Zoloft

Nadia’s doctor emailed me back yesterday and agreed that something for anxiety might help Nadia while we try to figure out her PANS treatment. The pharmacy had to order in the liquid version of Zoloft, so hopefully they will have that today for us to start. I know that won’t be a quick fix either. My fear though, is it will mask a lot of these PANS symptoms and we’ll never actually get to the root cause…

When Eric got home from work yesterday he started talking to Nadia about how if she wears underwear and goes to school we will all go to Target and get a toy. Yes, we are not above bribery at this point. But sadly, as much as Nadia loves Target and toys, even that didn’t work. She got all dressed today, but perhaps 30 seconds later, took off her underwear… I question her a lot, she says she doesn’t want to wear underwear because she thinks wearing them will make her pee. Although this has never happened. And she says she doesn’t want to go to school because mom isn’t there. I’m running out of ideas on this, and trying to focus on the positive… I am able to stay home with her. She is in preschool which isn’t required. And maybe staying home will prevent her from getting COVID? As rates here are really, really high.

So yes, she is home with me again. And again I feel like I will get nothing done around the house, as she is constantly asking for my help, for me to go to the basement to get a certain toy with her, to play with her, to braid her dolls hair, etc.

I better start some laundry quick before she notices I left her playing in the basement!

Fall

It’s officially fall. I think… Feels like fall here anyway, only 61F today. So certainly not cold, but definitely sweater weather!

I don’t have a lot of updates on Nadia’s health. Yesterday was her four-year well-child exam. And they confirmed my fear. She is losing weight, about 10% of her total body weight although wants to eat all the time. Even wakes in the middle of the night to eat. They ordered some blood tests, but I still need to take her for the blood draw. She got 2 vaccinations yesterday, plus the flu shot, so I felt like that was enough for one day… Otherwise her health is the same. She is still having lots and lots of meltdowns, lots of sensory processing issues, some OCD tendencies, still says she feels “wet” whenever she goes to the bathroom. She used to wipe and wipe and wipe, now she refuses to wipe at all, says that makes her feel like she has to go potty. Eric talked to his partners and they decided to try Ditropan. Per WebMD, Oxybutynin is used to treat certain bladder and urinary conditions (e.g., overactive bladder). It relaxes the muscles in the bladder to help decrease problems of urgency and frequent urination. Oxybutynin belongs to a class of drugs known as antispasmodics. So far I have noticed she asks to go to the bathroom less, which in itself is helpful, as every trip to the bathroom leads to a meltdown.

Aside from the weight loss, Nadia often complains large areas of her body itch, although we see no evidence of a rash or other irritant. And if you Google those two symptoms, scary stuff comes up. So for now, I’ll wait for the blood test results. We are also still waiting on the pediatric psychiatric referral. Our insurance denied our pediatrician’s request for us to be seen in Iowa City, but approved for us to be seen in Des Moines at Blank Children’s Hospital. I’m not as familiar, as we are in Iowa City all the time, but it will have to do. We will also see a developmental pediatrician there to screen for more general issues… whatever those are… I’m guessing Autism and such, which I don’t even want to think about right now.

Nadia still isn’t sleeping well. Which means the entire family isn’t sleeping well. I can get her to sleep, by rocking her. It’s now her only way of falling asleep. She does not like her bed, does not want to sleep in any bed, and certainly doesn’t want any covers if I can get her into bed, which is usually me laying her in bed after she falls asleep rocking. Getting Nadia to sleep though isn’t the biggest issue. It’s keeping her sleeping. She wakes several times a night, and almost always exactly at 4am. What the heck is with 4am?? And no matter how I’ve tried, she won’t put herself back to sleep. Although neither will Nora, so perhaps it’s a me issue. At this point I don’t care how any of us sleep, just that we sleep!

In other news, Nora seems to be adjusting to kindergarten well. Every morning she says she doesn’t want to go, but walks in without crying and seems excited to tell me about her day at pickup. Nadia is not adjusting to preschool well, big surprise. This morning she cried so hard I thought she might be hyperventilating. She says she doesn’t like the teachers. But I know the teachers, they are awesome, Nora even thought so… Nadia just doesn’t like being away from me, but to the extreme. I’m anxious for her referral appointment so we can talk about Nadia’s anxiety. Wonder where she gets it…

Life is slowing getting back into a routine. I’m back in Grove (Women’s Bible Study) on Tuesday mornings and MOPs (Moms of Preschools) on Thursday mornings. Nadia has speech and occupational therapy on Wednesday mornings, and both the girls have ballet on Thursday nights, although so far Nadia hasn’t been brave enough to attend. We’ll see, I’ll try again with her this week. I now have plenty of time to clean and organize the house, but God knows I’m awful at procrastinating. The laundry is staring at me right now… I emailed an interior designer that one of Eric’s partners used for their new home. I’m a little scared. An interior decorator sounds so… expensive. But I honestly have no clue where to begin on purchasing furniture for this house. The help would certainly be appreciated, if even for only a few main rooms. Below are pictures of Nadia’s bedroom curtains and bedding, my attempts at picking a paint color. I think I decided on Intimate White, which is number 8 on the paint samples. Oh, and the house we just moved from is going on the market TODAY, so let’s pray it sells quickly!

We went to a pumpkin patch on Saturday. Thankfully Nadia agreed to wear underwear, since she is stuck on dresses right now. And no coats. What am I going to do when it gets colder??? We had fun, although Nora was sad she couldn’t go down the giant slide all day.

And here are a few other random pictures I found on my phone, several taken by Nora.

Ah, somehow it’s 1:30 already and I’ve accomplished very little today. I guess I better start planning dinner!

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!!!