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Tuesday, May 29, 2012

Sunny Days--May 29, 2012

School is out, summer is here, it is time to have fun!  At least that is the mindset I am trying to hold onto.  This is the little guy's last summer before Kindergarten, so I want him to have as much fun as possible and have good memories despite our peanut adventure.  He has done really well since Saturday, only complaining of some fleeting belly pain today.  The process has become labor intensive trying to get the medications in him at the right time to try to ensure success.  Probably partly because once I find success in a certain schedule I stick to it like glue, afraid that if I vary the timing of each medication or lunch that he will get sick.  Hopefully as time passes and routines are forced to change, he will show me that it will be o.k. and he won't react.  The little guy continues to be a good sport about it all--it is just so hard to keep him still and busy in sedentary activities for 2-3 hours when it is so nice outside.  So for now, we are cramming in outdoor water fun, bike riding, digging in the yard and playground time in the mornings and late evenings trying to let a kid just be a kid.  And I will continue to pray for more sunny days ahead.

to be continued....

Sunday, May 27, 2012

Roller Coaster--May 27, 2012

This whole process is becoming quite confusing. Today, we did the same thing as yesterday--eat lunch and then eat a little peanut. I couldn't even eat lunch today I was so nervous(this study will do wonders for my waistline!). He didn't get upset when it was time to eat it. Maybe the whole getting sick process happens so fast and the nausea comes in waves. Hopefully it is not as traumatic to him as it appears to be. Today after eating it he played and talked--a lot. I can always tell when it isn't going well because the little guy gets really quiet. He never seemed like it bothered him at all today and he said his stomach was fine the whole time. Go figure. I am so thankful he did well, but I don't understand how 2 days can be so different when nothing we do changes. And who knows what tomorrow will bring. This sheds new light on the phrase "take it day by day". To be continued...

Saturday, May 26, 2012

A Step Backward Again--May 26, 2012

Today was a great day for the little guy overall--lots of fun on the playground, playing outside water games with his sister and picnics of breakfast, lunch and dinner on the back porch.  Thank goodness for the good times.  Peanut dosing, once again, was not so pleasant.  He is taking 2 medications to help with acid in his stomach now, and he has each in the morning at different times before the dose.  He ate a great lunch and willingly took his dose.  Today it only took 15 minutes for him to say he was going to be sick.  He was able to walk around and hold it off for another hour before everything came right back up.  It was very upsetting to him, but then you could tell he felt remarkably better.  He asked for a yogurt smoothie within 5 minutes!  I talked him out of having that so soon, but then he was a bundle of energy for the rest of the day.  So the million dollar question much is enough?  There is no answer as to when or if his body will ever accept it, so when should the decision be made to soldier on or throw in the towel?  I pray each day I will know when the time is right.

to be continued...

Friday, May 25, 2012

Thankful--May 25, 2012

Today I am thankful the little guy did really well.  He had no stomach pains at all, according to his report.  He seemed more like himself as well during our 2 hour window after the peanut dosing.  He even reminded me not to forget to give him his peanut.  A shocking change from the greeting I received yesterday!

So today I am thankful and pray to continue to move forward.

Thursday, May 24, 2012

Cautiously Optimistic

Today may have been the toughest day yet. He started his new medication this morning. I told him it was going to make his stomach feel really good today. Here's to the power of positive thinking! The plan would be to give him the dose with lunch. So after school lunch was prepped for the kids and I just couldn't even bring myself to eat. I let him finish most of his lunch and then brought the little cup of peanut into his sight. As soon as he saw it he started to cry and told me he didn't want to eat it. Oh dear. This new medication had better work or our journey is going to be a lot shorter than planned. I convinced him to eat it and he seemed ok for almost an hour. He then started to complain about his stomach and we got up and walked around and it seemed to pass. This happened 2 more times in a 2 1/2 hour period and finally after 3 hours he wanted a snack. He then had some food and tolerated it well. I could tell his demeanor was back to normal. He made it through and he told me it wasn't near as bad as yesterday. I hope it will get better each day as the medication gets into his system more. I don't like the thought of putting him on medication. It feels like a rock and a hard place. Any way you look at it there is risk--using medications to continue the study or electing to not treat his peanut allergy and risk allergic reaction from accidental peanut exposure. The little guy will never know how hard it is for me to make these decisions and watch the consequences. You just do the best you can each day. Keep praying we move in a postive direction. To be continued...

Wednesday, May 23, 2012

2nd Clinic Visit--May 23, 2012

The little guy is so brave.  I don't know that I would have had his courage at age 5.  Heck, I didn't know he really had it in him. 

