Getting nowhere fast

So the doctor agreed that we need to down-dose to half of what we are currently on. If Coby does amazing on it we can call the office one week from now and they MAY allow us to 'updose' at home (since he's been on it at home before) back to what he has been on until now (minus the three days of downdosing with the fever). If he still has side effects OR the office decides 'no'- then we are to remain on this half dose all the way til Dec. 1st. So our new dose is 25 micrograms of a peanut- the equivalent to 1/12,000.

I am sooooo frustrated. While others are able to updose every single week- we will be 'lucky' if we are on the same starting dose an entire month into this journey. All those hours of observation and watching and 'no exercise' and worries and fears---- for nothing???? And it is very possible that we are going to be on HALF THE DOSE than what we started with, an entire month into this process? And then we'd have to shlepp out to the doctor in order to 'updose' back up to what he has been on until now and then remain on that dose for a few weeks?! We are getting nowhere fast!

ARGH. I'm wondering what would have happened if he didn't get strep three days into the process. What would have happened if our starting dose on day one would have been this half dose we are down dosing to since Coby was scratching a bit at earlier doses. Would we be past where we are now? Would he have been able to updose last Thursday like originally planned?

We are literally moving backwards! Coby was so upset when we couldn't go to the doctor for an up-dose LAST week! Now I am going to have to tell him, not only are we not going back to the doctor now for another 2.5 weeks--- but we are going backwards in dosing at home as well.

I know, I know at times during this one has to down-dose--- but we already did that three days in when he had fever of 104. Why couldn't we at least get some momentum going? Why couldn't we have been able to have a couple of updoses, so we can feel the progression and feel good about thi,s before having to drop down a bit?! Why do we now have to be going backwards as if this entire month was for nothing?!

There are all these inspirational quotes about moving slowly- that it doesn't matter if you're moving slowly as long as you're not staying still.  Well we're not staying still---- we are MOVING BACKWARDS!!!!! Where's the inspirational quote for that?!

I know, I know, IYH it will be short lived. I know it's best for his little body. I know that the harder the climb, the more gorgeous the view. I know the best things in life are worth waiting for....

Have this for myself- reminds me of how long we waited for our Coby-bear. How many years it took to have him. How everybody- even doctors told us to give up- that it's not going to happen, but we didn't. And we have the BEST THING because of it. I do not give up! And he definitely was very worth waiting for!

But I want some FORWARD momentum. I want to see progress. I want my child protected. I want him to know he is going through these hard times for the best times. 

I'm just venting my frustration here so I can plant on that 'happy mommy face' when he gets home and be all 'excited' and happy that 'yay we get to down dose' so his body can get used to it faster instead of struggling against this dose. And how yay- we are going to be sneaky and trick his body into accepting this and how cool is that- how brave is he to be doing all this, and it doesn't matter how many times we fall it matters how many times we get back up. And together we can and will keep getting back up. And this will be a life lesson for him and he will realize all that he can accomplish if he doesn't give up and yada yada yada.

Not to worry- I know how to put on that cheerleader role and happy mommy mask and act all positive about this but right now before he is home I just want to scream. Just a little bit.

...and so I did and I'm a bit better now. And I will continue to remind myself that as long as we are on the road- even if it's before the 'starting line' now- then we have a chance. And as long as he is safe and we have a chance- an 85% one at that- then all is good. And IYH in a year or two we can look back at all this and give ourselves a huge pat on the back. We got this. We can do this. 

Hopefully he'll acclimate to that lower dose quickly and we can get back to where we were. In the meantime he'll be so excited to see the news clip of his own doctor that aired last night.

(if anyone wants to check it out: http://www.fox5ny.com/news/217519978-story )

He had been so hopeful on getting a store bought ice cream cake for his 9th birthday at the end of July. I don't know that we will make that deadline. I already promised him if we didn't make it to that point by his birthday I would buy him an ice cream cake whenever he is cleared to eat a 'made in a facility with' item. It doesn't need to be for his birthday. It would be celebrating so much more than a birthday. I will buy him an entire tower of those ice cream cakes- when the time comes. Just please, let that time come....

Wind-burned

So here we are two weeks in and I feel like we are getting nowhere fast. Every. Single. Day. Coby is still having 'reactions', 'side effects' whatever you want to call them to his dose. And we are two weeks in already with most people being able to updose every single week.

We are supposed to updose this Thursday- is that really not going to happen? Again? And if we skip this Thursday then we are stuck for another two weeks (since the office isn't open on Thanksgiving Thursday.)

