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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 22 of 22. This is the beginning of the thread.
Posted by FloydAS on September 10, 2015, at 7:31:13
Bear with me as I explain via rant.
I've previously discussed my history of GAD and potentially depressive symptoms that I'm being treated for via Brintellix (20 mg) after failing treatment with Zoloft. The Brintellix has helped a good bit, so much so that my PRN use of Xanax XR that is prescribed is basically not needed anymore.
Fast forward to the purpose of this post. I have a 9 year old daughter who exhibits similar GAD and separation anxiety symptoms. Her issues are much more pronounced. We put her through a year and a half treatment of Cognitive Behavioral Therapy to deal with her issues that have been completely unsuccessful. I believe she has some form of panic disorder that prevents her from putting any of the tools she learned in CBT to use when she gets into that state.
My daughter was diagnosed at 4 years old with a very rare Primary Immune Deficiency. More recently, she was additionally diagnosed with a rare connective tissue disorder called Ehler's Danlos Syndrome. What this means is that she undergoes significant amounts of medical tests, and suffers from countless numbers of health issues. We have to give her weekly immunoglobulin infusions to deal with her immune deficiency so that she can remain somewhat healthy but that doesn't cover everything.
School-wise she has an unnatural fear of fire drills and lockdown drills and is generally afraid of dying. She hasn't gone through a lockdown drill at school in 3 solid years in a row yet she stresses over this every single night before bed to the point that she nearly gets sick.
We recently had to pull her out of school to deal with ongoing Gastrointestinal issues that would not resolve. She went through an endoscopy and rounds of lab work. Everything came back normal except her liver enzyme levels were slightly elevated. They've been elevated for some time now and are continuing on the up tick. Her immunologist wants to perform further testing to see what's going on here - I am afraid her constant state of stress may be playing a role as the GI doctor says her levels, while elevated, are not yet alarming.
She has also been to see a pediatric psychiatrist - basically the only one in our area. She performed a DNA cheek swab and the results came back indicating that nothing would be compatible with my daughter and the psychiatrist sent us on our way.
My frustration is that there seems to be a significant lack of pediatric mental health options available to kids who obviously need help. My daughter seems to fit this description in my view as it appears to be affecting her schooling and being able to cope with just being "different" than just about everyone else her age that she meets. She has enough challenges as it is and this is compounding the issues.
The only saving grace is that her GI doctor recently prescribed Elavil (Amitriptyline) for off label use to treat her belly issues and headaches and as a side benefit hopefully help her anxiety as well. I have no idea if this is appropriate, safe, and/or good for her from a psych standpoint as he is a GI specialist. The fact that we have nearly zero options for mental health professionals to properly evaluate her condition and provide us assistance is absolutely FRUSTRATING beyond belief.
I'm not necessarily looking for answers. I'm mostly just needing to vent as watching my little girl struggle with so many things is difficult and troubling despite our best efforts to get her the help she needs. I know mental health assistance is lacking across the board, but pediatric assistance appears to be in the worst shape from our experience, at least where we live.
Thanks for listening and allowing me to vent. It helps getting things off my chest.
Posted by SLS on September 10, 2015, at 8:36:16
In reply to Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 7:31:13
Despite its lack of success with your daughter, psychotherapy was the right choice as a first-line treatment. Perhaps something other than CBT would be more helpful. I found interpersonal therapy (IPT) or more eclectic approaches to be most helpful. In any event, I would make psychotherapy part of an integrative treatment for your daughter, even in combination with medication. Chronic anxiety and depression can leave quite a mess in their wake, so even it a medication remedies the biology, psychotherapy will help clean up that mess.
Medication? SSRIs and SNRIs demontrate an ability to improve symptoms in GAD. Personally, I like the way SNRIs treatments affect me more than SSRIs. The SNRIs, Effexor (venlafaxine) and Cymbalta (duloxetine) have been studied for pediatric GAD, and have demonstrated some efficacy. I would also check out Pristiq (desvenlafaxine). The dosages of Pristiq used for depression is much lower than for Effexor. Among the SSRIs, Paxil (paroxetine) is probably most effective for GAD, but side effects can be problematic and it will increase blood levels of Elavil (amitriptyline) by a factor of two. (This is also true of Prozac (fluoxetine).
