I need a break...

[totoro]

This is more of a rant of the past week... so psychiatrist3 put K back on Strattera last Friday... after she was having a rough week... he wanted to see if it was indeed new symptoms, or untreated symptoms... so we put her back on to see how she would act... I was not to happy.

So since Saturday we have had a little monster! Monday she tried to strangle husband... fuse is about a millimeter long! Had 3 rages yesterday... I have a huge bite mark on my arm and she slapped me full across the face!!! She started the wanting to die talk again last night...
I called psychiatrist3 last night... actually had 2 talks with him. We stopped the Strattera for good!!! DUH.

Increased the Abilify... for now just to try and help with the rages... we plan on Difficult Child'ing the Abilify, because of the Tardive Dyskinesia.

So Monday he wants to start on Nuerontin... he has had good luck with this for BiPolar (BP) kids in adjunct with another MS, especially for the anxiety and some of the elevation... or so he says.

He also brought up Topomax and Tenex.... I haven't had much time to think about any of this.... I have a whopping 30 minutes in between running either of the kids to and from school etc. I have less free time now that school has started!!!

But so far school is pretty good...

K is so well mannered and wants to please so much that some of these other kids... will always make her look good!!! (I swear some of these kids act like they just crawled out of a cave!) She can melt into the back ground. Which may not always be good.

Anyway mother in law shows up today I am off and running to Horse therapy.... help me!!! I am running ragged. I miss you guys. I will try and catch up soon....

My baby is not doing well and it is killing me... she was doing sooo well for a couple of weeks and I let my guard down and got so excited...

 

[Andrea Danielle]

Hi Totoro, sorry to hear things aren't going well with K.
I know how hard this switching of medications is on everyone.
I hope you find the right one soon. We haven't yet either, Risperdal isn't working for us, on to the next... not sure what that will be yet.

Sending you a big hug!!!!

Andrea

 

[TerryJ2]

Oh, poor thing!
Boy, she's on a lot of stuff.
by the way, the only people I know who are on Neurontin are elderly and use it for leg pain, etc. I'm sure others will jump in here and correct me, but I just hate to see K become a guinea pig.
Good luck to all of you.

 

[Janna]

T,

I know what you mean about the medications. I don't really have any advice for ya, but understand what you're going through, as we are doing the same with Dylan. 24 medication trials now, years later, we still don't have it right. There are many days I feel like telling the psychiatrists he's going to live medication free.

I heard about Neurontin. I don't remember if our psychiatrist mentioned that. Hmm. Anyway ~ Tenex = antihypertensive. Topomax has a website. I'd do a search on the Neuorntin, check out all the drugs and read the info on them. That's what I've done with all the medications.

Hope you find something that works soon

 

[Big Bad Kitty]

(((((Totoro))))))

OK, I take Topomax, but not a whole lot, 100mg. Side effects: Slight decreased appetite, hands tingled for about the first month. Otherwise, no issues. There were 2 times that I ran out of it, and I was not able to sleep without it.

I am very sorry that K is having a rough time. Wanna switch for awhile? Send her with husband, and he can take Tink back.

 

[Steely]

so sorry your last week has been so horrible! Gotta hate that, especially since she was doing so well.

I did a brief websearch on Neurotonin and here is what I found for bi-polar:

RESULTS: The 40 open-label studies and two of the controlled trials suggested that GBP may have a role as adjunctive agent in the treatment of patients with bipolar disorders particularly when complicated by co-morbid anxiety disorder or substance abuse. However, in the other two double-blind studies GBP has not been found to be efficacious in the treatment of refractory mania or refractory bipolar depression. CONCLUSIONS: Although failing to show clear antimanic efficacy in randomized trials, gabapentin still remains a clinically useful agent when it comes to combination treatment in refractory and co-morbid patients.

I don't know......it looks like Neurotonin (gabapentin) sounds a bit weak in it's proven efficacy.

Ya know...I don't think it is out of line.....to request that the psychiatrist try your daughter on a certain medication that you feel strongly about and have researched. If you feel that way about Topomax......then I would tell him that is what you want to do next before you try a medication that is not a mainstream mood stabilizer.

Have you tried Lithium, Tegretol, or Depakote? More of the top picks for bi-polar?

 

[AllStressedOut]

Sorry to hear about K and the straterra! I feel your pain! None of my kiddos do well on that at all! ((hugs))

 

[flutterbee]

I'm so sorry K is struggling so much. You must be exhausted.

(((hugs)))

 

[Babbs]

All I can say is BIG HUG... If I had a spare bottle of Calgon to send to you it would certainly be over there in a heartbeat.

It sounds as though you need to carve out a little time for yourself to relax before you can begin to even think about the options the psychiatrist brought up. Any chance husband or a family friend could give you 30 minutes to take a relaxing bath and deep breaths before heading into the foray again? Remember that you need to take care of yourself so you can take care of K.

 

[Wiped Out]

I'm sorry K is struggling. I can understand your need of a break! My difficult child is on Topomax. It's a double edge sword. It has worked more than any other mood stabilizer (and we've tried a lot)but at the same time he sometimes has word retrieval problems due to the Topomax.

 

[totoro]

Thanks everyone!!!
My refuge is my few minutes to sneak away here!!! I have read up on the medications he is suggesting... But like most of you who have to go the Mood Stabilizer route, I have asked, "Why not, Lithium, Depakote or Tegretol?" I always get the, "Well the blood draws..." Or the "Well I have had good luck with this..."

I really don't understand why they wouldn't start with one of those and fo from there??? I mean if they are questioning the diagnosis, why would they put her on Lamictal ands Trileptal???

