Desperatley need help with daughter!

[NatureMomma]

I am cross posting this- I really need help, if you have any advice, I'd appreciate it.

 

I desperately need help with my daughter, I am crying right now, and at my wits end so please be gentle...

My daughter has a medically complicated past, starting with mono, and GI issues, behavioral issues, immune system issues.

 

She had been doing somewhat better with diet, and careful attention to energy, vitamins, we had to be super strict, but About 5 months ago, my husband had work in Europe for a month, so we decided I should go with him, and our dd would fly back home to CA to stay with my mom.

Long story short, my mom didn't follow any instructions on ANYTHING. All out hard work in trying to get her stable and better was down the drain...she let her eat whatever she wanted, and didn't give her vitamins, she was just a mess when we picked her up.

She ended up in the hospital for a clean out after not going to the bathroom for 21 days. She's been in and out since. 12 times for a bowel clean out, and 2 more times for severe throwing up, and dehydration. We can not get her to baseline. This keeps happening over and over and over again. She has most so much weight, and is just a wreck emotionally and feels traumatized. She is a different person then when we dropped her off at the airport 5 months ago.

She was referred to a neuropsychologist, and he thinks she has high functioning autism or asbergers- she has been having EXTREME meltdowns, where she is very physical and will rage, at the drop of a hat. something small can trigger it. there doesnt seem to be any ryhme or reason. She has hit me in the head, punched me in the face, kicked me so hard in the gut, the gallbladder.... Just today she had the worst one yet. It is madness.

Because of the physical issues, they are having a hard time wading through all of this stuff, what's emotional, what's physical- what's caused all the recent issues. She acts like she age regresses at times. She will spend all day in bed, refuse to get out, or spend an hour at a time in the bathroom. When she's not doing all this, she is obstinate, argumentative, won't go to bed, won't do anything she doesn't want to do.

We don't go anywhere, don't do anything, except drs visits...We have locks on all the doors, the fridge.

She is seeing a neurosych once a week, and just started seeing a OT yesterday, and he wants her to see an AbA specialist once a week as well.

We don't know what else to do. We any live like this. We are walking on eggshells, and I feel unsafe. I have no idea what to do about all this. I don't see any recognition of my daughter- she does have her calm moments, but most of the time, its like watching Helen Keller.

Any advice? I don't even know what kind if programs are available to us. I don't knwi what to do!

 

 

ETA: no disrespect for Helen Keller, I have tremendous admiration and respect for her. I meant it was like how the little girl in the movie was before She got help. Oy!

[East Coast Sue]

First, ((((hugs))))

 

How old is she? How old was she when her health declined?

 

Has anyone recommended a mood stabilizer to stop the extreme rage events? It worked wonders when I dealt with a combination of physical and mental issues in one of my children. The rage stopped with the very first pill. I had this gut feeling that most of my child's rage was out of control- literally speaking- not really an active choice. Therapy, medication, and time has helped considerably.

 

I hope that helps. (((hugs)))

[Trish]

How old is she?

[kiwik]

Sorry just hugs. I know how having all your work thrown away feels though.

 

How old is she? It makes a difference to how you deal with things.

[NatureMomma]

She's 12, and her health starting declining when she was 8... 4 and a half very long years.

The dr. Said he wants to try these other methods first, to tell the truth, I'm very hesitant of medication because of the other side effects they present, but we may have to- she doesn't want to act like this, she says she has no self control and can't stop. She's making everyone angry at her, and its just hard to be positive about this.

It's encouraging to know that it worked for your child!

Was it an antidepressant or anxiety med? Are there any serious side effects?

[Ravin]

Risperdal (along with an antianxiety med) has been a major help for my dd. The serious side effects are mostly connected to long term use. I was reluctant too but it made a huge difference in her ability to control her temper and calm down.

 

If I was a litigious person in your shoes I'd sue your mother.

[MomatHWTK]

Medications in our experience require a lot of trial and error.  I do regret some of the medications we chose due to the side effects, but at the time they were the only option and the alternative was no better.  :( 

[Jean in Newcastle]

What are you doing for her diet?  

