As I write this, I am drinking a glass of wine. Well-deserved, I would say.
I cried in front of my daycare provider today. I felt pretty stupid. I am starting to very slooooowly rally, but it still sucks. When we have great nights, followed by awful mornings, it makes me wonder how long I can survive this roller coaster. I mean, I can't hardly stand to leave the ground. I have to mentally talk myself out of a panic attack when we hit turbulence on an airplane. I lose my shit on th Tilt-a-Whirl, for God's sake.
I called our PANDAS doctor yesterday, about Catherine ear infection. Or the ear infection that is just beginning. They called me back about 3:00 and pretty much said: YAY the penicillin will work for Catherine and SORRY, the tics worsening is just part of the disease and OH NO, she has another ear infection? Call the ENT.
I called the ENT, but since he's new and I don't know what I am doing, I got the voice message system "too late." So if you call after 3:00, you cannot leave a message. You have to call back the next day. Umm, seriously?
So, I call this morning. Again, only about a possible ear infection. The nurse tells me the ENT doctor is OUT OF THE COUNTRY right now, and won't be back for a couple of weeks. So I should call my primary care physician. Are you fucking serious?
So three phone calls, and two days later, I have NO CALL BACK. No wonder people skip the doctor and go right to Urgent Care, which I may just do tomorrow.
Otherwise, I had a really great phone conversation with a now-friend of mine. I say now-friend, because before, she was my bosses wife. And now, this shitty disease has united us. We are meeting for dinner on Thursday night, with another PANDAS mom. Side note: doesn't "PANDAS mom" sound so cute? It's not.
From here, I am learning all sorts of new things. Herxing, and blood-brain barrier, and Bartonella, and mycoplasma, and co-infections. It's loads of fun. Hence, the glass of wine.
My now-friend told me the other night that she has pretty much had to piecemeal everything together.
There are doctors who have never heard of it. Don't go to them.
There are doctors who have heard of it. Don't go to them either.
There are doctors who have heard of it, and have patients with it, but they have been referred elsewhere, so don't go to them.
There are doctors who have heard of it, seen it, and try to treat it with ONE remedy. ONE. Which usually doesn't work. Don't go to them either.
There are doctors who have heard of it, seen it, have tried to treat it a couple of different ways, and keep searching for answers. Try to see them.
There are doctors who have heard of it, seen it, tried to treat it several ways, and are now on one of two boards in the country as leading "PANDAS" researchers and doctors. If you go to them, they will use you as an experiment and ask you to document behaviors nine million times a day. I am sure my day care provider would LOVE that. My checkbook would also LOVE a trip to a doctor that is out-of-network. Or better yet, not covered.
There is a doctor in Missouri who is one of the leading researchers in the Nation regarding PANDAS, who IS in-network. His wait-list, as I found out when I called, is THREE MONTHS OUT. Better yet, he's not accepting new patients. So I need a referral. FUCKING REFERRALS. My whole life with Catherine has been a referral. Do this, do that, try this, try that, she's too young, it's not her ears. BLAH BLAH BLAH.
I called the naturopathic doctor back on Monday, who I was impressed with when she called last Tuesday. Eric and I decided that we would try it. Who knows? Maybe it will work? I know they do a ton more testing than regular doctors, which seems really backwards to me. $400 for two appointments. Not terrible. We will fork it out. I don't want to think what it will be for the testing, but this is also my baby girl. She's a little more important than cash.
I have joined what feels like a thousand PANDAS groups. It seems rash, but when there is hardly anything out in the medical field about this relatively new disease, I want to know what other moms are experiencing. I want to know what other mothers are facing. Of course, none of them have positive, feel-good stories. All of them have, "This med stopped working - what now?" stories. It's heartbreaking, but it's good to face reality as well. This is what we have to look forward to. As one doctor put it, there is no cure, only management.
So we will manage the shit out of this. I will rally, once I get my shit together (any day now, would be nice). I will be the voice for Catherine because she hasn't had one. I will love her unconditionally, and fight for her twice as hard.
Catherine has a picture that I painted above her bed that says, "Decide what to be, and go be it." So i will be the best damn mother I can be for Catherine. THE BEST. Good thing I was born with horns and a tiara.
Tuesday, June 27, 2017
Monday, June 19, 2017
Oh, My Heart
My heart is hurting, friends.
Tonight, Catherine had a tic so bad, that lasted so long, she spilled her plate of food, which contained ketchup, all over herself.
She was distraught afterward. Since I have been google researching the shit out of this disease, I have learned a ton. And all of a sudden, Catherine makes sense.
Before, we had used the canned terms brat, possessed, and out-of-control. Now, I use the term PANDAS.
It's a fine line to walk. She's three. She also exhibits typical threenager behaviors. But on the other hand, she has something else that is attacking her brain, causing her to act differently at the drop of a hat. If you think about it, antibodies are constantly moving. So from day-to-day, Catherine can exhibit different behaviors. I made a video today, for a Facebook page I am making to hopefully help others that are deep into this hell like we are, and I just hit record and talked. For 45 minutes. I didn't really have anything planned, I just started at the beginning. For 45 minutes, I talked, and at one point, I equated what was happening to our family to emotional abuse. The abuser will say horrible things, and then the next minute, tell you they love you and they don't want you to go. It is a constant up and down. This is life with Catherine.
Today, Catherine's tic was so horrifying to watch, my heart physically hurt. I had to get up from the dinner table and compose myself in the bathroom.
I am a classified pity-partier for about 24 hours. If something terrible happens, I allow myself to be upset about it, but after that 24 hours, I rally. And I usually rally hard. I think Catherine's story is proof of that. Every frustrating doctors appointment, I would feel terrible that no one seemed to be helping us. But then I would rally. Maybe it's this, or maybe it's that. I never imagined it would actually be something like THIS. I never imagined that THAT would be the cause of all of our emotional and physical turmoil. As parents. As a family. And especially, for Catherine.
But I have not rallied. As each day goes on and I notice symptoms of this disease that I had not noticed before, or had thought of as "weird," I now know it is not Catherine's fault. That's what makes this difficult.
One of the symptoms is "emotional lability." I know what those words mean, but I could not for the life of me, understand what that would look like. I finally saw it today. She was walking her stroller around the cul-de-sac, happy as a lark, and the next second, she was demanding that I pick her up and carry her inside. We were 20 feet from our front door. She kept crying, "puppy, cold" meaning she wanted her puppy and her blanket. I told her to walk inside and get it. It was like she couldn't bring herself to go inside. She threw a massive temper tantrum and from there, I picked her up and walked her inside. I couldn't help it. This is my little girl.