The good news is she is doing so poorly, our therapist has wanted to see her in this state since day one and never could catch it, well today she got a pretty good glimpse!!!

Last night I had to give her Lorazapam and her medications, it took 3 hours after that to get her down!!! Of course she woke up ready to go...

I don't know about a getaway... I can dream about it!!! My 20 minutes in between dropping off K and picking up N I go to coffee... and space out. I get a full 20 minutes to do that!!! It actually feels good.
I have another call with psychiatrist3 tomorrow sometime. I really do think he wants to help, I think he is trying to pinpoint all of the symptoms and where they stem from and what is new and what is emerging and what is medication related, blah blah blah...
As a Mom watching all of this it is SO hard to remain patient at times... you just want to scream, "She is only 6, quit using her for your experiments!"

How the heck am I going to feel when she is in her teens???

Thank goodness for all of you... I really mean that especially on a week like this. When I can offer little advice, have little time and feel very lost.

 

[Liahona]

I'm sorry you're baby is going through this. Its so hard for a parent to watch their kids hurt. Especially when you're so stressed and exhausted. 20 mins a day isn't much to yourself.

 

[totoro]

Well last night was no better... she has talked of wanting to die again for the past 2 nights. She is starting the "I don't want to go to school, I am stupid, I can't do this" along with wanting to die...
Her psychiatrist3 wants to get her in with the school counselor to stop the School refusal before it starts... we are increasing her Lamictal. She is at 7 weeks on it now. I am hoping we really start to see it's affects now.
He wants to see how she does over the weekend and for a couple of days into next week. I am meeting with the school counselor Monday to have him meet K.

On a good note I think early intervention program is interested in N!!! They are going to evaluation her at her pre-school. They want to know why K slipped throught the cracks... I explained that she is not Autistic and has no developmental delays, most of the "experts" here only refer if those things apply! The kids with social and mood issues don't register to them yet. They were very interested and said once again we are going to be pioneers here!!! Oh Joy!!!
If they are not disruptive they don't matter...
K was a wreck this morning... I hate Mood Disorders sometimes...

 

[Steely]

Oh lil K.........I SO feel for her.......she must be miserable! You guys are in my prayers and thoughts.

 

[Sara PA]

The info Weeping Willow posted is from an aritcle published in 2003, a year after the Dr. David Franklin blew the whistle and a year before Pfizer settled the government's lawsuit for fraud in the promotion of Neurontin. They paid the highest fine ever levied against a company (until very recently). Among the reasons was the promotion of Neurontin as a mood stabilizer for the treatment of bipolar disorder. The New York Times did a number of stories about it.

I, too, have heard doctors say that they have had success with Neurontin but I have heard only two parents say it. One case involved adding Neurontin for anxiety; the benefits if any were short-lived.

The generic name for Neurontin:

In pediatric patients 3 to 12 years of age neuropsychiatric problems, including emotional lability (anxiety behavior problems crying false sense of well-being mental depression reacting too quickly, too emotionally, or overreacting rapidly changing moods) hostility (aggressive behavior suspiciousness or distrust ) hyperkinesia (hyperactivity or increase in body movements restlessness) and thought disorders (concentration problems and change in school performance)

 

[smallworld]

T, I'm sorry for everything you and K are going through.

I co-moderate a listserv of BiPolar (BP) parents, and two teens from one family take Neurontin as their primary MS. They have done well on it, but they are the exception, not the rule.

I'm wondering why psychiatrist3 is considering adding medications at this point when you haven't seen the full benefit of Lamictal. Our psychiatrists have always followed the philospophy of increasing an MS to full therapeutic level and then watching for 6 to 8 weeks to judge full efficacy. It is then that we decide whether to discontinue that medication (we did this with Depakote for both kids because it was increasing irritability at high levels) or augment to treat residual symptoms (we added Lexapro for depression after Lamictal was at full efficacy). If you make quick successive medication changes, you will never know systematically what is helping or hurting. K may also end up on medications she doesn't actually need. It takes longer this way, but really it's far better for the child in the long run.

Sending positive thoughts and hugs your way.

 

[susiestar]

I think it might be a good idea to print off the standards about treating children with Early Onset Bi-Polar (EOBP)/bipolar and give a copy to this doctor. I believe they are on the web, someone had posted them here several months ago.


I'm so sorry it is such a struggle for y'all.

Hugs,

Susie

 

[Steely]

To follow up on Sara's post -

Did you know that doctors are given money to promote certain drugs by the pharma. companies? Therefore it is imperative that we, as parents, do not always take the psychiatrists lead - but rather be the leader ourselves. If it is between 2 medications, the psychiatrists are going to promote the medications that they get more kick backs for. Case closed. As a parent, our only recourse is, research, information, and not taking every medication the psychiatrists suggest as the final answer. If one is suggested, tell them you will think about it, research it, and get back to them on whether you feel like using that medication as the next step in your child's therapy.

At the risk of being bossy, and I know I have said this before Totoro - but I would tell psychiatrist No. I would tell him that you want to let Lamictal get to a higher dose before adding medications - and if another medication is needed at that time then you would like to try the mainstream mood medications......Lithium, Depakote, Tegretol, etc.

Also something to think about with K - when my son took Abilify he had a paradoxical reaction and it made him manic. Unlike Seroquel or Risperdal, which calmed him, Abilify made him a wild, out of control, insomniac.

 

[ML]

I just wanted to say that I hope and pray you get some relief soon. Hugs, MicheleL

 

[TerryJ2]

As a Mom watching all of this it is SO hard to remain patient at times... you just want to scream, "She is only 6, quit using her for your experiments!"

I hear you!

I am so sorry for both of you. You're doing a good job, really, being there for her, doing the appts., trying to figure out what's going on.