[NatureMomma]

Right now, I'm not doing anything for her diet, as she won't cooperate any longer. I feel that's part of the problem that's affecting her. When she was on GAPS diet, I did manager to wean her off, and she seemed a lot calmer, more stable, cooperative...

She wants to eat whatever she wants, and she's 12, and I just can't force her to eat good. Nothing works. What keeps repeatedly happening is she's having to go in the hospital 2 or 3 times a month. It's been truly traumatizing for her, and she's just not the same. I don't know how else to help her. We literally live out life on eggshells, wondering when something will get her tiled up. She is very argumentative. After the tantrum she had today, she couldn't sleep, so kept us up till 12 arguing about every little thing. She won't let me leave her, is very clingy. She's never been like this.

The Dr. Put her on 10 caps of miralax, 2 exlax and a liter of Gatorade this evening, because if she doesn't go by tomorrow, he's admitting her again.

They've been able to figure out that she has slow motility, its taking her 5 days to eliminate everything she eats, we do notice this affects her health, her behavior, everything.

We just can't get her to baseline again.

My husbands ready to take her to the psychiatric ward. I just don't know what to do.

Thank you for the help ladies.

[Mrs Mungo]

Maybe if you looked at the meds as a stop-gap measure while you worked on the diet and ABA stuff?

[NatureMomma]

I was looking at Risperdal- so it seems its ok, as long as its not long term use?

So how long would you take it, and what do they give after that?

 

We are not talking to my mother at all.

She actually did this on purpose, and told my daughter that she didn't believe she was I'll, and that she could make her better. She's got serious issues, and I feel very betrayed by her. Our life is turned upside down by her choices. She didn't have to agree with my choices, but she had no right to make the decisions she did, and when we called her the first time she was in the hospital, she tried saying she was 'fine' when she sent her back. 'what's wrong, the flu???!' The fact is, every time we talked to dd on the phone when we were gone, she complained of not being able to go, and my mom would take the phone from her and brush her away saying she'd been going. She also had norovirus while there, so I think it was just the perfect storm. My moms always had a very unhealthy attachment to my dd. it's part of the reason we moved so far away, and we were just starting to repair our relationship and she did this. My husband doesn't want to ever see her again or allow dd to see her.

[Lang Syne Boardie]

Maybe if you looked at the meds as a stop-gap measure while you worked on the diet and ABA stuff?

That's what I was thinking, too. :( You've got to get her to a calmer, more cooperative level so you can re-implement the practices that you *know* make a difference. Maybe meds are the way to do that, maybe the transition can be made while she's in the hospital...be willing to think outside the box...

 

I am so sorry this is happening. I have one son who raged as a child and was not OK due to a gluten intolerance but is perfectly fine after a decade of a healthy gut on a GF diet. I've often wondered what his life would have been like if his diet, which was a simple and easy cure at the time, had been interrupted or sabotaged.

 

We are all here praying for you and wishing you every success in helping your child and family.

[Jean in Newcastle]

Maybe if you looked at the meds as a stop-gap measure while you worked on the diet and ABA stuff?

:iagree:   Don't try to make the diet into a power struggle.  Just buy things on the diet and only have those foods in the house for everyone.  

[BrittanyM]

Yes, it sounds to me like you all need to go GAPS and give her no other options. Start full with grain free baked goods and broth options. I'm so sorry that sounds miserable!

[mathnerd]

:iagree:   Don't try to make the diet into a power struggle.  Just buy things on the diet and only have those foods in the house for everyone.  

One family member of mine will eat what he wants and when he wants and does not believe that diet is a factor contributing to his ill health despite his doctor saying so. So, I stopped buying things that he should not be eating and cook only the things that he should be eating. It is hard for the rest of the family, but, we have eliminated several huge health issues because of doing this for the past many years.

Sorry about your mother doing this to your DD. I recommend that you cut out all the foods that your daughter cannot eat from your home. There seems to be no easy way to bring her health under control - going to the hospital so many times a month sounds hard for the whole family. And please try a high potency probiotic - they are available as powders and can be mixed in with food, juice etc so that your DD will not have another thing to fight over. They help with constipation - especially so if she has bad gut bacteria.

 

Good luck.