He was in good spirits today when we arrived in clinic.  He "graduated"  to the next dose which is 6mg of peanut protein.  This is the powder form, and hopefully this would mean less side effects.  He did well until about 45 minutes into the dose and then he started to complain his stomach hurt.  We got up and walked around in the hall and the symptoms continued.  The allergist then had me give him 1/2 of a chewable antacid we brought along.  After about 10-15 minutes things seemed to be going well and he said his symptoms were all better.  He continued to play on the ipad and then finally our 2 hours were up! Yeah!  He made it through today.  The antacid seemed to do the trick.  We went out to the car, started up the interstate and passed the last rest stop before our exit (Do you see where this is going??).  At 5 miles from our exit he all of a sudden said, "Mama, I'm going to be sick!"  Luckily, being the planner that I am, I asked the allergist if we could bring the small emesis basin with us just in case.  Sometimes I feel like my intuition is a blessing and a curse.  I whipped that sucker out of our book bag and handed it back to him just in time.  The only problem was that there was nowhere safe to pull over on the interstate, so the poor little guy had to sit with that under his chin for 5 miles until the exit.  He just kept saying " I don't like this Mama, I don't like doing this!"  Oh, I could have just cried right there.  We were finally able to joke that his stuffed monkey did it and that got him to laugh. 

Once we got home and he was cleaned up, I made a call to the allergist.  He feels we need to proceed with a prescription proton pump inhibitor (stronger acid relief) beginning tomorrow.  They have seen success in helping people through these symptoms with these medications so if we want to keep trying, this is our first option.  I was too afraid to ask how many more options there were if this didn't work because I just can't imagine having to quit.  He will take this medication daily, for at least 8 weeks, if it works for him.  These medications are VERY hard to find in a pediatric formulation so after making calls to lots of different pharmacies, I had to speak with the allergist again and change brands of medications.  It just seems like we cannot catch a break!

The lab results from last time were not back yet, so next visit we will review those.  The allergist and I talked a lot about the other participants that had the vomiting issue and for some it got better and then for 2 it did not and they had to leave the study.  I asked if we had started on the first dose and not escalated so quickly if that would have made a difference and he felt it would have just prolonged it--basically if it was going to happen it was going to happen.

I talked to the little guy tonight and reassured him that we are only trying to help.  He was in such good spirits and acted as if nothing happened.  He had a great evening, ate a good dinner and played hard.  I am so thankful it passes quickly for him.  I wish it did for me.

to be continued.....

Monday, May 21, 2012

A New Plan May 21, 2012

I find this process fascinating.  The concept sounds so simple yet even 2 weeks into the process I have found out just how complicated this journey will be.  I spoke with the allergist this morning and told him our tale of woe.  I am at least comforted in the fact that he has seen this before and it is well documented at other medical center trials, too.  We do have options to treat the vomiting if it persists--the treatment will be acid reduction in the stomach with some over the counter medications and prescription ones if necessary.  The treatment for today and tomorrow until we go back to clinic Wednesday is to hold his dosing and give his body a chance to recover.  As much as that scares me not to give it to him and miss 2 days, I also had a big sigh of relief that he could have a "normal 5 year old" afternoon of playing.

I assumed the next words out of his mouth after hold the dose would be that Wednesday we would decrease the dose--that the 3 mg was too much too fast.  Just the opposite.  Our plan would be to proceed on and double the dose.  There went MY stomach in a knot again.  Here is why...there has been research showing that when introducing peanut to the gut of allergic individuals that the longer the gut is exposed to low dose amounts the more likely it is to react.  Going up on the dose is one way to eventually "beat the immune system into submission" as the allergist put it.  For some, continuing to escalate the dose up will stop the immune response and the body accepts it as no longer being foreign anymore.  For others, they are not so lucky and the stomach symptoms, with cramping and vomiting, never stop.  Great.  After hearing that I hope and pray the little guy is one of the lucky ones and that we can help him through this patch.  I don't even want to think about having to drop out of the study.  That is the only option if things don't turn around.

Another reason going up might help is getting to the powder formulation that happens this week.  The allergist has really hyped up this powder--sure hope it is worth the wait!  The liquid preparation he is taking now in juice is mixed with a very salty solution that not only can cause mouth reactions, but upset stomach as well.  The powder form can be mixed with soft foods--applesauce, yogurt, etc., so the allergist hopes he will tolerate it much better. 

So this Wednesday we will take our cinnamon flavored applesauce, a little bottle of antacid, and all our books and snacks and trek back to clinic--ready to let his little immune system know who's boss.  Anyone reading this is welcome to offer up a prayer for him around 1:30!  He can use all the help from above he can get!

to be continued....

