OT Feels Pointless

Occupational therapy feels so pointless. This morning the OT rolled Nadia in a large tube back and forth across the room for awhile. Apparently it’s supposed to help with her sensory issues. And then they played a memory game. I feel like these are things we do at home… But of course I don’t really want to quit therapy as I don’t want to feel like I’m not doing everything possible to help Nadia. I think Nadia could benefit more from physical therapy as she is still tripping over one foot that turns in. All her doctors keep telling me that she will grow out of this and her foot will straighten, but when??

I collected Nora’s pee this morning for her organic acid and mold/mycotoxins test. I think it takes a few weeks for results, I’m seriously curious…

Please pray that Nadia bounces back after stopping the Singular…

Finding Help

I’m guessing there are a million mothers out there, who, at one time or another felt like something was wrong with their child, and no one seemed to be willing to step up and help. I’m feeling this way with Nadia right now. I just want her to be well, to be ‘normal’ if there is such a thing. Basically for parenting her to not feel like one nightmare after another.

I’m still really stuck on thinking PANS/PANDAS is at least worth looking into. But many in the medical community don’t think it’s a real thing… so getting someone to help us might prove difficult. I’ve connected with a few moms through Facebook in PANS groups, and they seem to think it’s worth researching as well. In fact, one mother told me to call her later, as her daughter as confirmed PANS and one of her main symptoms was feeling wet even when her underwear were dry. Coincidence?

This is the email I sent one of Nadia’s occupational therapists a few days ago..

Good morning,

I apologize for not getting back to you sooner. I’ve felt quite overwhelmed with moving to a new home, my girls starting school, and overall with Nadia’s behavior lately. Thank you for reaching out, I do very much appreciate your input. 

Nadia and her behavior is really always on my mind. I’m so worried about her and desperate to get some answers. We were referred to The University of Iowa Center for Disabilities and Development, so I hope that appointment can be scheduled soon. In the process of scheduling that appointment they required Nadia’s preschool teacher fill out a form, which I have attached for your, and Taylor’s review, as I don’t have her email. The report was really upsetting to me, as I wasn’t aware of just how behind Nadia seems to be compared to her peers. She’s obviously been struggling with a variety of sensory and OCD symptoms, but in addition her teacher pointed out a few other struggles… 

·  social-emotional

·  fine motor

·  numbers/shapes/letters

·  clumsy/awkward/poorly coordinated

·  fearful/anxious/worried

·  lacks energy/slow-moving

·  in a world of her own/withdrawn

·  poor handwriting and cutting skills

Ugh, I feel like the list goes on and on. We originally started with Taylor working on messy hands, but honestly, Nadia has been a lot better in that area lately. In fact, all the sudden she is a messy eater, puts her entire hand into her mouth and smears food all over her mouth sometimes. Speaking of eating, she is extremely picky, but then again, so is her older sister Nora. 

Biggest issues at home right now are her still always ‘feeling wet’ after going to the bathroom and not wanting to wear underwear or pants or really anything on her legs. And winter is coming! We have lots of other issues too, like all the sudden hates baths and being in her bed, but I’m not sure how many fit into the OT category, like her dramatic mood changes, epic meltdowns, etc.

I sent a mychart message to her pediatrician a few nights ago… probably sounding like a crazy mom, as I’ve obviously been researching how to help Nadia. Every time I look up Nadia’s symptoms I come across PANS or PANDAS disease. It’s like she has almost every symptom. I know many in the medical community don’t believe it’s real though… and Nadia could very well just have all the other issues separately, like OCD, sensory, etc. That said, have you ever treated children with PANS? Just curious…

Another thought. Since Nadia was born at 30 weeks, she technically wouldn’t turn four until Halloween, her due date. And I know they say preemies catch up by the time they are two usually… but just makes me wonder. Nadia is in a four-day preschool program meant for four and five year-olds, when she would be still three if born full-term. Do you think it’s possible preschool is just expecting too much from her? That perhaps she should drop down to the two-day program for three and fours, or the three-day program for four year-olds?

If you have any insight for me or thoughts, I’m all ears. Or if you can help Taylor design OT sessions to help Nadia, that would be amazing too.

Thank you so much!

And here is her response back to me…

Hi Stephanie, 

The first thing that came to my mind when reading your email was re-current strep and PANS or PANDAS. I have worked with one other family towards that diagnosis. I can reach out to your pediatrician and discuss the med provider here in Iowa that works with children with that diagnosis. 

That being said, please don’t worry. So easy for me to say, as I am not her mother. I have 3 of my own and understand well the never ending mom worry. Thanks for trusting me enough to seek my input. I have been reviewing Taylor’s notes and she is doing a wonderful job with Nadia. I think there are some things we can add and we will work together at coming up with next steps.

Know that we are on your team and will help get things figured out so Nadia can thrive.

Maybe someone does care! Reading this email made me feel a lot better! Now, if only the University calls to schedule that referral appointment…

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.

