Nadia’s Progress

Remember back on March 1st when Nadia woke up and cried she felt wet, refused underwear after having been doing so well? She never went back to preschool this year after that… Anyway, looking back, something occurred to me. We’d had a playdate with a girl in Nora’s kindergarten class the Saturday before. Fast forward to last week. I’ll get to all Nadia’s improvements in a bit, but… Nadia had been doing really, really well. Not perfect, but really well. Last week that same little girl in Nora’s class stopped over with her mom, and brother this time too. And a few days ago Nadia woke up and cried she felt wet and now won’t wear underwear again… I feel so defeated. We worked so hard! I can’t believe this would just be a coincidence. I have to think that this family, someone in it, is a carrier of strep or some other virus or bacteria, or possibly they have a lot of mold in their home and on their clothing… Something made Nadia flare.

So since March we’d been working with both our PANS specialist who is an MD in Creston, IA, and also a naturopath in Australia, who we meet with over ZOOM. I felt like we were making a lot of great progress, but yet maybe still missing something. If you remember correctly we never really found much on Nadia’s blood tests that showed what virus or bacteria is really causing her PANS. I know she has MOLD and mycotoxins, we used a lot of MiraLAX when she was younger, and she has some immune issues with borderline low IgM and IgA but nothing really substantial to treat, other than the mold. There were a few tests that our Creston MD didn’t think were worth running, as they are expensive and not covered by insurance. Although most PANS treatment isn’t… Anyway, I started to look for yet another, yes a third, opinion, convinced there must be a way to cure Nadia, something we haven’t tried.

I’m in a bunch of Facebook support groups, and one mentioned a specialty PANS/PANDAS clinic in Minnesota. It’s run by MDs, which is nice, as they can prescribe medications, but most also practice functional medicine for a more natural approach. I like the blend of both…

So we went to this Newbridge Clinic in MN and met with a woman there, told our entire story… She also believes Nadia has PANS, and she believes it’s triggered by mold and possibly her allergies, but unlike the other practitioners we’ve met, she thinks it’s more likely Nadia has strep hiding somewhere in her body, and also possibly Lyme. Lyme was one of the tests our MD in Creston didn’t order due to the expense. Well, I take that back, sort of. There are tests for Lyme Nadia’s had, the regular ones… which all show negative. But if you ask anyone who knows anything about Lyme, they will say those regular tests are pointless. So we went ahead and ordered the official Lyme tests from IGeneX. In addition to that blood test, she also ordered 35 other blood tests. Yes, 35. We had those run and are waiting on results. I still need to gather some of Nadia’s urine and drop it off at the lab for two tests. And I have two more lab kits at home that I need to collect Nadia’s blood from her finger and send it in. How in the heck am I gonna do that?? I mean, Nadia is actually really good at the lab, but me sticking her finger? I’m not sure how that will go, so I’ve been avoiding it.

So how is Nadia now? Well, not awful, not perfect. She is currently still refusing underwear or pants, which is big to me as it means not going to preschool in the fall again if we can’t get her back into clothing before the start of the school year. Strangely though, she will wear a swim suit. She is still on a ton of supplements and several Rx medications. And this third opinion provider added a few new supplements and increased the doses of a few things she is already taking. It’s getting more and more difficult to get everything into her each day as some need to be given hours away from food or other medications. It’s like there aren’t enough hours in the day!

Nadia’s lab results are slowly trickling in, as I can see them in her MyChart account. Some are normal, some are not. I’m anxious for our follow-up to discuss lab results and next steps.

Updates on Nadia

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.

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.

October 19, 2015 – 31 Weeks (20 Weeks Corrected)

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Apparently some are bothered by my boring titles…  If you’re wondering, I write them this way so that I can easily refer back to them later…

So 31 weeks!  7 months and 4 1/2 months corrected!  Still not sitting or crawling, but working on it.  I think almost 13 lbs but I’ll get an exact weight on Thursday at her high-risk and immune checkups.  Lots more chewing on hands and everything else she can get into her mouth, including her toes.  I actually hate feet, but hers are so stinking cute!  I spent a lot of time today just watching her expressions, fascinated by her feet.

So truth be told I had five nannies as of this morning when I fired one.  Okay, well, not really fired.  She’s awesome with Nora and very sweet, but she’s so so quiet and hard for me to talk with.  Makes our communication difficult and uncomfortable for me.  So, she used to come every Monday afternoon for two hours and every other Friday afternoon for three hours, and I basically said I’ll call her when/if I need her in the future, no more schedules times.  Now I need to get rid of one more…  I just don’t need so many, maybe I’ll change my mind and want them back in the future, but for now, I’m trying to simplify things.

Remember how Nora’s doctors keep reminding me to keep her home, away from other kids especially and large groups of people in general? Well, I didn’t obey, I took her to a family wedding this past weekend…  And I feel like God is trying to warn me.  I have strep throat, thankfully she doesn’t, yet.  Being her nor I have doctors here yet (another bad on my part) I took her with me to a walk-in clinic yesterday morning after I woke with a TERRIBLE sore throat.  I get strep a lot, so I kind of figured…  I had a slight fever, and she didn’t, thank God.  So far she is acting completely normal other than a slight runny nose.  They told me to keep a close eye on her…  I feel like a bad mom though, like I didn’t consider her best interests in taking her to the wedding.  I guess I need to be more diligent as winter and flu season approach.

I have some other topics I want to mention, but saving those for a separate post.  Stay turned…

34w5d – Day of Life 40

I’m beginning to strongly dislike posting updates that aren’t all happy…  Hopefully the all happy ones will be back soon.