According to people in my OIT group he should be having ZERO reactions before updosing and we should be requesting a down-dose. Seriously?

Every single day after dosing he begins scratching- at his legs, his arms, his chest, his back. He rubs his nose because "it feels stuffed", he rubs his eyes. He rubs his lips because, "they feel wet." (This only happens for the 2 hours following dosing). He STILL has dots all over his body. Not to the degree of last Monday (when he also had strep) but they will not go away.

What the heck are all these (itchy) dots and why won't they go away????

I was so hoping that once Coby finished his ten day of antibiotics (which was yesterday morning) then his body would calm down. I had hoped that his little body taking antibiotics and fighting strep and fighting peanuts and getting used to zyrtec and flozane as well was too much- but that once the strep and antibiotics was done his body would calm down. SO WHY HASN'T IT CALMED DOWN YET?

Should we seriously be downdosing? Is it really possible that we started on too high a dose? That as soon as that very first 'speck' appeared on Coby's chin on day one we should have stopped at that point? 

Do we really need to go down a dose or several doses in order for his body to not react at all before continuing on?

I'm worried that Coby is going to feel so frustrated if we don't go in to updose this Thursday. He was so mad we didn't go in last Thursday.... and if we actually have to down-dose???? How could 1/6,000 of a peanut still be affecting him like this?

But obviously I can't share these thoughts with Coby because he still so hopes that this is going to work. And it can! But I feel like we are walking up a down escalator. How are some people able to updose every single week when we may be at UNDER our starting dose an entire month in? I know part of this is just speculation because we haven't even spoken to the doctor yet, but from what my group is telling me it does seem like skipping and down dosing is the way to go. 

Coby came home from school today and upon finding out that one of his spelling words this week is 'peanut' his face said it all.... but he was not UPSET about the word, he was DETERMINED and actually exclaimed, "I WILL DEFEAT YOU PEANUT!" 

When he was done with his homework he proudly showed me the spelling sentence he chose to write for the word- "Peanut".

"I am trying to destroy peanut with OIT."

People in the group are encouraging me that even if he has to down dose and stay steady for an entire month at that dose he can and will still get there. They are telling me that the beginning is the hardest as these 'toxins' invade his body and his body has to try hard to recognize that they are not dangerous- and once we are further into it it should go faster, but right now it's not even like we are staying still- it seems like we are only going backwards. It feels like we are holding our breath as the winds of this storm blow against us yet we continue to walk against it determined not to give up though at times we are feeling quite wind-burned.

Sigh. I guess we will call the doctor (again) tomorrow and try to keep our chin up. I need to keep reminding myself that it doesn't matter how slow we are going as long as we are going. What matters is that we won't end up in the 15% that OIT fails and that we can still be in the 85% that it works for. And if we have to go slowly and at times backwards it doesn't mean that we won't eventually get there. Success and safety is what matters not speed.

Hope is stronger than fear

I know I'm probably breaking all sorts of rules by NOT blogging about the recent debacle, uh, I mean election; but this blog is about Coby's crusade- not America's. Though we did do our civic duty and voted last night

and there is nothing further I can do so I will just bury my head in the sand and pretend everything is going on as usual. I cannot afford to expend more nervous energy on all the what nows and what ifs. Too much worry about things can make you CRAZY and since I have enough with our own 'stuff' I exercise my right to ostrich myself and pray that all will be okay.

All we all really want is a safe world to raise our families. A peaceful and safe world for our children. Because our children are our everything. And with our journey through OIT that is what we are hoping to do- trying to create as safe a world as possible for our Coby-bear. As far as America is concerned we continue to pray that despite the fear that today's news brings that Hashem will protect us and keep us safe. G-d bless America!

And so I will not continue to write about the election and to be honest I know a hell of a lot more about the ARA H1, H2 and H3 and peanut proteins and IgE antibodies and component testing and classes of severity and allergy testing and allergy training than I do about politics because let's face it 

We all woke up today worried and scared and afraid in what this means for the USA. (okay fine one more sentence about America) All the unknowns and uncertainties and what ifs. I, however, have been scared every. single. day for the last TWO THOUSAND AND FIFTY NINE DAYS (and anyone who knows me well would know that yes, I did the actual math). It barely registered in my mind of who was running the country because I didn't feel like my Coby was safe. And all moms know it is OUR children that matter most to us.  Hidden peanuts in things such as OJ or canned corn or lollipops. Well meaning family and friends making occasional goof ups. People not understanding that something so tiny and so innocent was more potent than a loaded gun to my child. Playing in a playground where someone else could have had a pb&j sandwich for lunch leaving remnants on the equipment could cause a reaction. Children eating snacks from companies that don't label for cross contamination, yet upon us calling them we found out would not be safe for Coby- and hearing about the reactions that children have had from this 'seemingly safe' snack and hoping each day that Coby sees his friends eating these snacks that he is not tempted enough to try one despite his friends offering to share.  (how's that for a run on sentence!) 

