We are officially increased. Claire is now at 4ml with 2.5mg concentrate. In other words one step closer, but still very far from an actual peanut. According to their protocol we will increase to 6ml, 8ml, 10ml, then increase the concentrate and go through 3 increases there. So, a total of 6 more liquid increases. After that we will be given capsules, not to swallow but to empty. 5 weeks of that and then we are to an actual honest to goodness peanut. If all goes according to "plan" that could be in 11 weeks. BLOWS MY MIND!!!!!
While we were there monitoring her (no reaction at all today!), there was another family there. The boy was probably Cole's age (10ish), girl about Claire's age (6ish) and the mama. Of course in the food allergy world, we are all friends. There are zero off limit questions. Every child is different, we all need to know what the other may have discovered. That and I'm turning into my mother. Anyway.............. He was up to 2 peanuts now. She was able to tell us about their journey to that point. He developed EOE (a severe problem with your esophagus causing profuse vomiting) and that set him back. They lowered the dose, got a handle on the EOE and began increasing again. She was so sweet to spill her guts to us. We were just absorbing every word she said, it gave us hope. He doesn't have a peanut table at school, they have peanuts in the house, he can HOLD a peanut and NOT DIE!!! Jaw dropping revelation. Never thought about that part, she can hold them, even if she hates them, they will not have the power to kill her. We are atleast 11 weeks from that point, but we are miles from where we were this time last year.
Oh, the most interesting part about this encounter, they fly in from California every week. Every single week. They moved to Texas during the summer, but had to move back when school began. I'm complaining about having to work extra at my job during the week to drive 2 1/2 hours one way and back. She has to drive 2 hours to the airport for a 3 hour flight. I suck! God put that clearly in my face. I was feeling sorry for myself because I'm tired, my house isn't clean, laundry isn't done, you can forget about cooking. And all I have to do is drive 1 day. Dang. So very thankful God allowed us to live so close to help. What a nod to the clinic if they are flying that far every week. Another assurance we are in the right place.
The woman did assure me that she still freaks out every time he touches, holds, ingests a peanut. That was a relief, I thought I was just crazy and controlling. And maybe I am, but I think allergy moms have that in common. You are confronted with the fact that you could lose your child at any moment someone isn't paying attention. And the older they get, the harder it is. Thank God she is in His hands, and He trusts us to take care of her here.
Side note, none of this could be possible without my parents and Adam's parents. They go over and above to make sure everything with Cole and everything with Rimmer Electric are taken care of. We are able to focus on why we are there and what we are doing.
One more high five for Mrs. Milligan and Mrs. Allen, there are no words for how these two have bent over backwards to make sure my children are safe, just like they do for every other child at that school.
I just wanted to let everyone know what was going on, and say a couple thank you's. Hope everyone has a wonderful weekend!
Friday, January 30, 2015
Tuesday, January 20, 2015
Late Post - Sorry
So very sorry for the late post. It has just been a crazy weekend and now the kids are back in school and we are back in a routine from our (their) 4 day weekend.
Now for the followup OIT, she did great. Of course super nervous, but handled it so well. The doctor came in and examined her, she of course looked at him like he had a frog on his head. Still not a fan of men! Fine with me. He said everything seemed good. He said, "ok, you've been on 2ml for the week, it's time to bump it to 4ml." No, she reacted to the 2ml she was bumped DOWN to 1ml for the week. There's no way we are already moving to 4ml. Her chart noted it. He apologized a lot, several several times. And said over and over how he didn't know how it happened and would get to the bottom of it. Thankful me and Adam were both paying attention. Could have made for a much longer trip.
At the correct dose her ears started bothering her, throat itched, cheeks turned red......sweet. Doctor was not concerned, as long as she could tolerate the discomfort. That's what I LOVE, they do not freak out there. They take it all in stride and help me to breathe.
We are now on day 4 of the 2ml and seem to be doing great. I'm going to ask the doctor, but she seems to get really hyper about 10-15 min after taking it. Not sure if that is connected or not.
