Autism Screening

Yesterday felt completely pointless. Long story short, Nadia does not have autism.

Nadia and I stayed in a hotel Sunday night as we had to be in Iowa City super early Monday morning, and honestly, I just didn’t feel like dragging Nadia outta bed at 4am. So Sunday afternoon we drove there, checked into our hotel, stopped at the Coral Ridge Mall, then ate at Olive Garden before grabbing some snacks and heading back to the HIlton for the evening. Shockingly Nadia slept the entire night, even insisting she have her own bed! I, on the other hand, could not get to sleep, too much on my mind.

The day started with a long chat with a nurse, who had never heard of PANS or PANDAS. This should have been my first clue that the day would be pointless. I mean, maybe she is supposed to pretend she’s never heard of it, or she is really that clueless. Next they sent in the 4th year medical student. I can’t complain, that was Eric so many years ago. He was actually quite pleasant and spoke with a slightly more open mind than the nurse regarding Nadia’s symptoms and history. He’d at least heard of PANS although wasn’t all that familiar as to treatment or the University’s stand on it not existing.

Finally we met with the first actual provider, a developmental pediatrician. He was very kind, played a bit with Nadia, tried to calm her down, as she was already finished with being stuck in the same, very hot room, for over an hour. He listened quietly as I told our story, trying to remember every detail. When I told of our previous PANS diagnosis he was quiet, so I asked his opinion. He didn’t exactly look at me like I was crazy, as I had expected, but he certainly spoke to me in a way that made me feel somehow small. I don’t remember his exact words, but he explained how often we go down a rabbit hole and get sent off on a tangent that takes us nowhere. In other words, PANS isn’t recognized by him.

I also asked his specific feelings on mold, as more and more I feel like this is one of the main causes of Nadia’s PANS. I was actually quite shocked by his response. He flat out told me there is no research showing that mold is dangerous or that it causes the symptoms Nadia is experiencing. I wanted to argue, but why. I wanted to point out the countless peer-reviewed articles on PubMed, one of the most trusted sources of information for MDs. But again, why. He had his mind made up.

Next we moved onto a speech pathologist who again played with Nadia while making a lot of notes. She was very young, very nice. I didn’t even both sharing any more of our history with her than she specifically asked for…

Our last appointment was suppose to be with an audiologist for a hearing test, but Nadia had her hearing checked in August at her four-year well-child exam, so we decided to skip that and instead we were send to a conference room. The developmental pediatrician and medical student joined us with the results. Nadia doesn’t have autism. I wasn’t concerned she did, but I guess good to rule it out and have it clearly stated in her chart. Their suggestion… referral to child psychology. This annoyed me. Not because I’m against medications for anxiety and depression for those who need them, but more so because I see this as a band aid for Nadia’s symptoms. It might work, may make her act ‘normal’, but it will not solve the real issue or find the root cause.

I guess overall I’m really, really sad and frustrated. The University is the place I look to, a place that I view as the most advanced, most up to date on information and treatments, basically where you go when all else fails and you want answers. Clearly I was wrong. The University is not up to date on the latest research on PANS and PANDAS, nor do they even seem willing to explore, join in on the conferences, view the research currently being conducted. The University failed me, and so many other struggling parents and children. And that sucks.

This morning we had a follow-up with Nadia’s PANS specialist. We’re going to switch to a different antibiotic and make an appointment with an allergist to see if that is possibly the cause of the current flare. The doctor also mentioned an IVIG medical trial that we might be able to join. Which scares me, but also encourages me. There is still hope, we are not out of ideas to cure Nadia.

Reaching for straws?

Eric says I’m ‘reaching for straws’ looking for anything I can find to pin on Nadia as a reason for her behavior. And maybe I am. Maybe I want to find something wrong so I know what we have to treat. I’ve been researching a lot, in other words, searching Google, which I know is horrible. Even worse when your husband is a doctor… But here are two things I’ve found so far…

First, PANDAS. I took the information from this site. The symptoms I bolded below fit Nadia.

