Louisa
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Posts posted by Louisa
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Hi
My son is graduating in June and will leave his therapeutic school where a psychiatrist is on site. So I need to find a new psychiatrist for him and would like to find an integrative psychiatrist. If you know of or had good experience with any good integrative psychiatrists in New Jersey, New York or Connecticut, I greatly appreciate that you could give me their names. If you prefer, you could send the names to my personal email account.
Thanks so much
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Hi
Three years ago, due to his paranoia, my son was placed out of district in a therapeutic school where psychotherapy, process group, and psychiatric support are given inside the school with a classification of Emotional Disturbance in his IEP. He has been in this therapeutic school for more than 2 years and now he is 18 years old and repeating his 12th grade due to insufficient credits for graduation on time.
He is expected to finish all his high school credits and to leave the school in summer. For the meanwhile I need to look into whether he should be placed in some training schools and hold onto his high school diploma for more support from the special education system or if he is ready for college.
Currently, his paranoia is almost none but his major challenge is OCD which interferes him with being on time to school significantly.
A few months ago he had a psychological test from outside and was found to have ASD.
My question is: IS IT worthy to make a request to his IEP team for a change of his classification of disabilities from “Emotional Disturbance” to “Autism”. My concern is just the stigma associated with "Emotional Disturbance" may go with him wherever he goes in the future (or as along as he has IEP!).
Thanks
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Does anyone know any psychiatrists in New Jersey who is specialized in ASD with OCD/anxiety? You can send me the information to my personal email account: louisalaw@gmail.com. My son is 18 years old with ASD. His current challenge is severe OCD.
Thanks so much.
Louisa
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I found Mary Reed from Safe Harbor website. I filled in the questionnaire she provided regarding my son’s condition, mainly about his OCD. It then came out with some supplements suggestion, and one the them is Evening Primrose Oil. Does anyone know or have experience on its effects on OCD or anxiety?
Thanks
Louisa
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Hi everyone
So last month I went to see a doctor who follows William Walsh's research. I got the results of my blood tests (zinc, copper, histamine, pyrolles among others) yesterday and it seems the only thing that really stands out is an elevated pyrolle level (my count is 57 - according to my doctor normal level is between 5 and 10). I've been instructed to take the following:
Vitamin C (1000mg twice daily)
Magnesium citrate (500mg)
Vitamin B6 (400mg)
P5P (60mg)
Vitamin E, mixed tocopherol version (400 IU twice daily)
Evening Primrose Oil (500mg)
Zinc Picolinate or citrate (60mg)
Manganese, as gluconate (25mg)
Biotin (2000mg)
Really excited to start this regime, but first I need to figure out who I'm going to buy them from. I keep reading lots of stuff about particular brands being tested and discovered not to contain the advertised ingredients, or to contain the ingredients but not in the advertised amounts. With the hundreds of supplement companies out there and the less intensive regulations they're subject to it's really hard to know who I can trust. I've tried looking at reviews and finding websites listing the ones with Good Manufacturing Practice certifications (which I found out about today along with a bunch of other terms I don't really understand) but the whole process is such a confusing muddle!
I was wondering whether anyone could give me any advice on which supplement manufacturers can be most trusted for accuracy?
One website I've discovered which looks like it could be useful is www.labdoor.com, which says that it runs independent tests on supplements bought in shops and publishes the results (I say 'says' because ultimately I don't know how much I can trust the accuracy of their own tests). I'm a little discouraged by the fact that it seems most brands have at least one product with quite a noticeable discrepancy. Things like zinc, magnesium, B6 and vitamin C tend to test fine, but Vitamin D freqently seems to come up around 30% more or less than the dose stated on the label.
