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Friday, December 16, 2011

Answers From a Baby

Here are parts ONE, TWO, THREE and FOUR.  And can I just tell y'all thank you... thank you so much for all of your prayers and emotional support this past week.  It would have felt like a much more difficult week without y'all.  Every! single! comment made me feel better.  Thank you to everyone, especially those who shared personal experiences, and those of you who've been praying for us.

The Tongginator came home on Saturday, and it felt so very good to have both my girls tucked snugly in their beds that night.  We had a relatively uneventful weekend, and on Monday morning we all headed out to drop off the Tongginator at school before driving to meet with the pediatric neurologist.  I briefly spoke with the Tongginator's primary teacher and her math teacher.  They were wonderful about her absences the previous week, and had sent home many assignments on Friday with another second grader from our bus stop.

Which was very helpful.

After we left the school, we headed to Annapolis to meet with the pediatric neurologist.  This was the guy everyone said we needed to see.  He came highly recommended and, at first, we couldn't get an appointment with him until February.  But some calls were made, and the husband didn't take no for an answer, and all of a sudden we were seeing him less than a week after Squirt's seizures.

Answered prayer.

When Dr. D first walked into the room, I about had a heart attack.  Because - ya know - I'm not exactly a spring chicken, but I also haven't hit my fortieth birthday yet.  And this guy?  This rock star everyone raved about?  He looked like I could have babysat him once upon a time.  I'll admit, it made me feel nervous.

(I'm sure he's much older than he looks.)

(I keep telling myself that, anyways.)

But everyone was right.  Dr. D is ah-maze-ing... really and truly amazing.  He made Squirt feel comfortable right from the start, which is saying something after the week she'd just had.  He made both the husband and I feel comfortable even though I still pictured him at a frat party somewhere.  And he spent an entire hour with us, patiently explaining things and answering our myriad of questions.  We know much of neurology and endocrinology is a guessing game, but it helps to have smart people guessing at it.

Basically, everyone (and by everyone I mean her pediatrician, three ER doctors, the pediatric neurologist and a pediatric endocrinologist) thinks Squirt may have hypoglycemia, but they all also believe that the hypoglycemia did not cause the seizures.  We'll be doing toe and heel pricks once a day, before breakfast, for the next few months to confirm that potential diagnosis.  As for the seizures, one of two things probably happened.

Both of them are pretty rare.

The first option is great, and the second is...okay.

With the first possibility... Squirt may have had febrile seizures.  I know, I know, three to five percent of all children have at least one febrile seizure in their lives, Tonggu Momma, so why are you saying they are rare?  Well, I'll tell y'all.  Squirt didn't have a fever.  She didn't have a fever the night before the seizure, nor the next morning just before or during the seizure.  She felt slightly warm and damp when I picked her up, but she'd been cozy under her blankets, with the humidifier going in her room all night.  When the paramedics arrived and took her temperature, she was at 98.something, and she had the same temperature just before and after her second seizure.  So... no fever.  She also didn't have a fever during her possible seizure this past summer.

We spoke with Dr. D about this, and he told us that he has seen over 7,000 patients in his career.  Now, not all of them visit his practice because of seizures, and many of those with seizures don't have febrile seizures, but of the ones who do - which total in the high hundreds - he can count maybe a dozen or so who have febrile seizures with no fever present.  They are a little bit sick, maybe, with a cold or just coming down with a virus, and bam... seizure.  He said it's not well known, but it does happen.  The ER doctors didn't mention it as a possibility; in fact, they ruled out febrile seizures as an option when I asked.  And when I googled "febrile seizures no fever" after our appointment, I couldn't find anything about it either.

So I guess it is pretty rare.

But it's possible.

As for the second possibility... well, it's not the best news, but it would explain a lot of things. Basically, Squirt may have a rare metabolic disorder of some kind. Now, these are extremely, extremely rare - Dr. D has only seen this diagnosis five times in his career - but it would explain the many digestive issues we've faced: excessive urination; the UTI and mild renal reflux; the funny smell to her pee that comes and goes; the once-a-day, it's-normal-for-her diarrhea; so many things. It would also explain the seizures, and even Squirt's extreme developmental delays.