[Ravin]

I would get her a Behavioral Health/psychiatric eval ASAP, and let a doc help you figure out meds. It sounds like there's anxiety along with the rages--which reminds me of my DD before we got her issues under control with meds. Her health issues are different ones, but the behavioral health stuff sounds very familiar.

 

There is a lot of effective middle ground between "no behavioral health services involved" and "admit her to the psych ward." It sounds like you need to get her environment, her behavior, her SLEEP (this was SUCH a biggie for my DD and still is) and her diet all under control--and you need professional help to do it. Such help exists. Meds alone won't do it. Diet alone may not do it any more either--with puberty and everything else. Stopgap treatment for her bowel issues isn't going to do her any favors in the long run, either. You need a coordinated plan, and somewhere to attack the circle of bad. Meds can help break the behavior problems down to something that can be dealt with through behavior modification and therapy, which can bring cooperation in diet, which will help you get sleep and behavior under control, which hopefully will lead to controlled weaning from meds back to more like where she was at before her stay with your mom.

[Mrs Mungo]

A probiotic is a good idea. My son is on antibiotics a lot and probiotics help. I buy the ones from the refrigerated section of the health food store. I also buy ice creams with probiotics: http://www.lifeway.net/Products/FrozenProbugs.aspx

[idnib]

I agree with only buying the GAPS diet food and then going from there.  :grouphug:

[bettyandbob]

Put the whole house on her diet. Family members who are "missing" other foods can eat out occassionally. Add in probiotics. Hopefully, this helps to bring a little stability, decrease raging, make it possible to gain compliance on vitamins etc.

 

Seriously look at medication options. Sounds like anti anxiety might need to be considered.

 

If you fear for your safety, you need to consider hospitalization options.

[Rosie_0801]

I'd get her checked to see if her bowel issues are a chiropractic issue. If they are, it's an easy fix. If they are not, I've got no clue. Chiropractics can also help regulate hormones. Again, it is probably not a magic cure, but you would notice if it helped at all. (I pms like Medusa if I don't have a regular adjustment.)

When my dd was younger, she was a feral during the day unless she shared a bed with me at night. You said your dd was regressing so perhaps that's something to try to calm her down a little. Obviously not a complete cure, but something to try until you can get a decent system working. 

Probiotics help too. You can buy pills, but there are also naturally fermented foods like miso. Miso is tasty and pretty inoffensive, I think.

 

:grouphug:  :grouphug:

[amo_mea_filiis.]

Is it possible for her to be medically admitted and get some psych/behavioral help?

 

So far my son has had poor reactions (behavioral, mood, or allergic reaction to every med we've tried) so I've no choice but to tackle each environmental issue.

 

I agree with others to only buy food safe for her. Most kids will eat when hungry. If she's not one of them, you'll have to deal with that later, but chances are she'll eat.

 

Learn how NOT to get hit. This was huge for me. My son can scream, curse, and swing all he wants, but I will not let him physically hurt me. I will gently restrain as needed, and sometimes he gets so overwhelmed, that's what he needs; to sit and be physically restrained/hugged until he's calm. He will then hug me, apologize, and often cry.

 

Is she still small enough that you are able to restrain her if needed?

 

Is she on a regular miralax dose or other daily constipation routine? Have you seen a poop specializing psychologist?

 

If sluggish motility, when is her gi looking into everything?

[Ottakee]

Are you going to a children's hospital?  If so, ask for a team of doctors to help coordinate her care---mental health, GI, etc.

 

Have they ever tested her for mitochondrial disorders?  Those can produce many of the symptoms you are describing as they affect many different body systems---you have GI, immune, and behavioral (yes, mito can cause mental health issues).

 

It sounds like some crisis help is needed.  Medications are not a first line option for most cases but it sounds like you are well beyond that point.  Proper psych meds have made a 90% difference here for my dd.  The other 10% came from diet, lifestyle, parenting, etc.

[Chris in VA]

If you do admit her to a psych ward, pls be as present with her as they will allow and think healthy, even if you have to find child care for other kids.

(Don't know if you do have any other children...) Even if you are just sitting in a waiting area,

 

That's my momma heart talking. I don't know if it's good advice or not. I am still processing the times I had to commit my son, so take that into consideration. I can't read your post without flashing back a bit, so I'll leave this convo for now.