Sunday, May 20, 2012

Ups and Downs May 20, 2012

Well, I guess I can eat crow.  I did a wee bit of bragging feeling proud of the little guy and it has been a bit of a downhill slide since then.  On Thursday, he seemed to do really well, was talkative and happy after his dose.  About 1 1/2 hours after the dose he was having an apple snack and I heard him cough/gag.  Sounded like choking.  I asked if he was OK and he pointed to his neck and said "it is stuck!!".  He then proceeded to vomit everything up.  I really did think he had choked but it did cross my mind that maybe he had reacted to the peanut.  Friday, he developed an upset stomach and had to lie down for about an hour, but he never became sick.  Saturday, there was no problem at all.  Happy as a lark!  So today, I did EVERYTHING the same as yesterday--same time, same snack, same activities.  He seemed to be doing well.  No complaints from him.  I never ask him if anything is bothering him to try to avoid the power of suggestion.  We were sitting on the porch together playing a game on the ipad and an hour and 10 minutes after his dose he proceeded to stand up and vomit everywhere--and A LOT.  I think it really scared him this time.  He never cried but he turned to me and said "I really don't like this Mama".  It just broke my heart.  Once everything was over he rebounded quickly--and I didn't have to treat him with any medication.  He even had pizza for dinner!  That is how odd these reactions are.  He can get so sick one minute and then 2 hours later eat pizza and a fudgesicle--then ride his bike around the block.  Guess I will be calling the allergist tomorrow for some guidance and explanations!  I just pray this is temporary.  There is no way the little guy can continue this if the stomach symptoms don't subside--and soon.

to be continued....

Wednesday, May 16, 2012

Week 1 complete! May 16, 2012

Today marks the end of the first week of peanut dosing. The little guy has tolerated everything pretty well. The mouth itching hasn't been an issue anymore. He does seem to get more subdued after he takes the dose for about 1/2 hour. I noticed a few days when he was playing legos on the floor after taking his dose that he began to develop a rash on his knees. Crawling around on the rug does not cause him to break out normally, so I guess eating the peanut must make his body more "sensitive" in general for awhile after eating it. Very strange. After about an hour the rash was gone each time. I will certainly be asking the allergist next week if that is something other kids have experienced. The only other issue the little guy has had was one day of "tummy ache". I decided to have him try playdoh one afternoon so he wouldn't crawl around and develop a rash. About 20 minutes into it he started to complain of his stomach hurting. The allergist did say that it was important to engage in quiet activities for at least an hour, if not two after taking the dose each day. Any increase in heart rate can cause a reaction. Not exactly very easy for a 5 year old! So, today since the weather was so nice we sat on the porch and had no trouble at all! Will be interesting to see this next week if the symptoms recur or if his body is finally getting used to the dose. to be continued...

Friday, May 11, 2012

First Home Dose--May 11, 2012

Today is the day.  Today is the day I give the little guy his first dose at home--all by myself.  Yesterday evening I thought all my adrenaline had settled down and I could finally relax.  Then as today went on, the anxiety started to build again as I thought about him eating his first dose at home.  The last 2 days we were surrounded by many trained medical professionals and were at a hospital clinic!  Now today I felt the same way I did 3 years ago when I fed the little guy peanut for the first time--scared to death.  At least this time I knew the outcome should not be the same as three years ago, but it is hard not to worry.  I waited until his sister was down for a nap so I was not distracted.  We mixed it in plenty of juice, chased it with plenty of juice and he had about 10 mini nilla wafers.  Maybe we will finally be able to put a little meat on the little guy's bones over the next year!  He will be eating A LOT of snacks!

This time with all our extra food he didn't have any mouth itching or any symptoms at all.  He played Legos for about an hour after the dose and showed no signs today of being uncomfortable.  Whew!  I think home dosing will go a bit smoother from here on out.  This is going to be a great yet difficult year at the same time.  Even though he tolerates a dose one day, it is no guarantee that his body will cooperate the next.  I know to keep the mood light and not talk about any of that with him, but boy is my mind turning with the "what ifs" inside.  I just say a little prayer everyday for him.  It will all be ok.

to be continued......

Thursday, May 10, 2012

Day 2--Return to Clinic and the Dreaded Blood Work! May10, 2012

Today we returned to the clinic for the little guy to eat his 3mg of peanut again.  He didn't have any problems after going home last night.  He played and ate a big supper with dessert!  I'm not sure where he put it all after eating all those snacks!

The allergist didn't suspect we would have any trouble today, since everything went well yesterday, so he took his vital signs, assessed his lungs and the little guy drank down the dose with more juice.  We went to the waiting room  and within 5 minutes he began to complain that his mouth was really itchy.  I gave him another drink of juice and after about 5 more minutes he said it was getting worse.  I got the allergist and he checked him out and everything else looked good.  He feels the little guy will have this trouble for the next 2 weeks while he is on the liquid dosing.  Once he "graduates" to the next dose, it will be in powder form and people do not find that as orally irritating.  Once again, just like yesterday, after 30 minutes all the symptoms subsided.  After about an hour it was time for the real fun to begin.  Poor guy got blindsided with a trip to the lab chair to have his blood drawn.

