Wednesday, July 3, 2013

E's Story

I wanted to wait to write this story until it had an "ending". And by ending, I mean, not just a diagnosis or a plan. An end to me meant or means a coughing cease-fire. It's been over FOUR years. FOUR. That's a long time to have a kid sound like he smokes two packs a day and regularly get the side-eye from passerbys who commented that it was nice to take my kid out with a cough like that. Thanks assholes. He has Ebola. You might want to move to the next aisle to buy your groceries. That was my standard answer.

I thought it started at ten months old in November of 2009. That was his first real cold that kept us all up for days of congestion and restlessness. But B says he had it when my mom was still alive and that was prior to him being seven months old. So somewhere between birth and ten months he developed this cough.

I picked my pediatrician because he was not old school- he was new school. Holistic. People that go to him drink the Kool-Aid from an endless vat. I hear you can't even get in there as a new patient these days. I had worked in the autism community prior to what I do now. I had so many cases where "old school" doctors poo-poo'd autism markers, saying the markers were nothing and to wait to do anything. By the time it was decided the children were on the spectrum, it was really late to get as much help as they needed. I just wanted to know the pediatrician would take any concerns in that area seriously. I was told this was the doc to go to. Plus, I knew it wasn't an alarmist/conservative kind of practice. But maybe the alarmist approach would've gotten us to a diagnosis sooner. I don't know.

What I do know is that it was NEVER mentioned to us that E had large or larger than normal tonsils. He never suggested I see an ENT. E also didn't get the traditional illnesses associated with needing an ENT doctor but it could've been suggested as a next step at some point. E ONLY had the cough though most of the time. He didn't have ear infections. Maybe once. He didn't have sore throats or strep. And both ran rampant around his two year class at school. He did have a runny nose here and there but I kept it under control with stuff from Whole Foods and Benadryl. But he was never the kid with green snot all over his face and he never really seemed sick in the traditional cold-sick kind of way. Or he'd get a small cold and it would go away in a few days. The cough though- it would linger for WEEKS after he had no other symptoms.

I'd gone to the pediatrician numerous times. I never seemed to be able to see the doctor I wanted. That is NOT how it was supposed to go. The other original doctor in the practice, who was amazing, left shortly after we started there. Over time, there were two news ones brought on who were as useful to me as feral cats with attitudes to match. The holistic Whole Foods remedies weren't working. I started to get fed up with that. So, he was put on antibiotics a lot. Nothing would really get rid of that cough. He was also put on a steroid, Ora-Pred a few times and it seemed, coupled with antibiotics, that it would knock the cough out. Then it would come back a few weeks or six weeks later. Sometimes with other minor symptoms, sometimes not. Sometimes it would be winter and cold but he also had it in the spring & summer. Sometimes he'd cough from running, sometimes he'd cough from standing still. Sometimes it would be from being outside and sometimes it would be from being inside. There was absolutely no rhyme or reason to it. In September 2011, he seemed to be having some kind of weird allergic reaction and tic, ALONG with the cough. He was ripping at his eyes and nose to the point where he made a hole in the skin on top. It happened again the following September 2012 as well, just with no hole in the nose. But he was scrunching up his nose and scratching in his hair. I think honestly, he just couldn't breathe and it caused him other problems. He was just very uncomfortable in general.

At some point, the pediatrician said to go to a pulmonolgist. So we did. Worst experience. Besides not being the warmest of doctors for a two year old, my son was barely looked at and immediately put on inhalers. I was told it was asthma. I had no experience with asthma- Neither my husband nor I have it and it doesn't run in either family. But we followed directions and were giving him Qvar and Albuterol. The albuterol made him crazy so I wasn't that thrilled with it. I thought maybe he really had allergies so I took him to an allergy doctor. He was skin tested for allergies. Came up with nothing. But it was told to me that sometimes allergies don't show up in the test at that age. They told me to take him off the inhalers, they didn't think it was asthma, and I was given Singulair. I'd heard of Singulair because my eleven year old (at the time) mother's helper had taken it and thought it was a wonder drug.

