Monday, March 3, 2014

E's Story Part Deux

I wish I didn't have to write a part II but I do...Maybe it will help some or one other parent out there. So here goes:

Here's Part I for those who missed it and need a back story-

So we ended with E's surgery. It went great and MIRACLE OF ALL MIRACLES- The cough is gone. And has been gone. Since the surgery in June. Four years of a two pack a day smoker's cough on a child is now a distant memory.

There's always a but....

It was summer so when he'd still seem a little allergy prone, it seemed normal. We just continued giving him allergy medicine and he seemed ok. He was on twenty-four hour Zyrtec and he was fine on it. Behavior was fine, it seemed to help and we just went on with life. In the summer, after the surgery, he started complaining that his stomach hurt on long car rides down the shore. We just kind of blew it off because he never threw up and it seemed fine once we got out of the car. Then it would happen randomly other times, but we thought it could just be food or constipation related. He couldn't go on rides or even swings at all because he complained his stomach would feel funny, but in a bad way.

Come September again, like every September, he started with these tics that seemed allergy related. Sniffling, pulling on his nose, saying his eyes were itchy, swiping across the bottom of his nose/top of his mouth, and scratching through his hair. At the time, it didn't seem bad enough to be anything more than allergies. It just got progressively worse as time was going on. I can't say exactly when it got so bad that it was distracting and extremely noticeable, but let's just say, it's March now, and it was going on, in different degrees, from September till now.

At some point the pediatrician said to switch allergy meds to Allegra vs Zyrtec because by now, the Zyrtec was doing nothing for him. We switched. Allegra was really making no difference. At first we thought it did but then we weren't sure. He was now at the point of rubbing his cheek/side of his mouth raw from the constant swiping. B took him back to the pediatrician who was SURE it was allergies and sent him back to the allergist. He said the belly thing was probably a food thing. I didn't think it was because he eats very plain/bland and eats the same almost daily.

The allergist said it wasn't allergies but wanted to put him on antibiotics. B immediately said no. We're not just putting him back on antibiotics when we don't even know what's wrong with him. He's been on almost every antibiotic known to man. The allergist then convinced B to put him on some kind of prescription nasal spray. For "allergies". Even though there was no known allergy.

E complained the nasal spray burned his nose but we wanted to use it for enough of a time to determine if it was helping or not. B called the pediatrician again and said he's still doing these tics and he doesn't think the spray is helping. The pediatrician suggested an Occupational Therapist. And gave us a recommendation.

I took E to the OT appointment. I don't know what it's supposed to be like, but I gave E to her for approximately forty-five minutes and I filled out papers. At the end, I was asked for $300 and told that the thought is that he has vestibular sensory processing disorder (or something like that, with the main word being vestibular). Well, that's a scary "diagnosis" if you read up on it. I was so thrown by the cost of the visit and then what would the cost of subsequent visits ($145/ea) and the terms thrown at me, that I couldn't even think straight. It was just all too much. Because I was also told that this eye thing he's doing is separate and even she would have to consult with a separate vision therapist to deal with that aspect. All a hard pill to swallow. I don't have that kind of money. Also laid on me was that if I don't deal with this now, it could negatively affect his reading later. Well- everyone wants to do what's best for their kid and wants to get them the help they need. I was finally put in the position a lot of parents are in where you are told xyz is wrong but you don't have any idea how you're going to be able to pay to correct it. It's upsetting to say the least.

I left there feeling sad and defeated. And a little taken. I went home and looked at the OT's website and there was a video like with Sarah McLachlan and the shelter dogs. Very "sales"-like. Immediate turn-off. We already knew we weren't going to go with this OT because she's out of network for us. We have to pay enough as it is when someone IS in-network, but we just can't pay that kind of thing out of network. Just not even possible if we wanted to go with this therapist.

I told my husband everything and he decided that he was going back to the ENT. When this surgery is done, as long as everything is fine after, they don't re-check anything. It's just over. And for most people that's fine. Of course, not for E.

B went to make an appointment with the doctor that did the surgery. Interestingly enough, this is a huge practice with numerous offices all over NJ and other states but each doctor takes different insurances. The doctor that did E's surgery doesn't take the insurance we changed to after E's surgery. So I picked the doctor that I was originally referred to as "the best"- Dr Jason Surow. I anticipated a long wait for an appointment but that didn't happen and he was able to see E in a few days.

B took him to the appointment and Dr Surow put a camera back in E's nose/sinus area and showed both E an B (who both were into the cool factor of a camera in the nose). Turns out there was a pocket of infection way up in just one side of his sinuses that we don't know how long it was there. The doctor explained that with this infection, it could've been affecting his whole facial area where he was having all these tics. He couldn't say for sure the tics would stop but he felt that a course of a totally different antibiotic than he'd been on, saline, a prescription non-allergy nasal spray, and Mucinex would knock it out, with possibly a second course of the ten day antibiotic. Dr Surow said it was a good thing we didn't go on the antibiotic from the allergist because it would've been the wrong one. And he definitely didn't think E needed to go the OT route yet and surprised at the vestibular sensory disorder findings. He felt like it could be possible that with the sinuses and infection, it could've affected everything else and we'd see in a short time from the meds. He said it's possible the constant drip and infection could make him nauseous so we'll be able to tell about the belly thing when this is all cleared up.

Again, we finally felt like this could be the END of this horrific, fifteen doctor, medical journey. We were cautiously optimistic. But this all sounded more likely then this vestibular thing. And BTW, B got an email from the OT, in what we considered an unnecessarily aggressive touch, that said spaces were filling up and it would break her heart if there wasn't a spot for Ethan. I had already TOLD her we couldn't afford her so we really didn't appreciate the tone of the guilt email. We can't magically make hundred dollar bills appear. We're not in the business of counterfeiting.

We started the medication a week ago today and he's like a different child. The tics have mostly ceased. He's still sniffing a little but he does constantly have saline being put up there and we are aware he may need a second round of the antibiotic. Really though, our main concern was the tics and if we can just rid him of those, we will be happy parents. Kramer was funny but no one wants their five year old to remind them of Kramer. Now B can't wait for it to get nice out to test out the stomach issue.

So for now, this is the cautiously optimistic end to E's Story- Part Deux. We're crossing everything we can cross that this is over. It's been an exhausting ride. But if there is any piece of advice I can give to other parents it's this:

I actually like our pediatrician and think he's a smart, decent guy. He's levels above what I was dealing with when we were going to the "holistic" doctor. I just think that there is a lot beyond the realm of a pediatrician that you have to do legwork on yourself. For run of the mill stuff, going to the pediatrician is wise and expected. But for out of the box stuff, you just have no choice but to go further. And question everything.

If you don't like what your pediatrician or any other doctor is saying- GO TO SOMEONE ELSE. Just because it's where you've always gone or they "know" your kid- it doesn't matter. Sometimes all you need is fresh eyes and perspective. Doctors don't know everything and you can't just trust what they say. Go with your gut. You kind of have to research everything yourself because no one is going to do it for you. Don't get roped into expensive therapies just because someone tries to scare you into it. By all mean- get the help you need but what I'm saying is to just make sure you need it. Make sure someone isn't guessing it's what your kid *might* need. If they don't know for sure, then keep making appointments with different doctors until you're satisfied you have the right answer. Lastly, for us, the ENT was the way to go. Use your instincts- not what your mom, neighbor, sister's husband's cousin, or your great aunt says. Fight for tests, ask questions, and see however many different specialties you feel you need to see. Do you. Because no one else will.

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