Daughter keeps losing weight, won't eat.

[Jena]

hi

went to hospital again today for check up. she lost 1/2 pound since last visit on thursday.

doctor's backed up on solids on her to hope that helps get her to start drinking shakes again.

husband and i left hospital with-her stopped at baskin robbins to get her a vanilla shake. shakes still sitting on dining room table. called doctor to schedule the barrium swallow test which their working on now. hopefully that'll be soon.

doctor told me just back off her right now and let's see what she's going to do. if she can't do the shake dont make her. wtf is my reaction.

he said her weight's not at a critical point yet since she gained 5 pounds since discharge, we're holding at 101 now. he said by next week it'll be decision time again if this keeps up.

as always at a loss. truly with this kid.n it doesn't matter what cup is used, what shake is given, none of that matters. and yea medications in place.

 

[Bunny]

I'm sorry that she lost a little weight and seems to be going backwards in terms of being able to eat solids or drink the shakes. Have the pediatrictian gotten back to you with the name of a psychiatrist yet?

Pam

 

[HaoZi]

Maybe time to take her to a movie again?

 

[Jena]

pam

hi no he hasn't. i'm struggling to get a therapist also. hopefully by tmrw he'l give me pyschdoc number. than i gotta get on therapist refeeding place that told me they'd call back today.

movie, no i think it's going to take more than a movie this time. there aren't any horse movies' left out there. we saw all of them and black stallion at home.

weird thing is she saw her father sunday, the scene occured. she asked to call him sunday night i let her. than last nite and monday she didnt' ask. than ofcourse i'm getting texts from him asking can u let me talk to her? wtf i said i dont' control phone. she hasnt' called because she doesn't want to. i have no clue what i'm going to do with-him right now. dont' have time to focus on him.

 

[smallworld]

Hi Jen,

I had a long discussion with my own psychiatrist today about antipsychotics with regard to my daughter A, who is on Seroquel (62.5 mg) and had projective testing this summer. Her testing showed that she has significant difficulties with reality testing, which leads her to form mistaken impressions of what other people are thinking and feeling. That leads her to become a bit paranoid and have some distorted thinking about what's really going on, particularly in social situations. My psychiatrist told me that Seroquel is a weak antipsychotic, and given the level of difficulty A is exhibiting, she believes A should be switched to a more robust antipsychotic like -- get this -- Zyprexa.

I know I sound like a broken record and I know you don't have a psychiatrist in place, but I truly believe C is not making progress because the medications are not strong enough to target her anxiety and distorted thinking around eating. You can blame her father and the lack of therapy and even a potential throat problem (we did the barium swallow test, too, and it turned up nothing), but the truth is she needs appropriate medications.

 

[Jena]

hi

i'm sorry to hear about your daughter, i'm glad the doctor seems good is open to discussing at length the medications and approach to use. As far as difficult child none of us truly do know why she isn't progressing steadily. To assume that any of us have that answer would be rather presumptious. I'm her Mom and am clueless. The seroquel is effective, does sedate and is affective with the sleep now with-the recent increase. Again, i can't and won't mess with-changing medications anymore until i have a pyschiatrist on board. i can titrate up a little on my own, started at 25mg now up to 75mg. yet switching a medication alone with-just my peds who is great i just wont' do.

doing the best that i can as always. we'll c what tmrw brings. again sorry about your daughter. thanks for all your input it's ok you sound like a broken record, yet truth is i wont' change the medications until i have a doctor.

 

[Jena]

oh and getting barium swallow simply because its the last medical test we can do and difficult child needs to know also hey look here's a picture there's nothing in there. she hasn't gotten that concrete of an answer yet. so we'll c.

 

[smallworld]

Jen, I apologize if I came off as harsh. I'm simply frustrated that you haven't been able to get better medical attention.

 

[Jena]

i am also. just think i'm sad tonight. ive hit my wall. some sleep will help. it's just very hard to get this and to watch her go thru this. it's a slippery slope this recovery thing. each day is dreadful and i gotta be soo ontop of it each day. i'm just a bit beat up tonight.

dont' worry i get your hearts in the right place. yet i'd love to get into her head to see what shes' thinking.

