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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...

Thursday, September 20, 2012

8th Clinic Visit--September 19, 2012

What a busy day for the little guy.  As soon as he woke up this morning he told me his throat hurt.  I checked it out and it was only a little red.  He had a little sneezing and sniffling before school, but he didn't have a fever so I sent him on.  Thankfully, he had a good day despite his symptoms and I never received a call from the nurse.  In the meantime, I called the study coordinator to tell her about the little guy's symptoms.  She told me to bring him over after school and the allergist would check him out to see if he could escalate the dose.  You have to be very careful with illness when dosing the peanut, and doses are always to be held if a fever is involved. 
When I picked him up he looked worn out.  But we soldiered on in and even the allergist agreed he didn't look like he felt very good.  He didn't have a fever, so the allergist felt we were OK to try.  Especially since he didn't get sick on Tuesday--sometimes a reaction will happen the day BEFORE you start showing signs of illness.  I set him up with his paper and pens to draw and he showed no signs of trouble the whole 2 hours!  Yay!  He is now up to 100mg of peanut protein, or 1/3 of a peanut!

Just when I thought my worry brain couldn't process anymore yesterday I was given new paperwork from the allergist that the study protocol is changing--right now.  The original schedule had the little guy going back 5 more visits to escalate his doses--125mg, 156mg, 190mg, 250mg and then 300mg.  Now, starting in 2 weeks he will go to 200 mg and then his final visit in another 2 weeks will be the 300mg!  This change is based off the fact that research is showing the larger doses are tolerated better, so moving faster appears to be safe and well tolerated.  The new protocol also cuts his 1 peanut a day maintenance down to 3 months from 4 months. 

The major change that has me worried is that once he can pass his food challenge AND have his blood IgE to peanut below 15 he will have to intentionally avoid all peanut products for one month and then go back for another challenge to see if he actually has developed desensitization versus tolerance.  They have added this step now to try to give a better assurance of patient safety after the study is over. 

The little guy has a lot to overcome in the next month.  We have to start weaning his stomach medications off so that he should go to maintenance dosing without them.  I thought we had at least 10 weeks!  We only have 4!  He will be able to go slower if he doesn't tolerate the big jumps.  Something tells me though given all the good days he has been having, and even being able to tolerate his dose with a bad cold, I think he is moving in the right direction. we are facing the fact that in as little as 4 months he could be eating a peanut butter cup or peanut M&M.  I will continue to pray we can get there.  He has come so far and I have seen so many positive changes in him.  Quoting a phrase I am told on a regular basis, "Just take it day by day".

to be continued...

Monday, September 10, 2012

Smiles--September 10, 2012

Today I was told by the little guy as soon as I picked him up from school that he had a smile on his face all day. He was just beaming and you could tell he was proud of himself. The teacher gave me the thumbs up and said it was a great day.  That was so good to see. Hearing about days like that where he can turn it all around and tackle school with a smile makes wading through all the rough days worth it.

That is the same way I feel about peanut dosing right now.  After his rocky month of August, he has done a great job with his last 6 days of 75mg. It seems all his immune system needed was a little pep talk and going back up this time hasn't even bothered his allergies.  No extra sneezing or stuffiness in the morning. He may still get sick during this dose, but if he does I am more confident that it is just due to one of those fluke circumstances and not his inability to tolerate it.  Who knows what the next dose will bring but for right now, he is happy and I'm relieved we can finally enjoy a couple of tiny victories. 

To be continued...

Thursday, September 6, 2012

7th Clinic Visit--September 5, 2012

Here we go, back where the little guy started 6 weeks ago. After his one after school reaction last week, he did great the rest of the week.  Of course, once I told him he would keep throwing up after school unless he drank the water I packed, his lunch box magically started to come home empty with all the liquids gone.  He is a quick learner. 

He did a good job at clinic yesterday.  He didn't have any trouble going up on his dose, back to 75mg of peanut protein.  That is 1/4 of a peanut.  The allergist is hopeful that staying on the 50mg dose for a month will be the push he needed to tolerate it.  I fixed a little desk area in the hallway and he just sat and drew houses for 2 hours.  It really is nice having that 2 hours at clinic to spend with him.  It is hard to find quiet time in the house after school when his sister is on the loose.