Making another batch of homemade 'mini bites hoping Coby would look forward to having the 'yummier' version at home and not be tempted by what his friends have. Hoping that if there's a sub she is trained in what to do etc etc etc. Once you witness your innocent child nearly die you are never the same. You see the danger everywhere. You have to let your child out into that world and hope that those who care for him can keep him safe and are trained in allergy awareness...

...BUT apparently even training is not safe enough!!!!! I attended a CPR class yesterday and the instructor went ahead to 'teach allergy treatment'. He went ahead to say two things THAT AREN'T EVEN TRUE. When I tried to correct him I was dismissed. I will go ahead and write what he said here and what the RIGHT thing is to do in case any of you guys come across this situation.

The first thing he said that was wrong (which isn't AS big a deal as the second) is that when you administer the epipen you hold it for ten seconds in the thigh. NOW IT IS ONLY THREE SECONDS, NOT TEN. Studies were done that showed that all the epinephrine is actually administered in under one second and by holding it for 10 seconds in a thigh of a struggling child could and would result in bent and broken needles and lacerations in the child's leg. The most important thing is to hold the child's leg STILL and keep it in for just three seconds.

The second thing he taught that was SOOOOOO wrong and could literally be the difference between life and death was, "if the epipen is expired- do NOT use it- just call 911 and wait." WTF???? I am sorry but that is so wrong on so many levels. There is a 'window' on the epipen and as long as the window is still 'clear' and did not turn funky colors you go ahead and use it. Let me say it again: IF YOU HAVE NO OTHER EPIPEN OTHER THAN AN EXPIRED ONE YOU SURE AS HELL USE IT!!!!! Studies have shown that despite the 'expiration' date on epipens many remain 100% effective past that shelf life. Even three years past the expiration date- most epipens have up to a 90% effectiveness. And beyond the 3 year mark it can even be a 70% effectiveness. Did he just tell everyone to NOT administer any epipen into the child and just sit back and wait?!

Once a child has an anaphylactic reaction their next one can have their throat closing within seconds! A child (or adult) WOULD NOT MAKE IT TO THE HOSPITAL IN TIME WITHOUT HAVING HAD AN EPIPEN ADMINISTERED! Not all ambulances come equipped with epipens either! (Coby's didn't.) So  a room full of people were just instructed that if they were to witness somebody going into anaphylaxis with that person's throat closing up and blood pressure plummeting, they should just sit back and wait because the expiration date might have been a month earlier? Or a few months earlier? ARE YOU FRIGGIN' KIDDING ME???! Obviously and hopefully the parent and school keep track of expiration dates, but if you have nothing else. YOU USE IT!!!! I repeat: WTF????

I mean with the price gouging on the epipens- with sets costing upwards of 600.00 there are people who literally cannot afford their child's life saving medication. So if all they have is the one from last year should they really NOT use something that has a 70-90% chance of working over sitting back and waiting which is a 100% chance of failure??????

So if THIS is the type of training my child's protectors are receiving then how safe is he really? This really makes my blood boil. 

And that brings us to where we are today- our journey to try to keep Coby safe in this unsafe world he lives in. It has not been an easy decision. It is very scary at times. In fact for two weeks leading up to his first day of OIT I had a rash all over my stomach and back just from the stress of it all. 

We are now nine days past that first appointment and.... oysh. Last entry, I wrote we ended up using benadryl because of those itchy weird spots that appeared all over his back and belly. The following day he still had some dots and even today now more than 2 days later not all of them have faded.

Is it from the OIT? Is he reacting to the microscopic 1/6000 of a peanut? Could it be a side effect of the strep? Could it be a side effect to his anti-biotics? Who knows? The doctors said they can't know for sure.

Every afternoon I dose Coby and I watch him. And still today he was scratching at his knees and chest and rubbing his eyes. 

He was supposed to have his very first updose tomorrow at the doctor but the doctor cancelled the appointment. Coby's little body is still reacting to something and it is not a smart idea to updose now. We need his system to calm down.