It all seems like a confusing, tangled maze - an additional frustrating complication for those of us already tasked with moving our own mountains on our quest for health.
check the following link
http://www.anh-usa.org/an-update-on-our-recommended-supplement-companies/
My son takes a lot of supplements which are from Pure Encapsulations
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In our experience, zinc and B6 are great supplements for combatting anxiety, so I would think you'll see some boost there soon via that. How much B6 is your DS taking? Ours took 1,200 mg in the morning and another 600 mg at night initially, though he has scaled back some in the last year or so to no ill effects.
We tried zyprexa and didn't like it for a host of reasons. In our experience, though they are being used more and more frequently for a "quicker fix" for anxiety than SSRIs may provide, these heavy-hitter antipsychotics are not a proper (especially in the long-term) intervention for anxiety/OCD. I think Dr. Greenblatt's reduction plan on this (and hopefully elimination eventually) is great. Both my DS and another "non-PANDAs" family member suffer from anxiety/OCD, and antipsychotics (zyprexa, abilify, Seroquel, etc.) have not proven to be effective and, rather, unfortunately, have tended to take things the other, less positive, direction.
Our original psych, when things got back with our DS several years ago and the psych couldn't seem to find an effective med, put him on anafranil. It was not the right medication for him. When we changed psychs and found our current one, she said anafranil was contra-indicated for a kid like our DS and was precisely the WRONG medication for him.
I don't know about adding Prozac on top of the Zoloft as I've never seen this strategy employed unless the patient was going to be transitioned from one SSRI to another. Is it the case that your DS has been on Zoloft for an extended period, and so it possibly has ceased to have the effectiveness it once did? SSRIs do have a reputation for "burning out" over time. My family members have responded very positively to both Prozac and Zoloft, though not at the same time. My only concern would be potential for serotonin syndrome, in the event inadequate serotonin is NOT at the root of your DS's increased OCD of late, and the Prozac just increases serotonin levels beyond what's beneficial.
I think it's still something of a mystery why certain meds work for certain people, and don't work or even seem harmful for others. That's why these genetic tests like GenoMind are getting increased marketshare, I think, as they're supposed to help identify meds that are best for your particular situation. I will say, though, too, that my DS and yours sound somewhat similar (pylouria, OCD, some of the same compulsion sets, like a necessary routine/ritual that threatened at one point to make him late for everything in his life!), and here's what my DS took that worked well for him: Zoloft, Lamictal, B6, NAC, zinc, D3, evening primrose oil, probiotics (mixed strain), quercitin.
All the best!
Thanks for taking time to respond
My son takes B6 50mg x2 now and will increase the doze in a couple of months. What was the doze you son started off and how long did you start see the effect?
Do you remember what was the reason why your psychs said anafranil was the WRONG medication for your son? If I am right, anafranil is the only medicine that is used to specifically treat OCD.
My son has taken Zoloft for 3 years, which initially was for his “atypical depression” labelled by his doctor (although we did not see any depression in him). After 1 year, when his OCD emerged and increased, it became the medicine for his OCD although I do not feel it is really helping him at all. However, since we have been trying to work on reducing Zyprexa in these two years, so we just leave Zoloft alone. In fact, my son had genetic test with GenoMind, which suggested Zoloft was not a good match for my son.
The following are supplements my son is now taking
B6, B12 (liquid), Niacinamide, VitC, NAC, lithium orotate, D3, fish oil, CurcumaSorb Mind, probiotics (mixed strain), Zinc.
How did your son do with the supplement he is taking? How did you come up with these supplements for your son’s OCD?
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Hi,
My son used to have mild OCD. But last summer, his OCD increased significantly. Dr. T found he had PANDAS and prescribed him with various kinds of antibiotics, which, unfortunately, made his OCD worse. Later, the Cunningham test showed he had autoimmune disorder and was prescribed with Prendisone, which even made his OCD much worse. So we stopped all these medicine. And later, with increased probiotics, his OCD was relieved. Although it was still significant, it was within a tolerable level.