I did ask the question that I dreaded to ask--if he did not do well again going up on the dose, did that mean we were done? out of the study?  Thankfully, the allergist said that we could continue, we would just have to go back down to 50mg again and stay there at least for another month or so if we were willing.  Even though that would drag things out longer, it would be worth it.  Our whole family has sacrificed so much so far to be a part of the study, I hate to stop.  From talking to the allergist, I gathered that the little guy was one of the few having trouble with the study in the group he is with.  Seems like participants who had even higher IgE levels are not having any trouble escalating their doses.  The little guy had one of the lowest levels that was measured in this phase.  The allergist said that is why he really doesn't put much stock in the lab work because it gives no real indication how people will react. 

Today he took his second dose of 75mg after school.  I could tell it bothered his allergies some, but he never became quiet (our doom signal) so everything went well.  That is an improvement from the last time he did this.  If he can make it through the weekend without getting sick, I think he will be o.k.  He seems to really like school--some things he will tell us but the majority of the day I am told is a "secret".  At least he is smiling when I pick him up and is non-stop energy until his head hits the pillow at night.  Now that the initial stress from school is over, hopefully peanut can have some smooth sailing for a while.  The little guy is certainly due.

to be continued...

Wednesday, August 29, 2012

New Hurdles--August 29, 2012

Yesterday when I posted the little guy was at school and hadn't had his dose yet for the day.  It is a good thing I posted when I did or I may have been too discouraged to do it at all.  He finished his third day of school yesterday and he is doing fairly well except for a few things.  With all the "new" things he is being exposed to, he seems to be leaving eating and drinking much during the day until he gets home.  I made sure he has money on his account to buy milk and he refuses to do so.  Not a problem if he would drink the bottle of water I put in his lunchbox, but he won't.  For just any kid this would not be a problem and would work itself out.  For a kid who has to come home and dose his peanut, this does not make for a good afternoon.  When I picked him up yesterday he was sweaty and you could tell he had been having fun on the playground.  That was great to see.  But in my "medical" perspective I had a bad feeling about his peanut since he was overheated and dehydrated from lack of fluid intake.  He drank water in the car on the way home and I filled him up with a heavy snack at home.  He is starved when he gets home and will eat anything I put in front of him.  The little guy ate his peanut and went on drawing pictures of houses--his latest craze.  Within 15 minutes he got up and ran to the bathroom and vomited.  It even came out his nose so he was screaming from that.  He then started sneezing (at least 20 times) and had excessive runny nose.  I had to give him benadryl his symptoms were so bad.  His poor nose closed up so badly he couldn't even blow it.  No other symptoms though, thank goodness.  After about an hour he was more himself and he did eat a good dinner.  But as soon as dinner was over it was time for bed!  Poor guy!  He didn't even get a chance to have any fun after his school day.  Hopefully I feel more guilty and bad about it than him.  I tried to tell him how important drinking fluids at school is.  I pack plenty of water bottles for him in his book bag, it is just a matter of him learning to speak up for himself and learning to take care of himself.  I hope getting sick with his peanut will help him learn sooner rather than later.  We have all sacrificed so much over the last 4 months to have something like this bring the study to an end.  But, school is priority number one now. 

I am anxious to see how he is when I pick him up today.  He was still very congested this morning from his allergies.  I think maybe today I will only give him half a dose of his peanut and let his immune system settle down.  He does have to go back next week for a dose increase back to 75mg.  I pray we can get the school routine settled and give him the best chance to succeed--on all fronts.  He is a brave little kid and I am so proud of him.

to be continued...