Asked about her new class 2 Hazelnut allergy. He said since she's been eating it, he didn't see a need to take her off of it. Well, me being the well educated physician that I am, I am taking her off of Nutella myself. The Chocolate Soy butter came in last night. I'm going to sneak that in for the week and see if that will clean up her eczema. If it does yay - if not, we haven't lost anything.
We are skipping this week and giving her a full 2 weeks on this dose before we go back. Probably we will go to the 4ml, I want her body to have plenty of time to adjust.
Side note, the allergist is on the same floor as the pediatrician. We get off the elevator and look at the ped office. Have to walk past the sick kids, breathing their sick air, to get to our room. I am looking forward to skipping that part for a week. And there's a giant whale downstairs that the kids discovered and think it's the most fun thing ever. Climbing all over, on the floor, etc. i was disgusted. How did i give birth to children who would roll on a hospital floor and play with hospital toys. i just just ready to scream!! GROSS!!!! Flu would be the best case scenario.
Anyway, thank you for reading, and praying.
Now for the followup OIT, she did great. Of course super nervous, but handled it so well. The doctor came in and examined her, she of course looked at him like he had a frog on his head. Still not a fan of men! Fine with me. He said everything seemed good. He said, "ok, you've been on 2ml for the week, it's time to bump it to 4ml." No, she reacted to the 2ml she was bumped DOWN to 1ml for the week. There's no way we are already moving to 4ml. Her chart noted it. He apologized a lot, several several times. And said over and over how he didn't know how it happened and would get to the bottom of it. Thankful me and Adam were both paying attention. Could have made for a much longer trip.
At the correct dose her ears started bothering her, throat itched, cheeks turned red......sweet. Doctor was not concerned, as long as she could tolerate the discomfort. That's what I LOVE, they do not freak out there. They take it all in stride and help me to breathe.
We are now on day 4 of the 2ml and seem to be doing great. I'm going to ask the doctor, but she seems to get really hyper about 10-15 min after taking it. Not sure if that is connected or not.
Asked about her new class 2 Hazelnut allergy. He said since she's been eating it, he didn't see a need to take her off of it. Well, me being the well educated physician that I am, I am taking her off of Nutella myself. The Chocolate Soy butter came in last night. I'm going to sneak that in for the week and see if that will clean up her eczema. If it does yay - if not, we haven't lost anything.
We are skipping this week and giving her a full 2 weeks on this dose before we go back. Probably we will go to the 4ml, I want her body to have plenty of time to adjust.
Side note, the allergist is on the same floor as the pediatrician. We get off the elevator and look at the ped office. Have to walk past the sick kids, breathing their sick air, to get to our room. I am looking forward to skipping that part for a week. And there's a giant whale downstairs that the kids discovered and think it's the most fun thing ever. Climbing all over, on the floor, etc. i was disgusted. How did i give birth to children who would roll on a hospital floor and play with hospital toys. i just just ready to scream!! GROSS!!!! Flu would be the best case scenario.
Anyway, thank you for reading, and praying.
Monday, January 12, 2015
5 days down....
Today marks the fifth full day Claire has been on her current dose. I haven't noticed any side effects, we are truly blessed. Our next appointment is Friday, taking advantage of a day off school. Back to Dallas we go.
I received her lab results today, the allergists office has a patient portal. EVERYTHING is uploaded, no waiting for results. I looked at them, of course she's allergic to peanut, from what I remember the numbers are about the same as they were 2 years ago. She has now developed a class 2 allergy to hazelnut. Of all things! Claire has food aversions (putting it lightly), this does not mean she's a picky eater, this means she gets sick at certain textures and smells. Nutella is a staple and she's developing an allergy to it. Awesome!!! Could have something to do with the eczema that has taken over her hands. We will discuss with the doctor Friday. Back to her results to peanut. From what I remembered this morning the numbers were about the same, until I got home and had them in front of me to compare. Her allergy has doubled in numbers. The numbers evaluate how her immune system will react. Let's say I had gotten these results on my own, away from starting the OIT program......I probably would be on the floor in a puddle like I was the first time I found out. However, with the results in my hand I feel like it is God confirming our steps. What others intended for evil (not really evil just selfishness) God is using for good. He knew her numbers were increasing meaning she was becoming more severe (if that's possible). He allowed hurtful things to be said and done to show us the direction we were to go. I am so thankful for His never ending love.