 

[Jena]

it's just been a rough few mos. with everyone and all the drama my mom, it just seems like i can't quiet it all to just focus on her. yet that's life ever changing and rolling along i guess

 

[confuzzled]

not to sound dumb, but does your difficult child understand she will have to drink barium for a barium swallow?

and swallow it?

if that is the plan it might be helpful to explain that to your difficult child. maybe with her thought process she will be willing and do it happily, but it can be difficult for a typical eating/drinking kid.

 

[Jena]

yes she knows, yes she is 11 so can only grasp so much. we'll c if she can do it. thats all. here's hoping.

 

[Jena]

today was a horrible day overall for eating. she did only 3/4 of a shake from wendy's, wouldn't touch shakes i made. and had half cup of sherbert this morning. made tomatoe soup for dinner wouldnt' drink it. made the hot chocolate recipe from hospital she wouldnt' drink it.

so, cup of sherbert again. she's constipated because her bodies shutting down again so she doesn't want to drink shakes because she's constipated. yet i said your constipated because you aren't taking in shakes. round and round we go. sooo sick of this ****.

 

[HaoZi]

If she'll drink water can you mix some fibersure into it to help her along? Or those Special K protein/fiber flavor packs? Not much in the way of calories, but if you just want to get some fiber in her it might help.

 

[DammitJanet]

I had to do the swallow test when I was sick after the meningitis. I really dont remember a whole lot about it except it was rather uncomfortable for me because of my size but she wont have that problem. I desperately wanted to be able to swallow because I wanted to drink water, ice and diet coke...lol. Until i passed that test, I couldnt have pure liquid. They started me with a liquid, then some jello stuff, then a cookie. It wasnt much but they could watch it all on a monitor. I know I didnt get to see it. Or I dont remember seeing it. I know they said I passed.

I snuck my first diet coke that night...lol.

 

[Jena]

Janet, diet coke is hands down my favorite drink i'm totally addicted lol!!

barrium swallowing test is set for Monday. Also got an appointment with-refeeding therapist monday afternoon. The pounds are closing in. I only have 3 pounds to play with before they scream hospital. husband and i already decided if she has to go we'll take her to clinic in oregon. the hospital here wont' work for her. so, we're doing everything we can to avoid it. i'm hoping weight's not gone down too much when we go bck to hospital on tuesday.

so far shes' not taking in much. alot of liquids though

 

[susiestar]

I am sorry. I have been hoping and praying she would continue to gain and move past this. If the refeeding person is GOOD, would you consider a MEDICAL floor on a children's hospital? NOT a locked ward or anything like the psychiatric hospital for eating disorders. I am talking about a regular hospital room where you could be with her 24/7 if you wanted? Most Children's hosps encourage parents to stay all night every night and even have relatively comfortable furniture for parents to sleep on.

The place in Oregon does sound like the best fit, but I worry about what you will do after they discharge her. She won't be "fixed" when she is released, though her wait would be up and she would have gotten help and appropriate medications. In a regular children's hospital they could do the psychiatrist consults and the therapist stuff. I think the one place I sent you a link to had a refeeding program and maybe she could be in a regular room there (not on a ward where you couldn't stay like the other place) and get the help she needed inpatient AND after discharge. Even if it was a drive from your place. It has to be closer than OR, lol.

Whatever you decide is for the best, I am sure. Just wanted to throw some ideas out there. I worry about how difficult child would tolerate flying. If she had a panic attack on the plane it could be very hard to handle. Esp with the lack of patience many people have for kids anymore, Know what I mean??

(((((hugs)))))

 

[Jena]

hi

i checked out those links, those places wouldn't take her. but thanks for taking the time to send it and research it for me. i do appreciate it. there are no options here, yet i'm hoping that things turn around with-her before i have to make that decision. today she didn't do terrible, one hot chocolate, and half a small shake, alot of milk and water.

there aren't any of those hospitals here that you speak of, the one that the doctor's are affiliated with and are at they would admit her and not discharge her until she was feeding orally. i got her the sing stand today and i tell you it def. helped the mood. she was singing alot, and inbetween complaining of throat pain as usual.

 

[HaoZi]

Just to toss this out there, would something a little throat-numbing like Halls or throat spray help her any? Maybe re-label the spray with something "magical" geared for her? Or tea with honey? Is she okay with a gentle massage (like those shoulder massage pillow thingys) to help her relax a little?