Never a dull moment here!

Things have been just as insane as always, maybe even a bit more than usual thanks to school being out for the summer. Jaymes has been having a lot of trouble with his anger, on and off. Not sure what is causing it though. The strange pupil dilation issue continues, it happens nearly every day and sometimes more than once a day. His EEG came back normal, despite his eyes dilating during the test, so apparently it is not seizure activity that is causing the problem.

In addition to the pupil dilation and outbursts of uncontrollable rage, there is a new symptom that's added itself to the list in the last couple of weeks: nosebleeds. Now, Jaymes has never had nosebleeds; even when he hits his face or picks his nose and does draw blood, it's only a couple drops and that's it. Last week he had the first, which really was only noticed as a little smudge of blood on his right nostril. His eyes were dilated at the time, and he had just finished attacking me in the back yard. a few days later, it happened again, although I was not entirely sure that it was new- I figured it could be what was left of the first bleed just coming out. Either way, it was very minor. I called Dr. Klinepeter's office, and they said we'd let him get away with the two nosebleeds, but if he had another we were to take him right to the ER.

My mother in law and her boyfriend came last Friday to visit. As usual, it was sort of an awkward, uncomfortable thing. Lots of nasty remarks about my driving, my cooking, how much time I spent outdoors on my pony, how Sierra should be 100% potty trained because all kids can be potty trained by two, how if we hadn't moved from Florida to North Carolina, the school there would have had Jaymes potty trained years ago (and no, Florida schools where we lived were pathetic- they have nothing on NC. The Florida schools Jaymes went to couldn't even accomplish making IEP goals that were achievable for him!) So yes, not a whole lot of fun. I got poked at a lot more than in the past. On the plus side, it's a good reminder for me of why I said I will never go back to Florida again for holidays like we did last Christmas.

Anyway, we'd had a pretty typical day. Going out a little, hanging around the house. At around four, I went in and took a shower to get ready for Jaymes to go to Occupational Therapy at 5:30. Had finished my shower and gotten dressed, and was brushing my hair when Jason yelled at me to open the door right now. I was puzzled, but ok, opened the door. There was Jaymes, screaming for a bandaid, and literally spewing blood out of his nose. He was soaked, Jason was soaked, and there was a long, nasty trail of blood that led from my living room to the bathroom door.

Apparently, Jaymes had been playing Lincoln Logs at the table with everyone in there. He did not hit his face, and was not picking at his nose. Jason noticed a drop of blood on his hand, looked at Jaymes, and it really got started at that point. Totally random. His eyes were dilated, and he was jerking his head back and forth slightly while crying hysterically and coughing on the blood, which was flowing hard enough that it was filling up his little mouth.

I picked him up, grabbed half a roll of paper towel, and gave it to him. Put him in the car and drove about 90 MPH to the ER, thanking every deity I could think of for not letting me get pulled over for speeding. Kept checking back in the rearview mirror, and saw poor Jaymes scrubbing his nose furiously trying to stop the bleeding. It bled very heavily for the whole 20 mins it took to get to the ER. Jaymes face, hands, clothes, and carseat were covered in blood. The huge wad of paper towels was totally saturated in blood. Thankfully at this point, the bleeding had stopped.

At this point, I can't help but feel very irritated. the doctors kept us in the ER for hours, but did not do a single test. They refused to do a blood pressure on him, because he was autistic and would scream. He's on blood pressure meds, might be a good idea. But you know, I'm just a stupid uneducated stay-at-home-mom who couldn't possibly know her child as well as this random doctor.

They told me that the nosebleeds and the eyes dilating are unrelated. I don't buy that- he's never had nosebleeds until recently. And all three occurred after the eyes dilated, he had a meltdown, and then he calmed down. That's not a coincidence in my opinion.

They also told me that the bleed was probably just the result of allergies. I explained that Jaymes was very thoroughly tested for allergies by that hospital's allergy specialists. The only test that had not been done was the skin test, simply because Jaymes could not be still long enough to have it done. He was blood tested for everything under the sun, including the pet rats we had a couple years back. They swore to me he was not allergic to anything. So, if this was caused by his non-existent allergies, someone's got some 'splainin to do.

And as usual, the "plan of action" was... No action. Take him home, hope it doesn't happen again. Stick some vaseline up his nose. Wonderful.