So the facts:

  • Weight: 2,240 grams, which is almost 5 lbs.  I have to think this is incorrect based on how they weigh the preemies.  Nora has a lot of breathing equipment in her bed now, which I assume is accounting for the extra jump in weight so quickly.
  • Tube Feedings: Held until Monday but she is back on nutrition via her PICC line.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Meningitis Status: Culture of blood drawn yesterday hasn’t shown any growth for 24 hours now… more on this below.
  • Antibiotics:  She is on two now, one that works best for strep, her most recent infection, and another which is better for e coli, as a precaution.  Can you ever be too safe?
  • Respiratory: Intubated on a jet vent.  This thing is kind of loud and makes all kinds of interesting noises.  Eric is convinced it’s also a fax machine and coffee maker…
  • Temperature: Bed is back to 36.5 C, so hoping we don’t have to start all over on this too!
  • Location: Bay 1, blah.  I’m not a fan of it over here, and not only because I know Nora is sicker.  It just seems like the environment is more cold, more sterile, and for obvious reasons, but still.

I feel like I have so much to say, so many thoughts and feelings, but no idea how to get them out on paper, AKA, the internet.  This entire process is so much more challenging emotionally than I could have ever imagined.  You know how I was so worried about bonding with Nora and feeling like she was mine?  Well, I think I’ve finally crossed over to totally loving her, as my heart aches every time I think of what she’s going through.  Every time they come to draw more blood or redo an IV, which seems to happen a lot around here!  She fights the tube down her throat often, tries to cry but really can’t…  God, it’s so hard to watch her in pain.  They have been giving her Ativan to help relax her, and as much as I hate to think she is being drugged, it makes me feel much better to see her calm and relaxed.  Maybe they could give me some Ativan too!

I don’t even really remember where I left off on updates.  I’ve been updating my Facebook from time to time too, but with not as much information.  Basically just asking for thoughts and prayers to heal Nora.

I think officially they are saying this is Nora’s second round of meningitis since her birth almost 6 weeks ago.  I really thought we were over the first, which was caused by e coli in her blood and spinal fluid.  Her PICC line was removed last Monday I think…  which leads us to this new infection.

When Nora was found to be sick Thursday they immediately starting running all the same tests, including checking her blood and spinal fluid.  Her blood was immediately found to be infected with strep, a different bacteria than the first time.  Her spinal fluid was also checked though, and on the first look seemed to be clear of any infection.  When allowed to culture for several days though it was found to also be infected with strep.  Side note, when that lumbar puncture was done they accidentally hit a vein, so there was blood in the sample of spinal fluid.  Eric and another doctor here believe her spinal fluid is clear, that the growth found was a contaminant from the blood in the sample.  Perhaps it’s just her blood we should be worried about this time, but we might never know.  The treatment is the same regardless.

Nora has now had two significant infections during her short life, which has surprised her doctors.  At this point, their best guess is that when her PICC line was removed on Monday, strep was somehow able to creep into her blood and make her sick.  I’m told both strep and e coli are everywhere, so apparently this isn’t too far-fetched of an idea.  The good news, the blood sample they took yesterday hasn’t grown any bacteria yet, so a sign the antibiotics are already working.

Knowing that strep and e coli are everywhere leads us to why Nora is so sick from them, but yet other babies here aren’t.  Well, actually, some probably are, but it’s rare for a preemie to get so sick twice in such a short period of time they tell us.  That has led doctors to investigate a bit further, calling in more specialists, infectious disease, again, and immunologists.  We haven’t met with infectious disease yet.  They were here when Nora first got meningitis, but it seems we keep missing their visits this time around.  A pediatric immunologist was here yesterday to speak with Eric though, and from what I gathered, she really thinks these two significant infections are simply bad luck.  She doesn’t believe Nora has an immunological disease.  An entire workup is still being done, but since most of the tests are so rare, there are only a handful of labs in the country that can complete them, and therefore the results could take a week or more.  The immunologist did give us some information to read, which I haven’t made time for now, but will.  She also said that babies get most of their immunity from mom during pregnancy, but this happens mostly in the 3rd trimester, and thus Nora, like most preemies, missed out on that.

So we wait.

Nora looked very comfy this morning when I got to the hospital…

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I guess overall I’m just really sad and scared from this setback.  I was so worried weeks ago that Nora would have developmental delays, or possibly worse issues, from the meningitis, but now, with two infections, I’m that much more worried.  I want her to be a happy, healthy, normal child, but no one can tell us exactly what her future will look like.  There are plans for another brain MRI, but I’m not sure when that’s scheduled.  We’re also still waiting on ultrasound results of her abdomen.

She is such a sweet little girl, I hate to see her in pain, to be suffering, to be put through so much in just 6 weeks of life.  I want to be positive, to be hopeful, and I am, to a point, but there is so much I don’t understand.  I’m not terribly religious, but many keep telling me to trust God.  But why does God force these tiny miracles to endure so much…?  I want to be able to picture Nora home with us, but at this point I really can’t.  How do I know she won’t keep getting this sick?  How will I ever not be scared that her health is about to take a nosedive?  And she got so sick so fast this time.  If she was home with us it could have been so much worse…

I’ve given up on my personal goal of having Nora home by May 15th.  The antibiotics this time need to run for at least 14 days, but I just don’t see mid-May as a possibility for discharge now.  I’m sad, and angry, and fed up, and just sick of this place.  I thought the birth of my daughter would be such a happy time.  But instead the past 6 weeks have been filled with pain and sorrow.  I miss holding my little girl…