Wednesday, June 30, 2010

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.


leah said...

My goodness- you have been through the wringer! I can't believe they wouldn't take his blood pressure in the ER- because he would scream? That's a vital part of getting to the bottom of this, especially since he's already on blood pressure meds! Yikes. We had a similar happen with Nolan's bladder ultrasound one year. The lady felt bad because he was crying, so she didn't get the scan completed. Great- so now he has to do it TWICE! Sheesh.

I know that high blood pressure and nose bleeds can be related, and I'll bet there is some underlying cause for the pupil dilation/random nosebleeds-I hope you find a good, caring doc who can get to the bottom of it all!

kaies said...

Oh my GOD!!!!!

That is so horrible no one is taking it seriously, you are the mother and you know when something is wrong. BTW I would have died as an infant if my mother hadn't insisted that I be put in the hospital ( I had pyloric stenosis-rare in girls) Ya'll will be in my thoughts and prayers