Once situated on the couch, she calmed down and BOOM, it was like someone threw the switch and she was happy as a lark again.
Another symptom is severe anxiety, including separation anxiety. She is obsessed with where I am all the time. She throws tantrums like none other when I have to go out to my car to get something. If I am in the other room, she needs to know I am there and will physically check on me. If she wants me to sit on the couch with her, and I don't, she goes into hysterics. Again, it's like that emotional abuser component of it. I need my time too. I need a place to go where it's quiet, away from the kids every once in awhile. But every second that I am home and Catherine is there, she is with me every step of the way.
Another symptom is the tics. Think: Tourette's syndrome. The hitting, swearing, head twisting kind. This is Catherine. Tonight, she shook her head back and forth, looked down and to the right while opening her mouth wide, then gave a facial grimace, and then shook her shoulders up and down. This caused her to spill her plate. It was maybe 4 seconds long, but as I watched it happen while everyone else was playing in the yard, I was shocked. This was happening right before my eyes and there is nothing I can do about it.
Since our diagnosis, I have talked to a few friends. "What I read about it, penicillin cures it, doesn't it?"
No. Penicillin is a bandaid. It lessens the effects because it does the work for the antibodies. So the antibodies chill out a little bit. This also causes them to die off, bringing her strep titres down. What is going on with Catherine is an immune overreaction to illness. Penicillin does not help the immune system. It helps stave off what the immune system reacts to. But that is not a guaranteed. It is not a for-sure thing that will cure Catherine.
I have watched countless websites, read countless articles, and have slept a total of 4-5 hours a night, because I am up so late researching and searching for other parents out there. I have connected with parents from California, New York and even right here in Des Moines. With the parents in Des Moines, it seems the only doctor who acknowledges it and treats it, treats it with penicillin. And behavior therapy. And a psychiatrist who dopes up their kids. I don't want Catherine on Ativan, or anti-psychotics, or mood suppressants. I want her to be a little girl.
I am at war with myself. On one hand, what if Penicillin is the trick? What if that really helps Catherine? But what if it doesn't? Then it's another year on pencillin. And then it doesn't clear up again? Another year. But modern medicine isn't always that great. It can wreak havoc on your body, and from the parents who had their kids on long-term penicillin, it messed with their white blood cell count so terribly, their children actually got more sick. MORE SICK. One parent I connected with said they are on year 5, with not a lot of hope in sight. Each time her kid gets sick, the symptoms come back even worse than the time before. And each time, they treat with antibiotics, and her kid gets "better." But not actually "better," just an improved version. Not a healed version.
I connected with another mom in New York, whose son went undiagnosed for EIGHT YEARS. Eight! She said she had exhausted all her resources, had gone to every pediatrician, and no one had diagnosed it. Finally, she and her husband went completely off the wire and contacted a homeopath. In the first appointment, the homeopath diagnosed her son. In the second, she created a timeline of events. In the third, she prescribed Bella Donna. If you're familiar with it, it can kill you. Read: it's poisonous to the point of simply stopping your heart. He takes one dose once every four weeks. She said the other day she finally "met" her son for the first time. And he is sweet and charming and has a sense of humor. And he SMILES! She said life is so much better after the diagnosis 10 weeks ago, she could scream it from the mountain tops. I only hope I can do the same for Catherine.
So I researched Naturopathy and Homeopathy, and looked into what insurance covers.
NOTHING. Insurance covers nothing. This would be all out of pocket.
Thank God for savings, right?
So do we want to chance the penicillin, which is a $10 co-pay for each visit and prescription refill? But it might not even work? Or do we want to seek out a Naturopathic doctor and shell out thousands of dollars for something that we aren't even really sure about?
The more I think about it, the more I don't want Catherine on medications. She has been on meds for several years, just as simple as basic antibiotics and Miralax. But at the same time, what if it doesn't work? We will have put that into her body for nothing?
I am frustrated. I am exasperated. I am really, really, REALLY sad. This is my kid. You only want the best for your kid. You only want your kid to have a normal life. You only want your kid to have a bright future. Right now, that is not looking good for Catherine. Remember, each time they get sick again, the symptoms come back two-fold. But your'e thinking, "It's P for pediatric right?" Wrong. It's P for Pediatric, because no one has really studied it past the age of 14.
So think of where we will be in a couple of years? A decade? Catherine will be thirteen and in middle school. And middle school sucks for girls. SUCKS. I can't imagine having a facial grimace tic and a strange humming tic in middle school, let alone trying to find your place in the world.
My heart hurts, friends. It hurts for my little girl, who I, too, have never really met. It hurts for my family, and especially James, who doesn't understand why Catherine flies off the handle. It hurts for Drew, who loves playing with her, but is shocked when she hauls off an hits him. It hurts for me, for trying to navigate this crazy disease. It hurts for Eric, who is trying to keep us all together.
It hurts. I hurt. I love my daughter, and James and Drew, more than life itself. I cannot imagine life without them. But I can't imagine life with this disease. When we go to the doctor, we are ill. We get a prescription, we take it, we get better. That's not the case here. This isn't fatal. It won't kill her. But she might not come back from this. I may never actually know who she is.
I am humble enough to say I am no doctor, but I am also smart enough to know that this is not going to be easy. When we got a diagnosis, I thought, "YES! THIS IS IT!" And then I began researching. And I began to hear horror stories. The doctors tell me to stay off the internet. This doctor? He told me to research everything I could. He said it is not a well-known disease, and symptoms manifest themselves in dozens of ways. So, research I did. Maybe because he didn't want to tell me this is not going to be a good thing for our family?
This disease causes anorexia, homicidal thoughts, suicidal thoughts, hallucinations, tics, ADHD symptoms, OCD symptoms, ODD symptoms. This disease robs me of my baby girl.
Maybe I will go live with my Facebook page, maybe I won't. I started it as an outlet, much like this one. But I don't want to share this blog with many. I would rather keep it close to my heart. Because like anyone who is vulnerable, I don't want to share this. I want to share the help I am seeking for my little girl, in order to help someone else. I want to document all the things on Facebook in a much easier way than a fricken google document. I want someone to trip over my page and say, "YES, THIS IS MY KID TOO!" Catherine is at the very, VERY beginning of the "age of onset" in the eyes of doctors. But I firmly believe it started with the ear infections when she was 18 months. I wonder how many others, most likely with an autistic diagnosis, are actually PANDAS kids? On my Facebook page, it's told through her eyes. Her eyes told the story of a very sick little girl. The eyes started when she was 18 months old. They are glossy with dilated pupils. Add in the constant moving and tics, she looks like a tweaker. And it all started, overnight, with her eyes.
