Friday, November 6, 2009

Another Appointment . . .

. . . more information. =0) Our appointment was canceled a few times (twice to be exact), but we finally got in, thanks to someone else for canceling their appointment! =0)

Over all, the appointment went well. The new doctor, Dr. S., was wonderful! Not that we have had problems with doctors at All Children's - we haven't, they have all been wonderful and supportive . . . and would even call the local hospital to lecture ER docs. =0) Nice to know someone else is out there to give those docs an earful, right? =0) Anyway, Dr. S. was very thorough and has even began more testing for diseases that might just be making things worse for Isaiah (considering the anaphylaxis episodes are becoming more frequent as are some of the symptoms like flushing and swelling . . . which I will talk more about in a little bit). One thing Isaiah will be tested for is a form of hereditary angioedema (basically random swelling that can also mimic anaphylaxis in that his airway and digestive tract can be affected). Of course, edema (or angioedema) can also be part of anaphylaxis and other allergic reactions . . . so, it's really nothing new, but it would be interesting to know about. The appointment, which was only scheduled for an hour, lasted 3 1/2 hours! Talk about thorough! =0) It was really nice to know that someone is still interested in figuring out everything that is going on with Isaiah . . . at least so much so that they aren't willing to say, "I don't know." No one was giving up on Isaiah, but they were running out of ideas . . . then came fresh meat! =0)

Yes, Isaiah still has systemic masto . . . and severe allergies . . . but they are just a little more aggressive than the two of them should really be. If you take into consideration that Isaiah's IgE counts are still not falling (they should be by now), there's just something else going on. So, what kinds of things are we seeing? Swelling of his face, lips, tongue, eyes, hands, etc (at least 4 times a week, sometimes lasting a few minutes to a day or so - it comes and goes). Isaiah also has problems with flushing (almost daily) that is generally accompanied by a rash . . . after which Isaiah usually ends up in pain from headaches and from what we think is bone pain (and abdominal cramping), but we have found that as long as we treat him with Hydroxyzine (Atarax) soon after flushing begins, Isaiah doesn't go through the rest of the process. Before we knew what to do, we would wait until the rash, which would more than likely result in the pain episodes. Now, the pain episodes come and go, but aren't necessarily associated with flushing . . . not always.

Now, all of this sounds just horrible, and it is. It's just that we deal with this so often that it's becoming "normal" . . . that's the really scary part. It shouldn't be this normal. The swelling was the one thing that the doctor just thought was a little too obnoxious to blame masto for it all. Keep in mind, masto is still there as well as the allergies . . . there's just something more.

Another good outcome is that there will be no more steroid treatments for Isaiah unless they are used to treat anaphylaxis episodes (which usually means short-term prednisone doses that are quickly tapered). YAY! =0) It was nice to see Isaiah eating well and gaining weight, but I didn't like all of the negative side effects of the steroids. Since Isaiah doesn't have asthma, the doctor wants us to try stopping the Advair!!!! YAY, another med gone! =0) It is very possible that the masto is affecting his lungs, but it might not be . . . his "asthma" attacks were likely the precursor to/part of anaphylaxis. Of course, the other meds stand as are, but I'll take the minus two! =0) Yeah, that still leaves us at a nice 13 meds a day, but that's still better than 15, right?

Another thing that was discussed was school - should Isaiah attend school even for a partial day? The doctor just about lost it when the question was raised. Her response, "absolutely not!" =0) Okay, so that takes care of the gut-twisting feeling I felt at the thought of Isaiah in a school with a lot of other little kiddos . . . with food, kiddos with pet hair on their clothing, remnants of food on their clothing . . . lots and lots of exposures to all sorts of things (chemicals, molds, etc.) that could send Isaiah to the ER, again. Then there's the issue of part-time nurses, teachers not being allowed to carry or administer student's epi pens (in our district, at least) . . . I didn't even have to say a word about my gut feeling on the subject. The look on her face at our inquiry was a look of complete horror, an almost "why in the world would you do such a thing"-type look. =0) That look said it all. Homebound it is with a few social extras on the side. =0)

Okay, let's see . . . new doctor, masto/allergy/something else combination, symptoms, meds, school . . . am I forgetting something??? Yup, Xolair. In asking about Xolair, the Dr. S. said that Isaiah's IgE is way too high for the insurance company to approve its use . . . apart from his age, his IgE count, alone, was way too high - his body wouldn't handle the shot very well. Apart from that, Isaiah is so sensitive that it might just cause a reaction (as I have mentioned before - yes, it really is a major concern), and he does not have asthma. Apparently, Xolair is only approved right now for use in patients with uncontrolled asthma issues and is not approved for prevention of anaphylaxis because it hasn't proven to be useful in preventing it . . . wow, that might have been good to know when we were considering this treatment. So, our last resort drug really isn't even a last resort any more . . . it's not an option. Good thing, but stinks to know that there isn't anything out there right now that will help us too much apart from what we're already doing.

Which brings me to the downside of the appointment: there is no cure nor preventative treatment for everything that Isaiah is currently diagnosed with (and with the possible extras being thrown into the mix). Of course, there is the common sense stuff - stay away from the known allergens and triggers. Apart from that, the histamine treatments (H1 and H2 antihistamines that Isaiah takes daily - part of the now 13 meds regimen) are our only hope for managing symptoms. Oh yeah, and we have to make sure Isaiah doesn't consume corn too often - his IgE is saying that corn may be a bad thing for him if he eats it too much . . . and his IgE to wheat and soy have actually gone up . . . as did his IgE to cat and dog . . . and mold.