I was not warned of the possible side effects that can come from children taking Singulair. Yes, I'm aware as a mother, I should be reading up on any drug I give my kid, and this was a lesson well learned. His behavior got so bad that I didn't think I could stay home with him anymore. I gave it to him for 30 days. Thirty days of complete torture.  I was miserable. He was miserable. I had no idea it was the drug- I thought it as just the "Terrible 2's" kicking in. It was awful. I actually rear-ended someone in Ridgewood because he was screaming like a lunatic in the back seat, which was SO not his normal personality. Later that night I looked up Singulair and it SAYS that aggressive and/or irritable behavior is a possible side effect. A-HA! I stopped the pill and literally in 24 hours he was back to my normal, happy, sweet, boy. But the cough came back.

I ended up going to the head of the practice at the Asthma & Allergy doc. He was really great- he immediately ordered a CT scan and got us in for one that day. We went, E was somewhat cooperative. I have to give a shout out to Joe at Radiology Associates in Waldwick. I've used them a handful of times- mammograms for me and two CT's for E. Joe made E feel as comfortable as a two year old could feel getting one done. It was quick and painless. Turned out that seemed E's sinus area was pretty full. So it seemed to the doctor that he was getting chronic sinus infections. He also did not think asthma. We ended up going there for about ten months. After many different antibiotics, steroids and unconventional medications, the doctor finally said that he thought we needed to go another route.

I arbitrarily picked "Infectious Disease". Why? I'd given up on the pediatrician. I wasn't dealing with that moron of a new doctor who told me that I should've made my son throw up when we thought he swallowed a piece of an Excedrin. Then called me back to tell me I didn't have to do that because she googled it. Anyway, I just went rogue and decided I'd find answers with whomever wanted to give them to me. As bad as "Infectious Disease" doctor sounds, it's basically a doctor for when no one else can figure out what is going on. I picked one out of our insurance and made an appointment. He gave E a full battery of bloodwork. He checked him out. He came back to me with....drumroll....NOTHING. His bloodwork said NOTHING. I was glad there was nothing seriously wrong but I was back to square one and so frustrated. I had been mentioning this whole thing all along to my own doctor who casually threw out that it could be Cystic Fibrosis. What the WHAT, now? That's definitely not what I wanted to hear or something I felt should be just put out there in a casual way. The only CF I knew of was from a TV movie of the week back in the 80's where an 8 year old had it, they would turn her upside down and pound on her chest to get the mucus out and she DIED at the end. And the girls who have it on America's Got Talent a couple of summers ago who had two other sisters who also have it, one of which who has also passed away. Apparently, I have more recently found out that there are like a hundred strains of CF and they are not all fatal. But it was still a lot to digest. Lo and behold, sweat testing done and he did not have CF. But WHAT THEN???

I also decided around February of 2013 that I was also changing pediatricians. When I started with mine I loved him. And his partner was great too. But they went through too many changes, the partner left, it would take months to see E's "main" doctor, and, the office staff lacked....pretty much everything. Anytime it was an emergency for us, which honestly, was VERY rare- maybe 3x in four years, I'd get the doctor I didn't trust or respect the opinion of whatsoever, no matter what. Every experience with her was a nightmare. Not just unpleasant, but a nightmare. I decided with all E's unknowns and problems, I couldn't have a pediatrician I didn't trust and strongly disliked. I didn't need to take that. I took a Facebook poll and decided to go where it seemed everyone else from his school was going. Tenafly Pediatrics in Paramus. I made an appointment for his well visit with a popular doctor. But, before I could get there for that, the cough came back with a vengeance. After listening to it for so many years, I know a doctor visit worthy sound vs a let-it-go sound. Off to Tenafly for a "sick" visit.

We got Dr Smith. And boy were we in luck. For the first time, SOMEONE seemed genuinely fixated on finding out what the fucking fuck was wrong with E. I don't know if it was ego, being super-caring, or what- but Dr Smith was IN. And I believed him. Except, now, for the first time I was told that E had wheezing. So the doctor wanted him to be back on the inhalers. Except instead of the dreaded Albuterol, he gave me Xopenex. I was ok with it. The inhalers seemed to help a little but not totally. The wheezing went away but he still had the cough. More antibiotics and more steroids.

Then I had his well visit with a different doctor. We then heard something else for the first time. In all the docs we'd gone to, this was the first time we heard that Ethan had large tonsils. Not abnormally large but large. This made sense because this is also a boy who hates to eat except for puree pouches and kefir, which is like drinkable yogurt. Well, a kid with large tonsils might find it uncomfortable or annoying to eat real food. Swallowing might be a little more on the difficult side. Interesting.