I am scared. I am tired. I am beaten. I am worn.
Pray for us, friends. Pray for us.
Tonight, Catherine had a tic so bad, that lasted so long, she spilled her plate of food, which contained ketchup, all over herself.
She was distraught afterward. Since I have been google researching the shit out of this disease, I have learned a ton. And all of a sudden, Catherine makes sense.
Before, we had used the canned terms brat, possessed, and out-of-control. Now, I use the term PANDAS.
It's a fine line to walk. She's three. She also exhibits typical threenager behaviors. But on the other hand, she has something else that is attacking her brain, causing her to act differently at the drop of a hat. If you think about it, antibodies are constantly moving. So from day-to-day, Catherine can exhibit different behaviors. I made a video today, for a Facebook page I am making to hopefully help others that are deep into this hell like we are, and I just hit record and talked. For 45 minutes. I didn't really have anything planned, I just started at the beginning. For 45 minutes, I talked, and at one point, I equated what was happening to our family to emotional abuse. The abuser will say horrible things, and then the next minute, tell you they love you and they don't want you to go. It is a constant up and down. This is life with Catherine.
Today, Catherine's tic was so horrifying to watch, my heart physically hurt. I had to get up from the dinner table and compose myself in the bathroom.
I am a classified pity-partier for about 24 hours. If something terrible happens, I allow myself to be upset about it, but after that 24 hours, I rally. And I usually rally hard. I think Catherine's story is proof of that. Every frustrating doctors appointment, I would feel terrible that no one seemed to be helping us. But then I would rally. Maybe it's this, or maybe it's that. I never imagined it would actually be something like THIS. I never imagined that THAT would be the cause of all of our emotional and physical turmoil. As parents. As a family. And especially, for Catherine.
But I have not rallied. As each day goes on and I notice symptoms of this disease that I had not noticed before, or had thought of as "weird," I now know it is not Catherine's fault. That's what makes this difficult.
One of the symptoms is "emotional lability." I know what those words mean, but I could not for the life of me, understand what that would look like. I finally saw it today. She was walking her stroller around the cul-de-sac, happy as a lark, and the next second, she was demanding that I pick her up and carry her inside. We were 20 feet from our front door. She kept crying, "puppy, cold" meaning she wanted her puppy and her blanket. I told her to walk inside and get it. It was like she couldn't bring herself to go inside. She threw a massive temper tantrum and from there, I picked her up and walked her inside. I couldn't help it. This is my little girl.
Once situated on the couch, she calmed down and BOOM, it was like someone threw the switch and she was happy as a lark again.
Another symptom is severe anxiety, including separation anxiety. She is obsessed with where I am all the time. She throws tantrums like none other when I have to go out to my car to get something. If I am in the other room, she needs to know I am there and will physically check on me. If she wants me to sit on the couch with her, and I don't, she goes into hysterics. Again, it's like that emotional abuser component of it. I need my time too. I need a place to go where it's quiet, away from the kids every once in awhile. But every second that I am home and Catherine is there, she is with me every step of the way.
Another symptom is the tics. Think: Tourette's syndrome. The hitting, swearing, head twisting kind. This is Catherine. Tonight, she shook her head back and forth, looked down and to the right while opening her mouth wide, then gave a facial grimace, and then shook her shoulders up and down. This caused her to spill her plate. It was maybe 4 seconds long, but as I watched it happen while everyone else was playing in the yard, I was shocked. This was happening right before my eyes and there is nothing I can do about it.
Since our diagnosis, I have talked to a few friends. "What I read about it, penicillin cures it, doesn't it?"
No. Penicillin is a bandaid. It lessens the effects because it does the work for the antibodies. So the antibodies chill out a little bit. This also causes them to die off, bringing her strep titres down. What is going on with Catherine is an immune overreaction to illness. Penicillin does not help the immune system. It helps stave off what the immune system reacts to. But that is not a guaranteed. It is not a for-sure thing that will cure Catherine.
I have watched countless websites, read countless articles, and have slept a total of 4-5 hours a night, because I am up so late researching and searching for other parents out there. I have connected with parents from California, New York and even right here in Des Moines. With the parents in Des Moines, it seems the only doctor who acknowledges it and treats it, treats it with penicillin. And behavior therapy. And a psychiatrist who dopes up their kids. I don't want Catherine on Ativan, or anti-psychotics, or mood suppressants. I want her to be a little girl.
I am at war with myself. On one hand, what if Penicillin is the trick? What if that really helps Catherine? But what if it doesn't? Then it's another year on pencillin. And then it doesn't clear up again? Another year. But modern medicine isn't always that great. It can wreak havoc on your body, and from the parents who had their kids on long-term penicillin, it messed with their white blood cell count so terribly, their children actually got more sick. MORE SICK. One parent I connected with said they are on year 5, with not a lot of hope in sight. Each time her kid gets sick, the symptoms come back even worse than the time before. And each time, they treat with antibiotics, and her kid gets "better." But not actually "better," just an improved version. Not a healed version.
I connected with another mom in New York, whose son went undiagnosed for EIGHT YEARS. Eight! She said she had exhausted all her resources, had gone to every pediatrician, and no one had diagnosed it. Finally, she and her husband went completely off the wire and contacted a homeopath. In the first appointment, the homeopath diagnosed her son. In the second, she created a timeline of events. In the third, she prescribed Bella Donna. If you're familiar with it, it can kill you. Read: it's poisonous to the point of simply stopping your heart. He takes one dose once every four weeks. She said the other day she finally "met" her son for the first time. And he is sweet and charming and has a sense of humor. And he SMILES! She said life is so much better after the diagnosis 10 weeks ago, she could scream it from the mountain tops. I only hope I can do the same for Catherine.
So I researched Naturopathy and Homeopathy, and looked into what insurance covers.
NOTHING. Insurance covers nothing. This would be all out of pocket.
Thank God for savings, right?
So do we want to chance the penicillin, which is a $10 co-pay for each visit and prescription refill? But it might not even work? Or do we want to seek out a Naturopathic doctor and shell out thousands of dollars for something that we aren't even really sure about?
The more I think about it, the more I don't want Catherine on medications. She has been on meds for several years, just as simple as basic antibiotics and Miralax. But at the same time, what if it doesn't work? We will have put that into her body for nothing?
I am frustrated. I am exasperated. I am really, really, REALLY sad. This is my kid. You only want the best for your kid. You only want your kid to have a normal life. You only want your kid to have a bright future. Right now, that is not looking good for Catherine. Remember, each time they get sick again, the symptoms come back two-fold. But your'e thinking, "It's P for pediatric right?" Wrong. It's P for Pediatric, because no one has really studied it past the age of 14.