Please don't get me wrong, I know there are millions, billions of families out there dealing with things worse than food allergies. But this is our world, and I wanted to share our journey in it and through it. Know my heart, I would never write any of this to whine. This is not where I vent, this is where I explain. I think that's the best word. There are so many people who thankfully love my Claire and want to know every detail, this tells the story.
On another note, we spent all weekend finishing Cole's science fair project. I told mama Saturday that Satan is truly the father of lies and projects. It is just a fact! I was so happy for him to take the dang thing to school today. It was stressing me more than him......nothing phases that boy. He is coming with us to Dallas Friday. He wasn't thrilled but I talked to him in the car and told him about the Nutella thing, "oh mom! She only eats Nutella. I'll help you figure out what to do." These are the words from my sweet boy. He may only be 9 but he is going to grow to be a fine man.
I have had several families private message me on Facebook asking how this was going b/c they have an allergy baby. This is by far the best decision we have made as a family. I still cannot wrap my head around it, but I knew and refused to accept the fact that a peanut could take my child from me. This is letting us see there is light at the end of this tunnel, God provided a way. Looking back at all the things in our life He put in place is almost laughable. He really does have a plan and it is so much better than I could have dreamed. Again, thank you all for your prayers and support. Keep them coming, Friday they will increase her dose.......I'll let you know how it goes.
I received her lab results today, the allergists office has a patient portal. EVERYTHING is uploaded, no waiting for results. I looked at them, of course she's allergic to peanut, from what I remember the numbers are about the same as they were 2 years ago. She has now developed a class 2 allergy to hazelnut. Of all things! Claire has food aversions (putting it lightly), this does not mean she's a picky eater, this means she gets sick at certain textures and smells. Nutella is a staple and she's developing an allergy to it. Awesome!!! Could have something to do with the eczema that has taken over her hands. We will discuss with the doctor Friday. Back to her results to peanut. From what I remembered this morning the numbers were about the same, until I got home and had them in front of me to compare. Her allergy has doubled in numbers. The numbers evaluate how her immune system will react. Let's say I had gotten these results on my own, away from starting the OIT program......I probably would be on the floor in a puddle like I was the first time I found out. However, with the results in my hand I feel like it is God confirming our steps. What others intended for evil (not really evil just selfishness) God is using for good. He knew her numbers were increasing meaning she was becoming more severe (if that's possible). He allowed hurtful things to be said and done to show us the direction we were to go. I am so thankful for His never ending love.
Please don't get me wrong, I know there are millions, billions of families out there dealing with things worse than food allergies. But this is our world, and I wanted to share our journey in it and through it. Know my heart, I would never write any of this to whine. This is not where I vent, this is where I explain. I think that's the best word. There are so many people who thankfully love my Claire and want to know every detail, this tells the story.
On another note, we spent all weekend finishing Cole's science fair project. I told mama Saturday that Satan is truly the father of lies and projects. It is just a fact! I was so happy for him to take the dang thing to school today. It was stressing me more than him......nothing phases that boy. He is coming with us to Dallas Friday. He wasn't thrilled but I talked to him in the car and told him about the Nutella thing, "oh mom! She only eats Nutella. I'll help you figure out what to do." These are the words from my sweet boy. He may only be 9 but he is going to grow to be a fine man.
I have had several families private message me on Facebook asking how this was going b/c they have an allergy baby. This is by far the best decision we have made as a family. I still cannot wrap my head around it, but I knew and refused to accept the fact that a peanut could take my child from me. This is letting us see there is light at the end of this tunnel, God provided a way. Looking back at all the things in our life He put in place is almost laughable. He really does have a plan and it is so much better than I could have dreamed. Again, thank you all for your prayers and support. Keep them coming, Friday they will increase her dose.......I'll let you know how it goes.
Thursday, January 8, 2015
Day One Done!!!!