The symptoms of PANDAS start suddenly, about four to six weeks after a strep infection. They include behaviors similar to obsessive-compulsive disorder (OCD) and Tourette syndrome. These symptoms can interfere with schooling and quickly become debilitating. Symptoms worsen and reach their peak usually within two to three days, unlike other childhood psychiatric illnesses that develop more gradually.

Psychological symptoms may include:

  • obsessive, compulsive, and repetitive behaviors
  • separation anxiety, fear, and panic attacks
  • incessant screaming, irritability, and frequent mood changes
  • emotional and developmental regression
  • visual or auditory hallucinations
  • depression and suicidal thoughts

Physical symptoms may include:

  • tics and unusual movements
  • sensitivities to light, sound, and touch
  • deterioration of small motor skills or poor handwriting
  • hyperactivity or an inability to focus
  • memory problems
  • trouble sleeping
  • refusing to eat, which can lead to weight loss
  • joint pain
  • frequent urination and bedwetting
  • near catatonic state

Children with PANDAS don’t always have all of these symptoms, but they generally have a mix of several physical and psychiatric symptoms.

Okay, and my second idea… Diabetes… Again, those in bold fit Nadia, and these are taken from this site.

The signs and symptoms of type 1 diabetes in children usually develop quickly, and may include:

  • Increased thirst – she does seem to drink a lot
  • Frequent urination, possibly bed-wetting in a toilet-trained child
  • Extreme hunger – she is constantly asking for snacks
  • Unintentional weight loss
  • Fatigue – basically says she says she is tired non-stop all day, even on the days she did sleep well
  • Irritability or behavior changes
  • Fruity-smelling breath

So am I nuts?

Anxiety & COVID

So much to say, and so little time. Maybe I should start dictating these posts as typing it all out seems to take forever, and a lot of energy!

I don’t even know where to start… I guess with the fact that Nadia’s sensory, OCD, and general anxiety issues are so much worse since school started. Did I ever mention how Nadia constantly thinks her underwear is wet, even when it is completely dry? She goes to the bathroom very often and will sit and wipe and wipe and wipe. I mean like 30 minutes or more, crying that “it’s wet”. I have no idea how to convince a child it’s not wet, when clearly she/her body feels it is wet. I do think part of this is sensory, as now she is to the point where she won’t even wear underwear. But given it’s gotten worse since school started, there has to be an element of anxiety mixed in. Strangely enough though, her messy hands issue has changed in the past two days. She still wants a wet wipe with every meal/snack, but this morning when she ate a bagel she was extremely messy with it. Stuck almost one whole hand in her mouth and had cream cheese everywhere. Very uncharacteristic of her. We are still doing OT for sensory issues, but so far our visits are limited to 30 minutes of playing with shaving cream each week. I have no clue if it’s helping.

Refusing underwear is quite an issue though. How does one go anywhere when they will only wear dresses? And no underwear. Last Thursday she didn’t go to school for that reason. Her epic meltdown was just too much, couldn’t get her to get dressed, get off the potty, stop screaming and kicking… And now she is walking around with one hand holding herself, like kids do when they have to pee really badly. We checked her urine again, no UTI. My mother found an interesting article though… Sounds like exactly our issue, called phantom urinary incontinence, and strangely enough, the actual medical research was published by a good friend of my husband’s who he completed residency with. Eric, though, had never heard of this issue, perhaps because it’s extremely rare, and while Eric does see a lot of children, he is not primarily a pediatric urologist like his friend. So… the treatment… is apparently what we already are doing, go to the bathroom often, treat constipation, which she doesn’t even have… I guess this is a phase. Ugh.