Dr. Smith had advised me to see another pulmonologist and an ENT. The asthma & allergy doctor had told me that basically an ENT is the same as him but would recommend surgery. The thought of surgery was just not something I wanted to do and I thought it was more of a choice than a necessity. I picked the new pulmonologist. I went there and she said he doesn't have asthma. Imagine how frustrating this has become at this point- he does, he doesn't, he does, he doesn't. Inhaler, no inhaler, so on and so forth. This doctor told me to stop with the inhalers. I was so confused at this point. I did eenie meenie miney moe from the list Dr Smith gave me and got a group. They gave me an appointment with Dr Lesserson. His name actually was NOT specified on the list but I took it. I was second guessing myself for doing that all the way up through sitting in his waiting room. I realized though that he was part of ENT & Allergy that is a huge practice with offices pretty much everywhere. I was kind of relieved because I felt like this was the place to be. Plus it was in Hackensack, if there would be surgery it would be at Hackesack Hospital and I am comfortable with that hospital.

Dr Lesserson was nice and he seemed like he was no joke. I've met some doctors who seem more nutty professor than focused, serious doctor. And I've come to realize in all these visits, not just for E, but for me, for B, for my mom, for my friends- just because someone is an MD doesn't make them good at what they do. I think you get an initial gut feeling and my feeling was that Dr L knew what he was doing. He did his little exam on E, stuck something down his nose and throat, turned to us and said- Oh yeah he's 90% blocked. He's going to need surgery. I'd like him to get another CT to check out his sinuses and see if he needs some other (I forget what) procedure along with the tonsil and adenoid removal. Let's schedule a date.

I was a little taken aback because surgery was the last thing I wanted. But at that point, I knew it was necessary. B and I also felt bad because all this time our poor kid was running on 90% blockage! Honestly, we couldn't believe he was as active as he was with so much blockage. This kid is always running in circles. Running anywhere and everywhere. We had taken to calling him Forest Gump. We scheduled the surgery for June 17th.

We had to be at the hospital at 6:30a. From there it was like a blur. He was the first surgery of the morning. They allow one parent into the ER with the child. I went. As only my kid would do- he hops up on the OR table, asks if this round spongy thing was a pillow, laid down on his back with his hands behind his head like he was going to be fanned and fed grapes. The OR staff- the anesthesiologist, the nurses- all surprised and cracking up. He closed his eyes and off he went. Surgery took about forty-five minutes, Dr L came back to us and said it went really well and there was almost no bleeding. Apparently that is unusual.

Then, nothing went as I was told. I was told by everyone- parents of kids who had this surgery, the doctor, random people, that he would be down for the count, bedridden, and wanting to rest. No, no. Not E. The day of the surgery, we got home, and all he wanted to do was go out and play. What? Crying. It was like he was on crack. He just wanted to jump and run and play. Not good. We were told by the doctor he wanted him basically to be "King of the Couch". In the house, resting and not riled up, for TEN DAYS. TEN DAYS. No play dates, no running around, no chaos. Trying to keep E restful was probably the hardest job ever. After one day, I gave this job to B and I went to work. It took six hours of tedium but they built the Hogwarts castle of Legos. Jenn brought by a building game thing for him. Our friend Melissa and her daughters Brooke & Lauryn brought him many movies from the Fair Lawn library and other cool stuff to play with. But all he wanted was OUT. Finally after a few days I took him to the mall. He's used to shopping with me, no friends around there to rile him up and he could skip (our compromise instead of running). We stuck to the rules as best we could because he was starting "real" camp on July 1 and we didn't want any mishaps prior to camp starting. I say "real" because this camp means a bus and a really long day- from door to door is around 8a-4:30p. That's longer than some people's workday. So we obviously wanted to make sure he was fully healed being that he wasn't a just a few streets away if we had to run there.

