safe to say i think she has an eating disorder

[Jena]

soo small you were right. it's been only a few days since that post about difficult child and lack of food intake and it's worsened already just in a matter of days.

past few days minimal food, half a burger i think. today nothing. so knowing i have to hold out till tuesday to get pysch on board, than thursday for her appointment. and getting medication i had to do something. she has begun limiting her intake of water now also.

so, i ran to store and bought carnation breakfast drinks. she used to love them. i wanted to get ensure but i knew she wouldn't drink that too thick.

sure enough made her one and she drank it. we went to zoo today, a great 3 hours together. she fell asleep in truck on way back. woke up and said do i feel this way because i cant' eat anymore? i said what do you think????

she said yup, but i just dont' know what's wrong with-me and what the problem suddenly is that now my anxiety is in my throat??????!!!!!!!

i gave best explanation i could, explained importance of nutrition etc. dont' really know what else to say.

i will be heading up to school monday though to give them a heads up. she eats nothing in school all day and doesnt' eat breakfast at least didnt' last week. and she doesnt' drink water. so i think they should know incase she gets weak, etc. who knows what will happen.

i knew heading into teen years with-a BiPolar (BP) kid would be challenging. i guess i just didnt' expect this already. eleven to twelve are usually the "cut" years although so many kids have eating disorders.

i think those shakes will keep her at bay till i can get to a professional. weighed her today and she's down to 102, and she's 5 3' now. she's lost about eleven pounds since last dr appointment two half weeks ago. the weight is just flying off of her.

 

[Jena]

i am adding onto my own post.

i have done a little research into this, it's actually called a food phobia. for some reason or another her anxiety got to the point where she is convinced if she eats food she will choke, than die. in my research it states that lowering anxiety is key, yet an important factor is re introducing foods to the child and retraining the brain to understand it's ok, you wont' choke and die.

now, we aren't down to no solids at all yet. but we're close. last night half a cheeseburger all day long( and she didnt' even eat entire thing, broke it into pieces), today nothing.

they said feeding tubes, hauling her into e.r. not right approach will just scare cr*p out of her at this point and heighten anxiety. plus she did drink the carnation drink yet she cant' survive on that clearly.

anyone have experience with-the therapy end of it? just getting the medications next week will be one step to combat hopefully sleep, mania and anxiety, Obsessive Compulsive Disorder (OCD). yet that in itself will come with-side effects i'm sure and changes. adding a new medication is never an easy thing as many of us know.

yet that other component the eating thing i do not think will be solved simply by saying hey here's the medication your anxiety's better now eat your dinner. lol. she's giong to need a therapist with-whom handles all these issues that iknow. yet that's giong to take time been searching so far nothing. last one we had dropped off on us, her schedule was too booked.

thanks guys as always

 

[Marguerite]

She needs to really understand the physiological symptoms and processes of anxiety. difficult child 3 has difficulty understanding this. Often a child who is chronically stressed tends to mentally separate the physical from the emotional, and when the physical symptoms of emotional conditions appear, the kid assumes the problem is a physical one and responds accordingly.

I suspect she is experiencing a lot of emotional distress (including anxiety and probably some sadness and depression) and is aware of the tight throat feeling you can get in these circumstances, and it makes her feel as if she is really choking, when of course we know she is not. Helping her relax and learn to control her own anxiety (meditation, visualisation) can help. But she also needs to re-connect her emotions to her body, so she can more correctly identify the physical symptoms.

difficult child 3 can get nauseous and vomit due to anxiety. He got so anxious one day (I knew he was anxious - it was because of where we were) that he told me he knew something bad was happening, and he was dying. He said he was desperately ill and in danger of dying. He was convinced. He was even running a low-grade fever (which we know he can do, when extremely anxious). Even though I told him his symptoms were all explainable by anxiety, he couldn't accept this. "Anxiety alone could not make me feel this bad," he said.