A few weeks ago Nadia’s pediatrician referred us to a pediatric psychiatrist in Iowa City. Who knows when that appointment will be. I asked her doctor yesterday what we can do in the meantime, as this is completely disrupting our lives, not being able to leave the house, spending sometimes several hours a day trying to calm Nadia. They said they would push the referral through ASAP. Whatever that means. Clearly going back to school is causing her extreme stress, maybe on top of moving to a new house. And naturally as I mom I want to protect her, so my first instinct is, if school is too stressful to the point where we are considering medicating her, maybe she needs a break from school. I mean, it is only preschool. But doesn’t that just push the problem back in time? Whenever she would go back to school, wouldn’t we start the stress and separation anxiety all over again? Doesn’t she actually need to go to school to get over this stress of it being new? I’m so confused!

So on top of all that. As if that isn’t enough to deal with, as if I’m not still living in a pile of packed boxes… and rooms that need furniture… Yesterday I was tested for COVID. The girls and I woke up yesterday with sore throats and stuffy noses, and I also had a headache, diarrhea, and chest pain with deep breaths. I knew school would send them home, and their current policy is they need a doctor’s excuse before they can come back to school, so we headed to urgent care. Strep tests for all three of us was negative so they wanted to rule out COVID. Apparently this place’s policy current is to only test one family member and assume the rest of those in the household would have the same result. (Um, that doesn’t seem very precise, but okay!) So they picked me, as who wants to test a 4 or 5 year old… The crappy part, the results take 3-5 days during which time we have to isolate from everyone. I know they have tests as fast as 90 minutes, so what a waste of time… Anyway, we are home, again, for a few days until we get results. And God only knows what happens if it’s positive.

Anxious Children

I knew as soon as Nadia came home from the NICU she was an anxious child. She tested me every single day that first year, and still does multiple times a day now. Of course, I blame it on her brain-bleed at birth, but I realize many, many children without such a history have anxious or OCD-like tendencies. Parenting her some days though feels impossible and overwhelming.

Side note, my MOPs group is currently meeting online, and normally I would love to see those ladies, but I just can’t today. I’m tired, neither of the girls slept all that well last night, and I spent the past hour forcing both of them to enjoy their preschool zoom sessions.

I’m always looking for the next great book to teach me something useful. But… I’ve learned 90% of the books I think are going to be awesome are actually common sense, and therefore worthless. I’m currently reading How to Parent Your Anxious Toddler by Natasha Daniels. I’m just getting to the chapter focused on separation anxiety, although the preceding chapters all confirmed that Nadia is certainly an anxious child.

I was rather fed up most of yesterday, sick of rarely to never getting a good night of sleep. Ha good, not even decent most nights. So I decided, no more crawling into the girls beds, no more allowing them to crawl into ours. But how…?

I started with Nadia (3) last night, as I usually put her to bed; if Eric is home, he will put Nora (5) to bed. The nights suck when it’s just me, although after Eric is sleeping, if both wake at the same time, as they often do, it’s usually just me anyway, as he hears nothing.

Twice before bedtime yesterday I explained to Nadia how bedtime would go… I told her I would sit beside her bed until she fell asleep (small steps at first) but I would not get into her bed, nor would I hold her hand or rub her back. I told her she was a big girl and needed to learn to put herself to sleep without my help and stay in her own bed all night. I still gave her 1mg of melatonin last night, which I don’t love doing, but every doctor I’ve ever asked tells me it’s harmless, and it certainly speeds up the time she is awake in bed initially.

So fast forward to bedtime, around 7:30pm… You aren’t going to believe this, but Nadia laid right down, I covered her up, and she fell asleep on her own within a few minutes. I snuck out of her room and thought, hum, that was easy. Too easy. I’m not sure exactly how Eric got Nora to sleep, but he was out of her room shortly after I was out of Nadia’s, so it felt like a win.

