Just a little nervous about the study...

[klmno]

I rec'd a call from the psychologist from NIH today to set up a time for a 1 1/2 - 2 hr phone interview so they can decide if difficult child qualifies for one of their studies. This is still a long shot- especially since I can't let things go on as they are for another month or so while they go thru their processes.

Anyway, I have no problem with anything I'm hearing from them so far- and I LOVE the idea of difficult child having a medication wash while being in a safe place and monitored by professionals. Also I think it's great that they are doing studies on the BiPolar (BP) diagnosis in kids- (I really wish they would do one on allergy/asthma medications and mood disorders to see if there is any connection in some of our difficult child's.)

I'm still nervous about it...

Has anyone here ever put their child in for an inpatient study at NIH or anywhere else? If so, how do you feel about it now? How does your difficult child feel about it now?

 

[Jena]

I have no experience with it. I just wanted to offer some support and to say that I can see why youd' be nervous. I would be also. yet from what you wrote in this one and i think in another post it sounds really promising. Especially the medication wash while he's there. I really hope he qualifies and i hope it's just what you need right now to get some clear cut direction and answers and help.

 

[Steely]

I tried, but difficult child did not qualify. (Seriously? difficult child not qualify for BiPolar (BP) as he is literally bouncing off the walls in mania, but that is another story)

My only hesitation would be if he was part of blind study, where they do a medication wash, but then only half the patients would be on a real medication, and the other half on a placebo. That could create obvious havoc in your situation if he was on a placebo or a medication that made things worse.

Do you know the details of exactly what will be part of the study? And what medication they are trialing?

 

[klmno]

Apparently, they have 3 studies going on right now and then another will be starting up soon- I don't know what it will entail. I'm not quite sure yet if I even have all these facts straight but here's what I think is current:

1) One study where the diagnosis of bipolar is being studied, along with the use of traditional medications. The kid gets a medication wash, then if medications are determined to be necessary, they get the least dosages required for stabotity of traditional medications

2) Irratibility/mood disorders are being studied- I'm not sure what they do in this one- other than they start with the medication-wash (this might be the one where they are trialing a medication- but I'm not sure)

They said difficult child would probably go into either of those two and they determine which one.

Then the third- the kid gets a medication wash then gets started on an SSRI, a stimulant, or a placebo. I chuckled over that one.

 

[Steely]

The only one I might go with is option one. Can you specify that you want number one?

Also, where do the kids stay where this is going on? Who monitors it?

I would ask a ton of questions before I took a step forward. It just worries me that he may become more volatile if this is not all done correctly. I guess it is different with adults and these studies, but kids - I don't know - there are too many variables.

 

[klmno]

Thank you for your concern, Steely!! I'm thinking #1 would probably be good, too- I might possibly consider #2 if I knew more about it. They have options for different studies- I would be looking for inpatient with difficult child. They have a school program that would count in Virginia- they are located in Maryland, but not too far for me to get to so I could visit on weekends. It would last 6-8 weeks, I think.

I do have a list of questions that I'm developing. They are very nice about providing info and such. Apparently, they have psychs and psychiatrists on board who keep a watchful eye. They mentioned that one study has "three beds" for it. I'll need to clarify, but it sounds like a very small group of kids.

Someone from the board threw this out as a place/option to check into and I would prefer it over out of home placement for difficult child. Especially if there's hope that he or other kids in the future could benefit from it.

 

[Steely]

Yes, I agree. Sounds intriguing.
I would research it all, as I know you will.
Perhaps this might be a possible avenue and respite for a bit.
I will be thinking good thoughts.

 

[smallworld]

Steely, the kids stay in NIH'S hospital in Bethesda, MD (my girls are treated outpatient there for growth hormone therapy). They are attended by top NIMH researchers well-known for their research in pediatric mood disorders.

 

[Wiped Out]

It does sound very interesting. I'm glad you are developing your list of questions and I hope it all works out.

 

[bran155]

I agree, it sounds promising. I also agree with Steely, do as much research as possible. It's good that he is in driving distance so that you can physically see him weekly. You know your son best, so you will be able to see if something wasn't right. Good luck. Keeping my fingers crossed!!

 

[slsh]

klmno - I just went to a parent mtg on Sat for kids who get funding like thank you's. One of the parents did a presentation on a NIMH study her son and family is involved it. Bottom line, in the context of this being a study for childhood onset schizophrenia (COS), she had nothing but favorable things to say about the process *but* she made it very clear that in her opinion if a child is stable or even relatively stable, an extensive study involving medication wash etc would not be the way to go.

Her kiddo is 12, had normal development up until about age 3 or 4 I think, and then started severely regressing. Sounds like a very psychotic kiddo 24/7, regardless of treatment. He's lost not only cognitive ability but also motor skills. Her family had been through the alphabet soup of diagnoses for several years, with a gazillon medications, etc. He ended up in a catatonic state for more than a day at a local hospital and that's when she really started getting assertive in terms of looking for answers.

The study they're in is not only for medications but also looking at the genetics and physiologic (brain structure) changes in COS. The entire family had to go to Baltimore (or was it Bethesda - I don't know, Maryland somewhere, LOL) for genetic screening and psychiatric/cognitive testing. Then the child and mom stayed for a 6-week medication wash (again, this little guy was on a kitchen sink of medications). In their case, there was a very real risk of him ending up in a catatonic state again. It was apparently very rough but he was a champ. Then they started him on a new medication (clo - something, an antipsychotic, name escapes me right now) and they stayed for another 8 weeks for stabilization. She said he has not yet returned to where he was functionally before they went, but they are seeing relatively rapid improvements and she is actually quite hopeful. Interestingly, just from a clinical standpoint, they have already documented that chronic psychosis causes not only gray matter (cognitive) changes but also white matter (motor skills) changes in the brain.

This study is life-long. There was no possibility of a placebo being given, obviously. She had nothing but high praise for staff and feels very fortunate in that she has access now to *the* top researchers and docs for COS. She did say researchers are researchers and they tend to forget they're treating patients not lab rats but it did not sound like it was a huge problem, especially since she stayed with him.

She did say in this particular study there were 3 beds for COS and then another 3 beds for BiPolar (BP) kiddos with severe psychosis. Sounds like the screening is pretty extensive so that they're sure they know what patients they're getting.

Again - she really had nothing negative to say about the experience. It's a huge committment but she has a very ill kiddo and wasn't getting a whole lot of consistent information locally.

 

[smallworld]

Sue, this sounds like one of the NIMH research studies in Bethesda, MD. Because I live 10 min from the NIH campus (where NIMH is housed), I've had the wonderfu lopportunity to hear many of the NIMH researchers speak in our community. They are a dedicated, knowledgeable and compassionate bunch.

We never went the NIMH route because my girls were making good progress with their outside psychiatrists. While my son has endured a bumpier road, he is needle-phobic and not cooperative with any medical procedures whatsoever. I didn't want to waste anyone's time. But if we entered a phase where things started to spin out of control, I wouldn't hesitate to contact the NIMH folks.

Good luck, klmno.

by the way, Sue, I believe the antipsychotic you were trying to think of is Clozaril.