But as we drove away from the place later on, he began to feel better. I think he at last began to realise, at least a little, that anxiety CAN make you feel this bad.

Your daughter doesn't sound like she has anorexia YET. But she is on the edge of it and can easily tip over. Her main problem is, I feel, anxiety. So in the meantime, if you can help her by getting her to verbalise her emotions (especially anxiety) and also help her understand how our bodies physically express anxiety, that might help.

Don't force nourishment into her if she is really concerned, try not to make too huge a thing about this (although I know you must be feeling desperate - don't show it to much, you will make her anxiety worse) you could tip things more towards anorexia. But if she is willing to try the protein shake stuff, that is a good sign. When she does eat, it is not the stuff a budding anorexic would eat.

Just keep reassuring her, keep her feeling safe, ease up on the pressure and focus on water. Water with sugar in it will get calories and fluid into her. Avoid carbonated drinks, they make you feel full and can aggravate throat feelings. Also avoid milk unless she seems OK with it. Keep it to small frequent sips. Let her sleep if she needs to - it will conserve energy and fluid. Watch her for signs of dehydration (check the skin on the back of her hand - how quickly does it spring back if you pinch up a fold?) and get her to the ER if it looks like she is showing serious dehydration.

Here's hoping she can calm down enough for her throat to feel better. Also get her throat checked out for a possible grumbling low-grade tonsillitis. Sometimes te answer can be surprising.

Marg

 

[Jena]

Marg,

Thx. We brought her to dr. while back when it all started and than again two weeks ago, her throat is fine. It's all emotional and in her head. She exhibits so many behaviors from so many diff diagnosis's that it is hard to treat her even in therapy. her Obsessive Compulsive Disorder (OCD) (obsessional thinking) does not help the anxiety or thoughts of choking because when the thought comes that Obsessive Compulsive Disorder (OCD) helps hold it. the mania irritablity i'm a superstar stuff is cute after being through 3 nights of anxiety ridden difficult child, yet also very unhealthy, hence the bipolar component.

the mania she exhibits the up till 3 a.m. singing in a microphone with-pink lipstick on, or recording songs and writing music till 4 a.m. we def. want to combat also besides the anxiety nights because we're all shot husband and i last night both said as we laid in our bed wow it's the house from hell.

there is a diff. way i found this clinic online info in orgeon it's strictly for eating disorders, food phobia, etc. and they first lower anxiety yet they dont' put the food infront of the kid for a week, they first talk therapy, yet i have to do more research into what they "talk" about lol. to get it.

it's rough, i'll list below what we see in her:

wets bed most nights
paranoia
hypermanic behaviors (grandiose behaviors, on top of the world etc.)
high irritiablity; verybally aggressive physically to animals sometimes to me yet only pushing thank goodness so far
destruction of minimal property (only on certain nights; there is def. a pattern)
sleeplessness; can function on 3 hours sleep no problem; stays up all night in room singing recording songs, writing songs, videotaping herself, etc. (again; certain nights) pattern again
Obsessive Compulsive Disorder (OCD); needs it all to be routine; step 1 than step 2; what are we doing today? and when?? than gets thought locks down on it.
sadness; can see it more clearly now that shes' older; crying bouts, what's wrong with-me i'm so sad, self loathing (at times; not as often as past) again certain time frames.
anxiety on certain nights
very bright
often handles herself like an adult regarding finances; although we do not discuss them infront of her;
slow to warm up as always with-kids, at functions, goes inward

we have implemented;
journalling for years
therapy
therapy in school
anxiety groups
peer groups
extra cirricular activities (usually bails out)
i chase down mom's for playdates or kid get together's whatever you wanna call them.
visualization
color therapy
meditation
yoga
biofeedback
medications (anxiety, ssri's, antipyschotics)
herbal treatments for sleep and anxiety and mania

as far as it not being eating disorder yet i agree i think there's this cliff and she's right there. eleven lbs. in two weeks loss is enough for me to say ok we have a problem here. my mom picked up on it while back.