Some treatments being studied that do not inhibit the reuptake of serotonin include Lyrica (pregabalin) and Valdoxan (agomelatine). Valdoxan would be an interesting choice. It is less likely to induce euphoria and is perhaps less likely to poop-out quickly (tachyphylaxis). Buspar (buspirone) might be helpful.
- Scott
Posted by Phillipa on September 10, 2015, at 11:40:10
In reply to Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 7:31:13
I'm familiar with Ehlos Danlos Syndrome and I advise a doctor in a hospital that deals with is autoimmune disorder. The one of tissue fagility and hyper flexibility of joint. Rhematologists usually deal with the autoimmune disorders and can recommend a good doc for her. Her is a links from the website and see there is a facebook page on this too. Might find a lot of others with similar disorder to advise you. Here is a link for you. Good luck. P
http://www.ednf.org/what-eds
Posted by Phillipa on September 10, 2015, at 11:45:00
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Phillipa on September 10, 2015, at 11:40:10
Go to the facebook page on this the link is in the article. Very informative FB page
Posted by FloydAS on September 10, 2015, at 12:41:31
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Phillipa on September 10, 2015, at 11:40:10
Thank you. She was originally diagnosed by a genetics specialist who was looking further into her immune deficiency issues (her specific immune deficiency is similar to common variable immunodeficiency but not exactly so they think her condition is possibly an unidentified primary immunodeficiency - currently there are over 275 identified rare primary immune deficiencies).
She is now being evaluated every other year by a pediatric cardiologist to keep tabs on potential vascular problems with the tissues and arteries around her heart. So far so good there.
In the mean time, her immunologist and a rheumatologist are treating her for constant flare ups of juvenile arthritis in her joints. She deals with the hypermobility and flexibility aspect of the EDS condition.
Her immunologist is a godsend. He treats her like she is his own child. He frequently calls us on weekends just to see how she is doing. She's such a unique case - he ensures he runs point on every aspect of her medical care and we're fortunate for that.
Posted by Christ_empowered on September 10, 2015, at 13:08:44
In reply to Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 7:31:13
I don't know about Elavil, but other TCAs are/were used in kids for various problems. Tofranil has been used for ADD/ADHD and bed wetting, also.
Anyway...I'm sorry about your situation. Things must be rough. I'm glad your daughter is receiving good medical care (except for the psychiatric stuff).
I hope things work out for y'all.
Posted by SLS on September 10, 2015, at 13:46:58
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 12:41:31
If I'm not mistaken, I believe there is an association between GAD and chronic G.I. symptoms that are otherwise unexplained. IBS is one. Elavil is a drug that has long been used to treat IBS. Hopefully, it will reduce anxiety as well. What dosage of amitriptyline is being used?
My question is whether or not treating anxiety aggressively would reduce G.I. symptoms. Regarding inflammation, both depression and anxiety induce the release of pro-inflammatory cytokines in the brain. It can be measured in the blood, including C-reactive protein. So, did the inflammation induced by GAD produce the G.I. symptoms? I don't know. Another possibility is that the chronic activation of the HPA axis as seen in anxiety and depression makes the system less able to reign in inflammatory responses. These are just ideas that occurred to me. I don't necessarily believe that these things explain your daughter's G.I. symptoms.
Some people will argue that the G.I. symptoms come first and produce inflammation, and that this inflammation affects the brain adversely to produce depression and anxiety. I simply have not researched these things very well. It is my inclination, though, that inflammation is the result of mental illness rather than its cause.
- Scott
Posted by FloydAS on September 10, 2015, at 15:10:59
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by SLS on September 10, 2015, at 13:46:58
My daughter's GI symptoms are a result of her primary immune deficiency. Your immune system is supported primarily by immunoglobulins that fight off infection, viral and bacterial. A large majority of these of these are created within your GI tract. There are different classifications of immunoglobulins - IgG, IgA, IgE, IgM.