 

:grouphug:

[JFSinIL]

Do not hesitate to use meds to help stabilize her moods - she doesn't need to feel so bad, mentally, on top of everything else.  She may be better able to cope with her diet, etc. if she doesn't have to deal with extreme rage on top of it.

 

Her brain chemistry sounds like it needs tweaking.  If the doc you are using won't try meds, find another doctor!

 

(currently long-distance parenting a  young adult through the trial and error of finding the best combo or anti-anxiety/bi-polar meds so he can function at college - sometimes meds ARE needed!)

[Pippen]

I'm sure that you are very reluctant to admit her, but at her age and with her potential diagnosis, it's very important that she understand the message that being physically threatening to family members is unacceptable in every way. Many children of this age actually settle down in a short term residential setting because it's a safe place, and it would give a chance for medical and behavioral staff to observe and coordinate.

 

Picking up from your posts, you mentioned that before you left she was only doing somewhat better, provided that you follow a very strict regimen and that she's 12 and looking at a possible AS diagnosis. Getting such a child back to baseline who wasn't entirely stable to begin using only non-medication routes will likely be a very long journey--as in months to a year. Anxiety, sensory, physical aggressiveness, medical problems--there's no quick fix on any one of those when she's so unstable, but meds targeting anxiety and/or mood may help ease things enough to get her in a place where you can work with her.

 

If you haven't already, I'd suggest getting a copy of the book The Explosive Child by Ross Greene. The book describes strategies for dealing with explosive, inflexible children and while it won't totally solve behavioral problems, it can be a very helpful part of a parent's arsenal.

[Lizzie in Ma]

I am so sorry you are dealing with all this. :grouphug: :grouphug:

I know I may sound like a broken record, but could it be something else, like Lyme and co-infections?  I would do Igenex testing and fast.  You have nothing to lose by finding out.

 

It can cause a "Bell's palsy" of the gut

http://www.thehumansideoflyme.net/viewarticle.php?aid=62

and both Lyme and Bartonella can cause very serious neuro symptoms

http://www.mentalhealthandillness.com/tnaold.html

 

 

I know you wrote that she had been tested for Lyme.  Standard testing is inaccurate at best, Igenex is really the best way to go to be sure.  Also, look at her tests, they should have done a western blot.  If it wasn't CDC positive, the lab will mark it negative and it may not be.  We lost years that way and could have prevented much of our daughter's hell if we and/or our doctor knew this.

Anxiety, rage, panic attacks are all things our dd has from Lyme and bartonalla.

http://www.anapsid.org/lyme/lymeseroneg.html

[lmrich]

I am so sorry. Can she swim. I knew of a neighbor's son who lots of similar problems at age 6, and he loved the pool. Just wondering if exercise could help the gi issue.

[catz]

I'm so sorry.  :grouphug:   I've had some personal experience with this kind of thing (long story - we have IBS in the family that has gotten ugly at times).  The gut is VERY tied with anxiety, emotions, and the brain.  So I would definitely not underplay the importance of addressing the neuro-psych and emotional angle.  Not that I wouldn't continue to follow up medically with leads.  I would aggressively be following up on both angles. 

 

I would try very hard to have a firm schedule of food and snacks.  Try to feed a combo of a fat, protein, fiber.  Smoothies can be good.  I also think the idea of required daily exercise is very, very good.  Start small.  Walk a block or 2.  Get in a pool a gently wade for a little bit.  Yoga poses for a few minutes.  Maybe you're not at this point yet, but when you start making progress. 

[Alexigail]

I'm so sorry you're dealing with this.

 

 It sounds to me like her gut flora is shot.  This could be related to ASD or something else.  I have found the book "Cure Your Child With Food" to be really helpful for my son's GI issues.  Diet isn't always the answer, but it can help a lot.  Also, just like dietary changes, sometimes meds help and sometimes they don't.   But using medication when it's warranted isn't a failure in any way.  It's obvious that you love your child and have done an enormous amount of work to help her.  You're a good mom.  

 

I also think it would be a good idea for you to find a good therapist to talk to.  Having a child with special needs can be extremely stressful.  It has helped me immensely to talk to someone about my own needs as well as strategies for helping my son.  