I spent the day today on the phone with every doctor he has seen in the last year. Talked to the primary care pediatrician's office, they said that there would be no point in seeing him, but that the doctor might order a CT scan and they would get back to me. The allergy doctor called me back, but my phone didn't ring and it went straight to voicemail- and I'll never get ahold of her again, so hopefully if I leave a message tomorrow, she'll try and call again. Left one message and talked to the patient scheduling person at the psychiatrist office (Dr. K, who is the only doc who has shown any real concern about all this), but did not get a call back today. Apparently Dr. K is out of the office for awhile, so even if I do get a call, it'll be someone who doesn't know us or have any of the background on things. Talked to Duke Neurology, they were kind enough to move his appointment up by a week, so he will be seen on Friday. The pediatrician would not move the brain MRI up, that is a week from today. I also spoke to the Ear/Nose/Throat specialist, and they will see him Friday afternoon, to look at his ear infection and also to see if they can find a physical reason for the nosebleed from hell in his little nose.

So while I still feel like I'm not doing enough to deal with this, at least things are moving forward. I just wish the docs would take this seriously. I'm sorry, but anyone who tells me not to worry about a child who comes in with unequal pupils, loss of balance, serious change in speaking ability, bleeding profusely from the nose after the pupils dilated... That's bullshit. Plain and simple.

I will get someone to take it seriously, and I will get to the bottom of this if it means going through every doctor in the state of NC. I will not be told that this is all because of the autism. That is a stupid copout.

Still here, but waving the white flag of surrender...

This has not been my month. Not a good one for Jaymes, either. I have never been so insanely busy, exhausted, and overwhelmed as I am at the moment.

The unequal pupils thing continues to happen, though it's been seen by a whole bunch of medical folks, which is good. He did it during the EEG (and no, I still have no results from that), during a hearing test, at the pediatricians, at the ER... It totally freaks out my one friend. The doctors have needed poking and prodding to do ANYTHING, which is incredibly frustrating for me. The only docs showing any real concern are Dr. K, who prescribes his meds and who got the call the first time the pupil thing happened, and Dr. A, the pediatrician.

Anyway, Jaymes has appointments for the brain MRI on the 7th of July, and for the neurologist at Duke on the 9th. In August he will see genetics at Duke, on the advice of a friend with a medical background. We really need to find out why he's been like this, and whether there is something bad going on in his sweet little head. Very scary.

I spent a ridiculously long day trying to get meds for my anxiety at the psych place up in Winston. Got there at around 9am, was not seen till almost 1:30. Sierra was with me, she was such a good girl. And thank god for Ipod Touch and Ipod Touch apps- My Little Suitcase saved me a lot of cranky bored 3 year old. Sierra played it over and over and over and over. Totally worth whatever I paid for it- $3.99 maybe? Or it might have been $1.99. I can't remember. Again, totally worth it. Anyway, after an entire day wasted on waiting, still no meds. I do have an appointment though, for the end of July. I was given the option of coming back the next day and waiting for a psych cancellation, but opted not to waste another entire day. That, and the place is kind of scary. Lots of realllllllllly scary looking people in varying levels of insanity. One very tough looking lady kept telling everyone in the room "if they don't see me soon, Ima come through that window."

Yikes. I think I'll wait for my appointment. I'm not as insane as I could be, anyway.

Anyway, school is over, summer vacation is here. Went to Jaymes school picnic thing yesterday, it was really nice. Was great to see how many teachers and staff care about Jaymes. He's a popular little booger.

I found out that Jaymes principal did decide to let him stay back in Kindergarten next year. I cannot describe how happy and relieved I am about that. I admit that for awhile I really did feel like it was a constant battle with the school folks, like they were kind of trying to keep services from Jaymes... But I have come to realize that while sometimes they underestimate Jaymes abilities, for the most part they really are wonderful people who do want the best for him.

His teacher, Mrs. Colditz, turned out to be the best teacher Jaymes has had. She really understood my reasoning for the things I asked the school to provide, and went so far out of her way to do as much as she could to help Jaymes succeed in school. I hope he has her again next year, she really is fantastic. The classroom aids were fantastic too- his favorite, "Miss Tasha" is going to another school, which is sad because we really liked her.

It turns out I totally misjudged the "new" principal, Mrs. Cannon. At the beginning of the year, I really felt like she didn't understand where I was coming from (particularly regarding the school bus stop issue that kept Jaymes out of school for the first couple weeks), but so many people I'd talked to told me that she was wonderful- and they were right. I feel bad for being such a witch all school year about things, it's hard to advocate for your child when you feel horrendously guilty for advocating for your child... I know, pathetic!

Anyway, I sense that my sleepy pills are kicking in, as this is getting more and more rambling and less and less coherent... So to sum things up: Jaymes had/has a great group of people looking out for him- at home, at school, at therapy, and everywhere else. Next school year will be a lot easier than this one, now that I and the school staff know one another a bit better. I was wrong about quite a few of the school people- Cash is a fantastic school with a principal who DOES understand that in some cases (JAYMES) you really do have to think outside the box.

So to any school folks lurking around the blog- thank you.