Just Another Manic Monday...

Although it's Tuesday, this is definitely an appropriate title, as things finally came to a head with Catherine last Monday.

After a hellish week with Catherine, I sat down on Sunday night defeated, sad and extremely tired. Did I mention that in all of this, I am also taking a full-time graduate school summer semester? Yeah, that started last Monday. So talk about making my life a little more hectic, but I definitely needed something for ME. So I am glad that I am doing this. But enough about me...

On Sunday night, I noticed that I had not checked my messages for a week or so. So I checked the messages. One was from our ENT. He said he had the test results back from Catherine's ear culture (you know, the nasty, goopy snot that comes out of her ear when she has an ear infection). I knew this already because, thanks to technology, I get an email update every time that a test result comes in. It came back as Group A Strep. I didn't think much about it, because honestly, I didn't figure anyone was going to help me. However, in his message, he stated that it was "unusual" and I should consult with my pediatrician about it. So I made an appointment Monday morning.

Monday afternoon, I took time off work, AGAIN, to take Catherine to our pediatrician, AGAIN. By this time, her ear was leaking clear fluid and she had a runny nose. I knew an ear infection was coming because that's our M.O. with ear infections. Not to mention, she had a pretty terrible day at daycare.

So I definitely was anxious to get there. I thought we were just going in for an ear infection, but the past few weeks ended up taking a toll on me. I cried through almost the entire appointment. I cried harder when the doctor told me that she thought we may have exhausted all of our resources, and nearly punched her in the face when she told me that maybe this is just the way it is. She mentioned something called PANDAS, which went in one ear and out the other, and just felt defeated. However, she wanted to try an antibiotic diagnostic test on Catherine to see if her behaviors improved. So Monday, I headed to a special compounding pharmacy since almost ALL pharmacies add dyes to their antibiotics. We had our first round, the greatest dose that she would get all week, on Monday night.

On Tuesday, Catherine woke up with - yep, you guessed it - an ear infection. Are you fucking kidding me? Didn't I even say to the doctor when she looked into Catherine's ears that her ears looked fine and yes, one was draining, but it wasn't red or swollen or anything. Less than 12 hours later - ear infection. And it was nasty. Yellow, goopy snot. Literally, snot. Just like all the other times she has had snot come out of her ear.

So I took a picture of it. I was prepared to glove up and start fighting. This was disgusting, Catherine can't possibly be able to hear with this stuff in her ear, and clearly, the antibiotic was not working, even after the gigantic dose we gave her Monday night.

This is usually the start to all of Catherine's ear infections. Begins with clear fluid, turns into yellow snot, and then usually bright green and just pours out of her ear. This was taken after just dipping the swab into the lower part of the ear where the snot gathers before it runs down the side of her face. 

Tuesday night, we gave Catherine another dose and on Wednesday, she was an absolute DELIGHT. It was like night and day. Her aggression was gone, her tics (particularly the hm-ing that she does), she laughed, she was able to play with James. We were thrilled to have Good Catherine back for at least awhile. But I am always waiting for the other shoe to drop.

Wednesday night brought storms through the area, and our neighbors tree fell into our house. A little damage in a lot of places, so we are fortunate that way, but we were able to remember to give Catherine her latest dose of medicine.

Thursday was another awesome day. By the way, did I mention that we were keeping a very VERY strict diary of her behaviors. Daycare included. It was so nice to report nothing new, terrible, or heartbreaking on Thursday. Friday was a little tougher, but I thought Catherine was maybe tired from the week. Low and behold, her OTHER ear (yes, the one with the tube still in) started leaking clear fluid. Even after a huge dose of antibiotics all week. Friday night brought havoc with clearing tree debris, and we forgot to give Catherine her final dose of antibiotic. I can tell you it wouldn't have made a difference. Friday night, her started leaking, Saturday morning (her birthday), she woke up to a full fledged ear infection in her OTHER ear. Not to mention, Saturday gave us Bad Catherine, which broke my heart because it was her birthday. I tried as hard as I could to diffuse every situation where Catherine would lose her shit, but at the end of the day, I was just as defeated, tired and sad as I had been the Sunday before.

