Friday, February 17, 2012

Wow, it has been a long time!

It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}

Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions

involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and Zofran became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day.

On December 5th, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his norepinephrine and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were

elevated, but not quite high enough to indicate the presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)

In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and Atarax - both are to be taken three times a day. His Flonase was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to ACH's AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.

The increase in meds seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.

When we returned to ACH in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a pheochromocytoma. They took his results to endoc
rinology (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.


Our next scheduled appointment??? February. :0}

Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral polyneuropathy. What does that mean? Well, we still don't know, bu
t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's hypertonia (over-toned muscles) in his legs and hypotonia (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic diplegia) but something else . . . which means more testing because neuropathy is a symptom, not a cause.

I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.

A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After Benadryl and other meds were given, he calmed down and acted like absolutely nothing had happened.

The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then petechiae . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary.

Again, meds were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.

Now, on to yesterday's appointment . . . The neurology labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the neuropathy was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's meds were increased . . . again. Instead of Zyrtec, Isaiah was switched back to Xyzal (YAY!!!!) and now takes the adult dose 4 times a day. His Atarax dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about
all of that.

By our next appointment with the AIR Clinic, Isaiah's neuro labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors).

Our next appointment is in six weeks . . . I think it's March 29th (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily stimming (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0)

I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}

1 comment:

Carla (Masto Mama) said...

Sounds painfully familiar! I wish we could make sense of it all...praying for you guys....((hugs))