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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by Cairo on October 5, 2003, at 18:43:02
I would really appreciate some advice regarding my 15 y/o daughter. She has been diagnosed with mixed ADD/ADHD, LD, language disorder, and very recently with Fibromyalgia. A neuropsych consult showed "primary" attention deficit with executive function difficulties. She was labelled selectively mute as a young child, though this may have been compounded by a language delay/auditory processing deficits. She always had good eye contact and wanted to be with kids. Psychostimulants have always helped her attention, though different ones carry different baggage - Adderall causes too flat an affect, Dexedrine caused SEVERE rebound, didn't get enough of a peak effect with Ritalin LA, she's a fast metabolizer of plain Ritalin with some rebound. She is currently on Concerta with kicker doses of Ritalin. Cylert was never tried. All of the above cause varying degrees of social withdrawal. She's always had mood issues even without the psychostims, usually showing as afternoon irritability when she was younger. A trial of Prozac about 4-5 years ago for mild moodiness didn't show much of an improvement. Imipramine was also tried, but it didn't do much for attention and caused tachycardia.
Two years ago she started developing FMS symptoms. A bout with mono 1 year ago made everything worse: increasing anxiety, social avoidance, and brain fog. We tried a 6 week trial of Strattera recently because of the psychostim side effects. At low doses there was a tiny improvement in attention and mood, but as we increased the Strattera dose because of the need to improve attention, we noticed a marked increase in social avoidance and depressive symptoms - extreme lethargy, refusal to go to school, increased fatigue, and a noticeable increase in lack of motivation. The higher dose didn't improve attention much. So now she's back on the former dose of Concerta plus Ritalin. She stopped refusing to go to school, anxiety improved somewhat, but she is still anxious which keeps her at the periphery of the group, but unable to join in. Her attention is now only so so and she just seems out of it most of the time. She has been seeing a Psychologist weekly for CBT for two years.
I suspect that some of her symptoms are due to progressive FMS/HPA axis hypofunction. She looks like atypical depression (thanks to JB Becker for his link to George Chrousos' article on major depression versus atypical depression and Chronic Fatigue/FMS) which is unmasked by the psychostims. Our Psychiatrist gave us a prescription for Paxil which we are waiting to fill after a sleep study is completed next week to rule out sleep apnea, restless legs or other sleep disorder (which I suspect would be secondary to HPA axis dysfunction anyway).
She has so much going on and carries a bad set of genetic baggage from both sides of the family: FMS, OCD, ADHD, schizophrenia, anxiety, not to mention all the other diseases such as heart, Parkinson's, dementia, etc. She is genetically one vulnerable young lady. BTW, a workup by a Rheumatologist rules out thyroid, immune dysfunction, Lyme's, Lupus, and the usual workup for FMS.
My questions are as follows:
1. With so much going on, where is a good place to start? Treat the atypical depression or start with a drug for anxiety?
2) What does the side effect of social withdrawal with psychostimulants and Strattera tell us about her neurotransmitter dysfunction? Did we give Strattera enough of a trial period or should we just forget it as it didn't help attention that much anyway?
3) Given her attention difficulties and lack of motivation and anxiety/social phobia, what place do drugs that increase dopamine have other than the psychostims?
4) Because of the FMS symptoms (muscle aches and tightness, Raynaud's like symptoms, orthostatic intolerance, etc.) and the role of HPA axis hypofunction, would we be better off starting her off with a tricyclic, wait for aprepitant to be released later this month to give it a whirl, or try the Paxil? And if an SSRI, any suggestions as to which might be a better first choice? What about Effexor?
5) Would ordering cortisol levels be indicated? Is salivary cortisol commonly done?I know that because of her complexity, I should just forget the questions and take her to an expert somewhere. Our local Pdocs don't seem to see the big picture and look at all her problems as being compartmentalized; one just wants to give her something for anxiety, another give her something for sleep. I mention CRH and HPA axis hypofunction and their eyes glaze over. WHAT ARE YOUR VOTES FOR THE BEST PLACE TO TAKE HER - any expert, any place? I would appreciate discussion regarding my questions, though.
I also have FMS/atypical, but that is another post. I just completed a sleep study which showed I have 200 arousals per night (and that's on a sleep med), so thank you for any help you can give this TIRED mom.
Cairo
Posted by DSCH on October 5, 2003, at 20:07:21
In reply to Help w/ daughter - atypical, anxiety, ADHD more, posted by Cairo on October 5, 2003, at 18:43:02
> 1. With so much going on, where is a good place to start? Treat the atypical depression or start with a drug for anxiety?
