Whack a Mole

Treating Nadia’s PANS feels a lot like whack a mole…

Nadia was worse today… Large pupils, very moody, went to the bathroom often and sat on the toilet saying it felt wet… Oh, and she was awake until 4am this morning, when she has been sleeping so so so well. So I asked in the online PANS support group, and sure enough, everyone told me their horrible experiences with the allergy medication Singular which Nadia started on eight days ago. In fact, Singular has a Black Box Warning, basically its side effects are many symptoms of PANS. She had a dose this morning, so I’m not sure how long it will be until the effects wear off… The below is a screen shot from the prescribing information.

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.

Preschool Conferences

Yesterday I met with Nora and Nadia’s preschool teacher, the same woman, as their classes meet at opposite times of the day. Both girls seem to be progressing well. Nadia had no idea where she lives, and Nora didn’t know the color of our home, but… I’m not gonna worry just yet! Nora has mastered quite a few more letters than she knew just a few months ago, and while Nadia definitely knows the ABC song, she refused to sing it for her teacher during the assessment. In fact, most of the negative marks on Nadia’s report were her choosing not to cooperate, and not necessarily because of a lack of knowledge. Sounds about right, as Nadia is certainly my spicy child.

We did chat a bit about Nadia’s OCD tendencies, such as her not wanting to get her hands dirty, freaking out if she gets even a drop of water on her clothing… Her teacher is definitely aware. I mentioned how back in August at her three-year well-child check our pediatrician referred us to occupational therapy for a consult… but that we are still on the wait list. Clearly not enough occupational therapists in this city! Her teacher mentioned she could have AEA, Area Education Agency, meet with Nadia and assess her behavior. I guess I didn’t even consider that option, nor do I really even know much about their services. I’m so used to setting up therapy through our doctors, being we’ve had so many appointments since birth… So, more to come on that. Not sure how quickly anything will happen, but I’m definitely open to a professional’s opinion on Nadia’s behavior.

This morning was Moms Morning Out with my MOPs group of ladies. Several of us met for breakfast, minus kids, as the MOPs daycare option was still available. One girl in our group had a little girl on Tuesday, and another girl, who was at breakfast this morning, will be induced with her little girl tomorrow. I couldn’t help but feel a little jealous. I know I have so much to be thankful for, but sometimes I still get so angry that having children couldn’t be a bit easier, if even in some small way easier, for me. Why does it all have to be such a production and process????

Speaking of babies… The rude woman from my fertility clinic has not yet gotten back to me regarding the medical necessity of us using a surrogate. I was just looking up some stats though, out of pure curiosity. I knew frozen embryos were more likely to split and therefore produce twins, but I’m a little confused by this statement:

So, still no idea how common it is. I’ve also read that IVF produces boys 56% of the time. So chances are our frozen embryo is a boy. But then again, we got Nora from IVF, so…

Eric is working out of town at an outreach clinic today, the second day this week he’s driven to this location, which is 90 miles from our home. In other words, he won’t be home for dinner. Again. I do need to pick up the girls from school soon, and then pick up a grocery order… No idea what I’m making for dinner or how I will occupy them until bedtime, considering it’s really windy and cold today. And oh how I love giving them baths alone. How many of you do showers with three and four year olds? Easier than baths? We tried it a few times, but it was a mess as I had to get in with them, and then I sent one of them out at a time to Eric to dry off. It just seemed like way more work than baths… No one tells you baths are a pain in the butt 🙂 Anyone discovered an easier way to clean their children, let me know!