Then again, a body recovering from malnutrition would explain many of these digestive symptoms as well.  And the developmental delays could exist simply because of institutionalization, with no additional reasons.  And the seizures could just be febrile seizures sans fever. Not to mention the possible hypoglycemia, which may cause all of this, too... well, except for the seizures, unless Squirt has a really low threshold and a glucose level of 48 to her equals that of 22 for most everyone else.

When one hears "metabolic disorder," the first thought is usually "scary, scary, scary, scary."  But fortunately for us, we have time on our side.  Because the really terrifying metabolic disorders are typically present at birth, and require immediate treatment for the infant to survive.  Our Squirt is nearly 18 months old; and there is no way anyone could even think to diagnose her with failure to thrive.  Which means that if she has a metabolic disorder of some kind, which is statistically unlikely, it's probably a mild to moderate one.  And it's most likely highly manageable.

We are praising God for easing our worries before they even took hold.

Life can be hard, but God is good.

We saw a pediatric endocrinologist on Wednesday.  For over two hours.  Squirt's undergoing continued testing to confirm the hypoglycemia and rule out any and all metabolic disorders.  Everyone has told us to prepare for the long haul.  Because sometimes it takes quite a while to determine if there is a metabolic disorder, much less which one it might be.  I told them that's okay.

I'm good at waiting now.

Five years teaches a lot.

24 comments:

Cedar said...

Life is hard, but God is good...all of the time :) I'm studying 1 Peter right now and it has a lot to say about that; though I guess so does a lot of other books in the Bible.

As far as learning how to wait...I guess God thought I needed six years to learn the lesson. Very happy for you all that you only needed 5 :)

Jboo said...

Keeping you all in my prayers and sending a big ol' hug right thru the computer.

janet

Reena said...

I am glad that you were able to get an earlier appointment. Many prayers for squirt and your family.

Aus said...

Morning TM - y'all are obviously right where you need to be - even if the doctor is a "kid"! I've noted that the older I get (I've passed 50 a minute or two ago) the more they ALL look like kids!

Prayers for continued progress - I'm still leaning toward a blood sugar thing myslef - and betting that she will 'out grow' the problem too!

hugs - loads of them for all y'all -

aus and co.

Stefanie said...

What a blessing you have such a wonderful medical 'team' to rely on!
God continues to hold her in the palm of His hand :)

Foxxy One said...

Sounds like you have a good team on your side! Are they going to do any genetic testing? My son came home from Guatemala and, less than a week after we were home, had back to back seizures. No fever, basically said they were "idiopathic" in nature (unexplained). flash forward about 6 years and a new doc asks us to do genetic testing. He has a 16p11.2 deletion and one of the common things with kids with this issue... idiopathic seizures.

I hope you get answers for your sweet baby soon.

Essie the Accidental Mommy said...

I sure hope your little Squirt is OK!!!

I wanted to tell you, my daughter was adopted from Ukraine by another family. She developed what is called "adrenal insufficiency", and her body stopped making cortisol. Essentially, she felt so much stress that she burned out her ability to produce it at all. It is very serious, but quite manageable. Your daughters symptoms sound a bit like mine and so I thought I would pass that on.
It's important to note that while this is rare in the general population, it is not as rare in children adopted internationally and there is some research/info out there to work from.
Anyway, good luck to you and your family. If you want to email me you can feel free to ask any questions if you think this sounds familiar!

Briana's Mom said...

You are definitely the queen of patience! :D

So glad Squirt is doing better. I'll continue to pray for your sweet girl.

Journeywoman said...

More prayers for your little Squirt.

Polar Bear said...

You all have been in my thoughts and prayers. It is so hard to see our little ones so sick.

I am glad you were able to get in to see such a good doctor. That is always such a relief. I hope each day is easier and seizure free.

Hugs to all of you.

Rita and John said...