i'm keeping this pyschiatrist tuesday whether i like him or not at this point. i do not have time to play games or search for the one i absolutely love. for years we have danced around not giving more than one medication. i think this time a cocktail of at least two will have to be used.

crazy thing is i've been talking to my ex mother in law lately via facebook. i had to ask ok what was difficult child's dad like little? hmm she said it was really mixed and odd. he was incredibly hyper or sad and weepy and got into trouble at school constantly. hmmm my response did you take him anywhere to get answers? shocker she hasnt' written back yet.

my ex would spend days not showering, not sleeping, than hyper and happy and clean and shaven for days, would spend 20 min.. parking his car to get it just right. when we left the house he'd have to do an hr. long cdheck to make sure all the water in the house was off and light switches off. anyway enough said..... apple didnt' fall far on this one at all. difficult child's maternal grandmother on dad's side had mental breakdown years ago, her parents both committed suicide. needless to say i did not ask these questions prior to marriage also ex h didnt' exhibit his behaviors until severe stress and life change hit, than the fun began.

wow this was long sorry!!!!

 

[TerryJ2]

Oh, my goodness, Jena! You have your hands full!

I think it's great that you know so much about your ex and his family history. That is a huge help. It seems obvious that your task is to teach difficult child how to de-stress, which sounds like it should include medications. I don't understand your profile signature, where it says, "currently non medicated past medications: enough" I'm thinking maybe she was too young and now is a better time to work this out with-medications and a completely diff approach with-therapy? Oh, wait, I see you reponded to Marg's note with-more info. Sorry! Now it makes sense.
I'm sure you know it is important that she exercise (forgive me if you posted about that, I may have missed it, but I'm thinking that your comment about extracurricular activities includes sports) so that she doesn't lose muscle mass. It's great that she'll drink the Carnation.

I've got my fingers crossed about the new psychiatric.

 

[smallworld]

Hi Jena, what you're describing is exactly the type of eating disorder my daughter M had at age 8. Her official diagnosis was Eating Disorder-not otherwise specified. It is not anorexia nervosa or bulimia. It is a choking phobia based in anxiety. When the anxiety is lowered, the ability to eat returns. Unfortunately, my daughter was so malnourished that she needed to be admitted to the hospital to be medically stabilized, and a feeding tube was inserted through which she was fed for a month. The medication Zyprexa has been shown in a few small clinical studies to be helpful for the treatment of eating disorders. M responded very positively to Zyprexa, and to this day, takes a small dose (we have weaned her down over the last year). She also underwent exposure therapy -- in other words, foods were gradually re-introduced to her from "easy" (like yogurt and mashed potatoes) to "hard" (like meat).

Hope that helps. Please feel free to ask any questions you might have.

 

[Marguerite]

Here's hoping this psychiatrist can help, fast. I agree, she is on the brink, but this is not yet primarily eating disorder. It's a whole lot of other stuff which is pushing her in that direction (to add to your problems).

There are a lot of underlying problems here. The talk therapy may help, especially if they can help her reconnect the physical and emotional. That is, I suspect, a huge part of the problem at the moment. Her stress - she herself is part of the reason which means she is in a positive feedback loop (like someone at a public speaking venue who has the microphone too close to the speaker - you get a squeal from the speakers when the sound from the microphone, no matter how faint, gets amplified and picked up by the microphone which feeds to the speakers which gets picked up by the microphone which feeds to the speakers which... and so on). Positive feedback loops can be very bad.