Tuesday, August 28, 2012

A step back and a slow creep forward--August 28, 2012

Remember me?  Yes, I do post here.  It has been a while, too long in fact since my last post.  We have had some interesting times here in the little guy's house so I just couldn't find it in me to put into words all we have been through.  I believe we left off on 7/27 with the little guy getting sick from the new dose.  Well, he got sick again with the 75mg dose on 7/29/12.  That time it stayed down for 1 1/2 hours before coming up.  Since the allergist had left to visit Mickey Mouse for the week I decided to double his H2 blocker dose to twice a day and see what happened.  That next day his Nana ended up in the hospital unexpectedly for a week so I had a lot on my plate...trying to keep all the news from him as to not upset him and cause him a greater chance to react (the allergist says that stress has a higher likely hood of causing a reaction than illness), and also trying to be at the hospital as much as I could to be with my mom.  Luckily the good Lord must have known I could only handle so much that week and the little guy did fine with his doses.  He had a fun birthday, or as fun as we could make it with everything we had going on!  Give the kid some Legos and he will never be disappointed! 

All was well until 8/5/12 when he got sick again with his dose.  I was hoping this was a fluke but all week, even though he kept it down, he never really looked good for the 2 hours we had to wait it out.  Monday the 6th came and he got sick yet again.  This time his nose became really stuffy and runny and he complained of an itchy throat after vomiting.  I had to give him benadryl since it appeared his reaction was worse than it has ever been.  By now, the allergist was back from vacation and I gave him a ring.  His advice despite our efforts was to go back down on his dose to the 50mg daily that he had done well with.  He feels he may be one of those people who needs longer at these higher doses and maybe the 75mg was the "threshold" that his immune system has to accept.  So, needless to say we didn't have a clinic visit on 8/8/12 like we were supposed to.  We just picked up our new bag of 50mg doses and restarted that at home.  His allergies stayed flared up all that week.  He has a lot more sneezing and runny nose in the morning and allergic shiners under his eyes when the peanut dose is bothering him.  He did well and we cut the H2 blocker dose back to once daily from then on. 

He did have one more reaction the following week.  This was the day we were going to have a visit from my mother's cousin from Hawaii.  The little guy had never met her and this was a special day.  After dosing that day I could tell the dose was not going well and he was not himself.  Of all days, it would have to be the day he got the chance to visit with a distant relative!  argh!  He didn't get sick by his 2 hour mark so I wasn't sure what was going on with him.  We traveled back to our house and 4 1/2 hours after taking his dose he finally vomited.  Of course his sister witnessed it and it scared her so badly she was shrieking and refused to try to "potty-train" for the next 2 days. 

After that, all of his days went well.  His next clinic visit was supposed to be 8/22/12 but after some thinking I talked with the allergist to see if we HAD to go up that week of if we could hold the course.  See, the little guy started Kindergarten on 8/24, so knowing how stressed he might get from that I was scared to death to go back up right at this pivotal time in his life (and mine!).  He agreed that leaving him at 50mg for another 2 weeks would be fine.  So far he has been doing great and school is going better than expected.  It certainly has not been without tears, but he seems happy, talks about the kids and tells me about his days. 

Much has happened this month--out of many bad circumstances has come much to also be thankful for.  But let's just say I'll be glad to turn my calendar to September...

to be continued...

Friday, July 27, 2012

Plans Derailed--July 27, 2012

I think I am giving up on making plans. I should know better now than to announce big plans and brag on the little guy. But I at least like to TRY to see the glass half full. It is hard to go through this process without being overly optimistic. You would lose your sanity if you weren't. The little guy was fine yesterday. No problems with the new dose. Today, though, was different. We did all of our same rituals but the outcome wasn't the same. Within 15 minutes of eating his dose I could tell he was getting quiet. He hasn't been quiet in quite some time. Within 30 minutes of dosing he was on his way to the bathroom to bring the peanut back up. His little sister loves to follow us around so she got to witness the event and she began screaming and crying since it scared her. Good times. Luckily once he cleaned himself out, he was fine and said he was all better. He went back to playing and jabbering away. He did remind me in the middle of it all, "you know I don't like this". But this time he said it with more annoyance in his voice than being upset. Like it was an "inconvenience" to him. This whole process has matured him a lot. I spoke with the allergist and we will hold the course and not try to stop any medications for now. He is hoping it was just a fluke. He said sometimes this happens and there is no rhyme or reason to it. Let's hope and pray that is the case. I was going to cut the PPI in half tomorrow, but not now! I now have a 3 month supply on order from the pharmacy. How is that for optimism! to be continued...