I know in my gut that this (NOT updosing this week) is the right decision. And I know that slow and steady wins the race but I still find it so disappointing. I truly hope his itchiness is due to the physical stress on his body of having to fight both the strep together with his dosing and that once the 10 days of antibiotics is up and the strep is completly out of him that his body will acclimate faster to his future doses. Because if the current glitches are not due to those extenuating circumstances- are we ever going to be done with this?

I read stories of people boasting how they 'sailed through OIT'- how many of them coasted through day one with no problems all the way up to the end dose of 5mg (1/50th of a peanut) and were able to updose every single week with no issues at all.

...yet here we are. STUCK.  Already. That in spite of most people being able to updose once a week--- Coby will have been on this 1/6000 dose for two and a half weeks. (And if he is able to updose next Thursday- he'll be on that dose for the next two weeks since the office is closed on the following Thursday of Thanksgiving).

Will he be able to do this? While OIT on a whole is 75-80% effective, Coby's doctor has an almost 100% graduation rate. Will he get there?

I also read the flip side of others trying OIT- those stories of HORRIFIC side effects and even several incidents of anaphylaxis. Others develop a disease of the esophagus. Others have horrible stomach cramps followed by hours of diarrhea and vomiting and so much physical pain that they have to just stop OIT. And I am grateful that that has not (bli ayin hara) happened to Coby. Granted he is only on 1/6,000 of a peanut but if by going slowly can help keep his side effects more 'reasonable' so Coby can continue on this path to safety and freedom then that is what we have to do. As long as we are on the road we still have a chance. It is NOT a race. 

And so my fellow Americans giving up is not an option. No matter how bleak things may seem remember that hope is always stronger than fear.

Some more excitement

So I was so proud of myself for not blogging in several days and here I am doing it twice in a single day. I guess this is kinda the 'two steps forward one step back' I
discussed in my last post!

Today was day two of being back up at his regular dose. He watched TV and I watched him.

 And he began scratching. I asked myself 'is he scratching because he's really itchy? Is it because he thinks it's 'expected' of him?' I'm not sure how to find the right balance between him telling me what is real and between him subconsciously thinking I'm expecting a 'performance'. But he began scratching his arm, then his other arm, then his chest, then his leg, then his other leg. Then rubbing one eye, then the other eye. Never once complained, just did it nonchalantly. If I asked him if he's itchy, he would say yes. It wasn't non-stop scratching. Just every few minutes he'd go at it.

After the hour of 'intense observation' was up, it was time to get to TABC for carpool. I checked his skin where he was scratching and noticed small dots all over his body. It didn't look like hives but it looked like a 'something'.

Raised bumps on the side of his torso (there also were on his back)

Um, okay. It kinda sorta looks like eczema that he has all the time on his upper arms- but not as much- and he had just been scratching. Yitz happened to call me as I was about to run out so I tell him what is happening and I text him a picture as we jump into the car.

(I had checked with the doctor in advance if it's okay to go into the car after dosing, especially if the first hour of intense observation is finished and the doctor had said yes. I purposely time Coby's dosing to have had an hour at home before having to run out for carpool.)

While I am driving Yitz calls me and told me that he had e mailed the picture to the doctor and the doctor said to give him benadryl. "I'm Driving!" Coby seemed okay- still not complaining and itching has died down a bit. "Doctor said if he's itchy he needs benadryl to keep it from getting worse." I really did not want to pull over on the highway to go into his epipen stash to grab THAT benadryl to dose him. And honestly I'm kind of afraid of benadryl. I'm so nervous it would mask the symptoms of anaphylaxis as was the case with the 13 year old who died. She had bitten into a rice krispie treat and when realizing it was peanut she spit it out. She never had a bad reaction before. She seemed fine, so her dad (who's a doctor) gave her benadryl. Twenty minutes later she took a turn for the worse and the dad ended up giving her THREE epipens (he even broke through glass to get to the 3rd one and tore up his hand real good and ended up needing surgery to fix it) but it was too late. Benadryl masked the outside symptoms while meanwhile her insides were beginning to fall apart. Many doctors now don't even have benadryl at all in the child's emergency anaphylaxis plan.

Yitz told me that the doctor was going to get to his e mail to look at the picture and I should call him in about a half hour.

"A half hour? I'm not even AT Tabc and then I will be in rush hour traffic- I'm not going to be home for another 45 minutes!"