Tonight some of my confidence seems to have fled off somewhere, but something else must be egging me on to make a stab at this.
If there is an HPA axis problem I think that should be the first priority. Basically start at the most basic levels and then work on up to more recently acquirred functions (in the evolutionary sense) residing in the neocortex.
Does she not fell rested after sleep and have dark patches under her eyes and/or dark patches on the joints? Tea made from licorice root is actually suprisingly good for this sort of thing as it contains a cortisol-breakdown inhibitor.
> 2) What does the side effect of social withdrawal with psychostimulants and Strattera tell us about her neurotransmitter dysfunction? Did we give Strattera enough of a trial period or should we just forget it as it didn't help attention that much anyway?The decreased effectiveness of the older stim cocktail raises the possibility, as I see it, that the synthesis of neurotransmitters (particularly norepinepherine) is her current bottleneck. She might benefit from precursor loading (L-phenylalanine, DLPA, and/or L-tyrosine).
> 3) Given her attention difficulties and lack of motivation and anxiety/social phobia, what place do drugs that increase dopamine have other than the psychostims?
Not many drugs *other* than the pstims target dopamine very heavily. For example, there is, to my knowledge, no such thing as a selective dopamine reuptake inhibitor.
> 4) Because of the FMS symptoms (muscle aches and tightness, Raynaud's like symptoms, orthostatic intolerance, etc.) and the role of HPA axis hypofunction, would we be better off starting her off with a tricyclic, wait for aprepitant to be released later this month to give it a whirl, or try the Paxil? And if an SSRI, any suggestions as to which might be a better first choice? What about Effexor?
OK, I think I have exhausted my well on the previous questions! ;-)
> 5) Would ordering cortisol levels be indicated? Is salivary cortisol commonly done?
Pass. See above. ;-)
> I know that because of her complexity, I should just forget the questions and take her to an expert somewhere. Our local Pdocs don't seem to see the big picture and look at all her problems as being compartmentalized; one just wants to give her something for anxiety, another give her something for sleep. I mention CRH and HPA axis hypofunction and their eyes glaze over. WHAT ARE YOUR VOTES FOR THE BEST PLACE TO TAKE HER - any expert, any place? I would appreciate discussion regarding my questions, though.
OK, a wild stab here. Two unorthodox places would be the Amen Clinic where they would do SPECT imaging of your daughter's brain, and the Pfeiffer Treatment Center in Warrenville, IL where they take an orthomolecular approach (but the gears grind very, very slowly there). Some better university psych clinics may have SPECT, fMRI, MEG or QEEG capabilities and experts able to base treatment plans on the results of the imaging/mapping.
> I also have FMS/atypical, but that is another post. I just completed a sleep study which showed I have 200 arousals per night (and that's on a sleep med), so thank you for any help you can give this TIRED mom.
>
> Cairofemlite might be someone you'll want to talk to (she has fibro too). She's interested in xyrem for enhancing sleep.
Posted by Cairo on October 6, 2003, at 5:53:08
In reply to Re: Help w/ daughter - atypical, anxiety, ADHD more » Cairo, posted by DSCH on October 5, 2003, at 20:07:21
Thanks, DSCH. She's had a QEEG which shows hot spots just about everywhere. 60 sessions of neurofeedback didn't do anything, so we're concentrating on CBT now. MRI showed nothing, but I agree that and fMRI and SPECT may help, but my husband says that it wouldn't show much else that we don't already know from the QEEG and observation (is this right?) We'll address the sleep issue with the Neurologist after her sleep study. I'm eagerly awaiting my own return appointment to be put on the CPAP to see how many of my symptoms improve/resolve after correcting long term sleep problems. Don't know yet if I have alpha intrusion for which Xyrem is used.
I've read Amen's books and I can't get the sense that he takes this whole HPA axis dysfunction into account. There are also alot of doctors out there who will put bandaids on symptoms such as using Armour thyroid wholesale. I know several locally and the patients, my friends, feel great initially, but relapse and I wonder what the feedback inhibition is doing to their thyroids. I asked about growth hormone use, but was told that that also would negatively feed back and low GH might be secondary to sleep problems.
I whole heartedly agree with you that HPA axis dysfunction should take priority, but the interesting drugs, CRH antagonists, will take awhile. What about aprepitant in conjunction with other meds? Any advice on an algorithm for antidepressant use?
Do you think the anxiety is part of the HPA axis mess? Certainly as her other symptoms increase, her anxiety does also. I think it's both primary and secondary.
Also, thanks for reminding me about licorice. I need to read about it more for myself, actually, as I crash in the afternoons. My Endocrinologist simply won't consider low dose Cortisone. I've heard about pulse(?) Cortisone where you apparantly use tiny amounts only when you need it.