 

 

[NatureMomma]

Sorry for all the typos- im on my phone!

Thank you ladies for all the thoughtful, helpful replies. I can't figure out how to multi quote so I'll try to answer.

She's been tested for lymes, but is showing negative and we live in a low risk area.

Her GI issues and other immune issues tarted after she got mono- they snowballed and just got worse.

She's been tested for so many things, and they can really find what the issue is. We do actually have an apt. To see a mitochondrial specialist as that was one thing that stood out that could be a possibility. Part of the problem though is every dr. Has a different diagnosis. It's hard to weed through what the problem is and get her proper care when they're all saying something different.

She finally does have a team of drs all working to coordinate her care. She has been seeing a GI specialist, they did a colonoscopy/endoscopy a month ago and said there's no structural damage with her stomach but the sitz marker test took more than 5 days to work its way through, so they are not sure why... Could be damaged or unresponsive nerves. I don't thinly hey know why.... But it's a huge part if her behavior problems. When she is getting backed up, her behavior seems to get much, much worse. We can usually tell that things are at critical mass because it escalates.

 

As far as food goes- she did very well in Gaps on and off for a a couple years, and it helped a lot if the GI issues which is the main reason why we did it. She will NOT touch chicken broth, or anything even semi gaps related. She wants a typical diet, and I tried 3 months ago, withholding everything but gaps food, and she didn't eat for days and days. She had already lost a lot of weight from the hospital stays, and is thin to begin with, and she said she'd rather die than eat gaps diet, and she wouldn't do it. She got sicker and sicker and I finally caved. So no- she won't do the diet. In my heart I believe it will at least help her repair her stomach, and calm her.

 

So I limit grains, we eat whole foods, no processed, but there's obviously reactions going on there.

She has been on a good probiotic for a few years, we eat fermented foods, etc.

 

I'm starting to think after reading your responses that she may need some medication. I am SO scared to do this- I have seen people have such adverse reactions, I really wanted to help her with other methods, but you are all right. She's 12, and she's actually extremely strong for her age. Stronger than me, when she is raging she's screaming, kicking punching, full force, and I am trying to hait protect myself. I am calm, but nothing stops it. What makes matters worse is that my husband works outside on our property,(in a small building) and he's talking to clients from some of the biggest corporations, and when she is raging she wants to run outside a pound on the door, in the yard, screaming. We are afraid he will lose his job and also that the cops will get called.

So I have to literally block the door so she can't get out, and I'm her target. The tantrums usually last about 30 minutes. That's kicking, screaming, punching, and I'm just a mess when it's over- otherwise id lock myself in a room. Like I said, she is stronger than me and I can't restrain her.

[catz]

I'm so sorry you're dealing with this.

 

 It sounds to me like her gut flora is shot.  This could be related to ASD or something else.  I have found the book "Cure Your Child With Food" to be really helpful for my son's GI issues.  Diet isn't always the answer, but it can help a lot.  Also, just like dietary changes, sometimes meds help and sometimes they don't.   But using medication when it's warranted isn't a failure in any way.  It's obvious that you love your child and have done an enormous amount of work to help her.  You're a good mom.  

 

I also think it would be a good idea for you to find a good therapist to talk to.  Having a child with special needs can be extremely stressful.  It has helped me immensely to talk to someone about my own needs as well as strategies for helping my son.  

 

Oh very good point - probiotics are super important here.  Flax based fiber is good and not harsh like some things like metamucil. 

[NatureMomma]

Oh one more thing- we've tried EVERYTHING to get her to go. All the natural stuff has done nothing, even with a daily dose of miralax and exlax she manages to get blocked up every couple of weeks!! So frustrating because I feel that if we can just get her regular, and out of the hospital we can work on healing her emotionally as well, but its hard to get a restart button every few weeks. It's such a vicious cycle and part of the reason we can't establish a rountine, which makes everything worse.

Oh one more thing- we've tried EVERYTHING to get her to go. All the natural stuff has done nothing, even with a daily dose of miralax and exlax she manages to get blocked up every couple of weeks!! So frustrating because I feel tthat if we can just get her regular, and out of he hospital we can work on healing her emotionally as well, but its hard to get a restart butting every few weeks. It's such a vicious cycle and part of the reason we can't establish a rountine, who h makes everything worse.

