Desperately need help-

[NatureMomma]

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!

[Tokyomarie]

How very difficult! How old is your daughter? How old was she when she first started having medical problems? Did there seem to be an initial precipitating event or has something always been on the radar since birth?

[mommymonster]

((hugs))

 

How old is your daughter? Has she been tested for celiacs or gluten sensitivities? Other allergies? Is she an oral eater?

 

Is she verbal? Can she tell you why she feels traumatized? Is it the repeated hospitalizations? Staying with Grandma? 

 

A little more information, and I'm guessing the good people on the board might be able to give you some ideas (although I'm guessing you've done so much already).

 

 

[PeterPan]

How long have you been back?  Do you for some reason *doubt* the aspergers/HFA label and think she wasn't that way before?   This is the kind of stuff my ds does, and when he's that way I give him Calm Child.  It's an herbal tincture you can buy online or at the health food store.  Works in about 20 minutes here.  You might see if it would help her.  

 

On the bowels thing, yes feeding her whatever would log her up, but it probably means she's low tone. [not the only reason, not a medical statement or diagnosis] The OT will identify that.  Hopefully the OT is good with sensory and can help you find things that help her get back to a peaceful state.  For some people it's screen time (in EXTREMELY LIMITED doses), so you try to figure out what those things are for her.  You might try getting her massage 1-2 times a week.  Might help chill the sensory, will help stimulate overall function (lymph, detoxing, etc.), and will put her in a more peaceful state. I know that sounds really extravagant on the massage, but try it.

 

If she is aspie/hfa, then your leaving and coming back is a HUGE transition for her.  You were gone and she got used to this different life, now you've changed her world.  That's why I asked how long she has been back with you, because that's a lot of change for her to deal with. I've read other people saying this, and it's definitely true for me, that when people are gone from my life I literally FORGET them.  I don't recognize them when they come back and have to get used to who they are all over again.  It's always surprising, because it happens even with my kids if they're gone for a day.  If they're gone for longer (a week at Grandma's or a week of camp) it's really rough.  If this doesn't happen to you it doesn't occur to you how serious this could be.  

 

You might get something like this from the library  The New Social Story Book, Revised and Expanded 10th Anniversary Edition: Over 150 Social Stories that Teach Everyday...  and see if it could help.  She might need a way to reframe what she's feeling.  I'm just saying it's really easy to assume it's all candida, all the fault of the diet or your mother or whatever, but her brain is whatever it is.  She's interpreting the world the best she knows right now.  Even if *you* read the book and let it help you figure out how *she* thinks and the types of things that could be confusing to her.  

 

I suggest you talk with your mother about what routines she used to keep things peaceful.  Sometimes people don't have the words for it but land on things that work.  You might try to talk with her in a non-confrontational way and ask her for help and ask her what she did to make things work.  She may have had routines that you could replicate to bridge, making for less transition.  She may have found a lovey or some techniques or things that were good for getting her to green zone.  You don't have to throw out EVERYTHING she did just because some things went haywire.  

 

Have you read The Body Ecology Diet yet?  Sounds like the direction your thinking is going.

 

Btw, when I send my ds to my MIL's, she feeds him things that make him worse (dairy).  It's easy for me to blame her, but the fact is he gets this way because he has problems.  She didn't make him that way or cause it, and it's not her fault.  In the meantime, release yourself and your mother from this guilt.  Your mother didn't MAKE your dc aspie/HFA.  

 

:grouphug: 

[NatureMomma]

My dd is 12, she's been tested for celiac, and she doesn't have that. But she has extreme sensitivity to almost anything that goes through her mouth. Everything seems to affect t her, make her feel sick, or make her behavior worse. When she was on the diet, I noticed the most help, she was just so much calmer.

Oh Elizabeth, thank you for the book suggestions, I will look into those as well as the calm child.

We saw different quirkiness and some social issues, and attention issues that have been there always, but she was generally happy, so we really kind if just worked with her. I always suspected she had high functioning autism/asbergers, but it never got in the way too much, and now I really, really regret not getting some early intervention help. I feel like its too late. The problems seemed to exacerbate in the last 2 years with being sick. She also has really bad OCD and sensory issues.