So think of where we will be in a couple of years? A decade? Catherine will be thirteen and in middle school. And middle school sucks for girls. SUCKS. I can't imagine having a facial grimace tic and a strange humming tic in middle school, let alone trying to find your place in the world.
My heart hurts, friends. It hurts for my little girl, who I, too, have never really met. It hurts for my family, and especially James, who doesn't understand why Catherine flies off the handle. It hurts for Drew, who loves playing with her, but is shocked when she hauls off an hits him. It hurts for me, for trying to navigate this crazy disease. It hurts for Eric, who is trying to keep us all together.
It hurts. I hurt. I love my daughter, and James and Drew, more than life itself. I cannot imagine life without them. But I can't imagine life with this disease. When we go to the doctor, we are ill. We get a prescription, we take it, we get better. That's not the case here. This isn't fatal. It won't kill her. But she might not come back from this. I may never actually know who she is.
I am humble enough to say I am no doctor, but I am also smart enough to know that this is not going to be easy. When we got a diagnosis, I thought, "YES! THIS IS IT!" And then I began researching. And I began to hear horror stories. The doctors tell me to stay off the internet. This doctor? He told me to research everything I could. He said it is not a well-known disease, and symptoms manifest themselves in dozens of ways. So, research I did. Maybe because he didn't want to tell me this is not going to be a good thing for our family?
This disease causes anorexia, homicidal thoughts, suicidal thoughts, hallucinations, tics, ADHD symptoms, OCD symptoms, ODD symptoms. This disease robs me of my baby girl.
Maybe I will go live with my Facebook page, maybe I won't. I started it as an outlet, much like this one. But I don't want to share this blog with many. I would rather keep it close to my heart. Because like anyone who is vulnerable, I don't want to share this. I want to share the help I am seeking for my little girl, in order to help someone else. I want to document all the things on Facebook in a much easier way than a fricken google document. I want someone to trip over my page and say, "YES, THIS IS MY KID TOO!" Catherine is at the very, VERY beginning of the "age of onset" in the eyes of doctors. But I firmly believe it started with the ear infections when she was 18 months. I wonder how many others, most likely with an autistic diagnosis, are actually PANDAS kids? On my Facebook page, it's told through her eyes. Her eyes told the story of a very sick little girl. The eyes started when she was 18 months old. They are glossy with dilated pupils. Add in the constant moving and tics, she looks like a tweaker. And it all started, overnight, with her eyes.
I am scared. I am tired. I am beaten. I am worn.
Pray for us, friends. Pray for us.
Tuesday, June 13, 2017
P.A.N.D.A.S.
We had our appointment at the Pediatric Diagnostic Clinic. But first, a preface:
At our last pediatric appointment, with our NEW pediatrician, I got a call saying that Catherine's strep titres were the highest they had ever seen at their clinic. Strep titres are essentially the antibodies our bodies produce to get rid of, yep, you guessed it, Group A Strep and subsequent strep infections (I guess they go all the way up to H?). That didn't really surprise me since Catherine had had Group A Strep a couple of weeks before having the test. However, it did surprise me that it was "so high" after two weeks of antibiotics (with three ear infections on those antibiotics).
Then came last Thursday, when Catherine had her 3 year Well Child Check. I explained to our old pediatrician (who I think we will stay with for the time being - she DOES know our family really well and finally seems to be listening) that Catherine had been doing so well since her dose of antibiotics. I was very excited about it but 1) I was discouraged as that would mean the Pediatric Diagnostic Clinic would not see Catherine at her worst (I spoke WAY too soon on that one), and 2) I was simply waiting for the next shoe to drop. Meaning, I knew it wasn't going to last long (called that one).
No sooner than the next day did Catherine start to plunge back into the hell that is whatever it is that is plaguing her. Frequent outbursts, inconsolable temper tantrums, very aggressive, separation anxiety and frequent "humming" which we now know are her tics.
Saturday and Sunday were nightmares. Monday came and guiltily, I dropped Catherine off at daycare and enjoyed my day, sans nightmare. James and I hung out, and I anxiously gathered things in preparation for today's appointment.
It's embarrassing to say, but I nearly cried through Catherine's entire appointment. However, I have to say that the staff at Blank Children's Hospital is awesome, and they made me feel like a normal, concerned mom, rather than a crazy person with a possible diagnosis of Munchausen Syndrome by Proxy.
Essentially, I sent Catherine's running google doc to the doctor for him to look it over before I got there. I knew I was going to be a mess, and I knew that in that anxiety-fueled mess I would forget things. So I sent it to them. The biggest thing that stuck out to me: ALL of them read it. The nurse read it, the Resident read it, Dr. Elliot read it. BEFORE I got there. And then they wrote down all the questions they had for me, which made the appointment much shorter than I thought it was going to be.
Catherine was none-too-thrilled to be there, and when we got there, she immediately registered a fever. WHAT? Then I laughed. I had even said to a friend the other night that I bet within the week Catherine had an ear infection. For her to have a fever, I was almost right on the money, although it showed up a few days earlier than my prediction. Nevertheless, I was right. Because I know my daughter.
So we were whisked away to a waiting room where they brought her toys and just like that, she started lining them up. Not playing with them, but lining them up. Certain toys had to go certain places. When I picked up a My Little Pony to play with her, she threw a fit. Score one for mom - the doctor was going to be able to see Catherine nearly at her worst. In looking in her ears, she nearly kicked herself out of my arms. This wasn't a kid who didn't want to be there. This was an uncontrollable, instinctual urge to throw herself out of my arms. She nearly succeeded. Looking in her ears does not hurt, and she knows that. But she fought it with everything she had.
Dr. Elliot, the resident (I cannot remember his name for the life of me), and Nurse Anne were so patient with her. The gist of all of it was that Catherine does indeed, have PANDAS (Pediatric Acute-Onset Neuropsychiatric Disease Associated with Strep). Essentially, it's an autoimmune disorder where Catherine's immune system overreacts to every illness. Mostly, strep. So her body builds a ton of antibodies to ward off the infection. Unfortunately, strep is a molecular mimicry bacteria, and for whatever reason, these antibodies will start attacking the brain. Mainly, the basal ganglia, which is responsible for behaviors. What strikes me is that chemicals that cross the central nervous system, can exacerbate symptoms. Cue Zyrtec. And food dyes.