Every few minutes during the ride I asked Coby, 'are you okay? are you itching?' He said he was just a little itchy.

(When Coby had his food challenge- our doctor said to NOT even ask Coby if he's okay because it will just stress him out and instead we just watch (and the doctors and nurses keep checking vitals)- but for that they thought it was a high possibility he was NOT allergic to those things- but this time we know he IS. And Coby does NOT complain ever. If I don't watch him like a hawk he wouldn't say a word about what's going on so I have to ask him at times and keep reminding him that it's 'fine' if he feels weird, but he NEEDS to tell me.)

Of course on the way home not only was it rush hour traffic, but a lane got closed off due to an accident. But hey, we were better off than the people in the accident! Hope all is okay there.

As soon as I got home my cell started ringing and it was a nurse from the doctor's office asking me what happened after I gave Coby the medicine. "Uh, I didn't give it to him- I was stuck in the car- I didn't get into that car until after first hour of observation was done- and now spots are still there but didn't spread and he's still itchy but not AS itchy."

"Okay then you probably don't have to give him the benadryl but let me check with the doctor and call you back."

"Wait- did you see the picture my husband e mailed you?"

"Yes."

"It didn't LOOK like hives."

"It's not hives, but there is something there- it almost looks like a heat rash." (which we know it's not because it chilly in the den and cold outside!)

She called me back a few minutes later saying as long as Coby's doing a bit better I don't need to give him the benadryl but then she goes on to add, "And the doctor said to continue on this dose tomorrow and NOT to down dose,." down-dose???? I didn't even realize that was a possibility. I told her I'd make sure from now on to check his skin BEFORE dosing as well in case those bumps were already there. (who knows- he's on so many different things- maybe it is something else- I never did check his skin beforehand)

She told me to call on Wednesday to talk about updosing on Thursday. Though I'm getting a bad feeling in my gut that they may tell me to wait another week to updose. I know, I know slow and steady wins the race- but it. is. so. damn. slow. and. frustrating. I am keeping that thought to myself and actually encouraged Coby that going slow is great and told him the story of the tortoise and the hare to illustrate my point.

The nurse then hung up but not before she reminded me, "feel free to call back at any time with any concerns." It's gotta be hard on them dealing with all this OIT stuff and all the extra 'hand holding' it entails. This is one reason there are only 70sh doctors cross country that does it. (Just a few years ago it was as little as ten!)

Anyway, blech. Two steps forward one step back. I know, I know.

****Editing to add- nearly 4 hours after dosing it's all over his back too and he's still scratching so we decided to go ahead and give him the benadryl after all.

ONE WEEK DONE!!!!

Well I was told this journey at times can be two steps forward and one step back and when we started I got worried about what would happen months down the road if/when Coby were to develop a fever. Never in a million years did I expect that fever to come just a couple of days into OIT. "Two steps forward one step back indeed!"

I had to keep telling myself we are still on the road- we didn't fall off it. Slow and steady wins the race & it's okay.

The doctor had Coby go on a half dose of his normal dose (bringing it from 1/6000 a peanut to 1/12000) for three days. Each time I did it was followed by even more intense 'watching'. Some doctors wouldn't even have the child dose at all with any fever, let alone a fever as high as 104! Our doctor wanted to try dosing Coby so he wouldn't fall back to negative square one.

Square one did not mean, 'oh so he'll lose three days- so what,' it would mean he would have to repeat the entire day one and whose to say his little body wouldn't have started having a more negative reaction earlier in the day- we may have lost weeks!

So we would antibiotic Coby- wait an hour and a half before allowing him to have his loved yogurt (3 times a day is what he likes)- and making sure to use the probiotic at least an hour and a half away from antibiotics and yogurt. Coby did seem to react a bit more to the lower dose (I assume because of the fever)- being more itchy, rubbing at his eye and saying 'my nose is all boogery now,' but it could have been much worse. I was soooo nervous of a big reaction that I even hid his epipen in the very same room we were to be in because I was afraid I'd need to use it and didn't want to waste the 10 seconds running upstairs. Thank goodness it didn't come to that.

 After 3 days and his fever being gone the doctor said it's okay to put him back on his 'regular dose'- and of course again I was a nervous wreck thinking, 'what if he reacts to this dose since we just DOUBLED it back to his original.' Coby did seem again to be a bit more itchy but handled it okay. I would try to find the balance of watching him out of the corner of my eye but tried to be a bit discrete so he wouldn't develop a complex. Of course I also reminded him about one of his favorite songs on his allergy CD: "Never keep a reaction a secret!"