I rarely comment, but I have been a follower for a while. Keeping you all in my prayers. What a scary time for you and your family, but thank goodness you have such wonderful people helping you help Squirt.

Debby said...

The one good thing that will come out of this is that they will be watching and testing your baby very closely and that will be in her favor. Since she has had more than one issue and with the rest unknown this is important. With time and love and nurtrition she may just outgrow all of this. So glad that you got answers and have patience.

Donley Farm said...

TM,

I continue to keep you and your entire family in my prayers. I can't imagine what you're going through.

I do want to echo what "Essie the Accidental Mommy" said. Don't discount the fact that adopted children have higher rates of "rare" medical conditions. It sounds like you have a great medical team assembled but please consider consulting with a neuro/dev/ specialist that sees a high population of adopted children. We did and I can't tell you what a difference it's made!

Take a deep breath. And thank you for sharing your experiences with us. The more that we adoptive parents share what happens to us and our children, the more we'll realize that we're not alone.

~S

Amy said...

So thankful for smart doctors, and so thankful you all have found one! Praying...

Molly said...

TM, I've been following this medical saga and I don't have any children (or experience) yet, but I just wanted to say that you, the Husband, the Tongginator, and Squirt are in my thoughts as you navigate the choppy waters of a diagnosis. I wish you peace and joy and an utterly uneventful Christmas with your amazing family. :)

lmgnyc said...

Holy cow, when you said "metabolic disorder" I about passed out. Thank you for reassuring me in the following sentences. :-0 Holy cow. What a scare.

Sending you continued good thoughts for strength and answers.

autumnesf said...

Whew. Hoping the answers come fairly quickly regardless of how pro you are on waiting now!

LucisMomma said...

Squirt and all of you have been in my prayers for a while now.

Thanking God that she is HOME where medical care is much quicker to come by, and that you live so close to Dr. Fabulous.

(I know what you mean by the doc seeming so young! I'm getting to the point where almost EVERY medical person I see is younger than I. Don't like that.)

Wendy said...

So glad Squirt is doing better. I have pretty severe hypoglycemia myself, but I'm happy to say that it's pretty easily managed with eating several of the right kind of small meals a day and knowing how to recognize the symptoms of a low blood sugar attack before they get serious.

Praying that Squirt's medical issues are resolved quickly and that you all have an uneventful Christmas!

Cavatica said...

Catching up here. Wow. Glad you're all home and beginning to figure this out. You will in a journey. Keep us posted.

Suzy said...

Oh, TM. So glad you're home and the news is somewhat encouraging.

CC said...

Hugs, hugs, hugs!!!! Sounds like you've been dealing with LOTS of goo recently too :(

3 Peanuts said...

Oh my TM...where to begin... I just read all 5 parts and my heart was breaking for you and Squirt the whole time. First, I am so glad she is okay right now. Secondly, I have been down this road before..TWICE. Will had a few seizures when he was 18 months old. It was terribly frightening. We had EEG's and CAT scans..he had had birth trauma and head surgery so we were so scared. But all was normal and he has never seized again.

Kate also had two seizures. She did not have fever but she DID get the flu in between the seizures. One was a few days before and one was a few days after (the flu) but within a week of each other. But she did not have a fever either time. I know I blogged about it. We too had the EEG's and ped neurologist appts. She never had another one either.

And I laughed about the hair...cause Will had full curly hair and he looked SO cute after his eeg ...it made his hair all full and curly. I am going to have to dig out a photo of that. Kate...not so much.

I will pray for lil Squirt. I am hoping that she will be RARE like Kate to have a non fever febrile seizure cause I am sure that is what Kate's was in retrospect.


I feel for you because I know the worry. I know the blur of not knowing what happened. I know calling 911 and the ambulance showing up for your child. it is all so scary. I even know the going to the hospital with no bra and that is the worst!


Big hugs to you.

3 Peanuts said...

Oh I just read all the comments and I have adrenal insufficiency...I take cortisol every day cause my body is not making it....if that is at all what it ends up being....feel free to e-mail me too. I can tell you what I know.

K