As far as food, that was a nightmare too. He barely ate before. All anyone told me was that he'd eat tons of ice cream, pudding, and ice pops. The doctor wanted everything to be cold. So even if he ate food like mac & cheese, it also had to be cold. Ok. I had previously bought a ton of puree pouches. Except that one of the rules was no sucking motion allowed. No sucking on the pouches and no straws. Well, he only really drinks out of a straw cup and eats pouches. I squeezed a pouch into a bowl and gave him a spoon. No way for this creature of habit and very visual kid. Not the same seeing it in a bowl so it was a no-go. Same with the kefir. No straw, no-go. Then, I stocked up on Pediasure, pudding, ice cream, ice pops, frozen kefir pops, etc. He wanted no part of anything. He said his kefir tasted like "carrot dip" (ranch dressing). The only "hit" was the grossest Turkey Hill Chocolate Marshmallow Frozen Yogurt. Whatever. Whatever works. Eventually he just wanted mac & cheese and pancakes. So that's what he ate. I was dying that I bought all this kefir and now was he going to shun it forever. Was this his new taste??

We had been giving him the Tylenol and Motrin alternating pain relieving schedule. Every 3 hours alternating. His days were pretty fine- I have to say. But nighttime was a real bitch. He'd go to bed fine around 8-8:30p. But like clockwork, from nights 3-6, he'd wake up between 10-10:30p almost in a trance of pain, holding his ears and screeching like an animal. E has never given us any trouble taking any meds- even the grossest of antibiotics. But at this wake-up, every time, he's be crying and screeching and refusing the Motrin. It was SO weird. Because when we'd finally get him to take it after about twenty-five minutes of carrying-on, he'd be sleeping in maybe 2-5 minutes. Then he'd sleep till like 4-5a and we'd give him more meds and he'd go back to sleep for a little while and be up at 7a. Finally around days 8-9 that stopped happening and he was going from 8p till 6-7a. I was afraid that was going to be his new wake up time forever instead of his old 7a-8a but at least I wasn't up in the middle of the night with him like I had been his entire life.

He also didn't seem to be grinding his teeth which was the biggest bane of my existence in all this. He had ground some of his teeth down to tiny nubs! I had asked the dentist about it but he shrugged it off like it was no big deal. To me it has been though because it looks terrible. His crazy sleeping had all been a huge issue for me. We were really looking for this surgery to stop the cough but also to calm his sleeping down. Prior to surgery he would be all over the place, grinding his teeth, yelling out, waking up at all hours, and just never seeming to get into a deep enough, really restful sleep. As the days went on his sleep seemed to really calm. He wasn't snoring or grinding, he wasn't tossing and turning, and oddly, he went from sleeping on his belly to his back.

At the ten days I went with E for his post-op. Told Dr L that E just never crashed or needed any down time. He called E "Iron Man" so that made E happy. He said he looked good and he was allowing straws and most food. Just nothing really crispy. Off we went to go home and eat pouches and drink anything with a straw. I gave him a pouch and kefir back in his cup and down the hatch it went. YES!

By days 11-14, he seemed "normal". He stopped saying his ears hurt, he was sleeping fine and even getting up later. Just as he was going to need to start waking earlier for camp. Of course. Now- at day 18, you wouldn't even know he had surgery. His eating still sucks but that just must be his personality- he eats to live, not lives to eat. He just doesn't care much about food. He started camp and we've been told he's been choosing to eat bagels and cream cheese for lunch- his old standby from before surgery.

Some mom I met who happens to go to my old pediatrician jumped into a story another mom was telling me about her son's surgery. She basically was saying she cured her daughter without surgery, with some holistic method. I'm happy for her that her daughter didn't need it. But E needed it. There is a huge difference just in his sleeping alone. We've heard him cough here and there just a few times post-surgery but that could've been because he had scabs in his throat. And it didn't have the same intensity or sound of the old cough. Only time will tell. Dr Smith did feel like he had something else that was causing the wheezing that this surgery quite possibly wasn't going to fix. But again, with that, only time will tell. All in all, I thank Dr Smith for really caring and pushing me to go the ENT and Dr Lesserson for doing a fabulous surgical job and giving E a chance at not walking around like you expect a stogie to be hanging out of his mouth. Thirteen doctors. Thirteen. By George, I think we got it!

1 comment:

  1. That was great t! You've been through a lot. So glad he is doing better. It's always the worst feeling in the world when your kids are sick and when no one can tell you what it is, just adds to the stress. I was sick with strep constantly until age 18 I begged my doctor to take my tonsils out. I've never been sick with strep ever since. Take care, hope you are all doing well.