I need help...long. - Page 3

aeraen · 01-13-2007, 02:04 PM

I didn't see this before, and I just wanted to offer another experience.

My niece stopped eating at 17 months. They finally took her to the ER, who admitted her. For a week they ran tests for blockage, etc... were even talking leukemia (frightening because her cousin DID have leukemia at 3 years old!). After 5 days they finally realized she had ciliac disease... a severe allergy to glutens found in wheat, oats, barley. Since nearly everything she ate had some gluten in it, her little tummy looked like raw hamberger.

She is now a beautiful, athletic 16 year old who has to watch what she eats like a hawk. She's used to it, and doesn't complain in the least. I guess, considering the alternatives the DR.s were suggesting, she's pretty lucky.

If they haven't already, you might want to have them check for ciliac disease.

CatieTN · 01-13-2007, 02:22 PM

Any news? How is GD doing?

Screamer · 01-14-2007, 05:08 AM

Good amorning everyone, Once again thank you for all your support.

At this point the Dr's are treating it as a control problem. They have taken away her prized posessions, binky, boo boo bear and blanket, until she eats something.

Everyone tries to reason with her, in her own liitle way to the Dr's coming in to explain to her in big people terms. Nada.

They have even resorted to tying her down to force feed her. She is one stubborn child.
They will try this method again today. Monday they will start family therapy. I'm heading up there this morning.

Mi

glasskat · 01-14-2007, 07:20 AM

Quote:

Originally Posted by aeraen

My niece stopped eating at 17 months. They finally took her to the ER, who admitted her. For a week they ran tests for blockage, etc... were even talking leukemia (frightening because her cousin DID have leukemia at 3 years old!). After 5 days they finally realized she had ciliac disease... a severe allergy to glutens found in wheat, oats, barley. Since nearly everything she ate had some gluten in it, her little tummy looked like raw hamberger.

She is now a beautiful, athletic 16 year old who has to watch what she eats like a hawk. She's used to it, and doesn't complain in the least. I guess, considering the alternatives the DR.s were suggesting, she's pretty lucky.

If they haven't already, you might want to have them check for ciliac disease.

I agree! Please have them test her blood for Celiac! It is a simple bood test (but the type of tests ordered are CRITICAL!). Per Dr. Peter Green, an expert on the subject, the following tests are necessary:

1. IgA endomysial antibodies (EMA)
2. IgA tissue transglutaminase (tTG)
3. IgG tissue transglutanimase
4. Total IgA antibodies

I have read case after case of FTT (failure to thrive) young children who are made so sick by the foods that they refuse to eat anything at all.

Jenn_in_NJ · 01-14-2007, 07:47 AM

I hope you get some good news soon.

The celiac/gluten is interesting. My son has autism. When I read about your GD's switch from normal to lethargic it reminded of of the absence seizures my son had when he was around 3/4. We had to have a 24 hour EEG and they found he did have spikes in brain wave activity. I don't know if an MRI would show seizures.

Also, parents of children with autism put their children on gluten-free casein-free diets and have had great results.

Crohnie · 01-14-2007, 08:16 AM

how about UC? I was pretty sick when I was little and wanted no food

auntiem59 · 01-14-2007, 08:49 AM

Quote:

Originally Posted by Screamer

Good amorning everyone, Once again thank you for all your support.

At this point the Dr's are treating it as a control problem. They have taken away her prized posessions, binky, boo boo bear and blanket, until she eats something.

Everyone tries to reason with her, in her own liitle way to the Dr's coming in to explain to her in big people terms. Nada.

They have even resorted to tying her down to force feed her. She is one stubborn child.
They will try this method again today. Monday they will start family therapy. I'm heading up there this morning.

Mi

Oh Mi, this is so heartbreaking.

Nady · 01-14-2007, 09:07 AM

Quote:

Originally Posted by Screamer

Good amorning everyone, Once again thank you for all your support.

