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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by somebetter on August 4, 2002, at 10:00:34
I'm not nearly as knowledgeable about medication as many on this board and I was really hoping Schuyler would get some feedback on his unique problem. I don't know if I copied the link right, but below is the address of the original message of the thread. He titled it BPD, ADHD, and Downs Syndrome. On 8/3 he described his most pressing concerns. I'm going to try to get some information for him, but I also feel there is a wealth of it here. Please check out his post if you missed it.
Thanks!
Posted by judy1 on August 4, 2002, at 13:15:09
In reply to non-verbal child/BPD?/med side effects/detect how?, posted by somebetter on August 4, 2002, at 10:00:34
I am truly astounded that a psychiatrist could make a diagnosis of bipolar disorder in a child suffering from severe downs syndrome. I've heard and read many times that this and ADHD are two of the most over-diagnosed disorders in children. What kind of options does the child's parents have in regards to a second or third opinion? Are they just trying to calm him down? Depakote will do that (regardless of diagnosis), but so will the benzos (xanax et al) and they have a much kinder side-effect profile. Since he is 14 (do you know his weight?) he shouldn't have different response then adults to these drugs. The most important thing to monitor with depakote is the liver- so he should be having weekly blood tests until he reaches a stable dose then monthly. The most common side-effects are sedation and nausea (which does pass after a couple of weeks). Is he non-verbal because of the Downs or is it possible he is autistic? I'm sorry, I'm not sure when the original post was written- can you post his symptoms now, his dose(s) of medication(s), and anything else relevant? My heart goes out to all of you- judy
Posted by judy1 on August 4, 2002, at 14:06:20
In reply to Re: non-verbal child/BPD?/med side effects/detect how? » somebetter, posted by judy1 on August 4, 2002, at 13:15:09
Probably neurontin has the least side-effects and does not have to be monitored (some initial sedation). The other negative side-effect of depakote is depression- it's very common (I've had a great deal of difficulty with that as have many on this board). Take care, judy
Posted by Ritch on August 4, 2002, at 20:43:02
In reply to non-verbal child/BPD?/med side effects/detect how?, posted by somebetter on August 4, 2002, at 10:00:34
> I'm not nearly as knowledgeable about medication as many on this board and I was really hoping Schuyler would get some feedback on his unique problem. I don't know if I copied the link right, but below is the address of the original message of the thread. He titled it BPD, ADHD, and Downs Syndrome. On 8/3 he described his most pressing concerns. I'm going to try to get some information for him, but I also feel there is a wealth of it here. Please check out his post if you missed it.
> Thanks!
>
> http://www.dr-bob.org/babble/20020718/msgs/112752.html
>
Wow, after reading all of that, it seems to me that the pdoc wanted to experiment with Depakote to control his behavior and used a BP diagnosis to cover the medication usage. FWIW, I have seen my diagnosis change to fit the meds prescribed.Mitch
Posted by bubblegumchewer on August 5, 2002, at 8:30:46
In reply to Re: non-verbal child/BPD?/med side effects/detect how? » somebetter, posted by Ritch on August 4, 2002, at 20:43:02
I would urge caution. I took my four year old to a psychiatrist because I was concerned about his "dark talk," like telling his brother to go get hit by a car, etc. Just because my father was a card-carrying bipolar (he is now deceased) the pdoc and his social worker assistant were eager to assign my son the same diagnosis. They cited his fidgeting and jumping up and down, albeit happily and sociably, as he was glad to be getting such a "fun" interview, complete with drawings and nice conversation, as evidence of "ADHD" as well.
He was put on zyprexa and topamax. He gaine TEN pounds in one month on the zyprexa. (This is a lot considering his age.) He was then switched to geodon.
When he entered kindergarten he did not listen to his teacher and made animalistic noises. The teacher was ready to kick him out of the class. A psychologist was ready to sign papers to declare him disabled so he could attend a special school. One day I forgot to give him his topamax in the morning. It was his best day ever at school, his teacher said.
To make a long story short, I decided to ramp him off of both medications to see if he was benefitting from them at all. The geodon seemed to make no difference. The topamax was obviously disabling him intellectually and emotionally. As the topamax decreased and discontinued, he emerged as a speaking, feeling, and bright child. Suddenly he fell into place with the rest of the students. In fact, sorry to brag here but he is head and shoulders above the rest of the class, reading in kindergarten and exceptionally creative. His behavior has not been much of a problem at all.
He still has his own personality, that is for sure. His agressive speech seems to have been a phase. He is a delightful child and a very bright one at that. I shudder to think what might have happened had I left him on medication that he obviously didn't need. What if I had had him declared disabled and put him on more and more meds? Each new doctor I took him to didn't want to rock the boat and kept writing Rxs for the same meds just becuase the previous doctor had done so. I am very glad I thought to "experiment" before taking him off all meds. He does not need to see a psychiatrist anymore. The doctor discharged him as he seems to be functioning fine.
This story may not relate to yours, but I offer it in case it may help.