We called back into the allergist today and he said as long as Coby is dealing with his regular dose okay we can still come in this Thursday for his updose (which would be the 1/3000 that he was reacting quite a bit more to at the office last Monday). I have a couple of days to see if he is okay and ready for it. I am not sure if 'some itching' means he's ready or if the doctor wants zero side effects before continuing. Yep, another call to the doctor is needed. He's gonna be our new bestie!

Coby was excited to go back to school today and as soon as he got in we gave him his zyrtec followed by the probiotic, followed by a banana (a banana or bread before dosing helps the stomach- with applesauce following the dosing). I then gave him five minutes to "EXERCISE"- GO CUCKOO! GET OUT ALL THAT ENERGY!

Coby going cuckoo with 'exercising'!

And with just 10 minutes left to today's dose and I cannot believe we finished our very first week of OIT! I am so proud of us! We don't know what the future holds or how bumpy this road may get at times, but it got pretty bumpy in the first week, and we did okay! (mostly lol). 

In the meantime- WEEK ONE DONE! YAY US!!!!  

Breaking the bank

Once again I REALLY thought I wouldn't blog. Today was going to be the easy day. No carpooling duties, no shopping necessary. I'll get some housework done and when Coby got home from school I'd start our ritual. But

All that came to a grinding halt when I got a call from the nurse. My heart was pounding when I realized his school was calling. "Could he be having a delayed reaction to dosing? Is he having a regular reaction to exposure?" As a food allergy parent whenever you get a call from your child's camp or school- your immediate thought is that he's having an anaphylactic reaction.

Thank G-d Coby was 'okay' (ish)- a fever of 103.9. But still---- CRAP!!!! I mean, I don't think one can get fever from dosing.... BUT I also learned that dosing with fever can bring upon an anaphylactic reaction. This is the reason why your child cannot bathe within one hour of dosing or two hours after dosing- because the body temp needs to stay at 98.6. BUT skipping a dose can mean you are falling backwards back to square one and undoing any progress that is being made. WHY is this happening already?????

The moment I got off the phone with his school I ran out of the house to get Coby. I didn't grab a credit card, I didn't grab a purse. I didn't even bother turning off the tv.

While I was driving to school I was on the phone with Yitz telling him, 'call the allergist NOW- we are supposed to be dosing at 4:30! What do we do?????'

Yitz got through to them right away and called me back saying, 'get him to the doctor- and as soon as you are done there, call the doctor back so they can figure out what to do.'

BUT I didn't have my insurance card. I didn't have a credit card to pay what we just received a bill for. Our doctor usually asks for the insurance card each and every time before seeing your child and makes sure all bills are paid too.

Oh and to add to the fun- Yitz wasn't even at his office today- he was out at some big thing where reception is soooo bad. He managed to call the dr and get me an appointment straight out of Coby's school, explained the insurance card situation & paid our bill over the phone. He then texted me, 'the allergist may be calling you soon- he has to call you because I barely have reception'- the thing is..... I don't know how to put my ringer on!!! It vibrates but I haven't figured out how to turn my ringer on and have missed calls because of that. I know- I'm a moron. But going on...

We get to the doctor. Coby is in good spirits saying his only symptom is being very tired. Diagnosis- strep. I'm so relieved the test came back positive- because I was worried that I brought Coby to the dr at the first possible second, that if it was strep- it may be too early for a positive. Thank goodness it showed so fast!

the silly patient

BUT I had no credit card on me so I couldn't even pick up the medicine right away. The drop off line took forever as I'm trying to call the allergist. I had to drive back home to grab money to pick up the medicine.... BUT I CANT FIND ANY FREAKING MONEY IN THE HOUSE! I had my credit card, but knew that since we hit our deductible (again thanks to lyme disease's 31 appointments within one month) that the prescription may be pennies and too little to charge.

I actually had to go somewhere I never went before & asked Coby if I can borrow some money. He was happy to lend it to me (reminding me we still owe him allowance ;), and he cracked open his safe (really!!!) to get the money out and give me 10 bucks.

dramatic re-enaction of scene

While home I gave Coby his zyrtec dosage. "Why are you giving it to me? This is supposed to be an hour before my dosing"
"Because I don't know what the doctor will say about dosing and it needs to be in you."
(Zyrtec stays in the system for 24 hours but we need to keep giving it to him about the same time to keep it in his system.)

