For some reason I have been having issues logging into this blog, so I am behind, but I really want to keep a record of our journey. I think I missed our updose to 25mg on Oct 17th. Kenny took him up and back in one day and he had no issues at all.
In the beginning of November Carter had a fever so we skipped his dose for one night, no issues at all the next night.
Nov 11. I took Carter up and we stayed at the Residence Inn again. No issues with updose and he's been taking his dose perfectly.
We were supposed to updose to 100mg last week, but Carter came home with a fever, so we postponed until Tuesday. Today is Sunday and he has missed 2 doses due to fever, so we'll have to cancel his Tuesday appt. until we can get him back on track again. We're hoping to half dose today and go back up to his regular 50 mg tomorrow, but we'll have to play it by ear and see. We've had a rough few months with everyone in the family being sick. Hope the winter doesn't continue to be this bad.
Soon Carter will be able to eat May contains items, but I think he is still too scared to do that, so we will probably hold off on that for a while.
Sunday, December 7, 2014
Tuesday, September 30, 2014
Updose to 12mg, Again
So Thursday the 25th me and Carter drove up to Va. We stayed at the Residence Inn on the beach this time, and so it took about 4 hours. We had fun hanging out in the hot tub, pool, and then the ocean which was freezing! Carter loved it. I would not recommend this hotel, as it wasn't that great, and the military planes that fly overhead are just so so loud.
Friday: Went to Dr. Moss to updose. Carter was very nervous. Someone I managed to get a popsicle and italian ice up to Va. in a cooler, still mostly frozen. He really likes something cold after his dose. Updose went fine, no issues.
Drive back took about 3.5 hours, b/c Carter slept through the rest stop so we drove straight through!
Sept 27 - said he had a mild itchy throat with dose but went away quickly
Sept 28 - mild itchy throat, went away quickly again
Sept 29th - he never mentioned anything so I'm hoping we are now good to go with dose 12mg.
Friday: Went to Dr. Moss to updose. Carter was very nervous. Someone I managed to get a popsicle and italian ice up to Va. in a cooler, still mostly frozen. He really likes something cold after his dose. Updose went fine, no issues.
Drive back took about 3.5 hours, b/c Carter slept through the rest stop so we drove straight through!
Sept 27 - said he had a mild itchy throat with dose but went away quickly
Sept 28 - mild itchy throat, went away quickly again
Sept 29th - he never mentioned anything so I'm hoping we are now good to go with dose 12mg.
Friday, August 29, 2014
August 26th 2014
Carter ate about 3/4 of his dose and had an itchy throat again. Drank tons of water and ate toast and it eventually resolved.
August 28, 2014
Today was Kenny's birthday, and we were all excited and rushed to eat dinner, dose, open presents and have cake. So Carter ate half his dose and we moved onto presents and his throat started itching/hurting. Then he was saying it was hard for him to swallow. He was banging on his chest, so I immediately gave benadryl. Then fed ice and popsicle which helped. Started to resolve fairly quickly with the meds. Called Dr. Moss today and we are going to move him back down to 6mg for a few weeks. They are going to mail me more 6 mg doses. Carter is very relieved as all these itchy throats were scaring him. The goal is to progress without ever having any reactions, and we've had 3 with the 12 mg. I'm actually pretty surprised he is having such a hard time with such a low dose, but the only thing we can do is go slow and steady while his body gets used to the peanut. I guess it is going to take longer than we thought.
Carter ate about 3/4 of his dose and had an itchy throat again. Drank tons of water and ate toast and it eventually resolved.
August 28, 2014
Today was Kenny's birthday, and we were all excited and rushed to eat dinner, dose, open presents and have cake. So Carter ate half his dose and we moved onto presents and his throat started itching/hurting. Then he was saying it was hard for him to swallow. He was banging on his chest, so I immediately gave benadryl. Then fed ice and popsicle which helped. Started to resolve fairly quickly with the meds. Called Dr. Moss today and we are going to move him back down to 6mg for a few weeks. They are going to mail me more 6 mg doses. Carter is very relieved as all these itchy throats were scaring him. The goal is to progress without ever having any reactions, and we've had 3 with the 12 mg. I'm actually pretty surprised he is having such a hard time with such a low dose, but the only thing we can do is go slow and steady while his body gets used to the peanut. I guess it is going to take longer than we thought.