One of my oldest friends had problem with her first husband, anxiety and a positive feedback loop. Unknown to any of them, he had bipolar. He was working extra hard and this was causing stress and exhaustion. He was a perfectionist and stayed longer at work to get the job done, and done right. This meant he was more tired, more likely to make mistakes, more anxious and more perfectionist. His paranoia began to rise - someone was sabotaging him, he felt. This pushed hi into a manic phase where he hardly slept at all. All this aggravated his stress until one morning he was simply catatonic and she called the ambulance.
He was OK eventually on medications, but the next time it happened he had a total reality break. Convinced she was the cause of all his problems, he tried to kill her. Not on impulse, but planned murder with a bomb. She had to go into hiding with the kids. She was advised that he could never be a normal husband and father, she should cut him out of their lives. She chose not to, but eventually she did divorce him. When she was told to never let him near the kids again, she again chose to ignore the advice and set up supervised visitation. I think that is what saved him - he has been stable on medications now for 20 years. Married again, has been a marvellous father to his kids with his new wife and attended his first wife's remarriage. They are all good friends now, he is doing fine.

So despite how bad this can get, it can work out.

Hold onto hope and keep doing what you are doing. Current aim - minimise stress and as far as possible, work with what you are restricted to. it's futile to shout at her to go to bed, all it will do is ramp up her anxiety. Invest in ear plugs. Hang in there until the appointment.

Marg

 

[Jena]

i was just talking to a friend of mine this is bipolar. its' the ups and downs craziness of it all mixed with-that huge anxiety issue. once we get her on a mood stabilizer i feel like things will be better........ we just have to deal until than and it taking affect.

she left with-her dad tonight so i have a few days to breath, regroup, and get a break

 

[smallworld]

With all due respect, I completely disagree. It depends on how difficult eating becomes. If it becomes severe enough, that becomes the primary symptom you treat, regardless of what the primary diagnosis is (for example, bipolar disorder) because eating is a life function. As you can see from my signature, my daughter M currently takes three medications to treat her symptom complex (anxiety, mood disorder, emotional reactivity), but we had to treat the eating disorder first because hers became so severe so quickly. In a young child, an eating disorder can take on a life of its own within weeks. Please watch your daughter carefully. I don't mean to scare you, but these types of situations can go south very quickly.

 

[svengandhi]

My oldest son had a variant on the eating anxiety when he was in K. His turned out to be caused by PANDAS and the precipitating factor was that he choked on a piece of pizza because his throat hurt from the initial strep infection. We tried Ensure (H insisted on chocolate and the kid hates chocolate to this day!).

We took him to a psychologist affiliated with LIJ who was an expert in eating disorders in children. She treated him with moderate talk therapy (after all, he was only 5) and with eating trips. They would go together to Dunkin' Donuts or the like and eat together. The treatment worked well - he now has to try and lose 50 pounds before he (hopefully) gets called for a civil service position. The purpose of the treatment was to show him that food was his friend and would not hurt him so he could eat it. My son does not have an underlying psychiatric disorder other than PANDAS so this treatment may not work.

If the situation continues, I would urge you to call the psychiatrist and see if you can get in before Tuesday. This constitutes an emergency. You said she has lost 10% of her body weight in 2 weeks. If that happened to me, it would be called a miracle and a first step, but your daughter is not in the same position.

 

[confuzzled]

i would personally be alarmed at the rapid destabilization and if it were me, i doubt i'd wait until tuesday. in light of new symptomology i would be seeking immediate hospitalization.

any hospital ER should be the single point of entry for a childrens pyschiatric hospitalization, and i'd find it hard to believe that anyone would be turned away in this circumstance. while any ER should be able to evaluate, but not all have the capabilities for a psychiatric stay---its hard to know sometimes if a hospital has a program, but thats the ER i'd prefer if its known to have an impatient program, if only to cut down on the transport step, which can take hours to coordinate. but i wouldnt let it stop me if didnt know--any hospital can transport to an impatient program.

impatient stays can be a valuable tool in medical management of psychiatric symptoms and have the ability to move much quicker on medications than one might be able to do under the supervision of a doctor at home. impatient stays are also valuable in the respect that there are staff to observe patterns of behaviors and symptoms and can (not always) result in a quicker diagnosis (or reaffirmation of a previous diagnosis), and therefore quicker treatment--vs starting from square one with a new doctor and having to convince them of diagnosis and viable treatment routes--many good psychiatrist's do NOT dispense Rx's on the first appointment.

