Tuesday, February 3, 2015

She's ALIVE (E health update)

That "she" would be me. I am alive. My Facebook blog page is telling me that I'm all but on a milk carton. I'm here to tell you that my absence hasn't been by choice. I wasn't kidnapped or anything. I just haven't had one normal work-week in I don't know how long. Between sickness and snow, and crazy people encounters, it's been...interesting. And a time-suck. I'm sure some people see silence and just think I must have nothing to say. No, no. I always have something to say. I actually have a back-log of things I've been meaning to write about but just haven't gotten to it. Good thing I don't have deadlines or advertisers.

I'm going to talk about E's health. For those of you who are interested in that, I have a bit of a (long) update. I went to a pediatric neurologist (Dr. Daniel Adler, Englewood) recommended by an old friend. It was a good recommendation. I was spazzing out because I got the address off the internet and he apparently hadn't been at that location in five years. Touche! Now I know how all the people who go to old locations of my store (address listings that we can't get rid of) based off the internet feel. The only way to contact the doctor seems to be by cell phone in an emergency. Well doc, not being able to find you IS quite the emergency to me. I called that cell. He answered. Gave me the address. Didn't bat an eye at the intrusive call. Came out and met me when I got there just to calm me down. He said I sounded like I was in a frenzy. I was. Because I'm not late for anything- EVER. To me, early IS late. I was freaking out- especially because pediatric neurology appointments "in-network" are not easy to come by.

I wish I could remember the nurse's name who took all our information and really got down to the nitty-gritty with us. She was terrific. She did her thing for the bulk of the appointment and then we saw the doctor. He said that E has "Tic Disorder". That versus "Tourette's". I didn't really read up on all the differences but I think the biggest one is that there needs to be a verbal tic for at least a year before it is considered Tourette's. It seems to me though, that it's really six one way, half a dozen the other. The bottom line is that either way- the end result is to medicate or not to medicate. Of COURSE, E has an atypical case, which I was in no way surprised to hear. I would've been more surprised to hear he had anything typical. He has no other behaviors like OCD or whatever and the tics aren't affecting his learning abilities or focus. Picture a kid who can sit for hours doing Lego sets way above the suggested age, having to use his hands, obviously, but doing this weird finger tic, THE WHOLE TIME, that I can't even describe. Finishing these sets all in record time too.

We're not going to medicate. The medications for this are like tranquilizers. We don't want to change his awesome personality. We've been down that road with the Singulair and Albuterol. Where he was pretty much a little a-hole for a month and we had no idea why. No thanks. I don't need my happy, go-lucky, funny kid becoming a zombie at six years old. He's reading, he's writing, and he's putting together really difficult Lego sets. We're leaving him be for now. The doctor and nurse said to keep an eye on it. See if any of the tics get to the point where they're affecting him negatively. Email the doctor. Alrighty, then.

Edit: The neurologist doesn't believe in PANDAS so we're not even looking into that. He has no tonsils and the doctor said that even if PANDAS was a thought, it would have been right after he had strep. He hasn't had strep, in any form, and only once, since well before his surgery. He also said he would not suggest medication. Not at this point anyway. So we're going with his recommendation. This is not my area of expertise. I have to trust someone.

There is still another piece to this. Now bear with me because I don't have a lot of information here. We took him to the immunologist a few months ago and she saw "something" in the bloodwork. To be honest, she talks so much. So, so, much. I just don't have the attention span myself for this amount of talking. So I don't know exactly what it was that she saw. From my understanding, it was something sort of rare, that could be an indication of some kind of auto-immune thing, but also could be nothing. She ordered blood work again to see if it was a false positive the first time. She told B and I to "go to a neurologist OR a rheumatologist". I chose neurology. I don't know why. I guess because so many people wrote me from the last blog about his health that had to do with neurology stuff. I thought maybe that specialty encompassed more. Whatever- I did eenie meenie miney moe.

This brings me to last week when E started coughing like the old tonsil & adenoid laden days of yore. I took him to the pediatrician because I forgot what to even do for coughs and sickness. It really has been that long. I don't even think he's been sick with a cold since his surgery in June of 2013. I wasn't even sure he had a cold. But. That. Cough. It gave me flashbacks. And not in a good way. Every coughing fit is a knife through our hearts. It's pitiful sounding.

The pediatrician said he read the immunology report and asked if we took the recommendation to go to a rheumatologist. No, we had not, because we did not realize that was imperative, through all her talking. We thought that was more of a suggestion, like whenever we got to it. So that's my next appointment to make.

The pediatrician did a strep test and a flu test, and both were negative. We have no runny nose and boogers. But we are back to that sniffle with nothing coming out when we blow his nose. That indicates to us, that infection in his nasal cavity. So I arbitrarily decided that I was using the one refill of Cefdinir (antibiotic) we had in E's CVS account. I don't wait - when I see a potential cure, I take it. Why, if I'm not a doctor? Well, because every single doctor seems to have a different diagnosis and course of treatment for him. If I can knock it out without co-pays and conflicting diagnoses, I'm taking it. What I've also learned through this 5+ year medical ordeal- you do what works. Whatever works. Holistic, medicinal, big pharma- I don't CARE. I will DO WHATEVER WORKS.

I started giving him antibiotics this past Saturday. I'd say it's helped some. But we've been awake, all of us, on and off, all night, every night, for a good six days now. It's like having a breastfeeding newborn. Uh, read that correctly please, I'm not saying I'm breastfeeding my six year old- I'm saying I'm up every damned two hours with a coughing child. I've given him cocktails of different Robitussins, Vicks on the chest and feet, Chestal, and who knows what else. We bought a humidifier thing that you put Vicks liquid in. I'm pretty sure all that did was make him moist and hot. Just get me a cauldron and a black pointy hat. Lastly, in two or three days he's had three bloody noses. We attribute that to the dry, dry air in the house and using non-allergic nasal spray and saline spray up his nose daily. From being dry and then poked in the nose twice a day, that's what I'm going with for $1000 Alex. Because I don't have any other explanation.

Today he is going to the ENT. So, you'll just have to stay tuned.

***Update*** ENT (Dr. Surow) thinks it's a kind of croup and gave him a steroid. Steroid supposed to knock the cough out within 24-36 hours. It is not contagious. Croup usually doesn't affect kids his age. But of course. Continuing Cefdinir per the doc anyway- just in case. No cauterizing of the nose- unless he continues getting bleeds.

Good times.

On the positive side- he lost his first tooth. He asked for a quarter. We gave him two. THAT, my friends, is how you manage the expectations of a six year old. No $20 bill per tooth in the D-K house. Best part- he has "shark teeth"- adult teeth behind the baby teeth. So the baby tooth just kept growing forward until it came out. With the big one already in place perfectly- NO. SPACE. Good thing, because this non-stage mama wasn't buying a flipper. No Toddlers & Tiaras, thanks.

I didn't realize this would be so long, so I'm going to end here. I'll start a new entry for anything and everything else.

1st tooth out! Bottom front. No space!

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