Most of the behaviors manifest themselves as severe ADHD, OCD, ODD (oppositional defiance disorder) and children will have "tics." Not to mention the anxiety that goes along with all of that, particularly separation anxiety. The awesome thing (read: shitty) about all of this is that the tics can be so different from one kid to the next. But Catherine's is humming. The worse she is, the more humming she does and the less speech she has. ADHD and OCD have such wide-ranging criteria that it's hard to figure out that when Catherine lines her toys up, or when she has her baby JUST SO in her stroller, that is OCD. ADHD is her fidgeting. All. The. Time. We call it rapid toddler adjusting. She just cannot sit still. I think the reason she loves to dance is because it allows her to get her wiggles out. This also manifests itself as jerky movements. Cue Catherine's dancing again. Emotional lability (think schizophrenic) with a tendency to have wide-arching emotions (Catherine to a T), is even more of a tell-tale sign of PANDAS. But all of these symptoms HAVE to include the elevated strep titres. Not to mention, all of these go away when on antibiotics. Cue Catherine's antibiotic diagnostic test almost three weeks ago.
Combine these symptoms with elevated strep titres, plus observing the behavior over periods of time (thank GOD that I had the sense to start a google doc), and viola. PANDAS.
The even MORE awesome thing (read: shitty) is that with PANDAS, you're on a roller coaster and each dip in the tracks gets deeper and deeper. Meaning once the strep infection is gone, there are still antibodies left. Cue another strep infection, and you can have twice as many antibodies as you did before. Meaning worsened behaviors. This is exactly what we have seen in Catherine since she was 18 months old. It started out with good days and bad days. Then it was good weeks and bad weeks. I can now say we have survived bad months and more bad months, with usually a few days of good. These past two weeks that we have had that are GOOD have been a miracle in itself and make me actually believe we are on the right track.
The silver lining in all of this? No one has been diagnosed over the age of 14. Meaning it truly is a pediatric phenomenon. Will she grow out of it? Possibly. Will she always have an autoimmune disorder? Possibly. No one knows because this is so new.
Dr. Elliott said she was the youngest patient he has ever diagnosed, as well as the one with the highest strep titres he has ever seen. He said it is very clear that she has had several strep infections that have gone undiagnosed in her little life.
This is what made me cry in the car in the parking garage while Catherine watched Thomas the Train. There was no way I was going to try and drive out of there while losing my shit.
Part of me is thankful we have a diagnosis. Odds are, her ear infections have been strep infections all along. It just finally took this nasty, green goop coming out of her ear to see it.
The next steps? There are a lot of them. They will take up a large part of my summer.
Thursday, we have an appointment with Dr. Young, who is an ENT. He specializes in difficult cases like this, and works with Dr. Elliot in the removal of adenoids/tonsils to try and stem infections. We have an appointment for a Penicillin Immersion Allergy test in two weeks to see if Catherine really is allergic to amoxicillin, or if the rash she got the first time she took it (and the last time...) was an allergy, or a manifestation of the autoimmune disorder. That will be a three hour test where they give her medicine over a period of time and watch her reactions to it. Yes, we will be locked in a room for a period of time. God help me. And did I mention that if she does not test positive to the penicillin that this is what she will have to take, two times a day, for a YEAR in order to hopefully help her through this?
From there, we still have an appointment with the nutritionist, which Dr. Elliot was going to refer us to next, as it seems as though gut health is linked to strep infections as well. This might help alleviate her potential for getting strep, AGAIN, and hopefully curb some of the side effects of PANDAS.
Lastly, we have an appointment with a psychiatrist, who will help us deal with Catherine's rages. Meaning, she will give us tips and tricks to diffuse her, as well as help her and our family cope with her OCD, ADHD, ODD, and severe anxiety (particularly separation anxiety, like when I just go out to grab something out of my car for a SECOND, or when James falls asleep before she does, in which case she FREAKS OUT).
We will still have a geneticist test her, but appointments are a year out. Yes, A YEAR. But at least we have the referral. It will be nice to know what else is going on.
From there, I am reaching out. What are the odds that I have a co-worker, who I consider a good friend of mine, whose son was just diagnosed? So we can take this road together, which we started today with many texts back and forth. I posted on Des Moines Moms Facebook page, in hopes that I can reach out to others, and see what has worked for them.
I am googling the shit out of this syndrome, because I know it will always be an uphill battle. Meaning, I will always have to fight it. It's not widely recognized by the medical community, meaning insurance probably won't cover most of it. AWESOME. But I'm prepared to pay what I have to pay, and go to the ends of the earth for this little girl.
I am hoping that we will have many more good times, and fewer bad times, now that we have a path forward (kind of...).
As I have said before, I am going to be the best damn mom to this little girl that I can be. God gave her to me, I will take care of her.
At our last pediatric appointment, with our NEW pediatrician, I got a call saying that Catherine's strep titres were the highest they had ever seen at their clinic. Strep titres are essentially the antibodies our bodies produce to get rid of, yep, you guessed it, Group A Strep and subsequent strep infections (I guess they go all the way up to H?). That didn't really surprise me since Catherine had had Group A Strep a couple of weeks before having the test. However, it did surprise me that it was "so high" after two weeks of antibiotics (with three ear infections on those antibiotics).
Then came last Thursday, when Catherine had her 3 year Well Child Check. I explained to our old pediatrician (who I think we will stay with for the time being - she DOES know our family really well and finally seems to be listening) that Catherine had been doing so well since her dose of antibiotics. I was very excited about it but 1) I was discouraged as that would mean the Pediatric Diagnostic Clinic would not see Catherine at her worst (I spoke WAY too soon on that one), and 2) I was simply waiting for the next shoe to drop. Meaning, I knew it wasn't going to last long (called that one).
No sooner than the next day did Catherine start to plunge back into the hell that is whatever it is that is plaguing her. Frequent outbursts, inconsolable temper tantrums, very aggressive, separation anxiety and frequent "humming" which we now know are her tics.
Saturday and Sunday were nightmares. Monday came and guiltily, I dropped Catherine off at daycare and enjoyed my day, sans nightmare. James and I hung out, and I anxiously gathered things in preparation for today's appointment.
It's embarrassing to say, but I nearly cried through Catherine's entire appointment. However, I have to say that the staff at Blank Children's Hospital is awesome, and they made me feel like a normal, concerned mom, rather than a crazy person with a possible diagnosis of Munchausen Syndrome by Proxy.
Essentially, I sent Catherine's running google doc to the doctor for him to look it over before I got there. I knew I was going to be a mess, and I knew that in that anxiety-fueled mess I would forget things. So I sent it to them. The biggest thing that stuck out to me: ALL of them read it. The nurse read it, the Resident read it, Dr. Elliot read it. BEFORE I got there. And then they wrote down all the questions they had for me, which made the appointment much shorter than I thought it was going to be.
