Need support and advice

[wapiti]

Oral magnesium and/or epsom salt baths are great ideas.  For the bath, I'd start with a half-cup of epsom salt for a small child.

 

On the melatonin, for many people, less-is-more, and too much can make it harder to sleep.  I would try a much lower dose, say a half mg, or 500 mcg.  I use a half of one of those, or 250 mcg, myself as well as my kiddos.  Trader Joes makes a peppermint chewable 500 mcg.

 

More thinking out loud:

 

Evening primrose oil is another possibility (typically capsule is too huge; I'd cut it and squirt some into a spoon or into food or something), just to take the edge off a little more.

 

If herbals are a possibility, I'd try ashwaghanda, maybe a tenth of a capsule, for sleep issues for a small child.

 

I would avoid D and B vitamins late in the day.

 

Phosphatidylserine can help lower cortisol levels and comes in a gummy version at the vitamin store.

Edited July 20, 2017 by wapiti

[Gratia271]

The idea about lowering cortisol levels is great!  I didn't think of that, but I am convinced the stress hormones are absolutely in play with her.

[Guest]

Edited for privacy.

 

Hope all works out for the best!

Edited August 11, 2017 by Guest

[Gratia271]

Thanks so much for your input! :)

[Guest]

deleted for privacy

Edited August 11, 2017 by Guest

[PeterPan]

Healing Trauma: A Pioneering Program for Restoring the Wisdom of Your Body

 

This book has a tapping procedure that ostensibly is for trauma that also happens to be pretty much what they are teaching people to do for interoception (sensory processing issues). So either way, whether you call it trauma or sensory, the tapping exercise could be calming or useful. Sometimes emotions will release. It's also a really good mindfulness exercise. 

 

It's easy to make happen with kids, if they're compliant. You could lay a blanket over her and say you're tapping a mystery part and for her to tell you what it is, say the affirmation and how it feels. 

 

And the mention of mindfulness is because a few minutes of mindfulness will improve her EF and self-regulation. The more calm you can get her, the more chance you have of getting that constant fright/flight thing down. So doing mindfulness multiple times a day, for a few minutes at a time, can be a really good strategy. There's Sitting Like a Frog that you can find completely online. You literally just play a soundtrack and listen to it together. That would be 5-10 minutes. Then later in the day sit and remember a happy place you were at in the past. Let her close her eyes and remember the happy thing, like how it tasted or smelled or felt. That's another mindfulness session. Then do the tapping and body part naming, and that's another mindfulness session.

 

It at least probably won't *hurt*.

 

And yes, the epsom salts have magnesium.

Edited July 21, 2017 by OhElizabeth

[Gratia271]

Any of you with experience, if you could please advise me, I think we just need to take E to the ER or somewhere to get help.  Nothing is consoling her, she drinks barely anything and has only had several tablespoons of yogurt per day for the past 4 days.  Should I just take her? And if so, where should I take her?

[maize]

Yes, take her to the ER.

 

:grouphug:

[Gratia271]

OK.  I am going to head out as soon as DH returns. Thank you.

[Arcadia]

:grouphug: ER. They may need to put her on an IV drip (as in be mentally prepared).

Edited July 22, 2017 by Arcadia

[Storygirl]

:grouphug: :grouphug: :grouphug:  I think the ER is a wise choice.

[wapiti]

In the search for answers, if you go to the ER, I suggest getting a throat culture.  Also, if they need to place an IV for fluids, that is a great time to draw bloodwork, after the IV is inserted but before the fluids are started, so that there's no extra poke.

 

Praying for you all!

[8filltheheart]

I would go to a hospital with a pediatric psy wing.  ((((Hugs))))  I hope you find support and answers soon.

[Guest]

:grouphug:   :grouphug:  Praying for you and your family! I think this is the best decision. 

[kbutton]

:grouphug: I think you are wise to take her in. 

[PeterPan]

How is it going?

[eternalsummer]

Poor little kid :(  I hope you've gotten some help at the ER.

[geodob]

Gratia, what you have described causes me to recall research I read some years ago.  That looked at children adopted from Eastern Bloc countries.

Which also looked into how we develop a concept of the 'Other', and develop a 'Trust in the Other'?

That is basically formed in the first year of life.

What forms this, is when a baby cries?  That a parent or carer responds to their cry.

Which may not be immediate, but happens soon enough,

That a baby develops a trust in the other person, that they will respond to their cry.

 

Though also of importance, is the 'manner of the response'?

Where a positive manner, enables a baby to develop a trust that the other will be sympathetic to needs.

 

But what this study identified?  Was that babies were left to cry and cry, and were only responded to. According to a time schedule.

Then when the response occurred, it was most often done without any sympathy/ empathy.

As it was carried out more like a mechanical process?