We woke up this morning in Dallas and headed out to Mid City Hospital for Claire's full day of OIT. This was the day to see what she's able to do. I honestly had complete peace. There was no nervousness, no anxiety, nothing. Claire on the other hand had a pretty nervous stomach at first. She was so scared they would insist on a skin test again. Thankfully they didn't.
Because of her anaphylactic reaction to the skin test this summer they started her at 1/2 the dose of what they would normally do. Every dose they do is repeated once. So, this dose was given to her twice 15 minutes apart. I held my breath for the first dose, and of course watched her like a hawk. NOTHING, nothing happened. I was immediately encouraged.
We were in a large room with very comfortable recliners with 3 other families doing the same thing. All boys! Once she was able to handle the first 2 "mini" doses they brought the other kids in so they could all be on the same schedule.
Every 15 minutes the nurse went around with one dose, then the same amount repeated, then increased. This went on for hours, no reaction. At the last 2 hours (4 more doses) Claire's stomach started to cramp, face flushed, just didn't feel well, throat itchy. So the nurse decided we should sit out a round. And that's what we did. Gave her body a break, watched a movie and snuggled. When the buzzer went off for the next time Claire was feeling better. She was feeling better so we went on. One the last dose of the day her stomach was really hurting a few hives starting on her face, and flushed. Now we had to go into the observation room. Claire was heavy and gagged a little, but the nurses didn't freak out (so thankful for them). They checked her vitals and let her just lay down. We did this for about 30 minutes. When it was time to go, she was feeling much better. Like her happy, talking self.
The nurse gave us our instructions, only took 8 hours to get to this part. Claire will now be given 1 ml twice a day. They were hoping to get her to 2 ml twice a day, but her body isn't ready. It truly amazes me how God designed our body to warn without panic. Just a subtle "that's all I can do". And that's exactly what her body did.
It was now time to go downstairs to the lab for her blood work (which we didn't know we had to do!!!). She was so brave, sat there with her head buried and let them take 3 vials. NOT ONE TEAR!
That's it. First day. In the books. Already gave her the dose for tonight and ready for bed. So thankful for your prayers. This will be ongoing for the next 6 months at least, so keep them coming.
Because of her anaphylactic reaction to the skin test this summer they started her at 1/2 the dose of what they would normally do. Every dose they do is repeated once. So, this dose was given to her twice 15 minutes apart. I held my breath for the first dose, and of course watched her like a hawk. NOTHING, nothing happened. I was immediately encouraged.
We were in a large room with very comfortable recliners with 3 other families doing the same thing. All boys! Once she was able to handle the first 2 "mini" doses they brought the other kids in so they could all be on the same schedule.
Every 15 minutes the nurse went around with one dose, then the same amount repeated, then increased. This went on for hours, no reaction. At the last 2 hours (4 more doses) Claire's stomach started to cramp, face flushed, just didn't feel well, throat itchy. So the nurse decided we should sit out a round. And that's what we did. Gave her body a break, watched a movie and snuggled. When the buzzer went off for the next time Claire was feeling better. She was feeling better so we went on. One the last dose of the day her stomach was really hurting a few hives starting on her face, and flushed. Now we had to go into the observation room. Claire was heavy and gagged a little, but the nurses didn't freak out (so thankful for them). They checked her vitals and let her just lay down. We did this for about 30 minutes. When it was time to go, she was feeling much better. Like her happy, talking self.
The nurse gave us our instructions, only took 8 hours to get to this part. Claire will now be given 1 ml twice a day. They were hoping to get her to 2 ml twice a day, but her body isn't ready. It truly amazes me how God designed our body to warn without panic. Just a subtle "that's all I can do". And that's exactly what her body did.
It was now time to go downstairs to the lab for her blood work (which we didn't know we had to do!!!). She was so brave, sat there with her head buried and let them take 3 vials. NOT ONE TEAR!
That's it. First day. In the books. Already gave her the dose for tonight and ready for bed. So thankful for your prayers. This will be ongoing for the next 6 months at least, so keep them coming.
Wednesday, January 7, 2015
We left tonight headed to Dallas to spend the night (thank you Tim and Britny) and wake up for our very first day! Nervous, excited, overwhelmed...... Lots of feelings really. Gratitude has to be the strongest. I posted this blog link on Facebook and was shocked at the response from comments and texts and calls. Our family is covered in prayer! We are so thankful.