Catherine was none-too-thrilled to be there, and when we got there, she immediately registered a fever. WHAT? Then I laughed. I had even said to a friend the other night that I bet within the week Catherine had an ear infection. For her to have a fever, I was almost right on the money, although it showed up a few days earlier than my prediction. Nevertheless, I was right. Because I know my daughter.
So we were whisked away to a waiting room where they brought her toys and just like that, she started lining them up. Not playing with them, but lining them up. Certain toys had to go certain places. When I picked up a My Little Pony to play with her, she threw a fit. Score one for mom - the doctor was going to be able to see Catherine nearly at her worst. In looking in her ears, she nearly kicked herself out of my arms. This wasn't a kid who didn't want to be there. This was an uncontrollable, instinctual urge to throw herself out of my arms. She nearly succeeded. Looking in her ears does not hurt, and she knows that. But she fought it with everything she had.
Dr. Elliot, the resident (I cannot remember his name for the life of me), and Nurse Anne were so patient with her. The gist of all of it was that Catherine does indeed, have PANDAS (Pediatric Acute-Onset Neuropsychiatric Disease Associated with Strep). Essentially, it's an autoimmune disorder where Catherine's immune system overreacts to every illness. Mostly, strep. So her body builds a ton of antibodies to ward off the infection. Unfortunately, strep is a molecular mimicry bacteria, and for whatever reason, these antibodies will start attacking the brain. Mainly, the basal ganglia, which is responsible for behaviors. What strikes me is that chemicals that cross the central nervous system, can exacerbate symptoms. Cue Zyrtec. And food dyes.
Most of the behaviors manifest themselves as severe ADHD, OCD, ODD (oppositional defiance disorder) and children will have "tics." Not to mention the anxiety that goes along with all of that, particularly separation anxiety. The awesome thing (read: shitty) about all of this is that the tics can be so different from one kid to the next. But Catherine's is humming. The worse she is, the more humming she does and the less speech she has. ADHD and OCD have such wide-ranging criteria that it's hard to figure out that when Catherine lines her toys up, or when she has her baby JUST SO in her stroller, that is OCD. ADHD is her fidgeting. All. The. Time. We call it rapid toddler adjusting. She just cannot sit still. I think the reason she loves to dance is because it allows her to get her wiggles out. This also manifests itself as jerky movements. Cue Catherine's dancing again. Emotional lability (think schizophrenic) with a tendency to have wide-arching emotions (Catherine to a T), is even more of a tell-tale sign of PANDAS. But all of these symptoms HAVE to include the elevated strep titres. Not to mention, all of these go away when on antibiotics. Cue Catherine's antibiotic diagnostic test almost three weeks ago.
Combine these symptoms with elevated strep titres, plus observing the behavior over periods of time (thank GOD that I had the sense to start a google doc), and viola. PANDAS.
The even MORE awesome thing (read: shitty) is that with PANDAS, you're on a roller coaster and each dip in the tracks gets deeper and deeper. Meaning once the strep infection is gone, there are still antibodies left. Cue another strep infection, and you can have twice as many antibodies as you did before. Meaning worsened behaviors. This is exactly what we have seen in Catherine since she was 18 months old. It started out with good days and bad days. Then it was good weeks and bad weeks. I can now say we have survived bad months and more bad months, with usually a few days of good. These past two weeks that we have had that are GOOD have been a miracle in itself and make me actually believe we are on the right track.
The silver lining in all of this? No one has been diagnosed over the age of 14. Meaning it truly is a pediatric phenomenon. Will she grow out of it? Possibly. Will she always have an autoimmune disorder? Possibly. No one knows because this is so new.
Dr. Elliott said she was the youngest patient he has ever diagnosed, as well as the one with the highest strep titres he has ever seen. He said it is very clear that she has had several strep infections that have gone undiagnosed in her little life.
This is what made me cry in the car in the parking garage while Catherine watched Thomas the Train. There was no way I was going to try and drive out of there while losing my shit.
Part of me is thankful we have a diagnosis. Odds are, her ear infections have been strep infections all along. It just finally took this nasty, green goop coming out of her ear to see it.
The next steps? There are a lot of them. They will take up a large part of my summer.
Thursday, we have an appointment with Dr. Young, who is an ENT. He specializes in difficult cases like this, and works with Dr. Elliot in the removal of adenoids/tonsils to try and stem infections. We have an appointment for a Penicillin Immersion Allergy test in two weeks to see if Catherine really is allergic to amoxicillin, or if the rash she got the first time she took it (and the last time...) was an allergy, or a manifestation of the autoimmune disorder. That will be a three hour test where they give her medicine over a period of time and watch her reactions to it. Yes, we will be locked in a room for a period of time. God help me. And did I mention that if she does not test positive to the penicillin that this is what she will have to take, two times a day, for a YEAR in order to hopefully help her through this?
From there, we still have an appointment with the nutritionist, which Dr. Elliot was going to refer us to next, as it seems as though gut health is linked to strep infections as well. This might help alleviate her potential for getting strep, AGAIN, and hopefully curb some of the side effects of PANDAS.
Lastly, we have an appointment with a psychiatrist, who will help us deal with Catherine's rages. Meaning, she will give us tips and tricks to diffuse her, as well as help her and our family cope with her OCD, ADHD, ODD, and severe anxiety (particularly separation anxiety, like when I just go out to grab something out of my car for a SECOND, or when James falls asleep before she does, in which case she FREAKS OUT).
We will still have a geneticist test her, but appointments are a year out. Yes, A YEAR. But at least we have the referral. It will be nice to know what else is going on.
From there, I am reaching out. What are the odds that I have a co-worker, who I consider a good friend of mine, whose son was just diagnosed? So we can take this road together, which we started today with many texts back and forth. I posted on Des Moines Moms Facebook page, in hopes that I can reach out to others, and see what has worked for them.
I am googling the shit out of this syndrome, because I know it will always be an uphill battle. Meaning, I will always have to fight it. It's not widely recognized by the medical community, meaning insurance probably won't cover most of it. AWESOME. But I'm prepared to pay what I have to pay, and go to the ends of the earth for this little girl.
I am hoping that we will have many more good times, and fewer bad times, now that we have a path forward (kind of...).
As I have said before, I am going to be the best damn mom to this little girl that I can be. God gave her to me, I will take care of her.
