Monday, January 18, 2010

Nika ... and some of her doctors.

Pediatrician ...

A couple weeks ago, Nika had her three-year well visit with our pediatrician. The visit went well, however there were a few things I wanted to discuss with her.
  • After we received Nika's referral in Russia, we saw that her medical record stated that she had a Grade III brain bleed at birth and semi-compensating hydrocephalus ... those were the translations, anyway. These two things were obviously a concern to us and we needed to know more information before we adopted her and brought her home.

    We were very lucky to be able to have her seen in-country at the American Medical Clinic. They performed an ultrasound that revealed no evidence of calcifications on her brain --
    which may have been there if she really had a brain bleed -- and no evidence of hydrocephalus. Where these diagnoses came from ... I don't know. Heck, I don't even know that an ultrasound was enough to detect what we were looking for, but it was enough for us to bring her home.

    That said, the one thing we did find out during the ultrasound was that her ventricles were measuring a tiny bit large ...
    as in, a couple milimeters larger than the standard for a child her age. Ahh, so many variables there. Anyway, these things have always sort of been kept in the back of my mind ... not knowing whether or not they really meant anything -- or if they were even true.

    A few weeks ago, I was reading an article that showed a link between enlarged ventricles and balance.
    Imagine that. So then the question comes in -- is Nika's lack of balance just a low muscle tone thing or is it something more?

    I asked our pediatrician about this and she feels that Nika would be showing more external symptoms if she really had something serious going on. And given the fact that she seems to be doing just fine, it isn't worth sedating her for a CAT scan to see if something really is going on.

    All I can do is trust her.
    And for now, I do.

  • Over the summer, we realized that Nika does not sweat. I discussed this with our pediatrician and we agreed that I need to pursue it further at our local Children's Hospital.

  • We discussed the fact that Nika does not get any one-on-one therapy at school -- and that is a battle I've already fought. She does ... however ... get private speech and physical therapy through our insurance and her Medicaid -- thank the Lord for that. Our pediatrician and I discussed also getting her occupational therapy, as it is clear she would benefit from it. I told her I have chosen my battles thus far, but agreed that I have been thinking about getting her an OT evaluation and so that is what I am going to do.

  • Nika is almost caught up on her immunizations. She still needs a couple booster shots, but enough time has not lapsed yet for her to be able to get those. Oh ... and we still have a year to go before she will be getting any MMR vaccines.

  • We discussed Nika's two bouts of strep throat over the past month. Just to be sure that this last round of antibiotics got it all out of her system, we tested her again and sent it to the lab ---> negative, finally!
Geneticist ...

Last week, Nika saw our geneticist. A few people have asked us
why we see a geneticist and I guess the answer is that our geneticist basically serves as a developmental pediatrician for us. I discussed all of the same concerns with our geneticist and came to all the same conclusions. I got scripts for our annual bloodwork and got Nika's stats ...

Weight -- 26 pounds, 10 ounces
Height -- 35 1/4 inches

Down syndrome growth chart -- Weight: 25th percentile, Height: 75th percentile
Typical growth chart -- Weight and Height: 10th percentile
across the board

So yeah, that is why everyone is so surprised when I tell them she is three years old.
Oh, she is so tiny! Yes, I know this people. She is in the bottom 10% amongst her peers for size.

Sleep lab ...

This past week, I had a follow up appointment with our sleep lab to discuss Nika's second sleep study.
The first one was inconclusive.

So the bottom line is that Nika does have obstructive sleep apnea. The specialist that we saw told me that textbooks do not give guidelines to classify children Nika's age in a category --
be it mild, moderate, etc. This sort of confused me, since we have previously been given a diagnosis of moderate sleep apnea for Payton, but whatever. The specialist basically told me that he believes Payton was classified using adult guidelines, which clearly you cannot do for young children. Sigh.

At the end of the day, Nika had approximately
four episodes per hour that she stopped breathing while asleep. The specialist said that if he had to classify her into a category, for a child her age he would say moderate obstructive sleep apnea. Being as though Payton had way more than four episodes, I guess he would have diagnosed her with severe.

Who knows.

Beyond that, during each episode, Nika's oxygen is dropping to 89% ... while she is maintaining 98% the remainder of the time. That was quite concerning to the specialist.

His recommendation is that she have her tonsils and adenoids removed. Given her extremely high and narrow palate, he also told me that I might want to consider a palate expander for her --
and for Payton, actually. He told me that expanding their palates would allow for air to move more properly and blah blah blah.

Next step --> meet with our ENT to discuss the sleep study and the specialist's recommendations.
I guess surgery is looming.

ENT ...

While we were at the sleep lab, I stopped into the ENT's office since it is right next door. Nika's nose has been a junky mess, even after being on antibiotics for two rounds of strep in the past month. They agreed to squeeze us in ... thank God they did. Our pediatrician can't really see in her ears ... although they try to claim they can. Riiight.

Our ENT took Nika under the microscope -- double ear infection. That ... in addition to her junky nose = one round of Omnicef. And if the nose is not clear after the 10 day round, refill it for another 10 days. Oook then.

When is it summer again?


  1. Oh, hugs for the girls (and you!)....hoping summer comes soon!

  2. Hi Bethany you Mentioned in another post about core strength PT for Nika can you email me a few tips, only if when you have time. Thanks. Aden’s a bit behind where Nika is and his core strength isn’t good. So the PT says but they give us nothing to help, ahhh.
    An expander really? What are your thoughts are you going with this?
    Hope summer comes quick for you, that will bring us closer to winter sigh.

  3. I was exhausted just reading your post! It's always so much information to digest and each appointment always seems to lead to 2 more somehow...thank god these girls (and Mason) have you as their Mom! Hope Nika's ears are better real soon :)

  4. Perhaps I should have Lera's brain checked - that girl is more uncoordinated than anyone I have ever seen (and Caeli is full of grace too). She doesn't manage to effectively walk a straight line - I think that may be why they put her in glasses at the baby house although our ped eye doc said he could find no reason for them. Gotta love doctors, right?

  5. Well, regardless of all the doctors, she is perfectly adorable!!! I hate going to/taking kids to/being within 20 feet of the doctor's office. So I'm sorry about all the times you've had to go this winter. As for the geneticist, it's like my pediatrician said, "I've always believed that specialized medical issues need specialized doctors." I love her for recognizing that she isn't a specialist! My "typical" child has an ENT, allergist, and regular pediatrician. So I'm sure Sarge will have his team of doctors as well! :)

  6. Lots of appointments!

    I am waiting on Summer as well. The sickies just keep getting shared in this house!

    Hope Nika feels better soon.

  7. It was mentioned at one of Hannah's appointments(I think with the Down Syndrome clinic) about her high palate. They haven't mentioned nor have I looked into exactly what it is. It sounds painful! Do you have a link for more info on it?