The blood work serves a very important purpose in the study.  The researchers are able to analyze the blood of the participant to see what specific parts/proteins in the peanut that each person is allergic to.  I told the little guy that a peanut is kind of like a car--it has many parts.  People are only allergic to certain components and that is why some people just have itching while others go into full blown anaphylaxsis.  The allergist feels from observing the little guy that he will likely be positive to the oral itching/sensitivity parts of the protein.  He said that is the best kind to be allergic to.  When we go back in 2 weeks he should have the analysis complete and we can see just what the little guy is allergic to "in" the peanut.  Pretty amazing they can do that.  I am so thankful we are part of this study and it is so exciting knowing what he is doing will help others in the future get better too.

I digress...once we got to the lab chair the tears started--it never got as bad though as "the flu shot heard around the world" last fall!  He was very brave in February when he had blood drawn so I thought today might not be too bad.  The allergist missed the first try so we had a little more drama trying the second arm.  He was very still though and we just talked about his favorite monkey "Mo" and I did get a few giggles out of him while it was all going on.  Once we were done, both arms were bandaged up and as we went to leave I could tell he was white as a sheet--lips and all.  I put my arm around him, took our little bag of peanut syringes and he soldiered on to the car.  He had another snack and he pinked back up.  Of course he had enough energy to ask "what could we do as a special treat for me?".  And I made the mistake of asking "what do you want to do?".  Let's just say he can spot the most expensive Lego set on the shelf a mile away, and knows exactly how to melt his mother's heart. 

Having the little guy eat a little peanut is the best Mother's Day present in the world.

to be continued.....

Day 1--The escalation day May 9, 2012

He did it!  The little guy completed the first visit in the clinical trial and did great!  The trial itself will last at least one year from start to finish.  The final four months will be eating the equivalent of one whole peanut a day, each day.  The first 8 months will be a gradual build-up with bi-weekly clinic visits to get to that one peanut dose.  Today's visit was a big deal because the little guy had the opportunity to eat up to six doses if all went well and he could handle it without side effects.  By eating six doses, he would be able to knock 6 visits, or 3 months, off the study.  I was quite nervous for him.  He seemed pretty relaxed since he didn't really know what was in store for him!

We started in the clinic at 12 noon.  He had his vital signs taken, lung sounds assessed, and then the allergist had the first dose of peanut solution in a small syringe and squirted it in his mouth.  He was then required to wash the solution down with juice.  The solution tastes very salty but has no peanut taste at all.  After about 5 minutes he told me he had a bump on his lip.  There was an area of enlargement so the allergist came to look at him and assess him.  Evidently the liquid solution can be very irritating to the mouth and if there are any chapped lips or sore areas it can cause swelling or irritation.  We all watched him and he went on playing ipad and after about 20 minutes the symptoms subsided.  By 12:30 he was doing well so the allergist proceeded to obtain his vital signs again and he took his second dose of peanut.  This time we mixed the solution directly in the juice for him to drink and he had no problems at all.  So this is how the little guy's day went--every 30 minutes he was reassessed and given an escalating dose of peanut until he reached 6 doses!  The only other side effect he had was some itching on his neck with the last dose that got a little red, but never turned into hives.  It subsided after about 45 minutes.  It was a long day in a tiny conference room and we went through a lot of activities to distract him and keep the mood light--coloring, reading books and playing games on the ipad.  Plus, the allergist wanted him to eat snacks between each dose to keep his stomach settled.  It made me full just watching him eat!  Finally at 4 PM we were ready to leave! 

Mission accomplished!  The little guy actually ate 1/100th of a peanut today.  One peanut has the equivalent of ~300mg of peanut protein.  His first dose was 0.1mg of protein.  Pretty small.  Every 30 minutes his dose was doubled--0.1mg, then 0.2mg, then 0.4mg, 0.8mg, 1.6mg and the last dose was 3mg.  All in all he actually ate almost 6mg today.  Tomorrow we will return to clinic to eat the last dose he completed today, 3mg, just to make sure he tolerates it before the allergist sends us home with 14 syringes full of peanut!  He was so brave.  His Daddy and I couldn't have been more proud of him.

Did I mention he will have blood work done tomorrow?.......

Tuesday, May 8, 2012

Ready or not, here we go!

Welcome! We are so glad you stopped by! This is the eve of the first "escalation" visit. Tomorrow we will spend a good bit of time, around 5 hours, in the clinic starting our peanut dosing. Our little man will have the chance to eat up to 6 doses of peanut. And that would only amount to 3 mg!! I have been pretty calm until tonight and now i know i will have trouble sleeping. I certainly won't tell the little guy too much so he stays calm. I'm honestly not sure what he thinks will happen tomorrow other than eating a little peanut. I sure hope it all goes smoothly for his sake! More to come!