[unsinkable]

I am so sorry.

 

I wonder if she might be getting her period soon on top of everything else? And the hormonal fluctuations are contributing?

[NatureMomma]

Oh very good point - probiotics are super important here. Flax based fiber is good and not harsh like some things like metamucil.

How do you take flax based fiber? Are they capsules, or do you put it in in food? Too much fiber actually clogs her up,

[Tiramisu]

You may be limited with what you can do for the gi issues, but you can keep working on them with probiotics. Remember when things aren't moving, it gives pathogenic bacteria a lot of time to multiply and give off toxins, which is what you may be seeing in her behavior when she gets blocked up. Probiotics will naturally work against that process. There's also something that's been developed in Israel I read about. It's a vibrating pill that can help motility in cases of chronic constipation.

 

At this point, please don't hesitate with the meds for the behavioral stuff. Seriously. Your family is at rock bottom. I would suspect she needs a mood stabilizer as a first step. I think those are the ones that stop the rages, but that's only from what I've read on these forums.

 

As long as things continue this way, with you walking on eggshells, worried about your dh losing his job, the violence, etc., it is impossible to heal emotionally. Get all the therapy you can but try the meds ASAP. Mental health hospitalization can speed the med process if you need that.

 

Right now, after reading your story, I see the meds as your only choice to break the cycle. It doesn't have to be forever, but it could give you the chance to jumpstart the effectiveness of therapy. Most of all, it will allow you to start rebuilding your relationship if you aren't afraid all the time of what's coming next and can let your guard down and establish a normal, loving, not adversarial, relationship. The relationship stuff is what will mean a lot to your dd in the long run.

[catz]

How do you take flax based fiber? Are they capsules, or do you put it in in food? Too much fiber actually clogs her up,

 

None of the regular over the counter stuff works well for me (metamucil, ex lax, miralax).  I've had IBS for years with very few flares when I take probiotics and 1-2 TBS ground flax daily (start with like 1 tsp).  I mix it into watered down orange juice usually, but mixing into a smoothy works well too.  I make my dd like a strawberry banana avacado yogurt smoothy with a little raw honey and flax.  The flax is pretty undetectable in a smoothie.  I also throw flax into waffle batter, muffins, etc.  I do tend to mix up my flours and use whole grains.  Gluten is not a specific issue here. 

 

I don't have food allergies per-say but do have some triggers.  Refined sugars and flours are not great.

 

ETA - I also would not hesitate with drugs to stabilize mood, rage, etc so you can make forward progress.  I had PPD that led into my worst gut issues of my life.  By making progress on the PPD, I made progress with the gut trailing that.

[Pippen]

If you aren't already having her seen at a larger university/research hospital, that might be worth seeking a referal to. She has so many issues going on and they are organized to deal with complex issues in a coordinated way, and can often do so in shorter time frames than smaller hospitals.

 

Have they tried low-dose erthromycin to improve motility? (And yes, I've spent too much time in a healthcare setting recently.)

 

Food refusal and blockage issues can become very severe very fast, and land kids on tube feeding in a hurry which opens up the doors for a whole new set of problems. Sometimes when dealing with these inflexible kids or rigid thinkers the very rules, controls, and structures we put in place to help them can backfire in big ways. Would you consider suspending the food rules for a short trial period in order to put her in the drivers seat? Take off the locks and give her free access to whatever foods you have in the house whenever she wants them. Stock healthy foods with some treats, and clear any true junk out of the house (if there's any there now). It would give her some control, but it wouldn't be a free for all like grandma's house was, and may ease up some of the anxiety. Two caveats: 1) she keeps a journal of what she eats and when she goes, and 2) if her behavior or physical health spins out of control then the experiement is off. Agree upon a set time once a day where you'll check with her and otherwise don't quiz her. You could even suggest she leave you a note on the computer at the end of the day, as that further puts her in charge instead of you quizing her on what's likely become a big issue in the past weeks or months.  (And yes, I've had my share of experience with less flexible, non-compliant kids.)

 

Just a thought--It could be that at the age/place she's at now, giving up control to her might get her over this hurdle faster.