My daughter is deficient in IgG (fights upper respiratory infections and can be supplemented with infusions) and IgA (cannot be supplemented). IgA deficiency causes GI aggravation and small intestinal bacterial overgrowth and propensity for Giardia and other parasitic infections to take over. Where most medical practice shies away from the use of antibiotics, in patients with primary immune deficiency, doctors actually have to be fairly aggressive with antibiotic use.
My daughter stays on a prophylactic treatment of Xifaxan to deal with the small intestinal bacterial overgrowth issues. The good thing with Xifaxan is that it doesn't get absorbed into the blood stream - it just sits in the gut and does its thing so it has a fairly safe profile. But sometimes a strain evolves that the drug doesn't treat and she has issues and other treatments need to be used on a trial and error basis and/or she gets scoped. she's had 5 endoscopies and 3 colonscopies in her 9 years among many other things so she's been through a lot.
As you can see it's no secret as to why she may have psychiatric anxiety and panic disorder related issues and fear of dying. She's had to deal with more than her fair share for someone her age.
Posted by Horse on September 10, 2015, at 15:11:41
In reply to Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 7:31:13
That is so much for a child to handle. I'm very sorry she and your family go through this. Her experiences sound traumatic and the anxiety and separation anxiety sound completely understandable. She's very young, still, and I'm not completely surprised her cbt did not 'take' yet. Those skills might resurface in a couple of years. What I'd like to mention is the value of good play therapy for a child her age. Have you tried that. I believe it can be very effective with trauma and other ongoing stressful situations.
I'm not sure I understand completely, but from what you say, the pediatric psychiatrist sounds like a horse's ass. I'm not sure how resource rich your area is, but in my town, resources are kinda here, but darn take so much digging to get to. I'd have thought everyone would know everyone else and be able to refer. Nope. So I hope someone new will turn up. If, for instance, you try play/sand therapy (if you haven't already), that might yield new referrals.
You and your girl are really up against some difficult stuff, and I'm so sorry your child feels afraid. Sending warm hugs and wishing you continued courage.
Posted by FloydAS on September 10, 2015, at 15:54:23
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Horse on September 10, 2015, at 15:11:41
> That is so much for a child to handle. I'm very sorry she and your family go through this. Her experiences sound traumatic and the anxiety and separation anxiety sound completely understandable. She's very young, still, and I'm not completely surprised her cbt did not 'take' yet. Those skills might resurface in a couple of years. What I'd like to mention is the value of good play therapy for a child her age. Have you tried that. I believe it can be very effective with trauma and other ongoing stressful situations.
>
> I'm not sure I understand completely, but from what you say, the pediatric psychiatrist sounds like a horse's *ss. I'm not sure how resource rich your area is, but in my town, resources are kinda here, but darn take so much digging to get to. I'd have thought everyone would know everyone else and be able to refer. Nope. So I hope someone new will turn up. If, for instance, you try play/sand therapy (if you haven't already), that might yield new referrals.
>
> You and your girl are really up against some difficult stuff, and I'm so sorry your child feels afraid. Sending warm hugs and wishing you continued courage.I appreciate your thoughts. We've been through much as a family. She's been through much more dealing with the disorder herself. I will fight till the death for my little one. It is the reason she was diagnosed after "only" 4 years of issues. The current average length of time for diagnosis of her immune condition is 12-15 years due to the rarity of the condition and the way it presents as "typical" infection that simply recurs. Unfortunately most primary care docs and even specialists are not well trained to identify these rare disorders and they go undiagnosed for far too long. My wife and I simply would not accept her condition as typical and we continued to hop from doc to doc until we finally got her diagnosed appropriately, and by a simple blood test go figure.
We'll do the same with the psychiatric issues. It is certainly frustrating because the pool of resources appears significantly limited which was my original point. And you're correct, the first pediatric psychiatrist was indeed an idiot to simply send us off with zero other options or referrals. We'll just stay the course until she gets better on all fronts.