At this point the Dr's are treating it as a control problem. They have taken away her prized posessions, binky, boo boo bear and blanket, until she eats something.

Everyone tries to reason with her, in her own liitle way to the Dr's coming in to explain to her in big people terms. Nada.

They have even resorted to tying her down to force feed her. She is one stubborn child.
They will try this method again today. Monday they will start family therapy. I'm heading up there this morning.

Mi

Somehow, this just sounds to me like it's the exact opposite if what will work~ I raised stubborn children~ you need better answers than 'I can force you because I'm bigger'~

~~~N

silkandsand · 01-14-2007, 11:34 AM

WOW.

I don't think this sounds like a control issue at all. I think there's a bigger problem at hand. I can't imagine a perfectly healthy child allowing people to poke and prod her with iv's and tests just so she doesn't have to eat and she can "win." I really hope the problem is figured out very soon. Poor kid--and all of you who love her.

megpie · 01-14-2007, 11:47 AM

I also don't think you can reason with a 3 year old. I doubt those tactics will work.

I would definitely encourage the blood work for the gluten issues. I'd also just put food around her bed and then ignore it. Put a variety there. Sweet, salty, savory, warm, cold. And then leave it alone. If it's control, she'll eat when someone isn't watching her.

Nady · 01-14-2007, 11:55 AM

Quote:

Originally Posted by silkandsand

WOW.

I don't think this sounds like a control issue at all. I think there's a bigger problem at hand. I can't imagine a perfectly healthy child allowing people to poke and prod her with iv's and tests just so she doesn't have to eat and she can "win." I really hope the problem is figured out very soon. Poor kid--and all of you who love her.

Maybe, maybe not~ right now, she is the center of attention~ Maybe the tests aren't fun, but everyone is focused on her, worried about her. My sis told me once that even as young as 4, she can remember thinking "they'd be sorry if I died" when she was in a power struggle with my parents~ she said she didn't really understand death, but knew how upset everyone was when someone died.

Sounds sad~ but right now, whatever was going on in her home/family is suspended because she isn't eating. Maybe the key to this is to find out what upset her in the first place~
~~~N

Screamer · 01-15-2007, 07:06 AM

Good Morning Everyone. Still no cahnge in DGD. She is still on IV meds. They are giving her Zanax to help keep her stomach acid from eating away her stomach lining. Sometimes I think it is more than just attention seeking. Something scared her into not wanting to eat. Today psyche/med is starting therapy and hopefully find something deeper.

Yesterday while I was there, April left the room to see if she might open up to me. While we (me and DGD) were talking about everything other than food, she said in a very matter of fact way "I don't wanna eat, Gramma." I said why? She said I don't wanna a cheeseburger. I said, I like cheeseburgers sometimes, once in a while they are ok. She said - 'I just wanna cry'. I wish I knew the right thing to say to pull it out of her.

After that she dropped the food angle and we talked about football on TV. I told April this and she will relate it to the Dr.

Every once in a while she points to her mouth. I asked her if her teeth hurt and she just said noooo....

I just want something/anything in her little brain to snap and want to eat again.

Mi

OldSchoolGirl · 01-15-2007, 07:20 AM

Mimi, wow, I'm so sorry that this is still going on for you! I keep checking the thread and praying and hoping that someone unlocks the key to whatever is happening in your grandbaby's body/mind. Don't give up hope!!!

OldSchoolGirl · 01-15-2007, 07:34 AM

I just can't get this off my mind. If it IS some sort of extreme manipulation for attention, (which would blow my mind), would it be possible for the parents to stay away for a day and see if she would eat so she could see them or go be with them again? You mentioned she has a little brother, maybe if she is jealous of her loss of total attention she would change if she felt it start happening again. I know that sounds almost cruel if she really is physically ill, but it would only be for a day or a few hours a day or even just a "shift" a day and you or someone else could of course stay with her during that time.