We drove back to CVS and there was no one on line!!!! But nah, can never be that easy. They couldn't find the right bottle to put his medicine in and we ended up waiting about a half hour while my heart is doing somersaults because I just wanted to get the medicine into my kid because this is so much more beyond a regular illness with all that is going on.

The allergist meanwhile told me that he is very reluctant to not dose Coby at all because he will fall backwards- BUT dosing with fever is even more risky. He tried to find a more even balance and told me to get his antibiotics into him, dose him a HALF DOSE a couple of hours later than we usually do to give the antibiotics a chance to start working- and then watch very carefully.... He said there's a small chance we can be back to full dose by tom. evening- BUT strep sometimes takes 2 days now instead of 1 for the fever to be gone so we may have to stay on half a dose tomorrow too and be back to full dose come shabbos.

The thing is.... while we are 'halving' his dose- the likelihood of a worse reaction is much higher now. And I'm soooo scared. This road is so difficult. I know, I know- a year or so of high anxiety and stress but G-d willing then the next 100 of freedom and safety.

Speaking about anxiety- Coby had wet his bed last night too. That's not like him. Is he feeling the stress even though he's not verbalizing it? His insistence on walking slow motion, his cold hair and this is making me think my poor baby is quite nervous (though very excited too.)

Got home gave him his antibiotics. This is so complicated! Normally he comes home from school 3:45- gets zyrtec. 4PM start carbo loading. 4:30 dose. Then water & applesauce followed by an hour of intense observation, 2 hours of no exercise or bath and a few hours of lighter observation. Nose drops before bed.

(And I have to do his pistachio dose too because it's Thursday. (Once he passed pistachios and hazelnut food challenges- those foods need to incorporated into his diet so he doesn't develop a true allergy- Tuesday is Nutella day, Thursday is Pistachio day.)

Now??? Zyrtec. Antibiotics. His carb loading will be supper time. I think I'm going to give him tylenol (he had ibuprofen 2.5 hours ago) to help keep fever down as low as possible. (The ibupofren brought it down to 102.5sh), dose him. Watch and pray. I asked Yitz to try to get home as close to 6:30 as possible because I am so scared of a 'real reaction' tonight.

G-d willing this is just a small glitch and I find the comedy in the story above. G-d willing he has half a dose a couple of days- and does not react despite his fever and come shabbos we are able to get him back to his full dose and he IYH won't react despite it being double the dose he had the prior two days.

...and now I need to get some money into the house so I can pay back my 8 year old who proudly announced to the pharmacist, "THAT'S MY MONEY!" as I paid for his meds. Okay I was 'slightly' embarrassed. And how appropriate is it that when I googled 'blushing clipart' the second picture that popped up was Charlie Brown- one of the original PEANUTS!

Maybe I do need some more inspiration from Good Ol' Charlie Brown:

Awww, thanks Chuck!

****HOLY CRAP I DONT HAVE ANY TYLENOL AT HOME... I MADE SURE I HAD IBUPROFEN BEFORE GOING BACK TO CVS BUT NOW I REALIZE I DONT HAVE TYLENOL. SO BACK OUT WE GO! CRAP CRAP CRAP. And ironically when i parked the car Coby said, 'now we can stay in the rest of the day?' And I said, "that's the plan- but who the heck knows anymore,' and we both giggled. SIGH.

*****and another holy crap moment came when someone on my OIT board said one is not supposed to use ibuprofen when doing OIT. WTH? He had ibuprofen at 3 & I planned on giving it to him later to keep his fever from spiking. We paged the doctor and the doctor said ibuprofen is known to cause hives in a select amount of people, but given how high Coby's fever got and the added danger of dosing with fever we should continue with the ibuprofen.

3 times at CVS in less than 2 hours- no biggie. Though when I told Coby when we get home he can put his pajamas back on he said, "No- if I do that then we'd just end up having to go back out today!" Guess he gets Murphy's law.

COLD HAIR

So we made it through the night in our own bedrooms! Before bed Coby complained "my hair is cold!". When we inquired about it, we were told that probably isn't anything to worry about physically- but often that is how kids can describe 'tingling' in a section of their scalp that is related to anxiety.

Coby is acting so brave and excited and I'm trying to hide anxiety from him but he knows why we are doing what we are and what could happen. After dosing today he started walking in slow motion to get something & I told him, "you can walk regular the 10 steps, just don't run," He said, "Nah- don't want to risk going to the hospital."