Wednesday, July 25, 2012

6th Clinic Visit July 25, 2012

Today was a good day for the little guy! He did really well over the last 2 weeks with 50mg of peanut. So he marched back in this morning to greet the allergist, have his vital signs taken and eat his new dose of 75mg! That is now 1/4 of a peanut. He didn't have any trouble today so hopefully that means a good week ahead.

We will be making a change in his medication regimen. The allergist would like to keep him on both stomach medications for a few more days to make sure the new dose settles well and then start taking away the proton pump inhibitor. I will cut the dose in half and see if he still does well. Hopefully then after another week or so he can stop it and he will be on one less medicine before school starts!

The little guy received more good news today at clinic. Since his peanut dose is at a higher level, he is now able to eat foods that state they are made in a facility that processes peanuts or even foods that say they may contain peanuts! He can now eat M&Ms (not peanut of course) and any other candy or food that does not overtly contain nuts! Granted, we have certainly found our little group of foods that we like and are safe. There are plenty of ice creams and cookies that he can have, but now just going out to eat, going to a birthday party or even trick or treating at Halloween will be different for him. Eating a M&M may not seem like a big deal, but to an almost 6 year old that has never had one, this is a huge deal to him. I think he will start to see now, finally, just why we have put him through all this. He was so excited today to hear today that he could eat some new things....but chances are he will be just as happy with his chocolate Oreo ice cream!

The little guy certainly has a big week ahead--Hopefully lowering his medications and a big birthday! I am in charge of making a large cake with the United States on it. I could "outsource" the task now to a bakery since it is safe to do so, but baking cakes for the little guy over the years has brought me such joy. It just wouldn't seem like a birthday if I didn't get to put my love into it.

My challenge for you all out there in blog land is time you are at the store, scan the nutrition label and look for any mention of peanuts in the ingredients. You may be suprised how many products mention they are processed around peanuts, even though you would have never thought they would be.

We are making small steps forward and I am thankful for each and every one.
to be continued...

Thursday, July 12, 2012

5th Clinic Visit--July 12, 2012

Whew!  What a week for the little guy.  He has one more day to go of Kindergarten camp.  He has definitely had some tears, but I hope they stopped once he gets past the classroom doors.  Due to his allergy, he has had to sit by himself away from other children at snack time.  I sure am glad we are in the study so that he will hopefully change that by the time school starts.  All in all, he has fought back the tears and proved he can be a big Kindergartener this year!

The little guy also showed today that he can handle 1/6th of a peanut!  He is up to 50mg of peanut protein now.  I think it is possible now to actually cut a peanut into 6 equal pieces!  What he is able to eat is a substantial amount of a nut!  According to the allergist, this dose is a turning point for him.  In looking at the data from other university trials, once the participants got past the 50mg protein dose, the incidence of reactions really declined.  It seems like the immune system can fight you more up to this point and then finally begins to settle down.  This doesn't mean that he won't have issues once he gets to 75mg or higher, but the odds are even more in his favor for finishing the study if he can!  That was certainly good news.  He will continue to stay on both stomach medications for the next 2 weeks to give him the best chance.  Today we went to the allergist's  patient clinic hours since we missed our actual peanut clinic yesterday.  The little guy was the only peanut participant there today, so sitting in a waiting room with soap operas playing on the TV for 2 hours was a little trying.  He didn't seem to have any issues with the dose and played on the iPad tirelessly the whole time--games about the United States, building virtual Lego towers, learning about money/coins.  I sometimes wonder what my generation did as a child for entertainment.  I did have a little pink ball I used to talk to--her name was Amy.  Thank goodness Steve Jobs came along.

After clinic, I treated the little guy to a cone of chocolate ice cream on the way home.  He was happy as a lark and was wound up like a top once we got home.  I am so proud of all he is accomplishing.  I pray he will continue to progress and that these next pivotal 2 weeks will pass smoothly for him. 

He has a birthday coming up soon...we certainly will have a lot to celebrate and be thankful for this year.

to be continued...

