearing the Big Day

Wow.  I cannot believe that it has been 12 weeks now since the little guy started maintenance dosing. The end of October was a busy time with Halloween.  That was a fun holiday this year. He was able to try several new candies that he had never had before--talk about excitement for a 6 year old!  Twix bars, cookies and cream Hershey bars, Kit Kat bars, and his favorite--M&MS!  It was a joy to watch something so simple (and something most of us take for granted) excite him so much.  The M&M frenzy continued into November and then into Christmas with baking M&M cookies with the red and green ones.  Very fun holiday times.

The maintenance dosing has gone very smoothly. He was off both stomach medications by about       2 1/2 weeks into the dosing, around November 1st. I know he was ready to come off of them both sooner, but I was not going to try anything that would even remotely cause a set back.  Soon after stopping the medications I became brave and let him do his dosing in the morning on the weekends with his breakfast. That went smoothly too!  Yay!  Now we actually freed up our weekend time so we didn't have to be home by lunch each day. You can't even tell at this point that it has any effect on him and he reports not noticing a thing when he eats it.  That is good because that is the goal!

Today does mark the end of the 12 week maintenance period.  The allergist already had several kids arranged to do their challenge tomorrow on the 9th, so we opted to wait another week and have him go next Friday, January 18th when he is out of school. It will be another long day of sitting in clinic for at least 4 hours while they build him up in 4-5 peanut increments every 30 minutes to a total of 15-16 peanut equivalents. He will have to eat it all in powder form so that should be interesting trying to mix all that powder!  I hope he can make it all the way. If not, he will go back on daily maintenance and will get the chance to try again.

I will post more details on how the challenge will go as the allergist sends them to me. That day is also my birthday and I can't think of a better present than to watch the little guy succeed. It would be a win for us all.

To be continued...

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...