Updose #23

Bummer of a week. Wednesday morning after his dose, B got full body hives.  He was very nervous that he needed Epi it was stressful for us both.  We gave the medicines as directed when we called and watched the hives slowly leave.  He felt a little warm so we weren't sure if he was getting sick or if it was his too warm pajamas. They told us to back track and do 90ml the rest of the week :( We're SUPER bummed!

Sunday morning, same story.  After dose he broke out in hives.  We were really worried that we would not be able to updose today but the doctor thinks B just isn't eating enough.  Now that he's got a bunch of milk in his system he needs to eat more.  B has been slacking on eating and I've been getting after him, but he always claims he's full.  Here's hoping it works this week because they let us go back up to 120ml, only one week behind! Phew! This week will be a big mental challenge since we had problems doing it last week.

Updose #22

Woohoo!  Still boring ;) We're getting so close!!  Updosed to 120ml!  That's like 1/2 a cup!!

Updose #21

Our trip to Yellowstone went GREAT!  Not a single problem! 

Updose went well today, no problems!

Updose #20

Updosed to 75 ml with no problems.  We're heading out of town, so Dr. Jones told us to take Zyrtec every day as a precaution. Crossing our fingers!

Updose #19

Updose went great this week, even with festivities for Independence Day!  He updosed to 60 ml!

Updose #18

B had a rough week last week.  He threw up Wednesday night 3 1/2 hours after dose.  He hadn't eaten much at dinner (and took forever) so I don't think he was feeling well.  He was devastated that he was sick and going to miss cubscout camp the next day, but he woke up feeling fine. He dosed as normal and felt fine (though still little appetite) at scout camp.  Was very tired and went to bed early with an early dose.  Couldn't sleep because his stomach hurt and threw up again at midnight. He felt fine after throwing up. Friday morning he felt fine (still little appetite) and dosed as normal.  No problems the rest of the weekend. 
It's common in OIT for parents to pray their child "Only has the Flu"  We sure were praying that was the case and not the beginning of tummy troubles that often come when you start drinking this much milk
Dr Jones said he was okay updosing B today, because he went the rest of the time without throwing up.  It could have been heat exhaustion or just a little bug.  Praying that we continue to have a smooth and easy experience and don't get the common upset stomach!!!
45ml!!!  He makes it look so easy :)  He thankfully still thinks it tastes ok!!

Updose #17

Wheezing again Tuesday evening and used rescue inhaler (why Tuesday evening every time!?) and Saturday evening (this was more environmental, I think.  He did breathing exercises after we left the place he was having problems and didn't need his rescue inhaler.
Upping his daily inhaler so he doesn't need rescue.  Allergies have been bad.
Updosed to 30ml!

Updose #16

20ml with no problems!

Updose #15

Big jump to 15ml with NO problems!

Updose #14

10ml!! And from a cup!! :)

Updose #13

He was wheezing again last Tuesday evening and had to use his rescue inhaler.  No other symptoms last week.
Updosed to 8ml!!

Updose #12

B had to use his rescue inhaler one time last week (Tuesday evening), no other symptoms
Updosed to 6ml of whole milk.  No problems!

Updose #11

Updosed to 4ml today.  No rosy cheeks...nothing.  He still says the taste is "ok" and I hope it stays that way.  I don't want the typical struggle for dosing because they don't like the taste....

Updose #10

I can't believe he's done 10 updoses!  I was out of town for this one, so his grandpa took him.  He jumped a WHOLE Milliliter!  I feel bad not being there for such a huge jump, but he loved taking Grandpa.  He did great with no reactions! They weren't concerned about his swollen lip last week and just reminded him to put the syringe far enough in his mouth that it doesn't get on his lips. 

Updose #9

His dad was here for the doctor's visit today, YAY!  We had all the girls, too, so I took them to the store while Dad sat for the hour.  He moved up to 2ml without any problems!  He's not even getting red cheeks anymore!


In the evening dose he got some milk on his lip, I guess.  Within a half hour he got a swollen lip.  We washed it and watched it.  Held of on calling and on medicine and kept him up longer to observe.  It slowly reduced without any other reactions so we sent him to bed.

Updose #8

Updosed to 1.5ml of whole milk today.  His jumps will be getting bigger and bigger as we go on.  He still did well!

Updose #7

He moved up to a whole milliliter of whole milk!  Incredible!  No reactions! This is incredible!

Updose #6!

We discussed this week's reaction with the Doctor and all felt he was fine and as can happen when allergies and asthma are not under controlled, it was just too much for his body.  With those under control, he had no other reactions.   He updosed to 0.7ml of whole milk!  A little rosy cheeks (which is becoming normal when updosing to new levels) but nothing else!

Updose #5!