Posted by SLS on September 10, 2015, at 16:00:55
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 15:10:59
> My daughter's GI symptoms are a result of her primary immune deficiency. Your immune system is supported primarily by immunoglobulins that fight off infection, viral and bacterial. A large majority of these of these are created within your GI tract. There are different classifications of immunoglobulins - IgG, IgA, IgE, IgM.
>
> My daughter is deficient in IgG (fights upper respiratory infections and can be supplemented with infusions) and IgA (cannot be supplemented). IgA deficiency causes GI aggravation and small intestinal bacterial overgrowth and propensity for Giardia and other parasitic infections to take over. Where most medical practice shies away from the use of antibiotics, in patients with primary immune deficiency, doctors actually have to be fairly aggressive with antibiotic use.
>
> My daughter stays on a prophylactic treatment of Xifaxan to deal with the small intestinal bacterial overgrowth issues. The good thing with Xifaxan is that it doesn't get absorbed into the blood stream - it just sits in the gut and does its thing so it has a fairly safe profile. But sometimes a strain evolves that the drug doesn't treat and she has issues and other treatments need to be used on a trial and error basis and/or she gets scoped. she's had 5 endoscopies and 3 colonscopies in her 9 years among many other things so she's been through a lot.
>
> As you can see it's no secret as to why she may have psychiatric anxiety and panic disorder related issues and fear of dying. She's had to deal with more than her fair share for someone her age.That is so very complicated. Thanks for taking the time to explain things. It is a blessing that you have educated yourself and understand so much. I wish for your daughter the healing she so very much deserves.
I'm always looking to fix things. It is a character flaw of mine. Anyway, I found the following abstract on Medline Pubmed:
http://www.ncbi.nlm.nih.gov/pubmed/26071205
I hope you feel supported here.
- Scott
Posted by linkadge on September 10, 2015, at 17:22:16
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by SLS on September 10, 2015, at 16:00:55
Hi,
I have no experience or understanding of the specific disorder your daughter has.
However, there is a link between gut bacteria and mood. Probiotics (can) have antidepressant effects. With your daughters syndrome, I assume the use of probiotics is to be strictly avoided?
I know that supplemental probiotics can boost brain levels of serotonin (don't ask me how), but it has been shown in animal and human studies. The use of antibiotics (as your daughter requires) may therefore kill off some beneficial bacteria? Again, this is an area that I have little knowledge.
Some random thoughts:
Lithium? Low doses can have significant antidepressant effects. Lithium also has a documented ability to boost white blood cell count.
tryptophan? (or 5-htp) - to boost serotonin synthesis
St. John's Wort?
Also you said that the psychiatrist "performed a DNA cheek swab and the results came back indicating that nothing would be compatible with my daughter and the psychiatrist sent us on our way."
If this is what the psychiatrist did, this is complete nonsense!! You need to see another psychiatrist! You *cannot* diagnose affective disorders (or determine effective treatments) based on DNA tests. Period! No medical school in North America would recommend this course of action.
Linkadge
Posted by Phillipa on September 10, 2015, at 17:30:24
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 15:54:23
I'm a bit familiar with the IGf & IGa as had chronic lymes disease and was on antibiotics for over two years and a month in hospital. Have you also seen an infection control Doctor at a big children's hospital? No idea where you live. But would this help. I also know the feelings of fear from being sick. With the noise sounds a bit like PTSD? I will see if can find anything else also for you. I empathize with your whole family. P
Posted by Phillipa on September 10, 2015, at 17:34:14
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Phillipa on September 10, 2015, at 17:30:24
Floyd seems like Boston's Children's Hospital Has an excellent program. Her is the link. Hope this helps. Phillipa
http://www.childrenshospital.org/conditions-and-treatments/conditions/ehlers-danlos-syndrome
Posted by FloydAS on September 10, 2015, at 17:55:51
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by linkadge on September 10, 2015, at 17:22:16
> Hi,
>
> I have no experience or understanding of the specific disorder your daughter has.