Friday, July 6, 2012

Hot, Hot, Hot! July 6, 2012

Can it get any hotter? It is probably hotter in Death Valley California according to the little guy--our resident geography buff. We were fortunate not to lose power for long, so we have been basking in AC all this week--until this morning. Our 1st floor AC stopped today, so I put in a stat call with hopes they could work us in to be fixed. Peanut has been going really well for the last 2 weeks. He will stay on the 25mg dose 1 extra week due to the holiday and the allergist being off. We don't go back for another dose escalation until next Thursday, the 12th. I thought today would go fine, but with the extra heat in the house, despite fans running like crazy, I was a bit concerned. One day last week while we were on vacation, he got a little overheated and dehydrated and developed stomach cramps with his dose. He never got sick, but he certainly complained of pain for a while. Today, I tried to fix lunch quickly so I could get both kids upstairs to stay cool where we did have AC. It was still stuffy up there since that unit was working overtime. He seemed fine, but as soon as I sat down in his sister's room to put her down for a nap, I heard him gagging in the hall. Fortunately, once it was all up he was fine. And then the heat pump guy showed up! Yea! He ws able to correct our problem in no time and the AC cranked back up. I guess tomorrow we will stay in and try to beat the heat. I hope that is all it was today, was a reaction to the temperatures. I know I was sweating just trying to fix lunch! Next week he will have a lot more to tackle than peanut. He has Kindergarten Camp! Five days of seeing what big kid school has in store for him. I certainly hope he can turn a new leaf and show them he can do it! to be continued...

Wednesday, June 20, 2012

4th Clinic Visit--June 20, 2012

Today was a good day. I always get nervous the morning of clinic days. The uncertainty of it all. I guess if the little guy wouldn't have had the bad reactions at first, I wouldn't get uneasy in MY tummy. The little guy, on the other hand, spent the morning busy building Legos and horse playing with his sister. Today was a confidence builder though. Today we had to break our safe routine of eating lunch and then eating peanut. Since school is out for summer, this was our first morning clinic visit. I packed a heavy snack for the little guy and hoped that would be enough on his stomach to keep it settled. There is only so much food you can get the little guy to eat at 10:30 in the morning! He marched on in and went through our routine of vital signs and listening to his chest with the allergist. I mixed up his new dose in the cinnamon applesauce he has become quite fond of, and the 2 hour waiting game was on. Today, he is now up to eating 25mg of peanut protien, the equivelant of 1/12th of a peanut! (or in his terms he is eating Virginia, North Carolina, Texas, and California!) Pretty amazing! He did really well today, with no complaints at all. What a blessing. The allergist is pleased with how he is doing but is unsure himself if the positive change has been from the 2 medications or if it is his immune system showing a positive change. After the next 2 weeks he wants me to start slowly peeling off the proton pump inhibitor and see how he does. Until then, we will try to enjoy some family time having the little guy's Daddy off from work for a week. I know the little guy will have a great time with him and I will do my best to give my worry brain a little vacation too. To be continued....

Monday, June 18, 2012

A Smooth Road--June 18, 2012

So far so good. It has, thankfully, been an uneventful 2 weeks for the little guy. He was certainly due! He has not had any issues getting sick with his dose and really acts more himself the whole time after taking his dose. I can tell his allergies in general bother him a bit more the first week or so after changing doses. Guess the peanut gets his whole immune system geared up to everything a bit more. I hope that the reason these 2 weeks have been better is that his immune system is finally accepting the peanut as a "friend". He is still taking 2 different stomach medicines, and will continue to do so until at least after the next dose. I think he actually enjoys eating it each day. He gives me instructions to get it ready for him while he is eating his lunch! It has been nice to have things a little more normal around the house after our first month. Let's pray this Wednesday will bring the same good fortune as he heads back to clinic for another dose doubling!

Wednesday, June 6, 2012

3rd clinic visit--June 6, 2012

Today was a big jump for the little guy! He has been eating 1/50th of a peanut and now he will go to 1/25th! He is very into learning about the United States right now, so I told him it was like going from eating 1 state a day, to eating 2 states a day. That got a really big grin out of him. He told me he wanted to eat Virginia and North Carolina.

