TerryJ2

Well-Known Member
I feel for you.

She is so lucky to have you.

I totally agree with-a medwash and new diet.

Star said it well--if it's not working, it's not working. Start over. If you keep doing the same thing, you'll get the same results.

I like the oil leak metaphor, too.

Poor thing. She's only 8.

The school nurse sounds great. I'm glad you were able to talk a bit. Every little bit helps.

{{hugs}}
 

BusynMember

Well-Known Member
After reading everything, a few thoughts.

First of all yes, she could have BiPolar (BP), but she could also be schizo-affective, which is treatable. Actually so is the "S" word, but she hasn't found the right medications yet for whatever she has. To make you feel better (I hope), I spent ten weeks in a very VERY big university hospital in Chicago when I was 23 and I saw miracles back then--when they hardly had any medications to work with. I saw psychotic people come in and I'd think, "Hopeless, poor things" and they'd be doing better than me in three days once on the right medications. That Lithium level is VERY low. I took Lithium. That would barely make a dent, I'd think. An average level is about 1.0
Onto Lamictal, it has really helped my son. It is the only mood stabilizer that has helped my son without the yukky side affects. If your psychiatrist won't switch medications or take chances, I would switch to another one FAST. I never heard that Lamictal is bad for kids or doesn't work for kids, and I'll bet some doctors would give you an argument on that. If she hasn't tried every medication combination, she hasn't tried "everything." You probably still have a lot of leeway.

I know nothing about diets other than years ago I tried a few hoping for some relief but for me they did not work, but that's worth a shot, as long as you keep looking to the medical profession as well. It could really improve her, at the very least she will be healthier.
I feel so badly for your sweet little one. Although I didn't hallucinate, my own childhood mental illness limited me from having the childhood other kids had, however I've stabililized more than many with mood disorders and have had so many good years and happy memories. Your daughter can too. It just takes time.
I think the medication wash could be good, but would have to be in the hospital and if it were me I wouldn't want the same doctor monitoring things since he hasn't helped so far. Don't give up because ALL mental illness is now treatable and new and better medications come out every year.
 

smallworld

Moderator
First, I believe, but am not certain, that Lithium Carbonate may be the generic version of Lithium, and I have read numerous anecdotal cases of kids not doing well on it. I have heard (from my CABF buddies) of kids needing to be on either Lithobid or Eskalith to do well. You need to do your homework on this one, Toto.

Second, to my way of thinking, treating someone subclinically, no matter their age, is just as bad as not treating them at all. K has an illness. If she had cancer or diabetes, you would treat it all the way, no questions asked. The studies I've read (and I'd be happy to read any studies you want to point me to) indicate that as monotherapy, Lithium blood levels need to be in the 0.8 to 1.2 range to be effective. If you're not hitting that level, you can't judge whether Lithium is working or not for K. I've read that subclinical levels of Lithium are helpful as adjunctive (as a second mood stabilizer) treatment for BiPolar (BP) or as adjunctive (in addition to an SSRI) treatment for refractory depression. But certainly not as a single mood stabilizer (APs don't count).

Third, if K is still hallucinating, she either needs a higher dose of Abilify, a different AP or a second AP. Some kids with severe psychosis need a combo of an atypical antipsychotic and a typical antipsychotic to achieve stability.

Fourth, diagnosis does matter. According to Essential Psychopharmacology: The Prescriber's Guide By Stephen Stahl, "Lithium is not a convincing augmentation agent to aytpical antipsychotics for the treatment of schizophrenia."

Fifth, if I couldn't stabilize my child, I'd either take her to Meridell in Texas or NIMH in Maryland. I think it's more important to get answers and achieve stability than keep a child at home.

Hugs. We're all here for you and K.
 

klmno

Active Member
Lithobid is a time-release type of lithium. I did wonder if she'd ever tried time-release MS's. I like SW's idea of NIMH. I looked into it for my son and we got half-way through the process but he couldn't go in because of being on probation. I think it's worth calling them. If they have a study going on that she would qualify for, they do a telephone interview, let you ask questions, and visit the place before agreeing to anything.
 

