Institute of Living "results"

[Sgwindsor]

Hello,

I had just recently found this site in April after a few years and got some advice from many of you to look into children's hospitals here in Connecticut. I called Yale and got no luck, but the Institute of Living (IOL) took us in. Since I posted, things became significantly worse while difficult child was on Luvox. He was suicidal and at one point tried to jump out of my car while I was driving. Luckily, I knew he couldn't open the doors due to the fact that the doors won't open when the car is moving. Therefore, I didn't have to panic and react in a way which would give him attention for this and he would do it more. Anyway, he is off Luvox, it is out of his system and he is now just angry again.

We went to IOL last Thursday and basically got the same message we have been getting for years. He is ADHD with probable bipolar. He can't be officially diagnosed for another year so the recommendation was to wait a year, see a neuropsychologist for an evaluation. He did suggest trying Trileptal sp? and if it works to reduce the dose of risperdal to just an evening to help with sleep. He also recommended outside counseling. My husband and I went there with the hope that there would be a diagnosis with a prescription to match the diagnosis. We are worried about trying yet another medication (we were anti-medication until last summer) without a firm diagnosis.

So, we took him somewhere, feel kind of like we got nowhere and difficult child can still barely make it through a school day, even a partial one, without hating himself, school, or having an "incident" as he calls them.

Thank you for your input and support. It is a relief to know this site is here.

Suzanne

 

[branbran]

Hi - I love this site too. I also have a difficult child who was originally diagnosis with ADHD which turned into BiPolar (BP) and now they have added Conduct Disorder to the mix. What fun!!! She has also been on the Trileptal/Risperadol combo with so-so results. (amoung many others) We are now in the process of changing her medications, yet again!!!! She had some bad side effects from the Risp. and gained 40 pounds. She is in an Residential Treatment Center (RTC) and struggling daily. She has been hospitilized 8 times. I'm not sure how far into CT you are, but I have found 4 Winds hospital to be the best one. (in my area anyway) They have a few locations, Katonah NY and I believe further upstate NY. You don't get much one on one time with the doctors, just like any other hospital., but their pretty good with the kids. They do lots of activities and it's a beautiful place.

My daughter is 16 now and was first evaluated at 7 yo, they said ADHD and I always knew it was more. But they didn't want to diagnosis her with anything else until she was older. Once I finally got the BiPolar (BP) diagnosis - I thought yay - now we can get our miracle pill and she'll be just fine. Well - needless to say that was back when I was nieve to all of this. There was no miracle pill and to date she has been on every medication there is to, no avail!!!!!

I know what you are going through, how frustrating and disheartening this is. Hang in there. Sending out positive thoughts and prayers to you. :smile:

 

[branbran]

I just want to add that my difficult child did much better in The Boce Program. I did not want to take her out of the mainstream, however it got to the point that the security guards were just driving her home from school by noon almost daily. Once I did agree to take her out of her regular middle school and accepted that she just could not handle the daily pressures, it did get easier in that the teachers in the "special school" were better equipped to deal with her and understood my stand point. I no longer felt judged, instead I felt empathy and understanding.

Good luck

 

[Alisonlg]

Hello to another CT mom struggling with similar issues. We're still medicating with no diagnosis. I agree it's bothersome, but I'm hoping to get a neuropsychologist done this year.

Wanted to send out some hugs.

 

[smallworld]

Suzanne, hello from a mom who grew up in the Hartford area and knows the IOL by reputation well.

My son (difficult child 1) had a similar reaction to the antidepressants Zoloft, Prozac and Effexor that your difficult child had to Luvox (down to an attempt to jump out of husband's moving car). Even though his psychiatrist says we need to wait until difficult child 1 has gone through puberty to officially diagnosis bipolar disorder, the psychiatrist is treating him with mood stabilizers as if he has BiPolar (BP). And I have to say we are making slow but steady progress -- no more raging, no more aggression, very little anger. We honestly don't know if difficult child 1 has BiPolar (BP) -- we've been told it can take five years of observing the child to make a definitive diagnosis -- but in the meantime he is responding positively to BiPolar (BP) treatment.

The fact of the matter is that we had very few medication choices left. We had blown through just about every ADHD medication, every antidepressant, an atypical antipsychotic (Risperdal), and his moods just kept getting worse and worse. Imagine how grateful we were when the mood stabilizers Depakote and then Lamictal made a positive difference.

Like Depakote and Lamictal, Trileptal is a mood stabilizer prescribed for bipolar disorder. It has a relatively low side effect profile (better than Risperdal in fact), and it might make a difference for your difficult child. I personally think you should read up on it and consider it as your next step (do you want your difficult child to have to suffer for an entire year while awaiting an official diagnosis?).

I agree with the need for a neuropsychologist evaluation -- difficult child 1 has had one as well -- but what will change in a year that will allow the IOL to make an official diagnosis? I have to say I was confused by that part of your post.

 

[Sgwindsor]

Good morning,

Thanks to all of you! Yes, I did read up on Trileptal and we are going to try it, starting tomorrow. Because difficult child has had so many reactions to medications, I thought it better to wait until he is out of school for a few days and this is a long weekend.

I don't know what will change in a year, but apparently bipolar can be diagnosed at 8 and he is just 7. I suppose we should make the appointment soon so that he can be seen when he is 8. IOL is not the only place that has mentioned this. He was observed by a neuropsychiatrist spring of last year. I had a second opinion last summer by another neuropsychiatrist last summer who felt his psychiatrist was medicating better than he(psychiatrist had tried brand new Daytrana and the psychiatrist hadn't tried it yet) and checking in more than he would be. The school requested another evaluation this winter by a behavioral psychologist so he was observed a few times and we filled out paperwork again. So, to wait a year for another evaluation is probably a good plan.