Posted by schuyler on August 5, 2002, at 10:38:28
In reply to non-verbal child/BPD?/med side effects/detect how?, posted by somebetter on August 4, 2002, at 10:00:34
Thank you "somebetter" for starting this new thread and getting some responses. And thank you Judy, Mitch and bubblegumchewer for your responses. Here is the original post for those who missed it:
"Please help. My girlfriend's son, 14, has pretty severe Downs Syndrome and just entered a residential school last year. Recently he started new behaviors that got her worried: hitting his head against the wall, scratching himself hard, and crying for no apparent reason.
"Several years ago he was diagnosed with ADHD, and now he has just been diagnosed with BPD, and the pdoc prescribed Depakote. This situation raises a *lot* of questions, I know, but I only want to ask 2:
"1. Assuming that he *is* BPD, what is the best med to give a boy who cannot talk to report side-effects to you, and whose side-effects might not be recognized immediately by his care-givers, who have several other children to care for?
"2. Can you reliably diagnose BPD in someone who cannot even talk (beyond single words for objects in his environment)?
"I know that my gf has to be alert (and she is) to the possibility that his new environment (and even abuse) might be triggering these behaviors, but please, I am not asking that question, OK?
"Thank you very much. ---Schuyler"
I will send my girlfriend links to the two threads for her to read and maybe respond to. I want to respond to Judy's Mitch's and BGC's posts separately.
---Schuyler
Posted by schuyler on August 5, 2002, at 10:51:21
In reply to P.S.- more benign drugs for bipolar disorder, posted by judy1 on August 4, 2002, at 14:06:20
Thank you Judy for your response. I have no idea how a shrink could diagnose BPD or ADHD in a child with severe Downs Syndrome. The symptoms, among others, were the head-pounding, the unusual hyperactivity and the crying for no reason, so they are not *just* trying to calm him down. I believe that the symptoms *have* gone away.
I can't remember if they have tried benzos before. I'll ask. My gf has the option to get second and third opinions and is working on that. I think his weight is about 110. I don't remember the dose. He has sometimes been sleepy in his morning classes, so my gf is trying to get them to lower the dose.
The boy is non-verbal mostly because of the Downs Syndrome, but he has many of the symptoms of autism, and he may in fact be autistic. I don't know. I'll try to find out more, if my gf thinks it will help.
---Schuyler
Posted by schuyler on August 5, 2002, at 10:59:40
In reply to Re: non-verbal child/BPD?/med side effects/detect how? » somebetter, posted by Ritch on August 4, 2002, at 20:43:02
> Wow, after reading all of that, it seems to me that the pdoc wanted to experiment with Depakote to control his behavior and used a BP diagnosis to cover the medication usage. FWIW, I have seen my diagnosis change to fit the meds prescribed.
>
> MitchThanks for your reply, Mitch. It is my suspicion the the shrink is in fact just trying the most likely drug to get the desired result and chose the BPD diagnosis to fit the med prescribed, but maybe that's not so bad? Anti-convulsants and anti-psychotics *do* treat many problems that they are not advertised to treat, like the Risperdal I take for depression. If this med helps the boy, with minimal side-effects, he will presumably suffer less. I hope so anyway.
---Schuyler
Posted by schuyler on August 5, 2002, at 11:12:01
In reply to Re: non-verbal child/BPD?/med side effects/detect how?, posted by bubblegumchewer on August 5, 2002, at 8:30:46
Thanks for the post, BGC. I'm sure that your case is all too common, and it is good to be reminded that many doctors will just prescribe the first med that comes to mind when a child acts out and then, through inertia, will continue to continue to prescribe what has been prescribed before. It is frightening to think what would have happened to your son if you had blindly accepted the recommendation of the "experts".
The boy I'm writing about is lucky to have a mother who, like you, is very vigilant about her son's health and very cautious about medicating him. She wanted to know more the diagnosis and about alternatives to depakote for the boy, which is why I posted here to begin with.
My girlfriend is still exploring second opinions and alternatives to depakote. She is also trying to get the dose reduced. For some reason, it is very hard to get the system to respond to her concerns. We read in the paper the other day that Risperdal has now been shown to treat the symptoms of autism, which this boy has (the symptoms, that is), so she is going to explore that option as well.
Thanks to everyone who responded to my posts, and especially somebetter for getting this new thread going. I appreciate your concern and support and advice very much!
---Schuyler
Posted by somebetter on August 5, 2002, at 15:41:44
In reply to Re: non-verbal child/BPD?/med side effects/detect how? » bubblegumchewer, posted by schuyler on August 5, 2002, at 11:12:01
Hi Schuyler:
My tiny little bit of information/opinion I got from my source today goes along with what your girlfriend is checking into. This person suggested that a low dose anti-psychotic would be safer and have fewer cognitive side effects than the depakote. Otherwise, concerning discernable side effects, I think you will have to find out what they are (somehow I get the feeling you already have) and make it clear to the staff that you would like for (insist that) they watch closely for these things. They're probably familiar with the medications that this physician prescribes and you sound as if you trust them to do their best, but it doesn't hurt to cover your bases. (somehow I have another feeling y'all have done this already, too) I'm glad you didn't mind me playing with your post. More glad it helped.
Posted by schuyler on August 6, 2002, at 4:56:13
In reply to Re: non-verbal child/BPD?/med side effects/detect how?, posted by somebetter on August 5, 2002, at 15:41:44
This is the end of the thread.
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