 

Though this ongoing experience for a baby, develops their personal 'concept of the other'.

Where the crucial issue, is 'how much Trust they can place in the other'?

 

But this study identified that children adopted from Eastern Bloc countries?

Often hadn't developed a trust in others.

Which was based on a luck of trust in those feeding them, and soothing them.

 

Then when these infants are adopted, they have no concept of being able to trust their new Carer?

Where this 'lack of trust', can develop into a 'dis-trust of the other?

 

Though you wrote about her 'hyper-vigilance'?

When we can place trust in others, this enables group vigilance.

So that we can feel confident in others looking out for us,

Which makes me wonder about her 'opening eyes every 7 minutes, while sleeping'?

We can only sleep continuously, if we feel safe in our situation,

But if we don't feel safe, then we might wake every 7 minutes, and just check that we are still safe?

 

Also with eating?  

I wonder if what difference it would make, if she was involved with selecting the food and putting it on her plate?

As their is a lot of trust, in letting someone else choose what we will eat,

 

Where you also wrote about her 'need for control'.

We only give control to others, that we trust.

 

So that basically, I wonder if her issue is with having trust in others?

When you go away for a few days, can she trust that you will return?

[Guest]

deleted for privacy

Edited August 11, 2017 by Guest

[Gratia271]

Please don't quote. I'll remove later

 

Edited July 26, 2017 by Gratia271

[PeterPan]

Yes, it sounds like she needs professional help, poor thing. 

 

You're a true mother to get her this help. I hope you can find someplace soon! 

[kbutton]

:grouphug:  :grouphug:  :grouphug:  

 

I think that if you can, I would turn the tables and say, "What diagnosis code would get her admitted (or whatever), and where do I need to go to find a doctor who can evaluate for that?" 

 

 

[PeterPan]

I don't know, but is it partially saying the ER isn't the right place for her, that she needs a facility who can handle that level of care? You might contact a children's hospital in your state and just ask. The place doesn't have to be close. If she's going to be there a while to get stabilized, it can be a bit of a drive.

[Gratia271]

No, ped said that therapy is the only thing that is going to address her problems so unless and until she is completely dehydrated it really doesn't require medical attention.

[kbutton]

I might seriously call a lawyer who specializes in medical stuff and ask what you can legally do--is it neglect to sleep and let her get dehydrated so that you can take her to the ER? It's not like she's too little to feed herself if the food and water is made available the other 16 hours per day.

 

What is the criteria for a psych admission? Is it really dehydration? 

 

What does it take to get a second opinion on the psych issues? (I think you said this is in the works?)

 

You shouldn't need pediatrician approval to go to the ER. That seems weird to me.

 

I would call a hospital or community social worker (but know your rights first). A hospital social worker is to connect to services. Not sure about community-based.

[Gratia271]

I just spoke to our adoption social worker who told me to ignore the doctor if necessary and just take her.  I am texting DH and think I am just going to take her regardless.  I shouldn't have to wait for E to get any worse.

 

ETA: adoption social worker told me that psych evals are always a long wait list (don't know why) and to just get her medical attention in meantime.  It's so surreal that helps takes 6-7 months to get.  The social worker is trying to also locate anywhere we can possibly take her at age 4 since so many residential programs and in-house care are for 6 and up.  We do have a children's hospital I will likely head to, but they don't have a psy ward.

Edited July 24, 2017 by Gratia271

[Gratia271]

I'm heading out now, so hopefully we can get her some help. Will update when I know anything at all.

[Lecka]

I think you might think about special needs pre-school in the Fall.

 

You would want it to be good for her, but please don't think she is so difficult that nobody but her family could love her. It isn't true, there are places where aides would love her and want the best for her.

 

I don't think it is a definite thing to do but I think consider it, you can potentially use that time to be with your other kids. That is how special needs pre-school was with us and it made a huge difference for my daughter.

[Arcadia]

:grouphug: :grouphug: :grouphug:

 

We don't need a referral for ER. A children's hospital is still good, at least it could bump your child up the waiting list if they do a urgent referral.

 

I don't know if you can get respite care for children suffering from trauma. My neighbor had respite care for her young twins with autism (diagnosed as toddlers) so she can have a breather.

 

ETA:

Quoted for Missouri. I forgot which state you are in.

"Why should adopted children receive respite care?