Around 11pm Nadia started getting restless in her bed, kicking and crying. I raced down, not because I want to rescue her every time she makes a noise, but because I didn’t want her waking Nora, as it’s hard to get both back to sleep on my own. (We used to use sound machines in their rooms, but they both now refuse them being turned on.) Before I even got to Nadia’s room, Nora was awake and screaming for me. Thankfully Eric wasn’t quite asleep, so he handled Nora. Nadia was having a night terror, which she does suffer from randomly, although more so lately. I stayed with her for a few minutes until she calmed down, I covered her back up, and went back to bed. Somehow Eric got Nora back to sleep rather quickly too.

At 3:30am Nora woke and started screaming for me, of course waking Nadia. I alternated between rooms trying to get both to chill and lay down until finally I woke up Eric to help. Again, Nadia laid down fairly easily and went back to sleep on her own. Nora finally fell back to sleep as well.

5:00am brought another round of Nora screaming. Again, I got Nadia back to sleep rather quickly, but Nora was not calming, kept screaming, thus Eric brought her to our room, which is on another level of the house, hoping that would allow Nadia to stay sleeping, which she did until 7:30am. Eric got up for work then so I stayed with Nora in our bed… a fail there. What else do you do with a five year-old who is loud and won’t stop crying?

I’ve been asking her for days what is wrong, what is bothering her, what is scary to her… All she says is she doesn’t want to be alone in her room. We obviously sneak out once she is sleeping, so when she wakes alone, she freaks. Keep in mind, she wasn’t doing this until a few weeks ago, before social isolation she was my awesome sleeper, allowing us to leave her room when she was still wide awake and sleeping all night in her own room. Which makes this even more frustrating to me now.

I’m hoping to finish the book today, praying it provides even one idea which proves helpful. Do I just keep trying with Nadia and then move onto getting Nora to fall asleep alone? But how? Nora even screams if she is in our bed but I’m not cuddling her. She is so weird and different lately… I’ve thought of things to try, but I fear I’ll make the situation worse… What about a treasure chest of small toys? They would get to pick one on the mornings they slept the entire night in their own beds. Obviously slowly phase out giving gifts once they are sleeping in their own beds every night. Or, if Nora keeps being extremely difficult, let her sleep on the floor next to our bed, but not with us, should she wake in the middle of the night? But is that just enabling her more? I don’t know, I just want a solution that actually works!!!

Not a great week…

Where to start on this week… It has not been great to say the least. Do you ever just feel like everything in your life is falling apart? If you’re not in a great mood yourself and don’t wish to be brought down, I encourage you not to read the rest of this post. I said way back what this blog was for, to get out my feelings and emotions. And that’s what I’m doing. If you think I’m too negative, well, you’re right, because this is my outlet for my negative feelings. I’d love support, but don’t need anyone to remind me of what I already know, that I’m really struggling with a lot right now.

I guess I can start with something a little positive. One of my calm places, where I tend to go when I feel stressed, is Barnes and Noble. If we had other book stores around here I’d go there, but this is pretty much the only one close. I’m not sure why I go, maybe the quiet atmosphere, wandering around with a coffee… I like reading, of falling into a good story, or learning something new, seeing a perspective different from my own. I’m actually quite sad that book stores don’t seem to be doing so well lately, I’d hate to think one of my favorite hangouts might no longer exist! Anyway, I found myself there Monday morning when I was particularly down, sad, distraught, you get the idea. I browsed the self-help section, I mean, seriously, all these books, isn’t there just one I can read and be fixed, feel happy, understand life and it’s struggles?? I came across “What I Know For Sure” by Oprah Winfrey. Now… I’m not a huge Oprah fan, I don’t really love or hate her. I don’t really even watch her talk show, but I have to assume she’s a smart lady who has been through a lot and learned some lessons over the years. I’m only on page 55, but so far I recommend. It’s an easy read, short, cute stories from her life. Nothing completely groundbreaking yet, but certainly a few tidbits I’ll try to remember when I’m feeling especially stressed, like how we should always dance, enjoy the little moments in life, persevere through our fear, etc.