Sunday, August 24, 2014
August 20 12mg Day 2
Carter took his 2nd 12 mg dose tonight. We were a little late, 8:20. About 10 minutes later he said his neck was sore and itchy. Fed him tons of goldfish and graham crackers, drank water and lemonade. At 9:05 I paged the Dr b/c it was still hurting. 9:20 Carter said it was getting a little better. 9:40 said it was feeling better. Had to page the Dr 3 times before I heard back - almost an hour later! Dr. Moss said he wasn't dialing a 1 to get long distance!! I was very angry and Carter was very scared! Dr. Moss said to split his dose up for a week 1/2, then 30 minutes later the other half. As far as the reaction Carter said it felt just like what happened at Duke with the 25mg dose but not as strong. Took an hour to clear up, which is the same timing as Duke. At least he knows his body now, and he recognizes the tight feeling in his throat.
Carter was scared to go to bed, so we stayed up waiting until about 10:30. He said it started to hurt again, so I gave him benadryl. He said that helped.
8/21/2014 - follow up call from Dr. Moss' office to see how he was doing.
8/24/2014
Splitting the dose has been working fine, no other problems. In a day or 2 we'll retry the 12mg at one time again. I think as long as he drinks a lot after taking it he'll be ok. At least praying. If not we'll drop back down a dose. Slow and steady is fine.
Carter was scared to go to bed, so we stayed up waiting until about 10:30. He said it started to hurt again, so I gave him benadryl. He said that helped.
8/21/2014 - follow up call from Dr. Moss' office to see how he was doing.
8/24/2014
Splitting the dose has been working fine, no other problems. In a day or 2 we'll retry the 12mg at one time again. I think as long as he drinks a lot after taking it he'll be ok. At least praying. If not we'll drop back down a dose. Slow and steady is fine.
Wednesday, August 20, 2014
Week 3 12mg
August 18, 2014
Carter and I drove up Monday, got there about 2:30. We stayed at the Residence Inn this time which we liked much better. We went downstairs and enjoyed the pool and the hot tub, and then headed to the beach. Carter got a safe Hawaiian shaved ice at the corner of 11th street, and then rode the waves for a bit. Major thunderstorms developed, and took us a good 40 minutes to get back to our hotel in Chesapeake. His mood seems to be much more relaxed this time around. Got back, showered, dinner, and dose with pudding.
August 19, 2014
Updose to 12 mg, with chocolate pudding. Said he couldn't taste it, no problems at all. Waited an hour, spoke to Dr. Moss and bit, then headed home with our new 12 mg doses. oh and his new pack of Pokeman cards for being such a brave trooper :)
Carter and I drove up Monday, got there about 2:30. We stayed at the Residence Inn this time which we liked much better. We went downstairs and enjoyed the pool and the hot tub, and then headed to the beach. Carter got a safe Hawaiian shaved ice at the corner of 11th street, and then rode the waves for a bit. Major thunderstorms developed, and took us a good 40 minutes to get back to our hotel in Chesapeake. His mood seems to be much more relaxed this time around. Got back, showered, dinner, and dose with pudding.
August 19, 2014
Updose to 12 mg, with chocolate pudding. Said he couldn't taste it, no problems at all. Waited an hour, spoke to Dr. Moss and bit, then headed home with our new 12 mg doses. oh and his new pack of Pokeman cards for being such a brave trooper :)
A few things I learned on this trip: Always travel with tampons, tums, and Aleve. Buy some super duper strength deodorant, like the kind men use when they go into battle. Unfortunately I also learned I can no longer take Xanex on our updoses because I have to be alert to drive home!
Friday, August 15, 2014
Week 1 6mg
8/15/2014
So far we've taken 10 doses of 6mg peanut flour every night. We dose between 7-8 at night, and Carter always chooses to dose with chocolate ice cream. He says he can't taste the peanut in it. (At the Dr's office he said he could definitely taste it in the pudding) We usually eat Blue Bunny, but the lactose sometimes gives him a tummy ache so last night I switched to Breyers lactose Free chocolate. So far so good. He is feeling more and more confident about the whole process.