No problems this last week so he moves up to 0.5ml of whole milk. He even dosed himself and doesn't have to worry so much about touching it! (skin is the last organ to remember how to deal with it, so he can still get hives if he comes into contact with it, but it's less likely)

Updose #4!

This week they called us to let us know they forgot to tell us to bring milk because he's moving on to STRAIGHT UP WHOLE MILK

He's never had whole milk in his WHOLE life.  

He was a little nervous but really excited

He had 0.3ml of whole milk

His cheeks got a little red, but went away after a while (and got red again for evening dose, but by the next day his body was already adapting and used to it.  Proof that this is working!)

Updose #3!

After a very boring week (dosing wise, we had lots of fun with the rest of life) we were ready for updose #3 today.  It went great!  He forgot to eat a snack on the way so he ate a little in the car before heading in.  I don't think it was enough, he turned a little red but I made him drink a ton of water, and it went away.  He ate more once his observation time was done and so far he's feeling fine!
He's now taking 8ml of watered-down milk :)  I'm not sure how many micrograms in each ml, but it's enough that it looks cloudy and milk colored

 Waiting for updose

 Ready to go home!  Look at that big bottle!

Updose #2 -6ml

Buddy is now at 6ml (still of Solution B)
We decided to try just wiping his lip with a wet paper towel instead of a wet wipe or washing with soap.  No swollen lip (but he also didn't get any on his lip). They say the skin is the last organ to 'remember' the allergen and not react, so we still have to be cautious about it getting on him. 
He did great today and had no problems!  He wasn't nervous at all going into it.

 

 

Feb 29th - March 6th

After Buddy's fever we dosed as normal the next day and have had no reactions since! This boy is so brave, he even wanted to administer the dose himself!  He did that a couple times until once he spilled some when squirting it in his mouth.  We're back to me doing it for a while, just so we don't risk not getting it all and getting some on him.

Reactions :(

We went on a little vacation to a condo. It was super old dusty (carpet and furniture wise, they are actually pretty clean) and his asthma wasn't under control.  He had to use his rescue inhaler every day (and two times on the last day) and because of this he had a reaction on one day.  He got hives above his eyebrows.  We watched it and I used a couple essential oils to help his allergies and we watched it to see if we should call the doctor.  It went away and he did fine so we plugged along. As soon as we left the condos he had no other reactions this week, so we're hoping to updose as normal.

Updose #1 - 4ml

We're so excited to move to the next level.  Yes, this is the level he would have been at, and we're still 2 levels behind where most people start, but it's not a race. 
Updose went great.  No reactions.  Waited the hour of observation then ran some errands before coming home.
After afternoon rest time he got a headache.  Then he started not feeling good.  He washed his hands with cold water and couldn't get warm. He lost some color and was shivering.  He had a fever that we tried to get down (he can't dose with a fever over a 100 without talking to the office) and we almost got it under, but didn't so we called them.  The guy answering wasn't very kind or helpful, but we're supposed to skip the dose tonight and dose as normal in the morning.  His heart-rate was VERY high and that most of all concerned us. We delayed putting him down (despite that he'd be able to go to bed early since he didn't dose) and he seemed fine.  He woke up this morning with no fever and felt fine.  We dosed as normal with no reaction.
Hoping it was just the recent sickness (and my current sickness) that may have caused his body to fight it off again.  I'm just glad that if there's any problems they've been at the beginning and not in the middle of the doses for no reason.  His body is fighting the treatment and not liking it.  But it's slowly getting used to it, and that's the idea.
I'm SO grateful for all the prayers on our behalf.  I know without the prayers and fasting his body would be fighting it more than just these little hiccups at the beginning of each new level. Thank you for your cares and concern; we feel so loved!

Feb 26-28th

Finishing out this level with NO problems!!  Woohoo.  On to the next level tomorrow!

2/25

Buddy had a little upset stomach today.  It started several hours after morning dose and he felt better when laying down for quiet time.  I assume he's just getting sick, since we're all starting to get something, but they say to assume it's the dose until proven otherwise.  He didn't do a great job of listening this morning when I kept telling him to calm down and observe his rest period.  His upset tummy came back during dinner time but he had been sitting waiting for dinner for quite a while, so maybe it was that.  He's better tonight after his evening dose.  I don't remember ever hoping my child was just sick before :)  Praying that if he is sick, he'll get over it quickly and not get a fever (he can't dose with a fever).  If you're sick- stay away from us! :)

Feb 22 - 24th

Once again. Boring.  I'm loving this. We've even gone and been active and away from home after our 2 hours of rest (or sometimes even making driving there part of rest time!)
No problems.  Thank you for your prayers, they are OBVIOUSLY working!!

2/20 and 2/21

Another boring day!  Praying that most will be like this!

