Wednesday, April 29, 2009

Bottles Suck, Barium Swallows

Husband and I stayed home from work on Wednesday to be there when the Early Intervention evaluators came. We also took Penny together to Children's Hospital for her barium swallow test. They had a last minute opening for Wednesday afternoon and I figured "let's just make it a day of Penny."

Here's what I thought before the evaluators came: Penny's fine - she's advanced so much the last month or so and I bet we don't qualify for services. [Side note: you have to be 30% behind the norm to "qualify".]

Here's what I am thinking after they were here: Oh, my, God. She's two months behind? And they think it's medical?! Shit. We're never going to figure this out.

Two of the three evaluators are also nurses and they think the reason she's delayed (especially in gross motor and pre-speech) is because she doesn't like to be on her stomach. She's very stiff and is hard to transition her from sitting to standing or vice versa. Penny doesn't actually roll, just flips to get off her stomach. They have recommended we try to figure out a "team" approach with her GI, pediatrician and ENT. In their opinions something is wrong with her medically and it is resulting in her not developing skills normally. Their possible suggestions: adenoids, reflux and delayed gastric emptying. I like the idea of a team approach it is just going to be challenging to get all the doctors and specialists talking to one another.

At the barium swallow study (which she passed with flying colors) the feeding specialist doctor said it was unlikely to be delayed gastric emptying since she eats so much solid food and there is no real way to test for acid reflux.

As I've documented on this blog we've tried a number of meds for acid reflux and nothing helps - if she had acid reflux wouldn't one of them helped?

To summarize: Something is wrong with Penny. No idea what. Sounds familiar.

On the plus side the evaluators were completely amazed how happy and engaging she is. Apparently Penny has a great attention span for playing and is very curious. She definitely brought out the charm. Of course they may leave you with something positive so you don't feel too dejected.

We have another appointment with the GI doctor in a week and a half so I'll be discussing this all with her. Now though I'm wondering whether I get Ned evaluated for early intervention since I know he's not all that much ahead of Penny. Until the GI doctor recommended her evaluation I was going to wait until the kids were at least a year old.

I am trying to keep this in perspective - Penny will probably outgrow whatever is the problem and will catch up eventually in her speech and motor skills - after all my sisters and I were delayed in our motor skills and we caught up (so I can't play video games or most sports that could be more genetic than anything else).

Another side note is that today really drove home how much Husband and I have become co-parents. I was pretty worried when I went back to work that all the kids' appointments would fall to me but since I've been back he's really taken a huge role. I never worry anymore about how he's handling things - I completely trust him and think he's doing a great job even if it is not my way.


Liz Jimenez said...

Such a sweet girl. Glad the swallow study went fine, sorry EI didn't provide any solid answers. Keep advocating, mama. You'll get to the bottom of this.

Nicole S. said...

Must be frustrating to not get answers but little by little, it seems you're getting there. :)

She takes the best pics, by the way!

Cyn said...

You are both such wonderful parents to such a gorgeous little gal. As Goddess said, keep advocating for your sweet P. Things will get figured out.

Shelley said...

Gavin had severe reflux until he was 14 months old (puked 50-60 times daily). We ended up in the ER when he was 4 months old and spit up a LOT of blood. By the time we were released from the hospital, we knew that he had esophagitis (they did a scope), so we began the long road of "what the heck is wrong with this kid?". We tried lots of different meds, had him tested for food allergies, tried multiple formulas, added rice to his bottle, etc, etc, etc..... We ended up changing GI's at about 10 months after no improvement. The new GI diagnosed it as delayed gastric emptying. Gavin could eat a meal and would still be puking 3 hours later! He was gaining weight and eating like a champ, which was the weird part. First, the new GI prescribed reglan. This is a very common medication that is prescribed for delayed gastric emptying, but it's got neurological side effect in a very small amount of kids. My doctor convinced me not to be worried about the side effects, so we started on the medication. After 4doses, we were back to the hospital (frantically) because Gavin was completely limp and out of it. So, I tell everyone that I know is seeing a GI doctor to really think it through before using reglan. It works for some, but was scary for us. They did a CT scan at the hospital and Gavin was fine. What finally worked?? A very small dose of an antibiotic (eurythromycin). It's not to kill off any sort of virus.....something about the antibiotic helps to stimulate gastric emptying. Weird, but it worked.

Anyway, sorry to write a book, but we've been there and I feel for you! :-) Also, we've seen Early Intervention since Gavin was 2 months old....also medical issues causing development issues. So, if you have questions about any of this stuff, please let me know!

Good luck! Be persistent with your doctors and you'll get this figured out! I know it's frustrating!

A. said...

Great teamwork, I'm sure you and Husband will get there. Such a sweet, pretty little girl!! We'll be thinking of you, let us know if we can do anything!

LauraC said...

Reading this reminds me of all of Amalah's experiences with EI. So sorry to hear you still do not have an answer, many good thoughts that this team will help bring resolution.

Stacey said...

Have you looked into hiring or requesting (if covered by insurance) a true patient advocate? It is one of the fastest growing healthcare professions because of the specialization of doctors and need for the team approach you mention. That way you and Aaron won't have to be solely responsible for navigating the complexities of getting a diagnosis.

Just Kristen said...

We have an EI evaluation tomorrow for Luke who is behind Jenson who is behind every kid in their play group...not that I compulsively compare, I swear! I was actually going to cancel it since he picked up a few of the skills I was worried about in the last few days but after what you said...maybe I'll keep it! What the heck do I know!

Rebecca said...

EI is always like that----you really DON'T want your kid to qualify, but they are great services to get if your kid does. Sorry that you are stressed about Penny.

A thought about Ned--for 6 months, only Danny qualified for EI but Abigail worked with the EI person right along side him (she is never someone to be ignored). Once she did qualify, nothing changed except that we paid more. Huh. Of course, you can always talk to the EI person about concerns with Ned and see if she thinks he should be evaluated.

I hope they figure things out quickly for Penny!

Gretchen said...

I'll be thinking about you guys - big hug! You are such great parents and Penny is very lucky to have you both!

CityMarketSally said...

Our baby girl qualified for EI for the exact same reasons as Penny -- gross motor delays. She'll be 6 mos on Saturday and is at about 3 mos with gross motor skills. Your description of flipping off her tummy, stiffness, etc. is the same with Katharine. She's been diagnosed with plagiocephaly and torticollis. Just by looking at your photos of Penny, she doesn't appear to have tort, but it might be something to ask your doctors about.

Donna said...

I am just floored!! If you cannot find out what is going on with Penny, what luck do the rest of us hope to have? I hope you hit on finding the right person to help you soon. This would really irritate me. Penny does look like such a happy little girl, though.

Sadia said...
This comment has been removed by the author.
Sadia said...

I'm sorry you don't have answers, but well done for reaching out for help, and early.

My daughter Melody has just started feeding therapy at age almost-three-years, in part because I thought chalking her picky eating habits to something developmental was being paranoid.

Anonymous said...

Your unathletic ability is not genetic