Nadia

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·  in a world of her own/withdrawn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…

4 Comments

  • jen.g

    OMG i got tears in my eyes reading her response! Sounds like you’re moving in the right direction. I know how important it is to have the right people on your side! I’m sending you strength mama! I know how hard this is!!

  • LisaT

    I had BIG feelings of relief for you when I read her response as well. I’m so sorry that you’re going through this with Nadia. Time and time again, we hear these stories of moms having to push and fight to have their kids issues recognized – it’s so sad. You know her better than anyone, mama. Trust your gut always – it looks like you’re on the right path. Thinking of you and Nadia!

  • mylifeasacasestudy

    Oh this is wonderful! I’m sorry it’s been so difficult, but it sounds like you are on the right track. Don’t worry what people think about you seeking a PANDAS diagnosis. Please remember that doctors used to bleed people as a “treatment” and remove womens’ uterus’s as a cure for insanity (hence the name “hysterectomy”, a cure for hysteria). If it wasn’t a viable diagnosis it wouldn’t have traction in the medical community, so dismiss any doctor that dismisses PANDAS as a possible diagnosis. XOXO

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