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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...