July 10th

Wow, July 10th. I haven’t written in over a month. I have no idea how that is possible. The month of June somehow flew by, but yet each day felt like 17 years.

June was basically the same as May, only hotter. We played in the pool a lot, see some pictures below, as we still aren’t going out in pubic. It’s been somewhere around 119 days in isolation. I keep saying I might lose my mind. Perhaps I already have. Today is especially bad, it’s near 100F so we haven’t been outside much… and they are obviously sick of being stuck inside. They fight. Nadia is quite physical. I feel like I keep pulling her off Nora. No amount of sending her to her room does any good. I suspect a lot of Nadia’s behavior is sensory related, more on that in another post, but regardless, we need to discipline. And I have no idea how, as nothing I have tried works. I know we can’t stay inside forever, but with cases rising again, I’m just not all that comfortable taking the girls out yet.

In other news… WE BOUGHT A HOUSE. Eric keeps teasing me that it’s our annual real estate purchase, as we seem to move every one to two years lately. It’s a really pretty house, I’ll post a few pictures once we are moved in. We close July 27th but the movers don’t come until August 8th. I guess I should be packing.

Nadia had her first occupational therapy (OT) session last week. They gave us a reoccurring appointment, every OTHER Thursday for 30 minutes. I’m annoyed. I don’t feel like it’s nearly enough time, as I can hardly tell them my concerns much less have them work on anything with her. I feel like they are just too busy to really give any patient the attention they need. Maybe I still need to consider another therapist in another nearby city. Nadia also has a speech therapy appointment at the end of the month. She was in speech, and actually physical therapy also, when she was younger, but I feel like she still needs some help with speech. She doesn’t talk much, although can, but sometimes she acts like she wants to say something but can’t think of the word. Other times she will make a noise or point for something she wants. We’ll see what they have to say.

I can’t think of what else is new… since we don’t leave the house much. We did go to my sister’s house for the 4th of July which was fun, lots of good food! Otherwise, same old same old here playing LEGOs!

It’s June!!!

How it can be June, I have no idea. May took three years to pass I swear. Our state, Iowa, is starting to open back up, but we are still staying put for the most part. We have been out once really, for Eric’s birthday to dinner which was last week. It felt very weird to be out, almost wrong. And the girls were kind of wild, but of course, can you blame them after being stuck at home for months?? After Eric’s birthday dinner he enjoyed a homemade chocolate cake at home. Super yummy!

I feel like I have lots of updates… probably because I haven’t written in quite sometime, but also because I feel like all the things put on hold due to COVID-19 as slowing coming off hold status.

The occupational therapy clinic FINALLY called and Nadia’s appointment is next Monday morning. I’m nervous, and I so wish Eric could come too, but they only want the patient and one parent due to COVID. More to come on this!

And… the IVF clinic called to make an appointment to start the gestational carrier process from their end. I have no idea what to expect, I guess we will find out. They suggested some appointment dates in July, but Eric is on-call those days, so I’m waiting for them to call me back so we can figure something out! Stay-tuned!

Alright, back to cleaning the kitchen and laundry, which I’ve been putting off forever. Seems the more time I have, the less I accomplish with poor motivation. I’ll leave you with a few more of my favorite photos currently on my phone.

Sensory Processing Disorder

I finished another book over the weekend, “The Out-of-Sync Child” by Carol Stock Kranowitz, M.A. A physical therapist friend recommended it, so Keri, if you’re reading this, thank you so much, it was an extremely helpful book!

The first part of the book offered a questionaire to gage your child’s symptoms, and obviously is in no way 100% accurate, but it gave me some insight… Nadia scored high, meaning possible issues in a few areas… touch, sleeping, and social-emotional described her issues very well. The book had a ton of information, and I won’t even try to explain what each of those mean in technical/medical terms, as I’m not sure I fully understand myself.

The book was not awesome at, although very good at, suggesting ways to overcome sensory issues. However, most of the best forms of treatment involve professional therapy by an occupational therapist. This didn’t surprise me in the least, as we received a referral to OT back in August from Nadia’s pediatrician. Problem is, there are very, very few pediatric OTs in our area, and then COVID-19 made getting medical help even harder. I know we are still on the wait list for an evaluation, but who knows when we will be called to schedule such. And, that reminds me, Nadia’s eye exam keeps getting pushed out further and further as well.

So for now, I guess I wait, and try to learn as much as I can on my own. I have another book to read on the topic, and a few others I might look into purchasing. We have been giving Nadia, well, and Nora, magnesium each night, and by golly, the shit must really work as Nadia has been sleeping through the night ever since! No seriously people, I swear it must be a miracle drug or something! The girls do take vitamins, but just some random gummy vitamins that I see don’t actually contain any magnesium. I guess I should research a better kid’s vitamin, although it has to taste great or I assume my girls will reject it… Any suggestions?