Tuesday, June 6, 2017
Battle of the Bulge: Part III, 16 Months Post-Partum
I was getting lost in my past blog posts and realized I have posted nothing on my weight-loss journey since... I don't really remember. Yes, I am, in fact, the lightest I have been since 2010 I believe, when I was going through the psycho stalker student situation and had recently lost my dad, so I existed on oreos and mountain dew (OMG, that's disgusting). But, what's interesting to me, is how I lost that much after having Drew.
I put on a lot of weight with Drew. A LOT. It was a combination of stress, being busy all the time, managing two small children, managing Catherine's shit, and having a husband who was barely home. Oh yes, and a bathroom remodel and kitchen remodel. Looking back, what the hell was I thinking? I was already heavier than I wanted to be when I found out I was pregnant, and from there, I ate my feelings. And I had a lot of feelings.
I think I gained somewhere between 50-55 pounds with Drew. The most I had with any of the kids, and therefore, the most I have ever lost. I remember going back to school and HATING the way I looked. I went out and bought new clothes (of which, I have since given away or donated to Goodwill). It was terrible. I felt jiggly, I wasn't comfortable in my own skin, and I hated that I didn't have time to exercise.
Fast-forward to September, when Drew was about 6 months, and I discovered that food dyes made Catherine a psycho. So we took those things out of our house. Now, NO ONE in my house eats anything with dye in it. Like all things, I started researching what is REALLY in our food.
Um, shit. Shit is in our food. Complete. Shit. It's disgusting. I had no idea that some of the ingredients for Mountain Dew also came from PETROL BASED PRODUCTS. Say, what? I was grossed out. So I switched to cappucino. Because, you know, that will really help the pounds melt off...
I did that for a few months, enjoyed the hell out of it because it tastes like a hot milkshake, and then really got on board. I cut all artificial sugars and caffeine out of my diet. Did I mention I did this a week before we went on our cruise? Kind of stupid, but I figured the week before spring break, I had nothing going on at school. No night commitments, no competitions, nothing. So I might as well.
When we left for our cruise, I was 162. Close to my pre-pregnancy weight. In all of this, Eric decided he was going to try and lose weight too, but without cutting the caffeine and sugars. Yet, he still had begun losing weight. I managed to avoid a ton of food and only gained four (FOUR!) pounds on the cruise. But after that, it melted off.
I didn't realize how much sugar and the crap that is put into our food helps keep the pounds on. I am now down to 155. Again, one of the lightest weights I have been in several years. Definitely before kids.
I have also realized how much people (like me) don't really need caffeine. I have always been a high energy person. Now, I am a high energy person without the caffeine. That isn't to say that I don't drink it. I will have a sip of Eric's pop if we go out to eat, or I will sneak the occasional cookie in the break room at work, or have a few M&M's if my co-worker has some at lunch. But for the majority of my diet, I have simply cut out crappy food and caffeine. What a difference it has made. I don't feel tired in the mornings, like I used to. I still feel tired, but I wake up to that fully awake state within 10 minutes. I do lag in the afternoons, but then I just eat something and it helps immensely. I sleep so much better! It's crazy that me, the girl who drank a Surge and ate Toaster Strudels before school every morning in high school, and existed on Oreos and Mountain Dew during my teaching career has taken all of that out of my diet. But it's been awesome.
The bottom line is that I have done it for Catherine. If I am able to do it, I can keep it out of my house, and she will never know the difference. She won't be asking for a sip of pop, or wondering what I'm drinking in the mornings. I have noticed a huge difference in my other two as well. They sleep longer, fall asleep faster, and overall are very well behaved, sans the typical 1.5/5 year old stuff. Our bedtime routine (cue knocking on wood, please) lasts 30 minutes, from the time we head upstairs to the time the kids fall asleep. FALL ASLEEP. And they stay asleep. It's awesome. Although, now watch them wake up four times tonight for some reason.
In all, it's been an interesting experience as I didn't think it would do much for me. I figured I would always perpetually be a little heavier after kids. Needless to say, I am happy to see that is not the case. I am glad I did this for ME, and I am glad Eric is with me on this journey. Eric has lost a total of 25 pounds already. TWENTY-FIVE! And this is from a guy who is pretty built as he lifts heavy things all day. I have lost ten. In three months.
Go us.
I put on a lot of weight with Drew. A LOT. It was a combination of stress, being busy all the time, managing two small children, managing Catherine's shit, and having a husband who was barely home. Oh yes, and a bathroom remodel and kitchen remodel. Looking back, what the hell was I thinking? I was already heavier than I wanted to be when I found out I was pregnant, and from there, I ate my feelings. And I had a lot of feelings.
I think I gained somewhere between 50-55 pounds with Drew. The most I had with any of the kids, and therefore, the most I have ever lost. I remember going back to school and HATING the way I looked. I went out and bought new clothes (of which, I have since given away or donated to Goodwill). It was terrible. I felt jiggly, I wasn't comfortable in my own skin, and I hated that I didn't have time to exercise.
Fast-forward to September, when Drew was about 6 months, and I discovered that food dyes made Catherine a psycho. So we took those things out of our house. Now, NO ONE in my house eats anything with dye in it. Like all things, I started researching what is REALLY in our food.
Um, shit. Shit is in our food. Complete. Shit. It's disgusting. I had no idea that some of the ingredients for Mountain Dew also came from PETROL BASED PRODUCTS. Say, what? I was grossed out. So I switched to cappucino. Because, you know, that will really help the pounds melt off...
I did that for a few months, enjoyed the hell out of it because it tastes like a hot milkshake, and then really got on board. I cut all artificial sugars and caffeine out of my diet. Did I mention I did this a week before we went on our cruise? Kind of stupid, but I figured the week before spring break, I had nothing going on at school. No night commitments, no competitions, nothing. So I might as well.
When we left for our cruise, I was 162. Close to my pre-pregnancy weight. In all of this, Eric decided he was going to try and lose weight too, but without cutting the caffeine and sugars. Yet, he still had begun losing weight. I managed to avoid a ton of food and only gained four (FOUR!) pounds on the cruise. But after that, it melted off.
I didn't realize how much sugar and the crap that is put into our food helps keep the pounds on. I am now down to 155. Again, one of the lightest weights I have been in several years. Definitely before kids.
I have also realized how much people (like me) don't really need caffeine. I have always been a high energy person. Now, I am a high energy person without the caffeine. That isn't to say that I don't drink it. I will have a sip of Eric's pop if we go out to eat, or I will sneak the occasional cookie in the break room at work, or have a few M&M's if my co-worker has some at lunch. But for the majority of my diet, I have simply cut out crappy food and caffeine. What a difference it has made. I don't feel tired in the mornings, like I used to. I still feel tired, but I wake up to that fully awake state within 10 minutes. I do lag in the afternoons, but then I just eat something and it helps immensely. I sleep so much better! It's crazy that me, the girl who drank a Surge and ate Toaster Strudels before school every morning in high school, and existed on Oreos and Mountain Dew during my teaching career has taken all of that out of my diet. But it's been awesome.