Last week without a clue again (or maybe due to increased social anxiety in school), his OCD increased back to the high level like that in summer. So his school psychiatrist wanted to increase his medicine for OCD because he has been very late for school due to OCD during morning routine. His current medicine for OCD is zoloft 200mg. He is also taking zyprexa for his paranoia.
Personally, we do not want to add any medicine. He has been seeing Dr. Greenblatt, an integrative psychiatrist, who give him several supplements. His paranoia has been reduced to minimal and zyprexa reduced from 30mg to 10mg in two years since he started taking the supplements. A recent Kryptopyrrole test indicated he had elevated pyroluria and Dr. Greenblatt has just prescribed him with Zinc and Vit B6, hopefully to reduce his anxiety. We would like to see how the new supplements work before changing his medicine.
Anyway, his school psychiatrist proposed three options for us to consider for treating his OCD
1. to increase zyprexa from 10mg to 15mg in order to boost up the effect of zoloft.
2. to add another SSRI, such as Prozac, on top of 200mg zoloft
3. to add another tricyclic , such as Anafranil, on top of 200mg zoloft.
Any feedback for the medicine options and any suggestion relating to what happened to my son's OCD are greatly appreciated
Thanks for your time
Louisa
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No, PANDAS is a clinical diagnosis, and insurance and MDs like to see objective measures.
It's when we got the high CAMKII, all MDs became comfortable conceptualizing what he had as an autoimmune encephalitis. However PANS is still in his medical record, and that alone seems to have been enough to disqualify him from having IVIG covered :-(.
The CAMKII is an indirect measure by a cell stimulation assay our insurance doesn't recognize (unlike the direct autoantibody assays).
I've been hoping (fantasizing??) that if we find specific antineuronal auto-antibodies obviously elevated then insurance would accept a Dx of autoimmune encephalopathy due to _____ (say antitubulin), and cover IVIG to treat that. But I've never walked this road before.
I know there are many here whose kids have had elevated autoantibodies. I don't know if it made any difference.
Can anyone share their experience in IVIG?
My son did not respond well with antibiotics and prednisone for his OCD. Dr T. and my son's psychiatric nurse practitioner suggested IVIG may be the next step.
Thanks
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I don't know about Dr. T, but Dr. L works for us because: if it's PANDAS, she'll see it right away, if it's not, she'll tell you (she's a neurologist and can spot other issues, too). Also, she works wonderfully with other doctors/specialists as she respects their specialty as she wishes hers to be. Her assistants and she are very responsive once you are an established patient, by phone and email and if you need a prescription...
No experience with Dr. T, but Dr. K is also good, though very different from Dr. L
Can you give me the full name of Dr. K and Dr. L?
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We will be planning a trip to a specialist to have our daughter evaluated for autism and possible PANS. If she does have PANS it would not be a "textbook" case, but we really need someone who is willing to think outside the box about what might be the underlying cause of her challenges and how we might treat them. We are leaning toward Dr. T because he seems willing to leave no stone unturned and consider all possibilities. However, Dr. L's location is much more convenient for us. Visiting either one will be a sacrifice for us, so I want to make it count. In order to make the best possible decision for our daughter, I would truly appreciate any input about what we might get out of an evaluation with these two doctors in terms of the tests each typically runs, the types of treatment each is most likely to prescribe, how conservative each is in making diagnoses, or general recommendations. Please feel free to PM me if you prefer. Thank you in advance for your help.
My son had seen Dr T for 3 visits. With all the extensive blood work and expensive autoimmue test, he seemed to be confident in getting the right treatment for my son. Unfortunately, the antibiotics and the prednison later on made his OCD even worse. Dr. T and his office responded to our concerns about my son's negative reaction to medicine very late. For one or two times, they simply did not respond at all. So we stopping going.
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Anybody knows of good intensive OCD program for late teens in new york/ new Jersey areas?
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Does anybody know what the following tests do and how they can help in reference to OCD.