Our pattern has been eating lunch each day immediately followed by eating his dose. To keep with that safe pattern, I packed a picnic lunch today so that we could eat at the clinic and try not to mess up our routine. He was very excited and chatty on the way so I hoped he wasn't worried. He has done well for the last 10 days, so hopefully any thoughts of bringing the peanut "back up" weren't in his mind. I brought our trusty little pink basin just in case. He went in and greeted the allergist, had his vital signs taken and took down 12 mg of peanut protein. I have found that if he stands up for a little while after eating his dose he seems to do better. Could just be coincidence but he is a good sport and plays along. He played his games on the ipad and was very chatty the whole time. He always seems to get a little itchy, rubbing is nose and such, but otherwise the dose went great today with no belly pain at all. Plus, we had a great ride home this week! Yay!

We did get to see another participant today doing his final food challenge and that was really encouraging. According to his mom, his peanut allergy numbers were "off the chart" when they started the study! He had to stay on the 0.1mg dose for three weeks he developed hives so badly. He started the study last June and today was able to eat the total of 14 peanuts! Wow! He ate 2, then 30 min later ate 4, then 8! And he did great with no side effects. His mom said they did have to deal with hives, belly pain, and diarrhea off and on through the study but seemed like his symptoms had no rhyme or reason. Kind of like how the little guy is experiencing them.

For now the allergist wants the little guy to stay on both stomach medicines and maybe try taking one away in early July if all is going well. Here's to better living through pharmacology! He did have the lab work back which checked for 5 different allergen components in a peanut. The little guy was positive for 2 of the 5--the rAra h 1 and rAra h 2. Basically that means that he does have a "true" peanut allergy. He was negative to the part that causes only oral itching and also negative to the part that cross reacts with other foods in the legume family such as peas and Lima beans. It is hard for me to describe these tests very well, so have attached a link that gives a description of the Ara h 2 test and it's importance in peanut allergy. But basically what this tells us is that the clinical trial probably won't go smoothly since he is truly highly allergic to peanut. The allergist said that if he was not allergic to these certain components he would more likely be able to breeze through the study with no problems. At least we know we are helping him tackle a serious, life threatening problem. Other good news is he tested for some seasonal allergies and he is allergic to oak, but does not appear to be allergic to any major grasses or weeds. Also no allergy to wheat or macadamia nuts! He should be able to eat a delicious chocolate covered macadamia nut candy my mother's cousin sends us from Hawaii one day!

I am very thankful he had such a good day. I pray the next 2 weeks will go just as well.

to be continued...

Monday, June 4, 2012

Countdown--June 4, 2012

One day left!  Only 1 day until we go back to clinic to increase the dose of peanut for another 2 weeks.  I have been afraid to post anything since he has been doing really well with the thought that I might jinx him.  Certainly don't need any of that!  He has been a lot more active after his last several doses and not being as quiet so I take that all as good signs.  It will be interesting to see when the dose gets doubled this week from 6mg (1/50th of a peanut) to 12mg (1/25th of a peanut) if some of the stomach symptoms come back or just how he will react.  He is still taking 2 different stomach medicines each day, so I will discuss the plan for those with the allergist Wednesday as well. 

It seems like a lot of work for something that will not "cure" him.  In no way will he be able to eat a peanut butter and jelly sandwich or peanut butter pie when this is done.  But the goal in doing all this is to keep him safe from accidental exposure.  He will still have to eat small amounts of peanut items on a regular basis to keep his immune system from rejecting peanut again.  Completing this would mean he could eat at any restaurant he wanted, go get ice cream treats anywhere he wanted, and most importantly (to him) not feel different from his friends by having to pack different snacks and worry about food at birthday/school parties.  Most importantly to me, as Mama, I would feel safe with him leaving me to go to school or out with friends.  If this works, it will be a huge step for our whole family. 

I appreciate all the thoughts and prayers everyone has expressed for us.  I know we will have our ups and downs, but it means a lot to know we have a cheering section!

to be continued....

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!