Also, is there some kind of toy or something that she really really wants that you could sit in the room and tell her she can have it when she eats? I know, it also sounds cruel if the origin of the problem is physical but I'm trying to brainstorm for you, Sweetie!

Denise85 · 01-15-2007, 07:35 AM

It's possible she has an ED. Is anyone diet obsessed in her house or that's around her? Kids pick things up from their environment. I used to babysit a 7 year old that was anorexic. She learned is through her mom who was always dieting. She used to tell me that food was poison, and that she couldn't eat. I'm praying for her, and hoping they find something out soon.

Caro · 01-15-2007, 07:49 AM

i keep checkin in to see if there is any progress!!!

silentkate · 01-15-2007, 08:16 AM

I hope they figure out what it is soon.

tori_lk · 01-15-2007, 08:52 AM

praying for her!
Tori

MissBoop · 01-15-2007, 08:58 AM

OMG! I haven't been online in a few days, I can't believe there's still no progress.

I'm praying for her Mimi, I know you all must feel so helpless, frustrated, worried...many mixed emotions.

Seelessofme · 01-15-2007, 09:08 AM

I can't get this off of my mind, either. I agree with OSG that this would be a powerful manipulation and a huge amount of strength from such a small person. I hope that the psychological evaluation is able to give some insight. I am hoping that some sort of play therapy or art therapy might draw out some clues about what is really going on.

Lots of hugs to all of you.

Tylar_Connar · 01-15-2007, 09:22 AM

Oh Goodness still not change...WOW!!

Lisa M · 01-15-2007, 09:27 AM

I've just read this thread. How sad and helpless you all must feel.
I remember reading an article about anorexia. One boy said when he was 5 he had a voice in his head telling him not to eat and he didn't. They took him to all kinds of dr.s before they determined it was a psychiatric problem.
I hope they find the cause soon.

averyjenn · 01-15-2007, 09:58 AM

Oh the poor little thing. Praying for her.

Nady · 01-15-2007, 10:24 AM

Quote:

Originally Posted by Screamer

Yesterday while I was there, April left the room to see if she might open up to me. While we (me and DGD) were talking about everything other than food, she said in a very matter of fact way "I don't wanna eat, Gramma." I said why? She said I don't wanna a cheeseburger. I said, I like cheeseburgers sometimes, once in a while they are ok. She said - 'I just wanna cry'. I wish I knew the right thing to say to pull it out of her.

Could something have happened the last time she had a cheeseburger? Maybe something at McD's? Could it be possible that cheeseburgers were a favorite food but now are associated with something unpleasant?

This sounds like an important piece of info~

Hope you get some answers today~
~~~N

OaklandRaiders15 · 01-15-2007, 10:36 AM

Any results/progress from the therapy?

Screamer · 01-15-2007, 10:37 AM

Quote:

Originally Posted by OldSchoolGirl

I just can't get this off my mind. If it IS some sort of extreme manipulation for attention, (which would blow my mind), would it be possible for the parents to stay away for a day and see if she would eat so she could see them or go be with them again? You mentioned she has a little brother, maybe if she is jealous of her loss of total attention she would change if she felt it start happening again. I know that sounds almost cruel if she really is physically ill, but it would only be for a day or a few hours a day or even just a "shift" a day and you or someone else could of course stay with her during that time.

Also, is there some kind of toy or something that she really really wants that you could sit in the room and tell her she can have it when she eats? I know, it also sounds cruel if the origin of the problem is physical but I'm trying to brainstorm for you, Sweetie!

They have tried taking away her binky (pacifier). To no avail. They will remove Mommy and Daddy with the next round of 'therapy'.

I am brainstorming and have since the 5th. With each lightbulb moment someone or something turns off the light.

Thanks OSG.

Screamer · 01-15-2007, 10:42 AM

Quote:

Originally Posted by Denise85

It's possible she has an ED. Is anyone diet obsessed in her house or that's around her? Kids pick things up from their environment. I used to babysit a 7 year old that was anorexic. She learned is through her mom who was always dieting. She used to tell me that food was poison, and that she couldn't eat. I'm praying for her, and hoping they find something out soon.

Wow this just hit home for me. Her mom just had her gall bladder removed in September and April went through some of the worst time with this. She is a SHAM so DGD saw everything she went through including surgery and the recovery. April did not have a real bad time with recovery but she had trouble eating.

This is going on the list.

Big light bulb moment.

Mi *encouraged.*

Nady · 01-15-2007, 10:46 AM

Quote:

Originally Posted by Screamer

Wow this just hit home for me. Her mom just had her gall bladder removed in September and April went through some of the worst time with this. She is a SHAM so DGD saw everything she went through including surgery and the recovery. April did not have a real bad time with recovery but she had trouble eating.

This is going on the list.

Big light bulb moment.

Mi *encouraged.*

Maybe a second light bulb~ did a cheeseburger make mom sick before (or after) the surgery? Could she be associating eating with getting sick like mom did?
~~~N