Kryptopyrrole test
Genetic test with Great Plain Lab
Micronutrient test by Spectracell
Food Allergy test by US BioTek
Neuro-Biogenic AminesThank you
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I hope it is not too late to respond. Dr. James Greenblatt is an integrative psychiatrist in Waltham, 20 minutes from Boston. He referred my son to several tests, including food sensitivity, ION test, Organic acid test, Gluten and Casein Peptides. He prescribed different vitamins and supplement for my son who made tremendously improvement in his paranoia since then.
You can google him to locate his office and telephone number.
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Thanks for your information
My son has Sjogren's AB SS-A negative and SS-B positive.
Just found out the research paper (http://www.ncbi.nlm.nih.gov/pubmed/25735642) with conclusion as below
The presence of anti-SSB, without anti-SSA antibodies, had no significant association with SS phenotypic features, relative to seronegative participants. The solitary presence of anti-SSB antibodies does not provide any more support than negative serology for the diagnosis of SS. This serological profile should thus be interpreted cautiously in clinical practice and potentially eliminated from future classification criteria.
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Nancy
The author of the book is Kenneth Bock, not Steven Bock. Are they related? Did you refer to Kenneth Bock or Steven Bock in your reply?
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Please share your experience if you or your child has ever worked with NYU Child Study Team in Hackensack NJ for OCD?
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My son was on Amoxicillin, Augmentin, Clindamycin and Rifampin for 10 days in different times, and on prednisone for 10 days after the result was positive in Cunningham tests (July 2016). For some reason, his OCD became much worse than before the treatment. If it is due to a herxheimer reaction, should I have seen at least some improvement within 10 days of time??
During my 3 visits, Dr. T was very nice to spend time answering all my questions and seemed very confidence in being able to help my son. Unfortunately with all the medicine, his OCD was worse.
Between the visits, I have called his office a few times about my son’s adverse reaction to the antibiotics and prednisone. They were either very late to respond or not responsive at all. However, when I asked to set up a follow up appointment, they replied right away.
I know Dr. T is a very knowledgeable in treating PANDAS, but with my experience with his office, I am not sure if I want to go back. I would want to find an integrative doctor who also knows how to support my son with natural supplements in addition to medicine so that the side effect of the medicine can be minimized.
Did anyone work with Dr. Steven Bock, an integrative LLMD in New York?
I am thinking to get consultation with him. Although my son's blood tests prescribed by DR. T showed negative in lyme infection, I am not sure if quest diagnostics was able to accurately test for his lyme infection and if his herxheimer reaction was due to lyme disease.
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My son is 18 years old and has Aspergers.
here is the problem for his OCD using ERP treatment
During ERP session, the therapist will have the patients exposed in a situation where they feel anxious and show OCD. I can understand how the exposure will help those patients with OCD, like washing hands, touching things, or just intrusive thoughts.
But my son’s OCD is displayed when he is getting changed (to repeatedly make sure his certain body parts are covered and endlessly thinking about that). So if he is in ERP, that means the therapist will see him getting changed while working with him???
I just do not know how ERP would work that way. Does any one has the experience with working with a therapist using ERP for such “private” OCD?
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Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms.
If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase.
Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.
Thanks for the information which really fit into my son's situation. I feel like I am seeing a light again. His Lyme and Babesia tests were negative with Quest Diagnostics. Definitely I will explore getting the Lyme test again with Igenex. Do you know how much they charge for the test?
Does anyone know of good integrative LLMD in new Jersey or nearby states.
Thank you
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Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms.
If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase.
Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.
Thanks for the information which really fit into my son's situation. I feel like I am seeing a light again. His Lyme and Babesia tests were negative with Quest Diagnostics. Definitely I will explore getting the Lyme test again with Igenex. Do you know how much they charge for the test?
Does anyone know of good integrative LLMD in new Jersey or nearby states.