Any other advice and votes of specialists from others?
Cairo
Posted by DSCH on October 6, 2003, at 7:36:59
In reply to Thanks! More advice, votes, AD algorithm? , posted by Cairo on October 6, 2003, at 5:53:08
> Thanks, DSCH. She's had a QEEG which shows hot spots just about everywhere. 60 sessions of neurofeedback didn't do anything, so we're concentrating on CBT now. MRI showed nothing,
CBT = ?
MRI will only show structural damage. fMRI and SPECT will show metabolic hypo/hyperactivity from the standpoint of perfusion, QEEG from the standpoint of electrical activity. But as with most things, you already seem to be ahead of the curve on this.
>but I agree that and fMRI and SPECT may help, but my husband says that it wouldn't show much else that we don't already know from the QEEG and observation (is this right?)
He could have a point there. "Hotspots everywhere". Where do you begin?
>We'll address the sleep issue with the Neurologist after her sleep study. I'm eagerly awaiting my own return appointment to be put on the CPAP to see how many of my symptoms improve/resolve after correcting long term sleep problems. Don't know yet if I have alpha intrusion for which Xyrem is used.
CPAP = ?
I know virtually nothing about Xyrem other than that some on the board fighting fibro are interested in it.
> I've read Amen's books and I can't get the sense that he takes this whole HPA axis dysfunction into account.
Well, I doubt many do that at all. You would need to find someone who styles themself a neuroendocrinologist. Again, what has led you to believe this is her problem?
>There are also alot of doctors out there who will put bandaids on symptoms such as using Armour thyroid wholesale. I know several locally and the patients, my friends, feel great initially, but relapse and I wonder what the feedback inhibition is doing to their thyroids. I asked about growth hormone use, but was told that that also would negatively feed back and low GH might be secondary to sleep problems.
IIRC, the typical approach with injections and hormone supplements only tends to further downregulate the system in the long run.
> I whole heartedly agree with you that HPA axis dysfunction should take priority, but the interesting drugs, CRH antagonists, will take awhile. What about aprepitant in conjunction with other meds? Any advice on an algorithm for antidepressant use?
I've never heard of aprepitant.
> Do you think the anxiety is part of the HPA axis mess? Certainly as her other symptoms increase, her anxiety does also. I think it's both primary and secondary.
For what it's worth, it is not my impression that anxiety is wrapped up in it. If this goes out on you, it's fatigue that no amount of sleep will let you fully recover from. You feel used up. You never want to wake up in the morning.
I was shocked to rediscover the male morning hormone cycle after starting on the licorice tea. I had never been a morning person. All of a sudden I was waking up as early as 4:30 on my own, feeling an itching sensation all over (histamine flush?), and then going out for my morning 3-mile walk. Basically I felt like I had reconnected with the paleolithic hunter-gatherer that we still basically all are underneath the verneer of (post)modern civilization.
For what it is worth, licorice is an old stand-by in western herbal medicine and it is considered the number one Qi tonic by Chinese herbalists.
> Also, thanks for reminding me about licorice. I need to read about it more for myself, actually, as I crash in the afternoons. My Endocrinologist simply won't consider low dose Cortisone. I've heard about pulse(?) Cortisone where you apparantly use tiny amounts only when you need it.
>
> Any other advice and votes of specialists from others?
>
> Cairo
Posted by Cairo on October 6, 2003, at 12:49:27
In reply to Re: Thanks! More advice, votes, AD algorithm? » Cairo, posted by DSCH on October 6, 2003, at 7:36:59
Anyone else care to weigh in on a referral center or individual expert to workup/sort out our atypical/anxiety/ADHD/PTSD daughter? We need an emphasis on neuropharmacology.
Cairo
P.S. CBT=cognitive behavioral therapy
CPAP=continuous positive airway pressure
Posted by Anonymous4 on September 10, 2004, at 1:04:33
In reply to Help w/ daughter - atypical, anxiety, ADHD more, posted by Cairo on October 5, 2003, at 18:43:02
I would like to have an email exchange with the poster ---Cairo---I might have useful information because the family history for me is the same...and I have the same multiple diagnosis/symptoms as your daughter. I look forward to hearing from you cduke@justice.com
Please ---only Cairo--- email me.
Posted by mxrider on September 11, 2004, at 14:35:56
In reply to Help w/ daughter - atypical, anxiety, ADHD more, posted by Cairo on October 5, 2003, at 18:43:02
Have looked into the Amen Clinic? He is a specialist with children and ADD.
This is the end of the thread.
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