Went to dr. today with-difficult child!!

[Jena]

hi,

went to hospital today to meet with-the team of dr.'s for difficult child. guess what?? she GAINED 3.5 pounds in only 5 days! they were astonished and just looked at me and difficult child and said wow you two work well together we didn't expect such an increase.

yea yea they havent' seen my posts here about how i wanted to jump off a bridge basically.

long story short she isnt' stable yet but we are getting there. they brought in another peds specialist that was discussing the complex case that being difficult child and how we have to get a Sensory Integration Disorder (SID) specialist involved we're hitting alot of walls with-the textures.

winds up her sugar levels are high. i told them i'Tourette's Syndrome the seroquel again. we gotta add another medication maybe topomax to combat the side effects. it's right on that borderline if it goes any higher we are in trouble.

so i made two calls to pyschiatrists that they referred me to. one doesn't take our insurance and the other waiting on call back. my pyschiatrist went AWOL on us. last time i spoke to him was when difficult child was in the hospital.

still trying to figure out my life, how to make this all work. trying to calm down everyone here that is in upheaval over my new situation. easy child is slowly conforming she has alot of heart for me, luckily and hates to see me stress lately. husband is a different story. he spoke this morning about seperating. so we'll see where that lands.

my main concern is getting her better. easy child i always gotta keep an eye on shes my kid, yet the other kids is just fun time when their here MOSTLY and husband has gotta get a grip. if he isnt' strong enough to prevail through this, than it wasn't meant to be afterall.

 

[JJJ]

She is so lucky to have you.

 

[Jena]

thats' sweet. truth is i'm lost with-o her. yea i know extremely unhealthy. im lucky to have her, she's difficult and always an adventure yet i've learned so much from knowing her

 

[HaoZi]

Glad to hear about solid progress. It's a situation that's hard on everyone involved, *hugs*

 

[smallworld]

Jen, you have to be careful with Topamax because it suppresses appetite and causes weight loss. I know you have to watch her glucose numbers, but Topamax may be the wrong medication to add when you're dealing with an eating disorder.

 

[BusynMember]

While I'm thrilled that she's doing so well, I got a little knot in my stomach when you mentioned Topomax. All I can say is be careful. They offered it to my son to control his appetite. It makes you less hungry. I would not give it to your child.

 

[Fran]

Good to hear that she is headed in the right direction.

 

[Wiped Out]

Glad to hear of the weight gain. Sorry things are so rough for you and husband right now. Hugs.

 

[Jena]

hi guys.

thanks on the medication. this is why i need a pyschdoc like yesterday. can you beleive her new guy just bailed on us like that? just seems to be the theme as of late

tonight she had tomatoe soup we're slowly slowly getting there. yea sounds like topomax wouldnt' be right medication at all! this is what i hate about seroquel, it works soo well for her yet the sugars and fear of diabetes always looming.

doctor was like how'd it get that high is she sucking on candy and choc 24/7? lol. i said no she's on seroquel he said ahhh

 

[Bunny]

I am glad to hear that she is doing so well and finally on the road to gaining back some weight. I am sorry to hear that husband is talking about separating. I hope that it works out.

Pam

 

[PatriotsGirl]

Great news Jena about your daughter!! Sad to hear about your husband. Sooo many times mine threatened to leave because he couldn't handle me always rescuing and enabling difficult child (which I do see is wrong to do). It hurts and yet pisses me off at the same time!!! This morning he actually said he hopes I am in a better mood tonight. I wanted to knock his block off. I am the one that has to deal with the difficult child stress. I am the one that has to smooth things over with my mom so difficult child can stay. Must be real easy to sit back and watch me deal with it and then complain that I am stressed out!
But, I digress, I hope your daughter continues on the path of recovery!!