DammitJanet

Well-Known Member
At this point I think Smallworld is dead on. Letting K go on much longer the way she is, is setting her up for falling further and further into her mental illness (or illness) no matter what she has.

After having experienced hallucinations and delusions for the relatively short period of time that I did, I would do everything within my power to help her get out of this world. It is really a horrible thing to have your mind telling you things that arent real but you think are real. Its downright scary! I am still living with the after effects and question myself on things.
 

totoro

Mom? What's a difficult child?
I think for now we will go to psychiatrist apt. check her levels which likely are higher now due to the increase.
See where they are and then increase if they are still low. See how that goes...

If they are at a good level. Then I will have to think.

One question Smallworld- shouldn't we be seeing some benefits from the Lithium? From what I have read even if she hasn't reached her correct blood levels yet we should still see good or bad reactions.
If we are seeing some bad reactions on top of her instability already, why would we increase it?

Also why would we increase the AP? would it do anything at this point after being on it for 3 years? She has been up to 10mg... she has been on Risperdal and Seroquel.

Our psychiatrist is pro-active and willing to do anything for K. Her son has BiPolar (BP). She works at the University and is involved in Research. She just came back from a study in Russia.
So she is not complacent regarding Mental Illness.
She maybe just has different views, or is trying new research?
The study on lower Blood Levels was out of Europe. I would have to search for it again.
It was a small study.
I agree with everyone. I also have others in my life that I have to work with and gently guide sometimes. husband. LOL
I myself have never hallucinated, so I can't imagine.
Right now she is fine. I am giving her a few minutes of reading to her sister.
 
(totoro)

Your little one's symptoms sound bipolar-ish to me (based on gut feeling, past experience and reading). The ultra-rapid cycling as you know is so typical of Early Onset Bi-Polar (EOBP).

There's a lot of discussion about psychotic symptoms in the Papalos's book The Bipolar Child (3rd ed. is what I'm looking at).

I think you'll find the right medication combo for her. My difficult child was desperately unstable at your little girl's age. I found a lot of support and info at CABF.

My very best to you and your family.
 

KTMom91

Well-Known Member
Oh, Toto...my heart is breaking for you and K. I wish I had some answers, something, anything to help sweet K. Sending many, many hugs for you both. I am in awe of your strength and determination to helping your girls.
 

Wiped Out

Well-Known Member
Staff member
No new suggestions to add. I'm so sorry she continually is struggling. Gentle hugs and I will add K to my daily prayer list.
 

smallworld

Moderator
Toto, I'm not an expert on Lithium. My kids have never taken it. J is far too needle-phobic. Everything I know I've either read or learned from my friends at CABF. Speaking of which, you might want to post on the message boards over there. There are some very knowledgeable folks who frequent the boards.

I do know that many patients only have a partial response to Lithium where some symptoms are improved but others persist or continue to wax and wane without stabilization of mood. Still other patients may be non-responders to Lithium. It's hard to judge at this point with K when you haven't reached a therapeutic level (some say you need to get to 1.0 to truly judge).

You asked whether you should be seeing at least some improvement if the Lithium is working at all. Again, I don't know for sure, but I can answer somewhat from my experience with Lamictal. My daughter A is going through puberty, and when she outgrows her Lamictal dose, she suddenly become very mood erratic (for example, pulling a knife from the kitchen drawer and announcing she's going to kill herself). This is completely out of character and doesn't happen when her Lamictal dose is working properly. So we up her dose by just 25 mg and she is back in her "zone" again just like that. From my experience, mood stabilizers can work like that.

Is K still hallucinating? I thought she was, which is why I suggested the need for an increase, change or augmentation of APs. The goal of treatment is complete remission of symptoms.