I was a bit nervous last night when I found out that I was actually supposed to shake the dose up before giving it to Coby and I didn't do that! Did it end up okay? Did I end up giving him too much? Too little? I knew to shake it up today but was worried it wouldn't be exactly the same as yesterday without the shaking.

Coby took his dose and said, "yummmm! Can I drink that whole thing?!" He loves that grape koolaid, but drinking that whole thing would be a definite trip to the hospital.

After dosing today I saw him scratching a bit, and he had to go to the bathroom 20 minutes after dosing (same as yesterday)- which is not like him, so I'm wondering if that's his little tummy trying to get used to the dose.
He didn't complain after taking the dose, but I was watching out of the corner of my eye and seeing him scratch a bit and trying to decipher any movement that kid makes. My gosh of course it can be just a scratch, but what if....

There are so many stories of kids doing fine for several days and then WHAM out of the blue big reaction. So there we are him playing on the couch on the phone or watching tv, a 'relaxing hour' but your brain is on overdrive. Watching. Waiting. Hoping.

After the first hour we had to go pick up Mikey from TABC. Sitting in the car is not exercise- perfect, kid barely moving in there! (but of course what if a reaction comes and I'm stuck in traffic.... but you gotta live life to a certain extent) And wouldn't you know it- there was a big accident up ahead and route 4 was a parking lot. Normally I am an early person and being late always stresses me out. I asked Coby to text the boys to let them know we were going to be late. Coby is pretty adept with the phone but the texting was exasperating him. I told him to forget it, it's fine- but in the back of my mind I was thinking, "crap- he's stressing- we were told to avoid stress. Any stressor on the body can cause a reaction, please be okay!" Thankfully all was okay.

BUT (of course there's another but)- when Coby went to put on his socks to get in the car he got very frustrated with them (which is not like him) and was lying on the floor grumbling and upset and it is soooooooooooooo out of character for him.... He had his second dose of zyrtec today and we were told a side reaction can be a mood change/grumpiness/behavior change. But how would I know if he's just stressed from all this and it will come out in different ways, or if it is indeed a reaction to the zyrtec and we should switch medications?

There is soooo much that is unknown. It is not an exact science. Smooth sailing for a day or two or even a month or two doesn't mean the next month or two will be okay. Someone in my OIT group said after smooth sailing for the first month her daughter's body rebelled and the child began throwing up non stop for several hours- and the doctor made them quit OIT for ta few months for her body to chill out a bit. She is gearing to start up again.

Meanwhile I was feeling a bit frustrated that we only got to 1/6000 a peanut on day one but they reassured me only 1/3 of kids get through all the doses on day one, and slow and steady wins the race. Someone else said their child reacted on dose one on day one- and now that child is up to 5 peanuts a day.

....but still so many questions. This '2 hour rest period'---- is it forever? If Coby graduates he'd be on a daily dose of anywhere from 8-24 peanuts a day- after dosing I believe that 2 hour rest period is still in effect. Will a teenager who is running out with his friends going to listen to that? The doctor actually will conduct blood tests through the months and through the years to see if his IgE numbers are falling. They are soooo high right now (he is class 5 in severity) but often after OIT the numbers fall and if they fall low enough the child/teen/adult may not need a 2 hour rest period- maybe 1 hour, maybe none... I so hope so. Because at that point it won't just be the once or twice a day dosing (meaning 2-4 hours of rest each day)- the child would be able to eat cross contaminated things--- is there a 'rest period' whenever he eats a 'may contain' item? What about if he eats actual peanuts besides the maintenance dose- like a snickers bar- does a candy bar then mean 2 hour rest period? Does that mean he still has to be careful at birthday parties/bar mitzvahs- b/c if he eats actual peanut he won't be able to dance and run around?

Inhale. Exhale. One day at a time is all we can do. You keep putting one foot in front of the other and do it despite the fear. Because the most important thing is PROTECTION. Even with all the unknowns, how wonderful would it be knowing one wrong bite will no longer have the power to end his life? How wonderful would it be knowing we no longer have to worry about cross contamination. How wonderful would it be knowing he will not have another touch or airborne reaction. That already opens up the world to him. Anything beyond that is really icing on the cake. (and however far we get would mean that many more layers of protection around him) And our doctor is pretty confident that IYH Coby will get beyond that (and in 2 weeks his doctor is actually going to be on TV discussing OIT!)

2 and a half hours since dosing and doing okay... and so I have to be happy with that for today. My child is still safe. My child is still okay. And for now everything else is just extraneous. And hopefully in time all the pieces will fall into place.