01-13-2007, 02:04 PM	#61
aeraen Way too much time on my hands! Join Date: Feb 2003 Location: Witless Protection Program Posts: 11,483 Gallery: aeraen	I didn't see this before, and I just wanted to offer another experience. My niece stopped eating at 17 months. They finally took her to the ER, who admitted her. For a week they ran tests for blockage, etc... were even talking leukemia (frightening because her cousin DID have leukemia at 3 years old!). After 5 days they finally realized she had ciliac disease... a severe allergy to glutens found in wheat, oats, barley. Since nearly everything she ate had some gluten in it, her little tummy looked like raw hamberger. She is now a beautiful, athletic 16 year old who has to watch what she eats like a hawk. She's used to it, and doesn't complain in the least. I guess, considering the alternatives the DR.s were suggesting, she's pretty lucky. If they haven't already, you might want to have them check for ciliac disease. __________________ Aeraen "I'm allergic to carbs... I break out in fat."

01-14-2007, 05:08 AM	#63
Screamer Very Gabby LCF Member!!! Join Date: Jul 2002 Location: wishing for pink Posts: 4,068 Gallery: Screamer Stats: 168.5/158.5/135 WOE: Holding the Universe in the Palm of My Hand Start Date: 8/7/00	Good amorning everyone, Once again thank you for all your support. At this point the Dr's are treating it as a control problem. They have taken away her prized posessions, binky, boo boo bear and blanket, until she eats something. Everyone tries to reason with her, in her own liitle way to the Dr's coming in to explain to her in big people terms. Nada. They have even resorted to tying her down to force feed her. She is one stubborn child. They will try this method again today. Monday they will start family therapy. I'm heading up there this morning. Mi __________________ .

01-13-2007, 02:22 PM	#62
CatieTN MAJOR LCF POSTER! Join Date: Jul 2002 Location: Phoenix, AZ Posts: 1,751 Gallery: CatieTN Stats: back at 206 again 5'10 WOE: WW with a low carb approach Start Date: 11/08	Any news? How is GD doing?

01-14-2007, 07:47 AM	#65
Jenn_in_NJ MAJOR LCF POSTER! Join Date: Sep 2002 Location: Tampa Posts: 1,397 Gallery: Jenn_in_NJ Stats: 267/149/?? WOE: Low-carb/BB diet Start Date: 2001	I hope you get some good news soon. The celiac/gluten is interesting. My son has autism. When I read about your GD's switch from normal to lethargic it reminded of of the absence seizures my son had when he was around 3/4. We had to have a 24 hour EEG and they found he did have spikes in brain wave activity. I don't know if an MRI would show seizures. Also, parents of children with autism put their children on gluten-free casein-free diets and have had great results.