These are just my thoughts. I'm not a doctor, just a mom who's read a lot and learned a lot from my own kids. My kids are not as sick as K, and I am in awe of all you do for K and N, day in, day out. Hang in there, Toto, and keep on keeping on.
 

Steely

Active Member
First, I believe, but am not certain, that Lithium Carbonate may be the generic version of Lithium, and I have read numerous anecdotal cases of kids not doing well on it. I have heard (from my CABF buddies) of kids needing to be on either Lithobid or Eskalith to do well. You need to do your homework on this one, Toto.

Second, to my way of thinking, treating someone subclinically, no matter their age, is just as bad as not treating them at all. K has an illness. If she had cancer or diabetes, you would treat it all the way, no questions asked. The studies I've read (and I'd be happy to read any studies you want to point me to) indicate that as monotherapy, Lithium blood levels need to be in the 0.8 to 1.2 range to be effective. If you're not hitting that level, you can't judge whether Lithium is working or not for K.

Hugs to you and K. Ditto what smallworld said. The blood level needs to be higher to know if it works - and generic just does not cut it. I advise to stay the course - switch from generic to Lithobid and up the dosage - and then take it from there.

I am so, so sorry. You are in my thoughts and prayers.
 

susiestar

Roll With It
I am so very sorry. This is just heartbreaking. You and husband are just amazing parents to be able to do what you already have done for the girls. They are blessed to have you.

i do not know if it is realistic to expect to see any effects from the lithium until it is at a therapeutic level. I know with Jessie's seizure medications that we did not have anything positive until she had been at the therapeutic level for more than a month. It took us almost a YEAR to titrate up to the therapeutic level because the side effects were painful if she increased too much. That year school work was incredibly hard for her and if we had kept her in school she would not have learned anything because she needed quiet to get any focus at all.

I wish I had a magic bean that would grow a beanstalk to take you and husband and the girls to a world with no mental illness or any other kind of problem.

Until we find those magic beans, know that I am sending lots and lots of big squishy hugs for all of you.
 

Steely

Active Member
In addition - no you might not see stabilization until the blood level is where it needs to be............so don't discount Lithium too early.

Also, many of our bi-polar kids need 2 mood stabilizers AND an AP. I know this hoovers, but it is true. Lithium and..........insert additional mood stab..........plus a higher dose of Abilify might do the trick.

I really would not do another medication wash. I think you have done many - and you know this will not be the cure all. The answer is in finding the right medication combo. Again, this hoovers, but it is our reality.:mad:

Hugs,
Steely
 

DammitJanet

Well-Known Member
It could be that she needs the combo of lithium and lamictal. Maybe. Im still really thinking about this seizure thingy I read about. If it could possibly be that too...maybe in conjunction, then lamictal plus they said an AP to combat the hallucinations is the treatment plan of choice. Ok..makes perfect sense to me!
 

pepperidge

New Member
For what its worth, since you have invested time in trialing abilify and lithium, I would really make sure I was up to clinical levels before beginning a medication wash. Do it carefully one at a time. Given the state she is in, it is hard to tell what is negative reactions to what is her baseline. You don't want to be wondering a year from now whether you should have tried a higher dose and have to redo the whole medication trial.

Do you have any real basis for thinking diet might help? I am just thinking that why go through all that--and you need to go for pretty long and pretty thoroughly for a kid that is already suffering? Maybe try food dyes etc. but to do the whole gluten free thing. Not saying it doesn't have impacts on some children, but again if you do it, treat it like a medication trial and don't do it when you are changing dosages of medicine.

It is horrible to want to do something so badly for your child, but not to find anything that works.

I would give neurofeedback a wide berth--with my mood disordered child, it made things worse I think. A therapist told us it was not recommended for very unstable children.

I guess if I were in your shoes I would be saying, is there someone who is a recognized expert in the field, and try to go there. Maybe smallworld can make some suggestions.