I will let you know how it goes!
Suzanne

 

[Sgwindsor]

Hi to you too! What part of CT are you from? Maybe we could share information on good doctors and schools we have found. I am in the southeastern section.

Have a great day!
Suzanne

 

[smallworld]

Suzanne, in all my reading on BiPolar (BP) -- and I've read a ton -- I have never seen that BiPolar (BP) can be diagnosed at age 8 and not at age 7. I do know that BiPolar (BP) is not an easy diagnosis to make -- there are other conditions that mimic its symptoms -- and that many psychiatrists are not quick to jump on the BiPolar (BP) bandwagon. Having said that, sometimes you have to medicate with mood stabilizers because that's what will alleviate the symptoms.

All mood stabilzers take 6 to 8 weeks AT A THERAPEUTIC LEVEL to assess efficacy. Make sure you give Trileptal a fair chance before giving up. It may take most of the summer to see if it will work for your difficult child. You might want to read the chapter in The Bipolar Child by Demitri and Janice Papolos about medications -- it's very thorough and helpful.

by the way, sometimes ADHD medications can make mood worse. What medications/doses is your difficult child currently taking?

 

[jal]

Hi Suzanne,

Another CT mom here. My son has been diagnosis'x at almost 5 with BiPolar (BP). Every BiPolar (BP) book I read describes him almost to a t. We are beginning his neuropsychologist evaluation next month. His psychiatrist was careful to take time with the diagnosis. It was his theory until difficult child presented manic in his office. As smallworld recommended The Bipolar Child is a very good book. I've just started Bipolar Not ADHD by George Issac. It also has a lot of great information.

 

[Alisonlg]

Hmmm...I find it interesting there are a lot of CT moms here (with BiPolar (BP) kids or potential BiPolar (BP) kids)!

Maybe it's something in the water?!? LMAO!


Perhaps we should form our own Monthly Meet-Up Support Group!

 

[BTCM]

Hi, I was just reading your post. And I too am from CT. I haven't been through the whole evaluation. process yet, but I did speak to a Neuropsyc. from CCMC a couple of weeks ago. First I e-mailed him, then he requested me to call him. I did and in a couple of days he called me back personally and explained everything to me in detail. He answered all of my questions and didn't rush me off the phone in any way. He sounded wonderful. And if I do decide to go this route, I will definetly want to see him. I just thought I'd throw that out there to you. I hope it helps. Good luck.

 

[hearts and roses]

Hi! We are also from CT!! My difficult child is older now, but we began with CCMC neuropsychologist along with IOL and difficult child did very well working with them until a couple of years ago when she became more of a teen and less of a peds.

We always had a positive experience with DR's at both institutions. Dr. Brunquell at CCMC neuropsychologist is awesome - he's the one who originally diagnosed difficult child with tourettes, ADHD, and Obsessive Compulsive Disorder (OCD). He then referred us to IOL for medication management and counseling, which was wonderful as well. After we left IOL and switched doctors about 2 years ago when difficult child was 15, she was then diagnosed with BiPolar (BP), albeit "mild" - DR'S words. She is stable for the most part, however, she is trying to learn how to control her moods with counseling and hasn't quite gotten it just yet! She refuses to try any other medications and only takes a low dose of celexa for depression since that seems to be the most consistent symptom she's experienced since she was 8.

CT has many good DR's in it and if you're up on your mental health knowledge you should be able to find DR's who will work with you and your child. We've had a few bum therapists and one bad psychiatrist in West Hartford, but otherwise I think we've been pretty fortunate overall.

 

[Sgwindsor]

Hi,

We tried three ADHD medications and two made him extremely angry and violent and one made him sleepy. The only medication he is on is Risperidone.

Suzanne

 

[RB]

ANother CT Mom here. Trileptal was not a good experience for us, risperdone helps us much more with fewer side effects. We've no weight gain issues with any medications, my sons appetite has always been rather good but so are his food choices and preferences. On the flip side the stims we've tried for the ADHD haven't reduced his appetite.

Good luck. If I can answer any questions personally feel free to PM me.

 

[totoro]

This is from the BIPOLAR CHILD website it helps people understand why it is hard to diagnosis BiPolar (BP) in a young child... and as to why if your child is diagnosis'd BiPolar (BP) at a young age it may not be "technically" accurate according to DSM guidelines... even if the child is...
Q.
So how would a doctor diagnose early-onset bipolar disorder?

A.
The family history is an important clue in the diagnostic process. If the family history reveals mood disorders or alcoholism coming down one or both sides of the family tree, red flags should appear in the mind of the diagnostician. The illness has a strong genetic component, although it can skip a generation.

Many parents are told that the diagnosis cannot be made until the child grows into the upper edges of adolescence--between 16 and 19 years old. The Diagnostic and Statistical Manual of Psychiatry--the DSM-IV--uses the same criteria to diagnose bipolar disorder in children as it does to diagnose the condition in adults, and requires that the manic and depressive episodes last a certain number of days or weeks. But as we already mentioned, the majority of bipolar children experience a much more chronic, irritable course, with many shifts of mood in a day, and often they will not meet the duration criteria of the DSM-IV. They will, instead, be diagnosed possibly as BiPolar (BP)-Not Otherwise Specified(BiPolar (BP)-not otherwise specified). However, this also does not really describe the symptoms seen in childhood.

The DSM needs to be updated to reflect what the illness looks like in childhood.