01-14-2007, 08:16 AM	#66
Crohnie Miss Innocent Join Date: Aug 2002 Location: MA Posts: 25,372 Gallery: Crohnie Stats: 196/177.01/149 WOE: medi-weightloss Start Date: 07/10/08	how about UC? I was pretty sick when I was little and wanted no food

01-14-2007, 11:34 AM	#69
silkandsand Big Yapper!!!! Join Date: Feb 2003 Location: Lake Chapala Posts: 8,371 Gallery: silkandsand Stats: 150/141/125 sizes:10/8/6-4 WOE: Atkins/Low carb Start Date: 2/2/2003	WOW. I don't think this sounds like a control issue at all. I think there's a bigger problem at hand. I can't imagine a perfectly healthy child allowing people to poke and prod her with iv's and tests just so she doesn't have to eat and she can "win." I really hope the problem is figured out very soon. Poor kid--and all of you who love her.

01-14-2007, 11:47 AM	#70
megpie MAJOR LCF POSTER! Join Date: Jun 2006 Posts: 1,501 Gallery: megpie	I also don't think you can reason with a 3 year old. I doubt those tactics will work. I would definitely encourage the blood work for the gluten issues. I'd also just put food around her bed and then ignore it. Put a variety there. Sweet, salty, savory, warm, cold. And then leave it alone. If it's control, she'll eat when someone isn't watching her.

01-15-2007, 07:06 AM	#72
Screamer Very Gabby LCF Member!!! Join Date: Jul 2002 Location: wishing for pink Posts: 4,068 Gallery: Screamer Stats: 168.5/158.5/135 WOE: Holding the Universe in the Palm of My Hand Start Date: 8/7/00	Good Morning Everyone. Still no cahnge in DGD. She is still on IV meds. They are giving her Zanax to help keep her stomach acid from eating away her stomach lining. Sometimes I think it is more than just attention seeking. Something scared her into not wanting to eat. Today psyche/med is starting therapy and hopefully find something deeper. Yesterday while I was there, April left the room to see if she might open up to me. While we (me and DGD) were talking about everything other than food, she said in a very matter of fact way "I don't wanna eat, Gramma." I said why? She said I don't wanna a cheeseburger. I said, I like cheeseburgers sometimes, once in a while they are ok. She said - 'I just wanna cry'. I wish I knew the right thing to say to pull it out of her. After that she dropped the food angle and we talked about football on TV. I told April this and she will relate it to the Dr. Every once in a while she points to her mouth. I asked her if her teeth hurt and she just said noooo.... I just want something/anything in her little brain to snap and want to eat again. Mi

01-15-2007, 07:20 AM	#73
OldSchoolGirl Way too much time on my hands! Join Date: Jun 2002 Posts: 10,101 Gallery: OldSchoolGirl	Mimi, wow, I'm so sorry that this is still going on for you! I keep checking the thread and praying and hoping that someone unlocks the key to whatever is happening in your grandbaby's body/mind. Don't give up hope!!!

01-15-2007, 07:34 AM	#74
OldSchoolGirl Way too much time on my hands! Join Date: Jun 2002 Posts: 10,101 Gallery: OldSchoolGirl	I just can't get this off my mind. If it IS some sort of extreme manipulation for attention, (which would blow my mind), would it be possible for the parents to stay away for a day and see if she would eat so she could see them or go be with them again? You mentioned she has a little brother, maybe if she is jealous of her loss of total attention she would change if she felt it start happening again. I know that sounds almost cruel if she really is physically ill, but it would only be for a day or a few hours a day or even just a "shift" a day and you or someone else could of course stay with her during that time. Also, is there some kind of toy or something that she really really wants that you could sit in the room and tell her she can have it when she eats? I know, it also sounds cruel if the origin of the problem is physical but I'm trying to brainstorm for you, Sweetie!