The bottom line is that I have done it for Catherine. If I am able to do it, I can keep it out of my house, and she will never know the difference. She won't be asking for a sip of pop, or wondering what I'm drinking in the mornings. I have noticed a huge difference in my other two as well. They sleep longer, fall asleep faster, and overall are very well behaved, sans the typical 1.5/5 year old stuff. Our bedtime routine (cue knocking on wood, please) lasts 30 minutes, from the time we head upstairs to the time the kids fall asleep. FALL ASLEEP. And they stay asleep. It's awesome. Although, now watch them wake up four times tonight for some reason.
In all, it's been an interesting experience as I didn't think it would do much for me. I figured I would always perpetually be a little heavier after kids. Needless to say, I am happy to see that is not the case. I am glad I did this for ME, and I am glad Eric is with me on this journey. Eric has lost a total of 25 pounds already. TWENTY-FIVE! And this is from a guy who is pretty built as he lifts heavy things all day. I have lost ten. In three months.
Go us.
Summer Update: The Journey with Catherine
Here we are, post-antibiotic diagnostic test, and guess what? We have a new Catherine. A beautiful Catherine. A FUNNY Catherine! Oh, how funny you can be. And SOCIAL. You love having conversations!
We saw a new pediatrician, who referred us to the same doctor our old pediatrician finally referred us to. I didn't give two shits that someone in that doctor's office at Blank Children's Hospital was going to see that two different doctors referred us. Just get us a fucking appointment!
We saw Dr. Malani on Thursday, May 22nd. She was pretty awesome, but skeptical. I had faxed over Catherine's running google doc to her and she actually READ it. I couldn't believe it. Instead of saying things like, "This might just be the way she is" she said things like, "why don't we do this?" She referred us to Dr. Elliot at Blank Children's Hospital. She also referred us to Dr. Young, who is an ENT here in the metro. Both doctors are known for taking on difficult cases and diagnosing them, or helping parents find the best results. Dr. Elliot is the one doctor in the metro who works closely with the immunologists at University of Iowa (oh, yay...) to diagnose PANS and PANDAS. The thing that KILLS me is that, guaranteed, he will see the "good" Catherine and she will be dismissed like so many times before. So I will have to go in there, and have someone simply believe what I am saying without them blaming me for Munchausen by Proxy. Wish me luck.
Now, back to your new appointment. We had your blood tested, but we haven't heard back about results. I should really call, but a lot of things have happened in the past week and quite frankly, when I think about it, it's after-hours or I have too many kids in my house (hellooooo neighborhood!). It's nearly impossible to get things done during the day when I have all three kids, plus the neighborhood kids, running around in our backyard, or running in and out of the house (which I have put a lid on, but it still happens). Just today, I had a half hour to myself, so I quick did some things for Eric's business and then all of a sudden, James and his friends were back, needing lunch, getting James' swimsuit. Then I was buying Adventureland season passes and all of a sudden, time gets away from me. Ugh. But I digress. A lot.
Beyond the two doctors above, we also got a referral to the University of Iowa with a geneticist. Probably to test for autism. WHICH SHE DOESN'T HAVE. In all of my google research, one thing I I have not looked up is if autism is a DNA thing. I will be anxious to know if something comes of that.
Otherwise, I am looking toward the light at the end of the tunnel. Hopefully, this leads to something. But in all of that, I am relishing the moments of happiness that Catherine has given us. She has been giving us new words every day, starting to string together complex sentences, and has many conversations with us (OH how she loves to talk). I love every minute of it. But in all of that, I am waiting for the other shoe to drop. Is the anger over a book at bedtime the start of the next days' temper tantrums that are uncontrollable? I can't help but be on the edge of my seat all the time.
But until the next shitty day with Catherine, I will soak up the good ones. Because when they're good, they're GOOD.
We saw a new pediatrician, who referred us to the same doctor our old pediatrician finally referred us to. I didn't give two shits that someone in that doctor's office at Blank Children's Hospital was going to see that two different doctors referred us. Just get us a fucking appointment!
We saw Dr. Malani on Thursday, May 22nd. She was pretty awesome, but skeptical. I had faxed over Catherine's running google doc to her and she actually READ it. I couldn't believe it. Instead of saying things like, "This might just be the way she is" she said things like, "why don't we do this?" She referred us to Dr. Elliot at Blank Children's Hospital. She also referred us to Dr. Young, who is an ENT here in the metro. Both doctors are known for taking on difficult cases and diagnosing them, or helping parents find the best results. Dr. Elliot is the one doctor in the metro who works closely with the immunologists at University of Iowa (oh, yay...) to diagnose PANS and PANDAS. The thing that KILLS me is that, guaranteed, he will see the "good" Catherine and she will be dismissed like so many times before. So I will have to go in there, and have someone simply believe what I am saying without them blaming me for Munchausen by Proxy. Wish me luck.
Now, back to your new appointment. We had your blood tested, but we haven't heard back about results. I should really call, but a lot of things have happened in the past week and quite frankly, when I think about it, it's after-hours or I have too many kids in my house (hellooooo neighborhood!). It's nearly impossible to get things done during the day when I have all three kids, plus the neighborhood kids, running around in our backyard, or running in and out of the house (which I have put a lid on, but it still happens). Just today, I had a half hour to myself, so I quick did some things for Eric's business and then all of a sudden, James and his friends were back, needing lunch, getting James' swimsuit. Then I was buying Adventureland season passes and all of a sudden, time gets away from me. Ugh. But I digress. A lot.
Beyond the two doctors above, we also got a referral to the University of Iowa with a geneticist. Probably to test for autism. WHICH SHE DOESN'T HAVE. In all of my google research, one thing I I have not looked up is if autism is a DNA thing. I will be anxious to know if something comes of that.
Otherwise, I am looking toward the light at the end of the tunnel. Hopefully, this leads to something. But in all of that, I am relishing the moments of happiness that Catherine has given us. She has been giving us new words every day, starting to string together complex sentences, and has many conversations with us (OH how she loves to talk). I love every minute of it. But in all of that, I am waiting for the other shoe to drop. Is the anger over a book at bedtime the start of the next days' temper tantrums that are uncontrollable? I can't help but be on the edge of my seat all the time.
But until the next shitty day with Catherine, I will soak up the good ones. Because when they're good, they're GOOD.
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