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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Hello, I had a consult with Dr. Trifiletti on Monday a week ago. The cost was $450 which has already been billed to my credit card.

 

He mentioned some bloodwork that needed to be done and said he would be in touch with me. But it's been 11 days and I haven't heard anything from him. I have e-mailed him and Silky, his secretary, twice and haven't heard anything back.

 

I have heard nothing but good things about him, so I can't figure out what's going on? How long does it typically take to hear back from him and get the ball rolling on a diagnosis?

 

*Please* help with any information you have. I have tried so many other things to help my daughter and finally got the nerve to contact him for a consult.

 

But now I don't know what to expect. How long should I wait for further contact? Suggestions?

 

Thanks in advance.

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This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).

 

Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.

 

In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.

 

I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

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Thank you so much for your response. I am definitely not interested in doctor bashing, as that would not help our cause. I just want help. I will say this one thing and leave the issue: when I was contacting both him and his secretary for the initial consultation, I got responses within hours.

 

Since we started on this journey five years ago, we have been through 3 pediatricians, 2 homeopaths, 2 naturopaths, we have tried craniosacral therapy, occupational therapy, chiropractic, and every diet under the sun.

 

I felt like Dr. T was the end of the road as far as someone who could help, and he was very positive and encouraging on the phone, and now nothing. Fortunately, I did specifically ask for which bw he was going to request, and he gave me the list which I will post here. Forgive me if I don't write them correctly...

 

ACO Strep (A&B)

Microplasma

Anti-rosela

Mono

Coxsackie - *possibly

Lime - *possibly

Thyroad - *possibly

Anti-[thyroid??] antibodies

Lupus

B12/Folate

Pneumococcal titers

 

I did all kinds of searches for reviews of Dr. T before contacting him, and saw all glowing reviews and nothing really negative.

 

Any help is appreciated,

 

Thanks

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I just saw your last sentence.

 

I definitely lean more alternative/natural, but honestly it has not worked for us. That's why I'm going conventional this time. The one thing we haven't tried is the GAPS diet, but with her sensory issues there is NO WAY I could get that food down her throat. NO way.

 

We would like to try long-term antibiotics. Without going into our whole story, one thing that we have noticed is that when we have put her on antibiotics for unrelated issues, her symptoms always improve. It's really noticeable. That and her history really points directly to PANDAS.

 

We could travel to the Richmond/Charlottesville, VA area or to the Charlotte, NC area, or Orlando, FL.

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I believe there's a Panda-friendly doctor in the Charlotte area - you can check the thread "Doctors who've helped us" that's pinned at the top of the list of discussions. You may also want to look for an osteopath, who tend to be of the same mindset as naturopaths except that they have MD's and can prescribe antibiotics and other medications if needed, which a naturopath can't.

 

The tests you describe are these:

1. ASO and Anti-DNase B antibody titers

Here's Quest Diagnostic's descriptions that you can print out for a doctor: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=265 and http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=256

 

2. Mycoplasma pneumonia Quest info: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34127 or this test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=15498

 

3. Anti-Roseola - couldn't find info on that one.

 

4. Mono - is caused by the Epstein-Bass Virus (EBV). The Quest test is: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6421 The problem with this test is that once you've had the virus, certain markers will show positive for life, so it doesn't prove there's an active infection. 95% of us have had EBV at some point in our lives, so this isn't a great test unless you get a positive on the marker that shows early infection (IgM). So you might be better with this one that looks for DNA of the virus: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34179

 

5. Coxsackie - Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7656

 

6. Lyme - the test Dr T or most any other doctor you might see locally is pretty useless because the widely used test doesn't look for the two markers that are unique to lyme. The lab most of us here have used for Lyme is from Igenex. You may have a hard time getting a doctor to sign the order form, but it can be signed by anyone with who can call themselves DR - a chiropractor, a naturopath (not sure about a dentist). It won't be covered by insurance and is $200 but you can submit your own insurance claim and might get reimbursed at the out-of-network rate (but you'd have to pay up front). Dr T feels Lyme is only present in about 1% of Pandas kids, which anecdotally from the moms on this forum, is simply untrue. At least a third of the parents I've met on the forum have found lyme to be a factor. You may want to list your daughter's symptoms, but if they include brain fog, rages, muscle or joint pain, frequently swollen lymph glands, vision issues or light/sound sensitivity or other things that don't appear on NIMH's list of traditional Pandas symptoms, then Lyme may be worth considering. If you decide to test, the test I'd start with is Basic Panel 4090 http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf and you can find additional info at www.igenex.com

 

7-8 - Thyroid Panel - this will screen for several thyroid measurements. Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7444

For help understanding thyroid tests an symptoms, you can start with www.stopthethyroidmadness.com The owner of the site is a bit angry and definitely has a bias, but it's a good place to get a lot of information from one place.