I really feel for you in terms of what it is doing to your family life and your own sanity. Maybe this is a stupid suggestion, but think about backing off on some of the various therapies etc if you think they aren't working if there is a heavy cost to you in time, money, effort, trying to get her to comply and put energies into trying to make life around you pleasant (I know, not the right word).

My gut feeling is that you will eventually find a medication combo that will work, and that your task rightnow if trying to survive with your family intact and get what little glimmers of fun or enjoyment you can have as a family. I think once you get her stabilized, school and all the rest of it will come along.

One can get to a sense of desperation and try to do everything that might help, and just get totally worn out. You're in it for the long haul. I would be trying to get the therapist to tell me how I can survive as the mother, get some respite, some help, a school setting where you get a break to recharge as a priority...


Toto, you are doing an awesome job in such a difficult circumstance. NOne of these suggestions are probably on target or feasible or whatever.

Hugs.P.
 

graceupongrace

New Member
Toto,

This is way out of my area of expertise or experience. I just want to send you big (((hugs))) for all you're going through. It breaks my heart. K is so fortunate to have you.
 

flutterby

Fly away!
I was diagnosis'd BPII for 5 minutes and they immediately put me on 2 mood stabilizers - lithium and lamictal - and an AP. And I wasn't manic (never have been) nor psychotic.

I just wanted to throw that out there since others have mentioned two mood stabilizers at a time are often needed.

I'm so sorry K is struggling so much. I'm sorry for your hurting mommy heart and husband's hurting daddy heart.

(((hugs)))
 
M

ML

Guest
I am so sorry Totoro. I don't know what else to say except that you and K are in my prayers. Also, I wish with all my heart that I had done that diet when manster was young enough to control. I still try to limit carbs and junk and increase protein but the strict adherance is the way to go. My stepsister's family went through healing and transformations nothing short of miraculous. I encourage you to visit this. Thinking of you xo ML
 

totoro

Mom? What's a difficult child?
OK so I have had a night to think and stress and go over the facts and what I know in my heart she needs.

You all know in your hearts how these things feel as Mom's.

"Why can't they just be off of medications?"
"Why does she have to suffer so much?'

I question almost every day the medications "I" have chosen to put my daughter on.
I know this is wrong, but we all do this at times when we look at how they are not working and then we have to change them... over and over and over.

So I was having a mental breakdown inside. I would love for my child to be off of medications.

I have asked about Lamictal, I am going to ask about it as an add on maybe when she reaches a therapeutic level with the Lithium.
I will be patient and give the Lithium more time. I know this is right I know all about the levels. I have all of the books, I have read them and re-read them.
I just need to hear it from you who have been in the trenches.

I know about the medications, I am on them and have been.
I know about being a kid who is miserable. So I can be honest with myself and say it is not fair to ask her to feel like I did most of my life.
I didn't have hallucinations, but I needed help like her.

I know the answers. Now I have more questions for therapist and psychiatrist because of you.

I will go to the therapist this Thursday, she is also our advocate, and pass all of our concerns and questions.
I will see if we need to stop certain therapies, I agree, K is struggling.

I have video of K struggling. The only one that I feel is very important is her Oro-motor and her horse therapy. She loves these and I can be very flexible with these.
The Oro-motor I do at home also. So when she does not want to do Oro-motor we don't.

I will then take my notes and vidoe if needed, go to psychiatrist in the beginning of SEPT and be point blank, ask about the generic, ask about the levels. Ask about our goals.
Make it clear how bad she is doing.

I think and so does husband, that one of the problems is, when husband and I go to the Apt's with psychiatrist- we always seem happy and so together that she has a hard time understanding that we are really having a hard time and how really hard it is and how bad K is doing.

K also holds it together in her office. Although she does talk about the fairies.

So I will hold off on any other changes for K right now. She has enough. She just wants some friends...

We still have her IEP coming up and she has some evaluations at School.

This is all enough.


Thank you all so much.

Let me know if I have forgotten anything.
You ladies are good at clearing my head.
 
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