She has never done well with kids her own age, and has always had problems talking at you, more than a two way conversation, and it seemed like focusing and sensory issues previous to these episodes.

 

We've always had little to no tv. In fact until recently, she wasn't watching ever, now she watches about 20 minutes a day.

It's just so hard though with her being sick all the time, we can't establish any routine as she may be sick for 3 weeks and well for they next 3 days. We never know when she will crash, and she is basically non compliant with every request.

[wapiti]

:grouphug:

[Atilla the Mom]

I have no advice on the GI issues. 

 

With respect to the behavior issues, because you didn't have TV and she was uncomfortable with other kids, she most likely never saw alternate ways than those  in her home - which you say was super strict - until she lived with Grandma for a month.  Suddenly she went from total control to huge freedom. She probably watched TV until her eyes fell out, stayed up late eating popcorn and did whatever whenever.  From the point of her allergies and GI system that was a big error.  From the point of view of a girl entering adolescence it was like, wow. Wow! WOW!!! I LIKE THAT!!!  She sounds like she is currently on the dungeon level in terms of privileges, so she has no reason to cooperate with you, but at this point you are going to have to negotiate with her so she needs some privileges so that you have something to withdraw. Does she have a cell phone?  If not, she most likely wants one, and there are parental controls available which will limit the amount of  time she has available on it. Does she have any control over her meals?  Likely she wants some.  That too can be a negotiating point.  Are there things she likes to do?  They need to be scheduled into her day/week if humanly possible.  Home has to be something other than a jail cell. 

 

A lot of this is adolescence.  My eldest also had a bunch of hits, although none in terms of allergies/GI sx, but she was okay until we moved to a different state in which there was a high Hispanic population almost entirely composed of recent immigrant males there for the construction boom.  She had previously become used to being ignored as the sole Hispanic kid in whatever school she attended previously - I'm asian but my kids are adopted - but suddenly, total strangers were rushing up to her in the grocery stores thrusting their telephone numbers on her. She went from a 14 year old social epsilon in a cold white world to a social alpha in a hot Hispanic one overnight. It was definitely "eager young lads, and roues and cads" all wishing to offer her "food and wine," and it absolutely went to her head. 

 

I reacted like the Asian tiger parent that I am. I forbade her friends the house unless I could meet their parents, watched her like a hawk, and took away her cell phone and other privileges when she rebelled against these restraints. This scared away the lesser evils, but, since she felt she was fighting for life, liberty and the pursuit of happiness, it pushed her into a more dangerous set of friends, the ones who were willing to buy her cell phones (which I kept finding and confiscating), and sneak her out of the house at night. We had locks and alarms on every window and door; she made a bolt hole into the garage through an interior wall and evaded all of these. She was hanging out with an exceedingly dangerous set, including at least one older predator, and I lived in fear of her being kidnapped and turned into a sex slave in some mexican bordello. 

 

I  figured she would stop making progress in therapy if I sent her to boarding school; we were still doing a lot of intervention. A regular girls boarding school would have been too difficult for her and I didn't think she could get in, anyway, or "fit" if she did. I did consider sending her to military school except there are no girls military schools and at that age, girls are an obvious target in coed military schools, especially when you consider most boys are sent to military school for cause. In addition, military boarding schools are mostly places where troubled rich kids can get their "been to high school."  (When she was eleven, I had sent her to a coed military school for the summer to take for credit Algebra there because her school refused to put her into either 7th grade Algebra or Prealgebra for the next year, and I wanted her out of their bottom track which would have been more of essentially 6th grade math.  She got an A in the course and enjoyed the experience, but didn't actually learn any Algebra.  Her school and I compromised on Prealgebra.) 