01-15-2007, 07:35 AM	#75
Denise85 Way too much time on my hands! Join Date: Jul 2003 Location: Chicago burbs Posts: 21,921 Blog Entries: 11 Gallery: Denise85 Stats: 261/148/140-5'5" WOE: Dietician's plan	It's possible she has an ED. Is anyone diet obsessed in her house or that's around her? Kids pick things up from their environment. I used to babysit a 7 year old that was anorexic. She learned is through her mom who was always dieting. She used to tell me that food was poison, and that she couldn't eat. I'm praying for her, and hoping they find something out soon.

01-15-2007, 07:49 AM	#76
Caro lc hottie Join Date: Dec 2002 Location: ~eastern NC~ Posts: 17,699 Gallery: Caro Stats: see SIG! lol WOE: im not fat.. i just havent grown into my body yet. Start Date: org: 7-6-03 restart: 3-3-08	i keep checkin in to see if there is any progress!!!

01-15-2007, 08:16 AM	#77
silentkate MAJOR LCF POSTER! Join Date: Aug 2004 Location: Florida Posts: 2,982 Gallery: silentkate Stats: 242/150/145 Start Date: May 27th, 2003	I hope they figure out what it is soon.

01-15-2007, 08:52 AM	#78
tori_lk MAJOR LCF POSTER! Join Date: May 2005 Location: Colorado Springs, CO Posts: 2,293 Gallery: tori_lk Stats: 173/169/124 5'4 WOE: Atkins Start Date: May 31, 2007	praying for her! Tori

01-15-2007, 08:58 AM	#79
MissBoop Tutta Bella Join Date: Apr 2004 Location: South Western KY Posts: 27,018 Gallery: MissBoop WOE: Low Carb Cookin' y'all! Start Date: 04/08/2004	OMG! I haven't been online in a few days, I can't believe there's still no progress. I'm praying for her Mimi, I know you all must feel so helpless, frustrated, worried...many mixed emotions.

01-15-2007, 09:08 AM	#80
Seelessofme Big Yapper!!!! Join Date: May 2003 Location: Southern California Posts: 8,638 Gallery: Seelessofme Stats: 139/135/124 Start Date: Feb, 2003	I can't get this off of my mind, either. I agree with OSG that this would be a powerful manipulation and a huge amount of strength from such a small person. I hope that the psychological evaluation is able to give some insight. I am hoping that some sort of play therapy or art therapy might draw out some clues about what is really going on. Lots of hugs to all of you.

01-15-2007, 09:22 AM	#81
Tylar_Connar Way too much time on my hands! Join Date: Nov 2005 Posts: 12,435 Gallery: Tylar_Connar Stats: 198177150 WOE: 27 lbs to go for now Start Date: 10/14/06-165, 11/23/07 180	Oh Goodness still not change...WOW!!

01-15-2007, 09:27 AM	#82
Lisa M Very Gabby LCF Member!!! Join Date: Aug 2004 Location: West Coast of Florida Posts: 4,341 Gallery: Lisa M Stats: 130/125/120 WOE: Modified Atkins	I've just read this thread. How sad and helpless you all must feel. I remember reading an article about anorexia. One boy said when he was 5 he had a voice in his head telling him not to eat and he didn't. They took him to all kinds of dr.s before they determined it was a psychiatric problem. I hope they find the cause soon.

01-15-2007, 09:58 AM	#83
averyjenn Queen of Cream Cheese Join Date: Mar 2005 Location: North Carolina Posts: 6,156 Gallery: averyjenn Stats: 240/156 now 180/170/148 5'6" WOE: Kickin' it old school Start Date: 2/21/05	Oh the poor little thing. Praying for her.

01-15-2007, 10:36 AM	#85
OaklandRaiders15 MAJOR LCF POSTER! Join Date: Sep 2003 Location: Phoenix, AZ via Ellensburg, WA Posts: 1,472 Gallery: OaklandRaiders15 Stats: Too much/A Little Less/Just Right WOE: Exercising More/Eating Less	Any results/progress from the therapy?