>
> However, there is a link between gut bacteria and mood. Probiotics (can) have antidepressant effects. With your daughters syndrome, I assume the use of probiotics is to be strictly avoided?
>
> I know that supplemental probiotics can boost brain levels of serotonin (don't ask me how), but it has been shown in animal and human studies. The use of antibiotics (as your daughter requires) may therefore kill off some beneficial bacteria? Again, this is an area that I have little knowledge.The use of probiotics in immune deficient patients is one of controversy. Some immunologists order their adult patients to take them religiously. However there have been very rare instances where death has occurred due to some initiated autoimmune response traced back to the probiotic treatment.
Given my daughter's age and non-categorized primary immunodeficiency the doctors feel it best to be conservative and not attempt probiotic treatment since there is no possible way to predict her body's reaction. The downside is the potential loss of good guy bacteria but all things considered that is of little concern compared to the alternative consequences.
Posted by FloydAS on September 10, 2015, at 18:05:24
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by Phillipa on September 10, 2015, at 17:34:14
Thanks Phillipa. My daughter has been evaluated by an infectious disease specialist who confirmed the original diagnosis and course of infusion treatment. From a medical standpoint we are fairly satisfied with where we are with her team of specialists. Additionally those specialists have been conferring with other experts at UCLA, St. Jude, Philadelphia, etc. on the details of her case. She is fairly famous in the Primary Immune Deficiency medical community circles.
Posted by baseball55 on September 10, 2015, at 19:22:22
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 18:05:24
I feel for your daughter and am glad she is blessed with concerned and loving parents. But some therapy might help her process all the fear and anxiety she has, understandably. Not CBT, but just regular child therapy, involving talk, play, building a relationship to express, as best a child can, her feelings.
Are there psychologists or social workers in your area who specialize in child psychology? You might want to interview some.
Best wishes to you and your family.
Posted by Phillipa on September 10, 2015, at 19:31:41
In reply to Re: Lack of Pediatric Psych Options Discussion, posted by FloydAS on September 10, 2015, at 18:05:24
What are their suggestions for your young Daughter's fear. I feel for you all. So difficult for all involved. Phillipa
Posted by FloydAS on September 10, 2015, at 19:54:33
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Phillipa on September 10, 2015, at 19:31:41
The first psychologist only worked the CBT with her. She did not provide much else in the way of guidance other than some tools to use when the fears creep in. But what the psychologist never fully appreciated was that those fears translated to panic rather quickly so those tools went straight out the window and were ineffective for her.
We are in the process of getting an appointment setup with a new clinical psychologist at another pediatric clinic in the area. We are very hopeful this works out as we don't have many other options unless we consider the social worker/counselor route.
Posted by linkadge on September 10, 2015, at 20:19:54
In reply to Re: Lack of Pediatric Psych Options Discussion » Phillipa, posted by FloydAS on September 10, 2015, at 19:54:33
low dose lithium may be worth looking into, both for its positive effect on a variety of affective disorders and its ability to positively influence disease related changes in immune and inflammatory function.
Linkadge
Posted by Phillipa on September 10, 2015, at 20:43:00
In reply to Re: Lack of Pediatric Psych Options Discussion » Phillipa, posted by FloydAS on September 10, 2015, at 19:54:33
Home schooling possibly for a while? I just don't like the thought of someone so young and vulnerable on a medication. I do hope this psychologist can help her. I truly do. Phillipa
Posted by FloydAS on September 10, 2015, at 21:13:33
In reply to Re: Lack of Pediatric Psych Options Discussion » FloydAS, posted by Phillipa on September 10, 2015, at 20:43:00
> Home schooling possibly for a while? I just don't like the thought of someone so young and vulnerable on a medication. I do hope this psychologist can help her. I truly do. Phillipa
We are homeschooling at the moment but prefer to have her in school and in as much of a typical environment as possible. The reason she is out right now is due to her liver enzymes being elevated and our need to have that evaluated and to resolve this most recent severe flare up of GI issues. We recognize that homeschooling her may need to be a permanent solution at some point which will be dictated by her chronic condition.
This is the end of the thread.
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