 

While the need for respite care for foster children is clear, some people may wonder why adopted children need respite care. After all, they are in a stable, committed family. However, it is important to remember that these kids have been adopted from the foster care system. The numerous challenges they have, and the frustrations experienced by the parents, do not disappear when a family makes a lifetime commitment to them. The state of Missouri recognizes this, and includes a respite care subsidy in many adoption contracts." https://www.fosteradopt.org/independence-mo/programs/respite-care/

Edited July 24, 2017 by Arcadia

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

[Guest]

:grouphug:   :grouphug:   :grouphug:  I wouldn't have even bothered to ask the doctor. I would have just taken her to the ER. I would also look for another ped as this one does not seem to be listening and is very clearly giving you bad advice. Giving her everything she wants is not the solution, and how things have escalated is proof of that. I hope you can find the best solution for your girl and for the whole family  :grouphug:

Edited July 24, 2017 by Guest

[Gratia271]

WE spent a very long time in children's hospital ER getting her rehydrated along with xrays and enema due to colon being full from not eating or drinking. Long story short, ER dr. told her she needed to cooperate for us and sent us home. 

 

I did talk to a local adoptive mom and got a list of places to call about therapy for her, so I am going to call them and try to find someone with availability sooner than later.  I  also spoke to our adoption agency and they referred me to an advocacy group who can try to push through some referrals.  They said it's at least worth a try.

 

All the doctors we have seen have said she really needs a psych eval but none seem to have any power to push it through unless and until she seriously hurts herself or tries to hurt someone else. I guess that is the standard around here. :confused1:

[PeterPan]

Ban you get a BCBA (behaviorist) to get you an in home worker? I've got college students, $20 an hour. It would give her some variety and ease your strain.

[maize]

I'm looking into the protocol in this book for my own four year old; it is mostly geared towards supporting/improving gut health to help kids function better.

 

I think it may be worth trying for your dd.

https://www.amazon.com/Prescription-Autism-Natural-Approach-Happier/dp/0814436633

[Gratia271]

Ban you get a BCBA (behaviorist) to get you an in home worker? I've got college students, $20 an hour. It would give her some variety and ease your strain.

 

This state support group is supposed to be able to arrange that for me once I get a call back.  The adoption social worker said they can try to coordinate a lot of things and push some things through.

[Gratia271]

I'm looking into the protocol in this book for my own four year old; it is mostly geared towards supporting/improving gut health to help kids function better.

 

I think it may be worth trying for your dd.

https://www.amazon.com/Prescription-Autism-Natural-Approach-Happier/dp/0814436633

 

I will look at that.  It is so hard to know what E is really like because she doesn't eat or sleep well.  I would like to believe that if we sorted that, she would be in a better place and not so oppositional and distractible.  That's why we tried meds for sleep, but they didn't work.

[Gratia271]

We are going to request a sleep study at the peds hospital so they can see what we are dealing with and maybe address that issue.

[PeterPan]

I'm all for body work, but for us having the fresh workers come in is generally very calming for ds. There's routine to it, and they're focused totally on him. It's usually doing highly preferred stuff. For him, it's very calming. 

[Storygirl]

I'm glad the ER was able to help her physically. I hope some of the your new contacts can help find a way to get a psych appointment faster. And a sleep study sounds like a great idea. I'm praying for your family. :grouphug:

[geodob]

It would be well worth having her Cortisol levels tested, as this could provide the explanation?

This can usually be done with a saliva test, but as she is nearly dehydrated.  She need blood tests.

Normal Cortisol levels, are highest in the early morning when we wake, and are lowest at night when we go to sleep.

 

If her Cortisol is high in the evening, then this could be the main factor effecting her sleep.

But another important factor about high Cortisol, is that it causes the digestive system to stop functioning.

It causes glucose for the cells, to be produced without using carbohydrates,

Which could be the cause of her not eating?  

 

But another thing, is that the ability to control Cortisol production, is mainly developed in very early childhood.

Which use the 'Hypothalamus, Pituitary Gland and Adrenal Gland'.

That form something called the ' hypothalamic–pituitary–adrenal axis (HPA axis ).

Where the HPA axis is of particular importance, as the regulator of Cortisol.

 

How it develops? Is that when a baby cries, Cortisol is produced.  Then when the Parent/ Carer responds, this triggers a 'feedback mechanism' and the HPA axis turns off the Cortisol.

But when a baby recieves little response, on an ongoing basis?  

This impedes the development of the 'feedback mechanism', and the ability to regulate Cortisol.

Which can result in what is termed as 'Hyper-reactivitiy'.

Where very minor stressors, can trigger Cortisol production and not be switched off.

Yet Adrenaline is also being produced in this process.

Which is also termed as 'Fight or Flight Response'.

 

So that what could be her issue?  Is an inabilty to use her HPA axis to regulate her Cortisol and 'fight or flight response?

Here's a link to a wiki article on the HPA axis:

 

https://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

 

[PeterPan]

And mindfulness can chill the constant fright/flight and freeze responses, which can then lower the cortisol levels. When you read the trauma literature, they're connecting CFS, MCS, asthma, a lot of those long-term health problems, to the stress reactions from trauma.

Edited July 26, 2017 by OhElizabeth