Thank you
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My DD did CBT at Rothman as part of a study. Hard work and took time but totally worth it in the end. I will say when she was in a full flare therapy did nothing, only meds worked. Now that PANDAS is controlled she uses the techniques she learned to manage her long standing anxiety and OCD residuals. Your right that the thoughts never completely go away, goal is to manage them.
My son has had more than 15 session in CBT treatment which mainly involves talking, and the effect was none to minimal. I am looking for a therapist who can do ERP. I live in northern new Jersey. Does anyone know of good therapists with ERP specialty in new york and new Jersey.
My son's OCD is severe and he does not seem serious about fighting his OCD. I am not sure if he is a good candidate for ERP treatment then
Your information and advice is appreciated.
Louisa
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Hi
My son was taking inositol for his OCD as recommended by his integrative psychiatrist this April, but his OCD became a little worse. He is also taking a lot of other supplements,including lithium orotate.
I have just learnt from different website that Inositol cannot be taken together with Lithium, as it seems to block its action.
Has anyone ever heard of that? Please share your experience in using inositol for OCD.
Thanks
Louisa
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My two cents on a couple of possible angles to consider: (1) lyme - was the test through Igenex or a regular lab? (2) immune system issue. If there hasn't been testing of the immune system - IgG levels and so forth - I'd look at that next. As much as antibiotics are a first-line treatment, there really is no agreed-upon, conventional treatment for PANDAS. Besides antibiotics, IVIg has also been studied. My guess is that many people may need a multi-faceted approach to treatment.
If strep is still around, I'd want to be on some antibiotic if possible, for a lengthy duration. It would not be unusual to need to try a few different antibiotics before finding one that at least didn't hurt even if it didn't clearly improve the ocd.
FWIW, my child tends to respond similarly - either the same or worse on antibiotics and worse with steroids. He had a positive lyme test through Igenex but negative through Labcorp. Unfortunately, treating lyme and confections led to no improvement. We are now working on IVIg for an immune deficiency. We don't know yet whether we'll have to return to lyme treatment after IVIg (eh, I often do some herbal treatments on the side, but no major antibiotics at this time).
His lyme test was done in Quest Diagnostics and showed negative. So you suggested we should do it again through Igenex?
He also had high level of Sjogren's AB, which Dr. T noticed but did not think he needed to do anything about it yet. Do you know anything about that?
I am also thinking whether his OCD and high level of strep A antibodies in fact are independent in his case. Could it be?
His IGA and IGG level were normal except for IGG subclass 3 a little high.
We are just too scared to let him try different antibiotics or to try for a longer time because he responded so badly every time and you see his OCD deteriorate with the treatment. How long do you think is sufficient to see the effect?
Dr. T also mentioned IVIG. If he does not respond to prednisone, would IVIG be helpful? I learnt about IVIG. Although the literature and patients feedback showed it helps most of the time and does not have terrible side effect in general, we just feel it is so invasive and are not sure if it is worth to try.
Your feedback and experienc are greatly appreciateded
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Hi
Please help my son. I am desperate!
My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function.
April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit.
In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he ordered a comprehensive blood test which showed he mainly have high level of Strep A antibodies, no Lyme infection. Then he prescribed Clindamycin and Rifampin, his OCD got worse again. Lastly, Dr. T ordered Cunningham panel of tests, which indicated my son has autoimmune disorder. Dr. T. then gave him prednisone 50mg for 10 days and expected a speedy recovery after 2 to 3 days. Unfortunately, his OCD continued to get worse and even worse than before his treatment with antibiotics. Before the treatment, he could still make it to school. After the treatment, he cannot make it at all.
Now He has to take more than 3 hours for morning routine due to OCD.
All this blood test results seemed to suggest PANS but the conventional treatment does not help at all and even make his OCD worse. Please help me make sense of it. I am desperate.
Thanks
Louisa
integrative psychiatirst
in PANS / PANDAS (Lyme included)
Posted
Sorry, click too fast, my personal email account; Louisalaw@gmail.com
Thanks