 

The things that helped were as follows. (1) We got her out of Dodge. We sent her to spend the summer in a girls only wilderness adventure program and while she was gone, we moved out of that state to another in which there was a city where there was still a large Hispanic population, but it was mostly second generation and respectably middle class and conservative.  She came back feeling normal and acting sane and fitted better into this second generation Hispanic population. (2) We got counselling, and yes, the counsellor told us she needed to have some privileges.  (3) We didn't allow her to get physical with us any more and quit making excuses for her acting out aggressively.  After she returned from that program, she attacked me in a fit of frustration just once.  I called the cops.  She spent the weekend in jail and didn't like it at all.  Of course I refused to press charges or cooperate with the prosecutor so the charges were dropped, but she never struck me again.  After that she would walk away from confrontations.  Yes, they can learn. 

[Lecka]

It is not too late!  You have helped her all this time, and parents are always the most important. 

 

I just read through a book yesterday at the library, and I was impressed, and the same author has a book I hope would be good.

 

Deborah Lipsky, From Anxiety to Meltdown:  How Individuals with autism deal with anxiety, experience meltdowns, manifest tantrums, and how you can intervene effectively.

 

In addition to other things on your plate and others have mentioned, I want to mention another thing.  

 

My cousin has gotten an additional diagnosis of some mental health issues.  He has aspergers adn for a long time it was like "oh this is just asperGERS>"  

 

It has turned out that the mental health issues are treatable!!!!!!!  

 

Basically they were missed b/c people though "it is just part of aspergers."  In his case.

 

He has done well with medication for anxiety and he is seeing a doctor now trying to find the correct doses for some other medicine.  It is still hard but it is better.  

 

So i would ask -- if there could be anxiety and could the anxiety be treated, and things like that.  

 

It is hard to know - -it could be a lot of things, and her food issues are important too.  

 

My younger son has autism, too, and we do a behavior plan, that kind of thing.  if there is any chance you coudl have a behavior plan developed by a BCBA -- that would be great.  You would want to get a nice person!  It might be something to help until you can figure out the underlying behaviors.  

 

In my state (Kansas) I have heard something mentioned, a "crisis waiver,' that can help people get BCBA  intervention, but I don't know details about it.  There might be something like that. 

 

I think you need to call around and ask what is available.  The neuropsych's office might have numbers it gives out -- referring you to places.  Or you might google autism and your state, or behavioral health and your state.  You might have to call a lot and not talk to someone who knows how to get you info, but someone eventually should know what you need.  Or maybe it will be easier.  

 

I think you might also google BCBAs in your state and try to find one.  They are going to have experience with aggressive behaviors.  My son mostly works with a BCaBA and she is excellent, she does also work with older clients with severe behaviors.  She is good with sensory issues.  I am thinking like -- maybe you can't put her in the car and take her to the doctor to see about anxiety treatment or other treatments, b/c her behavior makes it not possible.  In my town there are BCBAs who will go to your house and make a behavior plan for your house, for you to follow, and give you parent training.  But I don't think it can replace other things, but if she needs that it might be helpful. 

 

 

 

[Lecka]

Oops, I re-read, I see the OT wants her to see an ABA specialist.  

 

Okay ----- an ABA specialist is likely a BCBA.  That is the certification.  I think someone can be excellent without having the certifications, but if they have the certification, it means they passed the test.  Does it mean they have the experience you want?  Or that they are nice and will connect with you guys?  No.  But -- an ABA specialist sounds very promising to me.

 

I would try to get in with this person, be honest, ask if they can observe in your home and see if they can identify any triggers (besides food/medical) that your daughter may have.  Ime the people I see know about sensory or can work together with an OT on that.  They have a reputation for not being good with sensory but I haven't had that experience, I think you might just watch out for that though.  

 

If you like the OT you see, that person may have a good professional network and may know that a certain ABA provider would be able to meet your needs.  

 

I hope so!!!!!!!!!!  

 

So sorry your daughter is struggling right now!!!!!!!!!!!!!!!!