There is One who can heal Isaiah completely . . . when He chooses to heal Isaiah. While I may not understand why God hasn't chosen to go ahead and heal Isaiah, I'm still at the point where I'm not sure I want to know the answer to that question. There are so many kiddos that are suffering from various illnesses, but I know God has a plan and knows the right time for their healing - in His time, not mine. His timing is perfect, so that means when He chooses to heal them, they will be. The situation, the circumstances, those surrounding them - everything will be in perfect timing, with a perfect reason. Of course, I'd still like to know when that is. ;0) However, God understands that more than I do.

Please, don't get me wrong - I don't take all of this without crying (no, I don't laugh through it all). =0) I don't always feel at peace about all of this. I just don't ask God why. I feel if He wants me to know, then He'll tell me. Until then, I'll just keep following Him - He knows where He's headed, after all. =0) My point is, though, I do cry about all of this. In fact, I spent a little time in my car (going to work) crying just thinking through everything.

There isn't a cure for masto. There isn't a cure for anaphylaxis. There's no cure for allergies, including severe allergies. There is no cure for angioedema nor the other things Dr. S. is testing for. There isn't a fail-proof medication to treat these conditions, and the majority of the medications also include side effects with long-term usage (sometimes based on the dosage Isaiah is on). The things Isaiah goes through - anaphylaxis - can be fatal if not treated . . . sometimes they're still fatal even when they are treated properly. These can be serious things if taken too lightly, yet you still have to live as normal as possible - not always an easy task when you know you have limitations . . . living with modifications. We still have to avoid the bakery section at the grocery store, picnics with bags of chips or popcorn that have a powdered substance - they usually contain powdered whey or milk. Isaiah still can't play outside when it's too hot . . . or too cold.

No school means no school parties, no school smells (I have this thing with the smell of the first and last day of school - it just smells good), no "school" experiences for a while . . . at least until things are figured out and until they calm down for Isaiah. Isaiah's school will consist of our house and computer. No school field trips, no bus rides (he really wants to ride a "yellow school bus"), no surprise art projects. It's not all that bad, though. Isaiah won't have to worry about missing school because he's not feeling well or because he didn't sleep the night before, nor will he have to worry about going to a school that's about an hour away (one school for medically fragile children was sort-of an option), no calls from frantic teachers/nurses . . . no worries about Isaiah missing out on a field trip to the zoo or a farm because he cannot tolerate being around the animals anymore. Besides, I like the idea of being able to avoid some of the things they teach our children these days so that I can teach him about what God says . . . not the US Government. I'm not opposed to public schooling, but I do have issues with the system. =0)

Like I said, it still bothers me. I'm not always feeling all that positive, though I try to be anyway. It's almost like the game Pollyanna used to play - for every bad thing, think of a good thing to make the bad seem better. I am thankful that things aren't as bad as they could be. I am thankful that I can have a more active part in my child's education, at least in the early stages. =0) I am thankful that Isaiah can still eat what we've been feeding him. I am extremely thankful that I can still see his sparkling eyes, gorgeous smile (complete with dimples), hear his contagious and melodious giggle, hear his sweet voice, get the biggest and best hugs I have ever gotten, his quirky sense of humor, his vivid and wild imagination . . . and yes, I even love those sloppy kisses and one-of-a-kind hairdos he gives me! =0) Oh, and how could I forget those facial expressions and mannerisms? =0) I'm thankful that Isaiah is my son and teacher (you learn so much from these little guys!). I could go on and on . . .

Anyway, I know this was a long post, but I just wanted to share a bit about what has been going on with him and his appointment. Did I mention we were almost hit by a police officer who pulled out in front of me??? I guess you could say he almost hit us . . . and, yes, this was on our way back from St. Pete . . . Isaiah slept through the whole experience. I slammed on my breaks so hard, that my car was knocked out of drive into neutral - good thing I was paying attention, huh? =0) I wasn't the only one, either - two other lanes of traffic almost had a run in with him . . . he went across 3 lanes of traffic! Anyway, that's a story for another day. Thank You, Jesus, for your protection! =0)

I do have more to post, but that will have to wait for a bit . . . this post was long enough! ;0) Thanks for your prayers! By the way, did you notice that the last 3 pictures were in succession - Isaiah was blowing a kiss! =0)


Melanie (Allergy Family) said...

Wow, that was quite an update. I was wondering already how you guys are doing and how his appointment went. I'm so sorry that there are still so many questions about his reactions.
When we showed the pics of Owen's swollen face, they right away tested him for hereditary angioedema. His came back negative and I knew it would after I had done my research on it. If the swelling improves or goes away with Benadryl/Atarax then it's not the hereditary one.
Being back in the states has brought us quite a few diagnosis for Owen, so far we have three. Mastocytosis, Celiac Disease and Cyclic Vomitting Syndrome. It was quite overwhelming at first but I'm glad we know what all we are dealing with now.
I just feel so bad for these little guys, they handle their situation so well though most of the time it amazes me. Tonight was a little tough, as Owen thought it wasn't fair that he had to take his meds since his brother is meds free now. They just want to be normal just like all the other kids and I think the older they get they realize they are not.
I hope you get the results soon and they can figure out what else is going on with Isaiah, knowing is half the battle.

stitching under oaks said...

13 medications...oh girl! we're still praying...i so admire your trust and your confidence in the Lord. You saying He'd tell you if He wanted you to know, that is so powerful. Hey, homeschooling is good! You two will have fun and you'll be building such godly traits in him that when he is released to go on and go to school, he'll be strong in his faith. hang in there, we love you all!