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.
Soooo....here 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...
Thursday, September 20, 2012
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...
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...
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...
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...
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 this...next 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...
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 this...next 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...
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