impatient stays can help to organize medical testing. in fact, certain medical testing--even if "just" labwork, *should* be done so that medical diagnosis can be ruled OUT. if warranted, more testing may or may not be done, and having the luxury of it all done on site, in a timely fashion, can speed the process alone. services can be rapidly coordinated and results recieved much more quickly than can be done at home---ever request labwork results and have to wait a significant amount of time before even the rx'ing dr gets them? in a hospital stay, you get them. pretty quickly.

inpatient stays can also be invaluable in QUICKLY coordinating community services and identifying a myriad of appropriate resources....usually ones that are tough to come by, and often ones that a parent won't just happen to stumble on on their own, and that many doctors, even those in the "community" are often unaware of.

and i'd also be looking to the recent trial of luvox to try to determine if it caused further destabilization or if the new symptomology is unrelated. while luvox appears to have a relatively short half life, thats personally what i'd be leaning toward. my logic would dictitate to me that there had to be a trigger, and seemingly that appears to be the newest thing introduced.

if i didnt work up a full parent report i'd at a very minimum, have a typed statement of previous courses of medication with their trialed dosages and the effect/side effect history--its difficult, if not humanly impossible, to be able to remember all of this information under tramatic circumstances. i'd give it the old college try to get it all on one page, even if it meant using 4pt type...that way, its all there, at a glance.

i'd personally be petrified of whats to come next if this was left untreated and unmedicated.

 

[Wiped Out]

Jena,
Adding in prayers, I know this is hard to deal with. Hugs.

 

[Jena]

thanks everyone for your thoughts. i as always appreciate it. Small, you are correct basic functioning has to come first sleep, eating. can't imagine how hard it was for you when you went thru it. we aren't at feeding tube yet thank goodness. i will proceed accordingly once i meet with-the dr. on tuesday. it is almost sunday tuesday will come quick enough. yet the truth of the matter is that once a medication is given food will not start flying into her mouth obviously.

she's still holding her own. i spoke with-her peditrician also. she is drinking the carnation drinks. she had one at her dad's today, yet no food.. i will medicate, therapy and work with her myself on reintroducing food starting with-soft foods. i think she'll be ok. this will happen alot, she is who she is and teenage years bring other symptomatic **** as well as other disorders as we all know.

if i go freaking out now i won't make it thru the next ummm how many years?? i'm obviously extremely concerned as i always am. yet as we all know as a parent you have to proceed with-ease not chaotic drama and dragging her into an er is just that.

we arent' at that point yet.

((hugs)) to all of you. being here again maybe has made some of you crazy yet it's made me a little bit of a calmer woman here at home. thanks! missed you guys

 

[Jena]

First of all Confuzzled it is not due to the luvox that she was on. as per a dr. so me trying out an ssri did not trigger it. also your pushing panick buttons about how afraid you would be etc. isnt' what any parent needs to hear when handling any type of difficult child issue. somewhere in your words i know is caring, yet you def. gotta tweek it a bit in my opinion.

 

[Marguerite]

Something to keep in mind - we don't always realise, but swallowing issues come under the professional care of speech pathologists. you might need to ask around to find one who specialises in swallowing (as distinct from language issues). Speech pathologists deal with issues relating to the physical structure and function of the mouth and pharynx as well as physical aspects of speech, right into the language centres of the brain and including sign language. Very broad, often very complex. In order to determine whether there is any possibly physical component to the swallowing problem, she might need to be checked out by a speech pathologist who is a swallowing expert.

Looking at her list of issues, you have bipolar, sensory issues and anxiety all in there. That alone can be enough to cause a lot of headaches with swallowing.

I think you're right to be dealing with it now, even while you have to still tiptoe carefully to avoid this tipping over into a potentially nasty eating disorder.

Let us know how you get on.