 

[hearts and roses]

{{{Jen}}} Add my H to the list of guys who also had a difficult time with difficult child and me being attached at the hip. Unfortunately, there are times when our children do come first. I am sure a marriage counselor would try to argue the point but it's true. My parents raised 5 kids together and they were both the bio parents, so it has nothing to do with being a step/blended family. When your child needs you - as a mother - you are there for her. Period. Right now, your girl needs you and H needs to respect that and understand that being there more for your daughter right now does not displace him as your H. Perhaps he should review what it means to be married - you support one another and love and trust one another to understand why the other person is doing what they are doing...I could go on, but you get the idea. You do what you gotta do when you gotta do it - simple. It IS stressful for the whole family, but H should be acting as a mediator with the other children to help them cope rather than adding stress to an already stressful household. I'm sorry he's not seeing things that way.

on the other hand, some people can only handle so much and maybe H is not equipped to handle this because you've always been the one to juggle everything and everyone?


It is excellent news that daughter is gaining - I hope this continues. And big Hugs to all of you!

 

[Jena]

tomatoe soup for dinner last night and today 2 croissants with butter took a long long time but they went down and all chosen by her. we are officially on our way. i raised the seroquel to 62.5 seems to be helping alot.

 

[DammitJanet]

I would not add topamax either. It will suppress her appetite and make food taste bad to her. Not what you want at all. If you have to do something else, I would change AP's. Now seroquel did not raise my blood sugar. It did raise my cholesterol though. My glucose and blood sugar is fine and I am extremely obese. It may be that once she stabilizes on normal food groups her sugar will normalize.

 

[Jena]

hi. Janet your funny. obese, i'm sure you are not oh wise one! I'm working on getting a pyschiatrist. once i get one on board hopefully that'll help. keeping seroquel for now we are at borderline but she is ravenous to say the least all day long. ice pops, anything she can suck on. shakes not one today. all soft mushy foods. 2 yogurts for lunch ones with-o the fruit that i make her shakes with and 2 glasses whole milk. for dinner she said to me i want pizza so badly. i said ok jumped in truck went to get her a slice with pepperoni. shes ambitious.

needless to say pepperoni came off she couldnt' swallow it, yet she literally sat there for two hours all her own will and chosing and ate half the slice because she wanted it so bad. shes a tough one. tonight i gave her the seroquel literally at bedtime went back down to 50mg and i'm giong to give it twenty min to see what happens. could be my fault i gave her the medication than let her play with-her sister before bed.

 

[Marguerite]

Would it help, or hinder, to focus on flavour? Good, healthy, natural flavour (not artificial crud). Herbs, for example. Vanilla. I make curries from the basic spices, leaving out any 'heat'. The result is loaded with flavour but no burn. Anyone anting burn can add their own Tabasco. A home-simmered beef and vegetable curry has chunks of met so tender they fall apart, and even if all she can manage is the gravy, it has a lot of nourishment in it, plus loads of flavour. You can use the gravy maybe to get some steamed rice into her. We also cook poppadums in the microwave oven as an added treat for curry eaters, but they might be a bit scratchy for her throat.

I find when I'm dieting hard, I focus on flavour a lot. It makes food a lot more enjoyable. I also find I quickly dislike the feel of any fat in the food I'm eating. Not just lumps, but any grease at any stage, it coats the inside of my mouth and feels yuk. Even drinking full-cream milk is a turn-off when I'm dieting. OK, she's not trying to diet (we hope) but she may have developed similar aversions especially if she already has sensory issues.

Anyway, it's just one more idea. You seem to have the best handle on things at the moment, given her weight gain.

Marg

 

[Jena]

marg

thanks and right now we're just focusing on the calories and the nutrition is in there with-the milk and other things she is putting in there. she won't touch meat, vegetables, etc. she is still the same difficult child i had before the non eating and her diet was minimal. that's where the Occupational Therapist (OT) person comes in and hopefully can help out with-desentizing her to textures, etc. rite now doctors' are thrilled that she gained so much in such a short time

 

[Jena]

oh and i noticed you wrote we hope she isnt' dieting?? where did that come from? i think we all get now she has a food phobia

 

[Shari]

I think it was an attempt at sarcastic humor. Nothing more.

 

[Jena]

ok, sorry my sick humor wasn't in it's usual place earlier today.