 

I will also say, I have met extremely nice people in this line of work.  I had thought they might not be very nice, iykwim.  But they are nice.  The main person who works with my son, as I have said, does work with older children with severe behaviors, and she is a kind person.  If you were local I would give you her name with total confidence that she would be kind to your family and your daughter, and very likely to have some ways to help her behavior.  

 

 

[Heathermomster]

:grouphug:

 

I have no suggestions.  I just have this general idea in my mind about the gut-brain connection.  There was recent news about a study connecting autism with gut bacteria, something about the manufacture of neurotransmitters in the gut.  (We've been dealing with constipation here and I recently noticed that all the sensory issues are far, far worse when things aren't right in the digestive department.  We have a meeting with a nutritionist who specializes in this sort of thing this afternoon.)

Would you please share what the nutritionist has to say about this?

[MerryAtHope]

How long have you been back?  Do you for some reason *doubt* the aspergers/HFA label and think she wasn't that way before?   This is the kind of stuff my ds does, and when he's that way I give him Calm Child.  It's an herbal tincture you can buy online or at the health food store.  Works in about 20 minutes here.  You might see if it would help her.  

 

OT, OE do you know if Calm Child helps teens/adults too? 

[wapiti]

Would you please share what the nutritionist has to say about this?

 

Sure, of course.  It's simply amazing to me that I didn't think of this until recently, that the intestinal angle isn't merely a vague connection but that there may be a direct, causal connection via the neurotransmitters produced (or allowed to be produced?) by the different types of microbes in the gut.  Notice that the different types of diets and so forth that are often recommended for kids with "issues" (I strongly believe this is not just related to kids diagnosed with spectrum issues but with other sensory/nervous system-related stuff as well), seem to have some common threads.  It's really quite fascinating and I'm heartened that there may be more research into the microbial angle.

[PeterPan]

OT, OE do you know if Calm Child helps teens/adults too? 

Yup.  :)

[Heathermomster]

Sure, of course. My guess is that we will go forward with urine and blood testing (the controversial, Great Plains kind) and will end up with a very individual plan based on my ds11's specific results (e.g., years ago, we did some sort of organic acid urine test for my dd, and there were particular supplements recommended based on the results, something to do with the Krebs cycle). I suspect there will be some yeast-killing involved and lots of particular probiotics and so forth. I started him on colostrum a few weeks ago and I expect she'll have us continue that.

 

It's simply amazing to me that I didn't think of this until recently, that the intestinal angle isn't merely a vague connection but that there may be a direct, causal connection via the neurotransmitters produced (or allowed to be produced?) by the different types of microbes in the gut. Notice that the different types of diets and so forth that are often recommended for kids with "issues" (I strongly believe this is not just related to kids diagnosed with spectrum issues but with other sensory/nervous system-related stuff as well), seem to have some common threads - there is some effort to "heal" a "leaky" gut and some effort to avoid problem-causing foods going forward, controversy over the role of yeast, etc. (I'm talking about things like GAPS, GFDF, SCD, Feingold, etc.). It's really quite fascinating and I'm heartened that there may be more research into the microbial angle. I think the actual report for the new study is this - oops, this is a different one! The news article mentioned something about fecal transplants, but I think to myself, come on, there has to be an easier way to get the right microbes.

Thank-you...

 

I have read about the fecal transplants, and I don't believe they are as bad as they seem. Does that make sense?

 

The gut/neurotransmitter connection is worthy of study. Maybe geodob knows something about this?

 

I was told by a friend with candida/leaky gut that as bad bacteria die, neurotoxins are released into the blood stream and can cause the body to react by producing antihistamines. Suddently, an individual with a candida issue is reacting to every irritant in their environment. Why wouldn't gut issues cause behavior issues too?

 

I am thinking about calling a naturopath for my DD or at least exploring the option.

[geodob]

An interesting thing about the digestive system, is that it is also termed as the 'second brain' ?

The entire system is actually lined with gray matter brain cells.

With about 100 million brain cells, which is about the size of a cat's brain.

 

These are connected to the brain by the Vagus Nerve.

But basically the gut has a mind of its own, so that it can get on with the complex digestive process.