Nadia Update

Nadia is doing somewhat better. Not perfect, not back to ‘normal’, but better. I think it was right after I posted last, so about two weeks ago, we did a three-day course of a steroid and switched her antibiotic to something different. And started her on Prozac per the University’s recommendation. I’m not thrilled about that, but I’m willing to try it… So far she is calmer, less moody, sleeping better again, more focused, having fewer meltdowns, not crying that she’s wet, although still refusing pants and thus still home from preschool. I attribute all that to the steroid, as it’s too soon for the Prozac to really be working. And she is on a tiny dose, even for a child.

I have noticed a strange new rash on Nadia that seems to come and go randomly. I’m trying to keep track of medications and foods to see if I can figure out what is causing it… The naturopath told me it could be a sign of yeast die-off, as we are back to giving her Candex for the yeast overgrowth in her gut. She also had an external vaginal yeast infection which thankfully was cleared up with about two cups of apple cider vinegar added to a tub full of bath water.

The more I read about PANS and PANDAS and talk to other parents, the more scared I get. It seems like treatments need to be tailored to each individual child… so lots of trial and error, which takes forever. And of course, the setbacks every time the immune system is activated. I obviously google more than I should, but I came across these…

How convenient that Eric is a Urologist. I asked him if this could possibly be Nadia’s issue… And it’s hard to tell without doing the testing, although he doesn’t feel Nadia would handle the test well. He’s going to call the physical therapist who he sends his patients to and see what she can offer a child… I know the feeling wet is a classic PANS/PANDAS symptom, but she seems a lot better from the steroids, and yet this wet feeling remains… Maybe this is worth a try.

Oh, and Nadia got new glasses. Her prescription didn’t change, but I was sick of her complaining her current glasses hurt, even though we’d had them adjusted maybe 15 times, and I’m not kidding. These I think are more comfortable, although she still isn’t too keen on wearing them.

Speaking of her focus, she has been hard at work today drawing Elsa and Anna!

Day 2

I just gave Nadia her second of three steroid doses, dexamethasone. They gave us pills to crush and hide in food. Ha, four year-olds know when you hide things in their food, thus I’ve resorted to bribing with toys. Our Target order of a Barbie is ready for pick-up…

The steroid is messing with her sleep… Nadia slept at odd times during the day yesterday, and then was awake at odd hours overnight. I’m exhausted. Hopefully I can keep her awake today so she sleeps better tonight. I emailed her school that I wasn’t sure how soon she’ll be back. I’m so sad, I want her learning, with kids her age, making friends. I just want life back to ‘normal’. Is that really asking too much? I know I shouldn’t feel sorry for myself, but why did God have to throw another shit storm my way? I was so excited about the coffee shop, and now… I don’t know. Obviously on hold.

Home

Nadia is home with me, again, as she has been since Thursday. I still can’t get her into underwear and thus to preschool. It’s almost like she has a panic attack every time going to school is mentioned. So I didn’t push it yesterday or today. But I guess my fear is, the more she stays home, the harder it will be to ever get her back to school… Her doctor did say to try to limit some of her stress until we see some improvement…

Speaking of improvement. I haven’t seen any yet. Okay, maybe some, but so little I could just be imagining it. Yesterday the supplements arrived that the doctor recommended. Mostly vitamins and probiotics, which are capsules. I looked online and it said I could open them… but what to sneak the powder into… We are tapering down her steroid over a month. I feel like a lot of PANS parents said a steroid helped right away, but I can’t say the same. The doctor said sometimes, once they are off it, you notice the improvement when the side effects of the steroid wear off. We’ll see I guess. I’m not entirely sure we are even on the right antibiotic yet, as I don’t think we know the real trigger of this yet. And sleep is still not going great. Maybe due to the steroid… She wakes often during the night wanting something to drink.

And then there is Eric. He is still on board with trying PANS treatment, but he admits he is skeptical. We haven’t been told any of the tests done came back actually showing anything abnormal. Although, the books I’ve read on PANS say there are soooooo many things that can cause it, and usually several things in combination are the trigger. How could one possibly test for everything? But if you don’t know what you’re treating, how do you treat it? And Eric says, in medicine, if you look hard enough, you will find something. I think that was his way of saying, if we find something, it still doesn’t mean it’s necessarily the trigger.

Last night Eric said he thought we should consider an anxiety medication for Nadia. He meant, keep with the PANS treatment, but in the meantime, see if a SSRI, like Prozac or something, would make her feel better, allow her to go to school and function more normally, until we figure out the PANS treatment. I guess I’m not sure opposed to such. My fear is, it will work, and cover the root cause of all this…

I wish God would give me a sign

Something to show me I’m on the right track

That I’m making good choices for Nadia

I pray for our doctor, that she may have knowledge and wisdom

Ultimately though, I pray for Nadia

That we may find healing

28 Week Check-up

I guess overall today’s check-up went well.  For the past week I’ve had such a strange feeling that this baby is going to be born as early as Nora.  I hope I’m wrong!

