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Friday, May 04, 2007

Different Points of View

Phone rings

Me: Hello

Caller: It’s Neuro Nurse from Neuro Doc’s office. I have the results of Ellie’s Depakane level. It’s at 75 which Neuro Doc is satisfied with as long as she is not having any symptoms.

Me: She is not having seizures but she refuses to eat.

NN: When did she stop eating?

Me: (thinking: ok this is the 3rd time I have reiterated these same details) She stopped eating shortly after she started the Depakane last May.

NN: Depakane is given to people who have weight gain issues.

Me: Yes, I know. Initially for the first two weeks Ellie at a little more than usual but after that then she refused to eat full stop. Are there any other seizure meds we can try or is there something natural I can give her to increase her appetite? I think the Depakane is taking away her appetite.

NN: Doesn’t she have a g-tube?

Me: Yes, but she used to eat all her pureed foods. She would eat 1.5 cups in 10 to 15 minutes. She even used to make a little mmm, mmm sound as she ate. She liked her food.

NN: (long silent pause) Why was the g-tube placed?

Me: When she was in the NICU because they wanted to send her home. I regret that decision because it masked neurological pressure symptoms later on and greatly increased her reflux.

NN: If she is keeping the food down and is symptom free we wouldn’t want to change the medication.

Me: She is not symptom free. She’s stopped eating. It’s a quality of life issue. She CAN eat but won’t at this point and all of that coincided with her taking Depakane. Her dysphasia is so much better at this point. She had a swallow study and was cleared from thin liquids. We don’t always want her to have a g-tube because I know she can eat. I know she used to enjoy eating.

NN: Well, sometimes Depakane can affect the palate. I will run this by Neuro Doc.


Me: Thanks.

9 comments:

Lisa said...

How absolutely frustrating.

You know what I don't like? I get that medical staff are not gods who can solve every problem and that people are going to have different ideas and that sometimes doctors just don't know what to do. I appreciate that. But I hate when the tone (which, I could be wrong, but it seems here) gets a bit defensive and hostile like your kid isn't fitting in with our standard of care so what do you expect us to do about it? Like the book says this medicine does X and you say your kid is doing Y so you are just wrong.

Anyway, I hope you get this figured out. G-tubes are great as a necessity as opposed to NG tubes but eating is always going to be healthier and more enjoyable.

Jacqui said...

I think NN would think differently if she had a g-tube and couldn't eat orally. Geez - some people.

Anonymous said...

Arghh! What a condescending, disrespectful, and rude nurse. Here's my take - It sounds like she thought she was going to have a quick phone call delivering the news that "everything is just fine", and she had no interest in what was really going on and no interest in Ellie.
I think rudeness masqueraded by "that tone" is the worst. It can make you think that you were unreasonable. Don't let it fool you. Speak to the neurodoctor directly. And what about your primary doc - can he/she help problem solve? Eating and oral development (speech, saliva management) is a high priority in a little one's life.
Janet

Lisa said...

Kathryn, You may have seen this before, but I thought you might enjoy it:

Staff Personality Disorder:
http://isnt.autistics.org/dsn-staff.html

(Sorry, I don't know how to do links very well in comments.)

Emma said...

Drs annoy me so much. My sister started taking the pill and then started fainting regularly about a month later. They swore it wasn't the pill when she asked. Then the fainting got worse a couple of months later and her blood pressure went up so she came off the pill. She hasn't fainted since. Moral of the story being push those doctors to listen and do what you want. Personally I would keep fighting them on this. L, Emma

Anonymous said...

When my son was younger, his gastroenterologist referred us to a fabulous speech therapist who specialized in eating issues. She helped with all the oral sensory issues, which made a huge difference in my son's ability to tolerate textures, and use his tongue and oral muscles appropriately. I'm guessing you could find such a person at a pediatric university center.
Janet

Kelly said...

I hate conversations like that. Clearly, they just don't see beyond the here and now.

That said, I'm really curious that your daughter has stopped eating. My girl did this as well, after a long status seizure. I've resolved myself to the fact that maybe she has just lost that skill, but she is improving in other areas. She was never on Depokote though. I totally understand your frustration.

Jenelle's reflux eventually subsided, I hope your daughter's does too.

Kathryn said...

Thanks to all. Yes it is FRustrating! I think it might be time for a new neuro doc. Ours seems a little complacent and a little removed at this point. I feel like I am getting one big eye roll on this one. It seems like they don't care about her eating. Like is a secondary thing in life. Geez!

It's true Jacqui - if they had g-tubes exascerbating their reflux issues they might feel differently. I have still not received a call back from NN days later. That is how it has been - I have to call and call and call.

Kelly - I just read a lot of your blog. Wow - amazing work you have done at home and for the entire Epilepsy community. I don't think of Ellie as having Epilepsy - so I haven't ever researched that route. But I guess seizures are seizures. So if you don't mind telling - what is Jenelle on for meds for her seizures? Also, have you ever tried that high fat diet? I am not sure Ellie would start eating if all I wanted to feed her was oil -but if I could get her off the med to let her palate start tasting again and let her appetite come back it might be worth it. By the way - Jenelle is absolutely gorgeous. I was thrilled to see her sitting up on her own! That is huge progress.

Yes, NN and ND - please look at my child's WHOLE life, not just her neurological symptoms (which no mother could compartementalize).

Sigh.

Eliza said...

This is the first post I've read of yours, and oh lordy do I ever hear ya. My youngest has a g-tube for various and sundry reasons and we didn't use it at all for about four months--the kid was totally P.O. and even nibbling at some table foods, enjoying food, asking for it, etc. and then got sick and BAM! No more eating. It's been months, and I can't get anyone very excited about this...they're all "well, doesn't the baby have a g-tube???" YES, DAMMIT, BUT THE CHILD WAS EATING AND HAS TOTALLY STOPPED!!! Since nutrition and hydration are not an issue, everyone seems content to shrug their shoulders, and I realize it's not a medical emergency, but...well, I don't have to tell you how frustrating that is. I'm adding you to Bloglines--thanks for this post. It helped me to know I wasn't alone in this predicament (as you well know, it's not something other moms at the playground generally like to discuss or have any good input on), so I thought I'd share. Misery loves company, right?