Marg

 

[smallworld]

Marg, you are right that all physical issues need to be ruled out. When my daughter M was admitted to the hospital for her life-threatening eating disorder, all medical issues were quickly ruled out, including swallowing disorders, esophageal abnormalities, gastroparesis, etc, within 24 hours. That's when the feeding tube was placed to allow her to regain her strength.

Even though the doctors went along with ruling out the physical issues, they were fairly certain they were dealing with a psychological issue because of the amount of anxiety M was exhibiting at the time of her hospital admission. And of course, they were right.

 

[Marguerite]

Sometimes, even though we are probably dealing with a psychological issue, checking out the physical possibilities can reassure the person and that alone can lower the anxiety.

Marg

 

[Jena]

Marg,

you are very insightful and soo right. That's why we began with the doctor when she began of the throat to ensure her it wasn't strep, nothing was in there and it was clear. She checked out beautifully. I even told her ok i'll bring you to a specialist also. We have been down this road with her before a little pertaining to other ailments so it's not new in regards to bringing her to the dr. to ensure her she's ok. a matter of mos. ago husband had to bring her in the middle of the night in a snow storm (ok last winter) because she was convinced she broke her ankle. p.s. she was fine, yet dr gave her crutches because thought was cute. bad move cute but bad.

I'm not a dr. and not even going to assume on this one i know what i'm diong. this is way out of my familiar territory so the responses and thoughts and experience is greatly appreciated. i have call into dr. again because i'm a bit edgy about sending her to school tmrw. this way. if she goes to school and becomes faint that wont' be good, learning won't happen, anxiety increase, be in nurse again. yet if i dont' send her she'll think ahhh this will get me out. i have to keep in mind the manipulation that she is also very capable of. sounds mean yet its' truth.

it seems like i have alot this week. pysch on tuesday, dr. today than team mtg on wednesday with all her teachers. which is a good thing. i need to feel as though i have a direction, right now we're flying by the seat of our pants on this one. i dont' like that.

in regards to medications, i've had thoughts also. medications cause side effects, upset stomach, etc. she isnt' really eating. this will not be a good mix. i am curious to see what the dr. says about that also. there is just one piece missing from the puzzle that is a good strong therapist for her. so upset her's left the practice. they had such a good repoir with eachother. yet i guess the talk therapy was really making difficult child frustrated.

it's going to be a long haul now i can feel it. bet. new medications,her not eating, school problems. husband said to me last night you just gotta keep taking care of you and doing what you did yesterday. it's the only way this time, bet. her and easy child's stuff and the other kids. we dont' have them all the time yet there is always junk and aggrivation from ex.

 

[smallworld]

But sometimes when the anxiety is so strong that it's causing a child not to eat, you need a medication (like Zyprexa or something similar) to help the child to start eating again. Zyprexa calms anxiety and distorted thinking and has a side effect of appetite enhancement. Obviously, you need to see what the psychiatrist has to say, but I don't think you should rule medications out. Zypexa was a crucial part of my daughter's recovery from her eating disorder.

 

[Jena]

no, no, no i'm not ruling out medications at all. she obviously can't function with-out them even before this eating issue reared its ugly head. just saying it's giong to be alot is all, we already had alot of issue before this. wish we could use that, i'm telling new pysch no ssri's at all, or anxiety medications. it's proven they dont work for difficult child at all. i don't want to put her thru anymore bad side effects. luckily this summer only one we tried was luvox and one sleeping pill that didnt' work.

spoke to her peds again. sending her to school tmrw. but gotta get up there first to let all teacher's know the deal with-her so they can watch out for her. than tmrw will get referrals for speech person, evaluation for eating, and therapist that handles that.

her dad is getting very anxious having her this weekend. i told him do not show signs of that to that kid. keep it together. she'll feed into it in a hot second that's how she rolls. dr. said as long as your getting those carnation drinks down breath easy till we get doctor's medications and everything in place.