Claire told her class today where she was going tomorrow and what she was going to do. Somehow it got a little twisted in the 1st grade minds. One text I received was, "Claire's not coming back til 5th grade!!" No, Claire will be back Monday morning, bright and shiny!! I was so impressed that Claire had the bravery to tell her friends. If you know her at all, this is very surprising. There are tons of people that love her and have NEVER heard her voice. For her to stand up gives me even more peace about this decision. God is honestly going before us. And that today is proof.
After re-reading my post last night I noticed that I only mentioned my son ONCE. Oh my! He is my heart, and he vital to Claire. God knew exactly what He was doing when He gave us Cole Knox first. Cole has grown up to be such a blessing and truly Claire's protector. They may fight like cats and dogs at times, but he won't let ANYONE else do it. He came with us to the initial meeting because this involves all of us, he needed to hear it just like we did. Cole will stay with Nana so he doesn't miss school and we need to only focus on Claire tomorrow. But, he will be with us for the majority of the other visits.
Cole is a typical 4th grade boy. Loves all sports, loves all games, loves reading, and of course movies. He is growing so fast, and always seems to be hungry! Cole bleeds purple and gold, has the fathead on his wall to prove it. And just below the fathead is his snake "Moo". Actually he's named King David, but I call him Moo because he's black and white like a milk cow! God blessed Cole with a brilliant mind and a very loving, tender heart. Once I figure our how to add more photos I'll post some of him too! He's so pretty.
I will update more tomorrow - when there is actually something to say. Please pray for us. I've said this 100 times but, God promises us to use everything for good to those who love Him. I promise you no one loves Jesus like Claire does. He is her best friend and we trust her to Him.
Thank you again for all the support.
Claire told her class today where she was going tomorrow and what she was going to do. Somehow it got a little twisted in the 1st grade minds. One text I received was, "Claire's not coming back til 5th grade!!" No, Claire will be back Monday morning, bright and shiny!! I was so impressed that Claire had the bravery to tell her friends. If you know her at all, this is very surprising. There are tons of people that love her and have NEVER heard her voice. For her to stand up gives me even more peace about this decision. God is honestly going before us. And that today is proof.
After re-reading my post last night I noticed that I only mentioned my son ONCE. Oh my! He is my heart, and he vital to Claire. God knew exactly what He was doing when He gave us Cole Knox first. Cole has grown up to be such a blessing and truly Claire's protector. They may fight like cats and dogs at times, but he won't let ANYONE else do it. He came with us to the initial meeting because this involves all of us, he needed to hear it just like we did. Cole will stay with Nana so he doesn't miss school and we need to only focus on Claire tomorrow. But, he will be with us for the majority of the other visits.
Cole is a typical 4th grade boy. Loves all sports, loves all games, loves reading, and of course movies. He is growing so fast, and always seems to be hungry! Cole bleeds purple and gold, has the fathead on his wall to prove it. And just below the fathead is his snake "Moo". Actually he's named King David, but I call him Moo because he's black and white like a milk cow! God blessed Cole with a brilliant mind and a very loving, tender heart. Once I figure our how to add more photos I'll post some of him too! He's so pretty.
I will update more tomorrow - when there is actually something to say. Please pray for us. I've said this 100 times but, God promises us to use everything for good to those who love Him. I promise you no one loves Jesus like Claire does. He is her best friend and we trust her to Him.
Thank you again for all the support.
Tuesday, January 6, 2015
Back Story
If you are new to the Peanut adventure we have been on for the last 5 years, here's a quick recap. Claire was diagnosed at 18 months with a life threatening peanut & shellfish allergy. She doesn't remember a life without epi-pens and benedryl. And honestly, neither do I.
Every year we go to the "peanut walk" - it's a food allergy awareness walk sponsored by F.A.R.E http://www.foodallergy.org/. in Dallas, Texas. They have vendors there with allergy friendly foods, epi-pen reps, auvi-q reps, and local allergist. The last 3 years I have stopped and spoken to Dallas Allergy & Immunology about Oral Immunotherapy (a process used to desensitize people to their specific food allergy). After speaking to them several times I made an appointment, then cancelled it because I was scared. This happened a couple more times. I just couldn't think about giving my daughter the substance that could potentially kill her. Even if it is at a safe place that has done this hundreds of times before.