Carter and I pray to Archangel Raphael, who is the Angel of Healing and safe travels. We believe he is going to take care of us along this journey. We bought a wonderful book about all the amazing things he does to help people. I'm grateful to have him and his buddies by our side.
So far we've taken 10 doses of 6mg peanut flour every night. We dose between 7-8 at night, and Carter always chooses to dose with chocolate ice cream. He says he can't taste the peanut in it. (At the Dr's office he said he could definitely taste it in the pudding) We usually eat Blue Bunny, but the lactose sometimes gives him a tummy ache so last night I switched to Breyers lactose Free chocolate. So far so good. He is feeling more and more confident about the whole process.
Carter and I pray to Archangel Raphael, who is the Angel of Healing and safe travels. We believe he is going to take care of us along this journey. We bought a wonderful book about all the amazing things he does to help people. I'm grateful to have him and his buddies by our side.
Starting Peanut OIT (Oral Immunotherapy)
8/4/2014
After a bad experience last year with the Duke Trials (pushing him too far in the Food challenge on the first day, resulting in a scary ANA reaction) Carter decided he was ready to look into OIT in a private practice. After a lot of research by Mom, we decided on Dr. Moss in Va. His office does take insurance, they dose once per day starting with peanut flour, then switching to Reeses Pieces, then Peanut M&M's. This takes about 6 months, then maintenance for 6 months, then a peanut challenge. Maintenance dose is 5 Reese's pieces or 3 Peanut M&M's.
On Sunday we headed to Chesapeake Va. We were able to hang out, go to the beach, and have some fun before starting the OIT escalation day Monday. Monday we went to Dr. Moss's office in Va. Beach. The staff was great and made us feel very comfortable. Dr. Moss came in and asked us questions and chatted with us. We loved him right away. He is very relaxed and calm, and feels that Carter will do great with the program. Started the first dose 0.1mg, and every 30 minutes increased doses to 0.2, 0.4, 0.8, 3 mg. That totalled 6 mg. Waited 1 hour to make sure he was reaction free. He did great. Carter chose to mix with pudding. The next day we went back, he took his 6 mg dose, they waited an hour and then we were on our way! We got our little bag of peanut flour capsules to dose at home.
Carter was VERY nervous the morning of the escalation, but felt so much better and more confident when we were done. I gotta admit, mommy was sweating up a storm in the Dr's office even though it was freezing in the office! We will bring warmer clothes next time! It's about 3.5 hours to Chesapeake, where our hotel was and about 30 minutes to his office in Va. Beach. Daddy came this time, but next time it will just be me and Carter.
After a bad experience last year with the Duke Trials (pushing him too far in the Food challenge on the first day, resulting in a scary ANA reaction) Carter decided he was ready to look into OIT in a private practice. After a lot of research by Mom, we decided on Dr. Moss in Va. His office does take insurance, they dose once per day starting with peanut flour, then switching to Reeses Pieces, then Peanut M&M's. This takes about 6 months, then maintenance for 6 months, then a peanut challenge. Maintenance dose is 5 Reese's pieces or 3 Peanut M&M's.
On Sunday we headed to Chesapeake Va. We were able to hang out, go to the beach, and have some fun before starting the OIT escalation day Monday. Monday we went to Dr. Moss's office in Va. Beach. The staff was great and made us feel very comfortable. Dr. Moss came in and asked us questions and chatted with us. We loved him right away. He is very relaxed and calm, and feels that Carter will do great with the program. Started the first dose 0.1mg, and every 30 minutes increased doses to 0.2, 0.4, 0.8, 3 mg. That totalled 6 mg. Waited 1 hour to make sure he was reaction free. He did great. Carter chose to mix with pudding. The next day we went back, he took his 6 mg dose, they waited an hour and then we were on our way! We got our little bag of peanut flour capsules to dose at home.
Carter was VERY nervous the morning of the escalation, but felt so much better and more confident when we were done. I gotta admit, mommy was sweating up a storm in the Dr's office even though it was freezing in the office! We will bring warmer clothes next time! It's about 3.5 hours to Chesapeake, where our hotel was and about 30 minutes to his office in Va. Beach. Daddy came this time, but next time it will just be me and Carter.
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