2/19

Morning dose of 2 ml with no reaction.  Here's hoping that it continues with the popular tag #OITisboring.  I hope this is as boring as possible!

2/18

Went in super early for his observation and morning dose. Dr Jones decided to just have him back up to 2 ml of Solution B.  He dosed in office and had no reactions!  He felt fine all day.
Evening dose of 2 ml also went fine with no reactions!

Day 2

Day 2 is the second half day.  You start a little lower than where you left off and begin again to get as high as you can, hopefully another 10-12 doses.
Dose 1: 4 ml- no reaction
Dose 2: 4 ml- no reaction
Dose 3: 6 ml- lip began to swell (Buddy felt it and I saw it, so we washed it with soap) and it didn't swell any more so Dr and Nurses could barely tell. Buddy wants to keep going
Dose 4: 6 ml- Nurses suggest wiping mouth after swish and swallow, we decide that's not enough and use a wipe or wash with soap
Dose 5: 4 ml of stronger dose.  Wash mouth
Dose 6: 4 ml. Wash mouth every time now
Dose 7: 6 ml
Dose 8: 6 ml
Dose 9: 10 ml
Dose 10: 10 ml- cheeks getting rosy
Dose 11: 2 ml of stronger dose (Solution B). Tummy aches (he says he's full and thinks pushing on stomach that he's full) Nurses ask if he wants to finish that level and he says yes
Dose 12: 2 ml- 12 minutes after dose complains of tingly ear (it's red, too) Nurses offer to do one more level (extra to help make up from yesterday) and Buddy chooses to
Dose 13: 4 ml
Dose 14: 4 ml- Still reddish cheeks and "full" tummy but no other reactions.  Complete Day 2 with only 1 level behind goal!
Home dose will be 2 ml of Solution B tonight (since he's had so much) and back to 4 ml tomorrow!

Drive home: tummy still hurts.  Feels better and snacks a little bit. Gets frog in throat and drinks some more.  At home has to use the bathroom a couple times and that helps a little bit.  At 5:30 tummy really hurts (almost in tears) and says he can't do it any more. Call office and they tell him to do Zantac and skip evening dose, they also want him to do his morning dose in office in the morning so he can be observed for an hour there.  By 6pm he was snacking on dinner and perked up.  His appetite slowly returned and he ate more.  Stomach pain leaves and doesn't return, sleeps well and no other reactions

Day 1

Day 1 is a half day.  You start with minute amounts of allergen in a solution and consume it.  15 minutes later you get another dose.  15 minutes later you try a higher dose.  Then you repeat that dose and then try higher, and so on.  The goal for us was 10-12 doses for the day.  We started with a 2 ml solution of water with 1 microgram of milk.

Dose 1: 2 ml solution- throat was tingling 3 minutes after dose so we swished and swallowed more and it resolved

Dose 2: 2 ml solution- no reaction
Dose 3: 4 ml solution- no reaction
Dose 4: 4 ml solution- no reaction
Dose 5: 6 ml solution- swollen lip at 5 minutes after dose; red cheeks 7 minutes after dose with more bumps then usual on his face; ears, nose and neck red.  Allegra at 12 minutes after dose.  Stuffy nose at 15 minutes after dose. He was observed by the nurses and doctors during this process and was continued to be observed for 1 hour as reactions subsided.  We were sad that he reacted at just 3 micrograms of milk and didn't make it half way through the goal for the day. But he was so proud of himself for getting that far and we kept his spirits up.

After observation they sent us home with the home dose for the evening.  They took us back to the last tolerated level and halved it (since he had had so much that day) so he went home with the introductory level.  Still, progress is progress and he's one step closer.
He did fine with his home dose of 2 ml and had no symptoms.


When I had my doses I thought I would have a reaction and on my 5th dose I had a swolen lip. But my swolen lip eventually went down. I felt nervous but the doctors took good care of me.

Pre Day!

After getting into Utah last week and spending time with family, we're finally ready to meet the doctor.  Our appointment was 2/15.  On the drive there Buddy told us he was nervous.  We told him that was normal and acknowledged his fears.  A few minutes later he asked for help distracting himself.  He asked his Dad to talk to him about something happy.  They discussed Skylanders the rest of the way there. We met the Dr. Jones and liked him right away.  Buddy felt very comfortable with him and his nervousness was gone.  Due to the severity of Buddy's allergy we anticipate it taking 6 months to complete OIT. Dr. Jones diagnosed him with lung inflammation and got some inhalers for him. Those and the prescriptions needed in case of reactions were requested at our pharmacy.  It was a smooth and easy process and we can't wait to begin this journey to freedom!

On my first day, I was nervous. But I knew that Dr. Jones was a good Doctor.