Highlights from the visit

  • This isn’t really a highlight, more a pain in the behind…  Since Eric’s work changed a bit on August 1st, so did our health insurance.  We shouldn’t have a gap in coverage, but since I don’t have the information for our new insurance, and our old expired at the end of July, it’s making things difficult.  Apparently Eric’s new HR department is not exactly, with it.  Yesterday morning I got three phone calls, one from the specialty pharmacy who supplies me with my Makena injections telling me that the refill claim was rejected, one from my doctor’s office alerting me that I had an appointment tomorrow (today) and my coverage was expired, and another from the nurse at my doctor’s office who worked seriously three weeks to get our previous insurance to pay for Makena saying she was asked to start the approval process over…  Ugh.  And of course I had to tell each of them I was pretty much clueless, that we have retroactive coverage, but I have no idea who it’s through or what it covers.  The approval process for the Makena is just more than I really want to deal with again, and I even considered just paying cash for it, but it’s $3,000.00 per injection, so per week, and that will add up quickly.  I had my doctor’s office give me an injection today so that I could save the two doses I still have at home, hoping the insurance mess would be resolved before I run out.  I’m not holding my breath.
  • Right when I arrived the nurse had me drink the orange glucose ‘beverage’, for lack of a better term.  I honestly don’t think it’s bad, but then again I love Starbuck’s flavored lattes which I assume have about as much sugar.  They told me I didn’t have to fast this morning, but to limit sugars…  I had a piece of peanut butter toast and a banana.  No clue if that was a good or bad choice.  I just received my results online, 163, which I’m pretty sure means I have to do the three hour fasting test.  Does anyone know for sure?  With Nora my result was 137 and I remember them telling me I just passed.  Great.  One more thing to worry about.  I’ll wait to hear what my doctor has to say…
  • The nurse also told me that it’s at your 28 week check that they like to give a tdap booster, so of course I was willing.  Already my arm is killing me though!  Picking up Nora tomorrow should be fun!
  • My doctor came in next and we chatted for quite a while about all my symptoms.  Even tonight I’m still experiencing all the same, lots of pressure very low in my abdomen, off and on tightening of my belly, very low, some mild cramping, etc.  I basically feel like baby is just way too low already, sitting is uncomfortable, how can that be at only 28 weeks tomorrow?  And forget bending over!  My belly just aches all the time.  Is that how others feel when they’re pregnant?  I didn’t have this until last week… around the same time I started having these feelings with Nora’s pregnancy.  I just can’t imagine feeling this crappy for another 12 weeks.  I mean, I know women go through worse, but… this isn’t fun.  Although neither is having a baby in the NICU for months…  And I wouldn’t say the tightening is painful, more uncomfortable, like I find myself moving to try to get the feeling to stop.
  • My doctor listened to baby girl’s heartbeat, which was in the 140s I think, which she said was good.  Then she measured my belly with the tape measure, and it measured 30cm, so two weeks ahead of where I should be.  She said she wasn’t concerned, that measuring bellies is more an estimate.  My doctor doubts whether this baby is actually the size of the average 30 week baby… probably more just how she is laying currently.  Oh, which is feet down right now.  So perfect if she’s born in the next week, maybe we can have a repeat breech delivery!  Kidding, let’s hope not.  Does anyone reading have experience with not measuring to the week you actually are?  Just curious how common this is and what it means.  With Nora they never measured my belly, I guess we never got far enough!
  • Next my doctor checked my cervix (which I thought they weren’t supposed to do, but she’s the doctor) and she was happy to report that the length is still around 2cm and I’m dilated to just a fingertip, which she said is okay with her, given my history.  She said usually the cervix will completely shorten (efface) before it truly starts to dilate, so being it’s still 2cm long is great.  I mean, it’s shorter than it should be by about 50%, but at least I still have some length!  The fact that I’m not dilated further than a tiny bit tells my doctor that my tightening is not true labor, not yet anyway.
  • Given all my symptoms, and the fact that I am dilated just a tiny bit, my doctor wants to start seeing me weekly.  Ugh.  That’s a lot of driving, but probably a good idea.  Her main concern is, if I am going to have this baby early, the more notice we have for steroids the better.  She said that steroids are most effective the later and closer they are given to delivery, preferably 48 and 24 hours before delivery.  Giving too early can waste their effectiveness so to speak…  Nora’s were given almost exactly at 48 and 24 hours as I was given magnesium to stop labor until we completed those doses, and thankfully, breathing was never her primary issue.

So all in all, I guess okay for now, except for hopefully I pass the three-hour glucose, if that’s where I’m headed next.  I know this sounds selfish, that I should put baby girl’s needs first, but honestly, I just don’t feel right and can’t picture feeling this way for 12 more weeks.  I know inside is better than a NICU though, just trying to wrap my head about feeling this way for an extended period of time.  I remember in the hospital, when I was in active labor with Nora, the nurse kept telling me that this was my new normal, that I wasn’t in labor, and I wanted to punch her.  I was actually relieved when she was born, that all that awful pain was over.  I guess a part of me feels that way now.  So again, lots of guilt.  I don’t wish this baby early, but just this feeling in the back of my mind that my body isn’t acting as it should…

I think I had more I wanted to write about, but I only slept two hours last night, thanks to my pregnancy insomnia.  So I’m off to bed now that Nora is sleeping.  Good night!