This morning the MOMS Club I’m president of was supposed to hold their monthly, required, business meeting. Only me and one other board member (there are five of us on the board) RSVP to attend. So not even the entire board, much less not a single other member planned to come. So I cancelled it. But it will need to be rescheduled since it is required to hold our non-profit status and affiliation with MOMS Club International. I’m just so annoyed with the members, and the board. The board is supposed to support me, but even they are too lazy to come to the business meetings. I get they want the fun part, the playdates and such, but ugh. If we don’t also have the business side, which coordinates everything, then how can we have all the fun stuff?? If I just stop holding these meetings, the group will cease to exist. Is that what they want?? As if I don’t have enough in my life without feeling like I have to keep this moms club going. I don’t go to most of the playdates involving children. I usually stick to the moms stuff, like book club, moms night out, coffee talk, etc. I really like the moms I’ve met through the club, but most I’m close with are my age, but have children much older than mine, in school, and thus also have some free-time during the day.

So nothing on my calendar today except maybe dinner out with my MOPs ladies if Eric is home from work in time. I won’t know until the last-minute. I dropped the girls off at school and now I’m home, doing laundry. I’m not sure why I don’t like being home alone, or even home alone with the girls when Eric isn’t here. It’s like I don’t know how to spend the time, how to get through the hours. Or maybe I just feel too guilty relaxing… I know laundry is easy, and necessarily, but having that as my only task today feels quite depressing. I know I do much better, feel much happier I mean, when my calendar is more full, when I’m busy and feel like I’m contributing and accomplishing things. The weather was nasty again yesterday and so I picked up the girls early from school. And I was fearing that today would be nasty too and I’d be stuck at home all day with them. That shouldn’t feel like a bad thing, to be at home with your two and three-year old all day. But then why did it feel scary to me, lonely and depressing? Eric had to stay in Waterloo last night because of the weather, so maybe it was the idea of being with just the girls for days on end without help that felt so overwhelming. But still. How can I love them so much, but dislike being stuck at home with them? Does that say something about me as a mother?

Okay, moving on… I think I’ve been having panic attacks. If they are indeed panic attacks, they started this past weekend. Long story there that I’m not ready to go into. I guess to help explain though, I said and did some things that have broken trust between Eric and myself in our marriage. I feel awful, and am dedicated to making things better, to making him and I closer. For now though, I think the stress and anxiety, which I struggle with anyway, now feels heightened, and thus the panic attacks. The feelings I’m having include a racing heart, sweating, feeling in general like I’m burning up inside, sick to my stomach, sometimes my hands feel shaky… Once I was a bit light-headed and felt like I had to sit down. I’ll mention them to the doctor I see for depression, but my next check-up with her isn’t for almost a month yet. I’m hoping these don’t continue…

Eric and I have talked more and more about moving back to Cedar Falls, especially in light of this past weekends events. I know the distance, him commuting, essentially living between two households, has hurt our marriage and pulled Eric and I apart. Thankfully we are both commuted to making things better and stronger between us, but the how of that feels so enormous to me right now. Like how to even begin. I know sometimes it takes me a long time to make a decision, like moving back to Cedar Falls. It’s been on my mind for what feels like forever now. But now that I’m feeling like it’s the best choice for us, I want it now. I’m kind of like that with all my decisions. Once I make a choice, I want to work toward it, make it happen. It isn’t that easy though, our old house in Cedar Falls has renters and is currently for sale. We’d like to get that sold first. Then I assume we’d list our current home for sale. How long could all that take? And here I am feeling in limbo in the meantime. Moving again sounds so overwhelming to me, but with more bad weather coming and Eric being on-call and away again next week anyway, well, the feeling of wanting to be closer to him and together more is on my mind now more than ever. Looking back over the past several years, I haven’t felt at home. Not in Cedar Falls, and now not here. Could we move again, back to Cedar Falls, and finally make a house feel like a home? How? When? And what does moving the girls again do to them? Another new school? New friends, even though I know they are little and don’t remember much. But still. How do I not continue to feel like a visitor in my own house?