The MD & Me

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  • Category: Nadia

    • Referral

      Posted at 4:00 pm by Stefanie, on October 27, 2020

      Good news! I just got a message from my pediatrician that she is willing to put in a referral to Dr Elliott in Des Moines. Now, hopefully they don’t wait as long as the university to call to make the appointment…

      In other news, Nadia has been baby-talking more and more, a symptom of PANS. When I picked Nadia up from preschool today her teacher said we really need to work on that, as if she was scolding Nadia. Ugh. Such a huge part of me really believes the baby-talk, like so much else, is a symptom of something larger. And that Nadia doesn’t necessarily know how to stop it on her own…

      Posted in Nadia | 1 Comment | Tagged PANDAS, PANS
    • Updates on Nadia

      Posted at 11:37 am by Stefanie, on October 27, 2020

      First I want to say, I really, really like our pediatrician. And while she isn’t being unhelpful when it comes to my concerns about Nadia, she doesn’t seem particularly helpful either.

      Last week I specifically asked Nadia’s pediatrician to run a few blood tests…

      • ASO Titers – Antistreptolysin O is a blood test to measure antibodies against streptolysin O, a substance produced by group A streptococcus bacteria. Antibodies are proteins our bodies produce when they detect harmful substances, such as bacteria
      • anti dNase B – (antideoxyribonuclease-B antibody) is one of the most common of several antibodies that are produced by the body’s immune system in response to an infection with group A Streptococcus (strep infection). The anti-DNase B test measures the amount of this antibody in the blood.

      Basically we were trying to see if strep, the cause of PANDAS, is overloaded in Nadia’s body. The nurse emailed me that both tests came back in the normal range, although I find it weird she wouldn’t actually tell me the exact level. But… this doesn’t mean Nadia doesn’t have PANS, as that can be caused by a variety of infections, including Lyme disease, mononucleosis, mycoplasma (walking pneumonia) and the flu (such as H1N1) and even mold and yeast.

      Nadia’s pediatrician seems as if all is well now, not investigating symptoms any further, just wanting to continue occupational therapy. I still haven’t heard a word from the University of Iowa about our referral appointment there which was submitted months ago now. So… I’m taking matters into my own hands, even though everyone thinks I’m crazy, and maybe I am, but I need more answers. There is a physician in Des Moines, IA, not that far from us, that is a PANS/PANDAS specialist. But we need a referral. So… I sent a mychart message and I’m hoping our pediatrician thinks it’s at least worth talking to this specialist about Nadia.

      Posted in Nadia | 2 Comments | Tagged anti dNase B, ASO titers, PANDAS, PANS, strep
    • Finding Help

      Posted at 9:45 am by Stefanie, on October 20, 2020

      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…

      Posted in Nadia | 4 Comments | Tagged occupational therapy, PANDAS, PANS
    • Timeline

      Posted at 12:49 pm by Stefanie, on October 19, 2020

      It’s snowing. Snow does not make me happy. I’m supposed to be cleaning and doing laundry, seems to be a theme with me, but here I sit at my computer. I’m mainly thinking about Nadia and the issues we’ve been noticing with her lately. So I went back through my blog and tried to note some behaviors and when they started. Seems the very first mention of anything related to her behavior now was back in July of 2019 when epic tantrums started. I know I have mentioned that all of her symptoms match PANS or PANDAS, but for that to be true, an illness before July of 2019 would have had to cause it, and basically in July or right before… The only thing really going on all along was ear infections, even some after she got tubes in June of 2018. Hum…

      • February 2018 – Several ear infections, antibiotic injections that caused a rash and diarrhea
        • February 12th – Congestion, cough, fever, poor appetite, fussy, ear pain = Augmentin
        • February 14th – fever, ear pain = UTI, Rocephin
        • February 15th – recheck ears = Rocephin
      • March 2018
        • March 30th – upper respiratory tract infection = no meds
      • April 2018 – Several ear infections
        • April 23rd – ear pain = Zithromax
        • April 30th – ear pain = Amoxil
      • May 2018
        • May 22 – ear pain = Amoxil
      • June 2018 – Hand foot and mouth
        • June 7th – ear infection = Omnicef
        • June 18th – fever = no meds
      • July 2018 – Vomiting and low-grade fever, ear tubes surgery
      • November 2018 – Nadia bitten three times at daycare and kicked out
      • December 2018 – Nadia starts to wake more overnight and starts having night terrors
        • December 13th – Stef Mycoplasma IgM
      • January 2019 – Girls start new daycare, Nadia has more ear infections and some vomiting but tubes draining
        • January 2nd – ear pain = drops for tubes
      • March 2019
        • March 28th – ear pain = drops for tubes
      • April 2019 – Moved back to Cedar Falls, Girls started at new daycare
      • May 2019 – Nadia’s last high-risk follow-up clinic visit, released from their care as they noted her development as perfect for her age
      • July 2019 – First mention of Nadia having epic tantrums, lays on floor, screams, hits
      • August 2019 – Girls start at Clover Patch Preschool in Cedar Falls
      • September 2019 – Nadia has diarrhea in bed, then wets bed same night, and then says her underwear feel wet, when they are completely dry, wanted to change underwear several times, more epic meltdowns, Nadia doesn’t want hands dirty, wants to wash hands often, picks tiny pieces of lint off clothing or wants to change pants if dirty with food, stops eating lunch at school
      • November 2019 – Nadia seemed a bit more comfortable at school, ate a bit more at lunch
      • December 2019 – Girls were sick the week of December 16th and missed most of the last week of school before Christmas break
      • February 2020 – Nadia complaining more and more about it hurting when she pees, or hurting “down there”, wants to change underwear often, wants to wipe A LOT
      • March 2020 – Nadia doesn’t want to wear short-sleeved shirts as the weather is warming up, School closes due to COVID-19
      • April 2020 – Nadia complaining more and more that it hurts when she pees, wants to wipe A LOT, mention of tantrums getting worse
      • August 2020 – moved into new house, girls started back to school, Nora in Kindergarten and Nadia back at Clover Patch, Nadia got glasses, Nadia starts refusing pants
      • September 2020 – Nadia starts to complain large areas of her skin itch, still lots of meltdowns, only wants to wear dresses, doesn’t want to use covers in bed, refuses to wipe after going to the bathroom now, as says that makes her have to pee, although still saying always feels wet, started on Ditropan which makes her not want to go to the bathroom nonstop like before, no longer wants to sleep in her bed, wants to be rocked to sleep
      Posted in Nadia | 5 Comments | Tagged PANDAS, PANS
    • Sensory Processing Disorder

      Posted at 9:49 am by Stefanie, on May 4, 2020

      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?

      Posted in Nadia | 2 Comments | Tagged magnesium, occupational therapy, sensory issues, sensory processing disorder, sleep, touch
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    • About the Author

      Stefanie

      Stefanie

      Subscribe to follow my infertility, pregnancy, NICU, and PANS motherhood journey. Outside blogging I enjoy reading, coffee, and long chats with good friends. I live in Iowa with my husband and daughters, Nora (5) and Nadia (4).

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