[TechWife]

I'm with the others - I think she very well might need meds to help her break the cycle. Honestly, if she's not thinking clearly, then her refusal to follow a diet could be related to that. I agree with seeking treatment at a children's hospital that can co-ordinate care among specialists. Additionally, I think you need to call her primary care doctor and let him/her know that you are at the end of your rope and that you need urgent help. If she has a GI related hospitalization, please ask for a psych consult while you are there. If she ends up with a psych admission, then make sure you have a comprehensive discharge plan that includes a behavior contract (you can include diet in the behavior plan). Please don't put this off, it will likely not get better on it's own. Do it not just for her, but for her entire family.

[Jean in Newcastle]

You need to tell the doctors exactly how her rages go and how you are being hurt.  It may feel embarrassing and shameful to admit this but they really need to know the extent of this.  

[NatureMomma]

Thank you so much for all the responses. I feel so sad listening to some of your stories,:(

It seems so many have gone through similar things with their child. Its heartbreaking to watch... but I feel there's hope.

To answer a few questions- for the past 5 months, we finally have got all her drs on the same page. She's being seen at a medical university, and they have a really good Psych program, we have a call out today to see if there's something to be done. Establishing a mode of operation when this happens would be really helpful as well.

 

She woke up feeling very sick, but contrite, and has been very cooperative so far today. The miralax/exlax concoction didn't do the job, and she's scared to go to the hospital so she's pushing through and trying to excercise. I'm not sure if she just reached rock bottom and she's scared now, I feel bad for her because she seems to want to be different she just can't control herself....

 

What's a behavior plan exactly?

Is that something that the pysch and parents establish- and what happens if the child is non compliant?

 

We have been giving her free reign to food- that's part of the problem I think. She can NOT stop stuffing her face, and its making her sicker, as she just can't pass it through. She was eating nothing but potatoes, bread, and apples for weeks. Her dr. Told her that she eats what I put in front if her, or he would put her in the hospital for 10 days and force her to eat other foods- because she's harming herself. That did scare her, and she's better, but she still limits -and has no control. It just sits and rots in her!

[TechWife]

What's a behavior plan exactly?

Is that something that the pysch and parents establish- and what happens if the child is non compliant?

A behavior plan is just what is sounds like - behaviors that are expected. The psych, parents and patient develop this together, with varying degrees of input. The consequences for non-compliance are spelled out in the behavior plan. Everyone knows what's expected and what will happen if expectations aren't met. Likewise, there can be rewards built in to encourage healthy habits.

[TechWife]

We have been giving her free reign to food- that's part of the problem I think. She can NOT stop stuffing her face, and its making her sicker, as she just can't pass it through. She was eating nothing but potatoes, bread, and apples for weeks. Her dr. Told her that she eats what I put in front if her, or he would put her in the hospital for 10 days and force her to eat other foods- because she's harming herself. That did scare her, and she's better, but she still limits -and has no control. It just sits and rots in her!

Did the doctor follow through with the hospitalization? The fact that she has no control can be helped through appropriate medication until she can develop a healthy outlook and self control in that regard.

[Denise in Florida]

That's what I was thinking, too. :( You've got to get her to a calmer, more cooperative level so you can re-implement the practices that you *know* make a difference. Maybe meds are the way to do that, maybe the transition can be made while she's in the hospital...be willing to think outside the box...

 

I am so sorry this is happening. I have one son who raged as a child and was not OK due to a gluten intolerance but is perfectly fine after a decade of a healthy gut on a GF diet. I've often wondered what his life would have been like if his diet, which was a simple and easy cure at the time, had been interrupted or sabotaged.

 

We are all here praying for you and wishing you every success in helping your child and family.

 

 

My gluten intolerant child had most neurological symptoms.  Insomnia, fatigue, brain fog, depression and anxiety.  

 

I actually had a fairly easy time instituting gf rules for her because we had a mother and child with celiac in our homeschooling group. I did not have to explain gf or how important it was because the tough work of explaining it had already been done. 

 

Accidental exposure because someone doesn't know what to do is bad enough but deliberate sabotage. yikes

[Ottakee]

Glad she is going to see a mito specialist.  Often when there are lots of different things going on that don't seem to be related they are related through the mito.