The next day, I was spent. I was short-tempered, angry that we cannot figure out what is going on with Catherine, and waiting for the second that I could email our pediatrician the results. Sunday night, I did just that, but yesterday, I received an email that we should maybe think about seeing the developmental specialists at University of Iowa again and have I gotten her hearing tested by the ENT again?

ARE YOU FUCKING SERIOUS?

I wanted to explode. The whole day, I was in tears. WHY WAS NO ONE LISTENING TO ME?

This was a girl who had very obviously improved while on antibiotics, but clearly, the antibiotics were not strong enough to help her all the way through. This was a roller coaster ride that I wanted to get the fuck off of!!!!!

I sat on that email and wrote and re-wrote what I wanted to say over and over again. In all of it, between the lines, I wrote I AM BREAKING. I can feel it. It was like the 50-year old ash tree that fell on our house. I could feel myself splitting into two parts. The defeated part, which I let take hold for about 12 hours, and the pissed off part. Again, WHY WAS NO ONE LISTENING TO ME?

Today, I sat down and wrote this:

I have written this email about nine million times, so bear with me. In the end, if you would like us to seek out a new pediatrician, then I guess that's that. 

No the ENT hasn't checked her hearing because every time we go back, her ears are full of nastiness. When he can see anything, he does say there is fluid behind her ear drums. This is also the same guy who prescribed her amoxicillin when it clearly says on her chart that she is allergic to it. But at least he said strep in her ear was "unusual." 

I may be taking your comment wrong, but I don't believe Catherine's behavior is developmental. And forgive me, but I don't know what a developmental person would do for us. The last one suggested therapies for us, and suggested we have her tonsils removed. The ENT disagreed with that as well. To give you an idea, Catherine scored an 89 on her academic portion of the AEA evaluation. 90 is considered in the range of "normal." So yes, Catherine is delayed, but she is only on the lower side of her same-age peers. The reason she is started a special preschool is because 1) AEA suggested since she was at an 89, it would help at least catch her up and 2) since she is SO social, a special preschool will help. So we pushed for it, AEA reevaluated her, and again, she scored an 80. So into special preschool we go. 

I have spent much of this past year in tears, angry, frustrated and relieved when SOMETHING seems to be going well. Like taking her off Zyrtec and taking dyes out of her diet. But then we go right back to where we were. I am humble enough to know I am no doctor, but smart enough to know my own daughter. I don't have my blinders on, and I don't have the wool pulled over my eyes. So here are my thoughts: 

We are dealing with two different periods of time; 0-18 months and 18-months on, as 18 months is when her behaviors and the ear infections started. I think it all has to do with her ear infections, although several people have told me that's not possible. I was right about James' egg allergy, I was right about Catherine's milk allergy, I feel like I am right about this. 

If she is too young for PANDAS or whatever, maybe she is the youngest to ever be diagnosed with it. If she is too young for early-onset ADHD or OCD, maybe she will be the youngest person to ever have these things (even though I really don't think that's it). But why aren't we testing for it? I am tired of doing this on my own. She has a yeast infection that will not go away, dilated pupils, aggression, tics, obsession, screams for hours in the middle of the night (no, they aren't night terrors), and has left enough marks on Drew to cause scarring. We have been doing this for a year and a half. She has been a difficult child, like you said on Monday, but I don't think that this is just the way she is. I can't accept that. You don't see what I see, and you don't deal with the things that we have dealt with nearly every day. We are on a roller coaster and I would like to get off of it. We would appreciate your help in that, if possible. 

Please read this document. Look at the pictures. Help us in a way that we need to be helped. https://docs.google.com/document/d/10HJKCD59-t7LBtujLRPFAxW9kaM7erXvGOC0L6msHDk/edit?usp=sharing