We are beyond fortunate to attend an elementary school that adores our children. They are very allergy friendly and even attempted to be peanut free. Because of some discussion among only a couple of mamas, the school board let us know we could not continue on as a "peanut free" school. Claire now sits at a peanut free table in the cafeteria. I am so thankful for administration who wants so badly to protect our children. This has worked out better than we thought possible. Claire feels more safe there, and is really enjoying it. However, with the change in the "peanut free" policy, this led Adam and I further pursue the OIT (oral immunotherapy) in Dallas.
In December we took Claire and Cole (our beautiful 9 year old) to Dallas to meet Dr. Silvers. He is a very sweet, knowledgeable, patient doctor. He took his time with us and answered EVERY question. On our way home from the visit Adam and I decided this was the place God would have us go to help Claire.
I called January 2 and Dallas Allergy had an opening for t
he FIRST REAL day on January 8th. So happy it was close and we could get it over with soon! The first day is the day we show up at 8:15 am and stay until 3 or 4 pm. The plan is to give her a fraction of a microgram of peanut flour in koolaid, then gradually increase it until they reach Claire's threshold.
Now - Claire had an anaphylactic reaction to her peanut skin test over the summer which is very rare. So, of course we are a little apprehensive about the initial dose and reaching her threshold. Once the threshold is met we will take that dose home and administer it 2 times a day for the next 2 week until our next visit. This will continue until she reaches 24 whole peanuts as her dose. That can take up to a year to get to.
So, as an outlet for me and Claire, we will keep you updated on her progress! We leave tomorrow afternoon for Dallas and will be at Dallas Allergy Thursday morning to begin the exciting and very scary journey! Please keep us all in your prayers.
For more information on OIT go to http://www.dallasallergy.net/
Every year we go to the "peanut walk" - it's a food allergy awareness walk sponsored by F.A.R.E http://www.foodallergy.org/. in Dallas, Texas. They have vendors there with allergy friendly foods, epi-pen reps, auvi-q reps, and local allergist. The last 3 years I have stopped and spoken to Dallas Allergy & Immunology about Oral Immunotherapy (a process used to desensitize people to their specific food allergy). After speaking to them several times I made an appointment, then cancelled it because I was scared. This happened a couple more times. I just couldn't think about giving my daughter the substance that could potentially kill her. Even if it is at a safe place that has done this hundreds of times before.
We are beyond fortunate to attend an elementary school that adores our children. They are very allergy friendly and even attempted to be peanut free. Because of some discussion among only a couple of mamas, the school board let us know we could not continue on as a "peanut free" school. Claire now sits at a peanut free table in the cafeteria. I am so thankful for administration who wants so badly to protect our children. This has worked out better than we thought possible. Claire feels more safe there, and is really enjoying it. However, with the change in the "peanut free" policy, this led Adam and I further pursue the OIT (oral immunotherapy) in Dallas.
In December we took Claire and Cole (our beautiful 9 year old) to Dallas to meet Dr. Silvers. He is a very sweet, knowledgeable, patient doctor. He took his time with us and answered EVERY question. On our way home from the visit Adam and I decided this was the place God would have us go to help Claire.
I called January 2 and Dallas Allergy had an opening for t
Now - Claire had an anaphylactic reaction to her peanut skin test over the summer which is very rare. So, of course we are a little apprehensive about the initial dose and reaching her threshold. Once the threshold is met we will take that dose home and administer it 2 times a day for the next 2 week until our next visit. This will continue until she reaches 24 whole peanuts as her dose. That can take up to a year to get to.
So, as an outlet for me and Claire, we will keep you updated on her progress! We leave tomorrow afternoon for Dallas and will be at Dallas Allergy Thursday morning to begin the exciting and very scary journey! Please keep us all in your prayers.
For more information on OIT go to http://www.dallasallergy.net/
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