Thank you - Laura

If you are reading this, I really encourage you to read my monthly entries from 18 months on. As I reviewed it today, it's incredibly heart-breaking. As I reviewed it yesterday, I was shaking my head. I have said from the beginning that this was something to do with her ears. Then I stopped because I had an ENT berate me while breastfeeding my newborn as I consulted with him about Catherine's balance, and her lack of speech and her glossy eyes and runny nose. It was like he was telling me I was crazy. And who was I? Just a post-partum mom, 50 pounds overweight and at that moment, absolutely hating everyone in the medical profession. I consulted with a second ENT four months later, who also told me I was crazy, it was NOT her ears, they looked fine and she could hear just fine. Rejected. Again. I went back to my pediatrician. No help. Even after the tubes, I had the ENT tell me that tubes don't always help with ear infections. Ummm, have you seen the shit that comes out of her ears? Did you know that you don't even have to have an appointment to get ear drops from the ENT? You just call and say that her ear is draining. I can't tell you how many times, before taking Zyrtec and dyes out that I called and said her is was draining, even when it wasn't, because it seemed like she was just so much better because she was on antibiotics. If you read the document, you will see that I wrote that somewhere in the many pages of documentation.

So I posted on my moms facebook group on Monday and asked for recommendations for a new pediatrician. Because clearly, I wasn't getting answers with the shitty team I have now.

In all of that, between my two grad classes that I am taking (at three credits each... oy...), between wrapping up the end of the school year, and between taking care of two other children (but not my house... you should see my house...), I wrote that email. Then I looked up PANDAS. Like I said to my pediatrician, I am not necessarily looking to find what "IT" is that is causing Catherine to behave this way, I just want people to start ruling things OUT.

Looking at PANDAS, I was pretty skeptical. Only diagnosed in children usually aged 3-12. The biggest symptoms are:

1) Agression (Catherine)
2) OCD tendencies (Catherine)
3) Emotional lability (Catherine)
4) Periods of "good" and "bad" (Catherine)
5)  Tics (Catherine's hm-ing)

But yet, this is where Catherine can fit a lot of categories. Like I said in the email, if she has early-onset OCD (like, REALLY early), let's get it figured out. What's really interesting about PANDAS is that it is an acronym for (are you ready?):

Pediatric Acute-onset Neuropsychiatric Disorder ASSOCIATED WITH STREP.

Weird, Catherine just so happened to have Group A Strep draining out of her ear. FOR A YEAR AND A HALF.

Since then, like my typical nature, in between all the other shit I have to do in life, I have googled the SHIT out of PANDAS. Apparently, it is new, rare (just our luck), and hard to diagnose. It's also hard to take care of. Once the onset happens, if it is not taken care of quickly, the symptoms can become permanent. Awesome.

And even greater kicker was that somewhere, I read that any medicines that cross the central nervous system can exacerbate symptoms. LIKE ZYRTEC. So now I was actually paying attention.

So here we are, going back to the ears. Like I wanted to in the first place.

After my scathing email to my pediatrician (because no one can talk to their pediatrician on the phone anymore), she emailed me back apologizing. In her first email, and in our initial appointment last week, she said that we could look into PANDAS but she was "pretty young." I am guessing that maybe Catherine is the youngest patient on the face of the planet that may have it? Who knows.

Either way, I am writing this blog post before I email her back. We are still keeping the appointment with the new pediatrician. I am still angry about it. I am still mad at everyone who have said things to me like, "if she had a milk allergy, she would have a rash" or "it's not her ears. Her ears aren't the problem" or "take her out of daycare." I don't know what will happen next. Oddly enough, someone that I work with, that I eat lunch with every day, just had her son diagnosed with PANDAS. But hers was a different story. He was getting into a ton of trouble at school, so she was referred to a psychologist, and from there, the psychologist referred her to an immunologist, and from there, he diagnosed it. She had never even heard of it. What would be the odds that I would know someone whose son was diagnosed? What would be the odds that we might finally be on the brink of what is going on with Catherine?

Until then, we will see what happens on Thursday with our new pediatrician. We will see what happens this week with our old pediatrician. We have Catherine on yet another dose of nasty anti-biotics, so we will see what that brings. Guaranteed, it's a new little girl with a better lease on life. But only for a little while.

Onward...

This is Catherine on a "bad' day. She insisted her blanket be on her chair while eating. This is right after breakfast, after a full night of sleep (miraculously) and this was about the only peaceful moment we had that day. This is one of Catherine's tell-tale signs that it's going to be a bad day. She looks stoned. Not like a pothead, but like a crack-cocaine addict. This is the look of a little girl who is not healthy. This is the look of a little girl who needs help. Why can no one see that???