 

9. Lupus - Some parents have had this test and seen results that were alarming, yet their kids didn't have lupus. Pandas can trigger some of the markers seen in lupus. Personally, I'd only test if your daughter had any lupus symptoms. However, lupus is a serious disease, so depending on your financial and insurance situation, you may decide to test.

 

10. B12/Folate - not sure if this means a blood test to check B12 and folate levels. It's not a bad measurement to have provided you work with a doctor who's willing to do follow-up testing and knows how to treat any abnormal results, which would indicate one roadblock in methylation. The quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7065 If you get an abnormal result, you can post in a new thread and some of us can help you with follow up suggestions.

 

11. Pneumoccocal titers - this tests the immune response to the pneumonia vaccine your child probably received as a toddler. It can be used to see if the immune system responded correctly and if the vaccine provided some immunity. if your child doesn't mount a robust response, then you can re-administer the vaccine, run the titer test a second time and possibly build a case for insurance to pay for IVIG, arguing that your child is immune-deficient. The problem is that it requires re-vaccination, which does carry some risk for a flare with some Pandas kids, particularly if they have some current or chronic infection. For me, this test didn't give particularly helpful info for the cost. But again, depends on your situation. The Quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19564 if your child had the vaccine against 14 pneumonia strains or http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19563 if your child is older and only had the vaccine against 7 strains.

 

I list the Quest links because Quest is a national lab. But you don't have to use them. Labcorp and regional labs would have equivalent tests and you could print these links out and let your doctor order from the lab s/he prefers.

 

If you do end up having to go to a different doctor, they may or may not be willing to order all these tests and you may or may not be able to afford them all at one time, depending on your insurance. So my personal opinion on which ones I'd do first goes like this: 1, 2, 6, 10, 5, 4, 7/8, 3, 9, 11 But I have no medical background and don't mean this as medical advice. Just the opinion of a mom who's spent too much time on this forum.

 

You may want to post your daughter's primary symptoms, her age and how long things haven't been quite right. Sometimes, people can brainstorm and share their own experiences with similar issues. And don't feel bad about diets - we could only survive 9 days of gluten free, GAPS would never fly here either.

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Okay, I've posted below what I read to Dr. T. I've been through the rounds so many times with so many practitioners, I just decided to brainstorm the whole thing and make sure to leave nothing out.

 

Starting one morning in November 2009 our family has been on an involuntary odyssey that began when our daughter literally flipped overnight.

 

Some switch inside her brain flipped. She became obsessive, she refused to wear clothes, her anger turned into vehemence….if she knew profanity, she would have spewed it at us. She called us the most horrible things a 3yo could think of. You…are….so…..mean!!! she would say with cheeks flushed and eyes wide. You are a STUPID STUPID mommy. You are so so so STUPID. I hate you!!!!! Over and over and over. It.was.horrible. Purposely screaming in our ear as loud as she could. We did not know who this was. I went from one day putting her in pigtails to the next day not being able to touch her head. She would scream and rip her clothes. For the first few days, she literally ran around the house totally naked because we could not get clothes on her.

We didn’t know what was going on.

 

Our daughter had never been what would be termed an “easy” child, but I distinctly remember conversations where we talked about how glad we were that she fell within the realm of “normal” – we were grateful for what we had.

 

When this happened in November, it was so sudden, so freaky, so much like the Exorcist, that when we googled her symptoms, we always included “sudden onset”. The one thing that kept coming up was “PANDAS”. There wasn’t a whole lot of info on it, but she seemed to fit the description.

 

I don’t remember any strep in her recent history to this happening. However, I am not the mother who runs her child to the ped for every ailment. Most colds/flus/sore throats, we just treat at home with honey and garlic. I can say that in July of that year (4 months prior), she was exposed to someone who had mono and within a week, she was the sickest she had ever been. She had a high fever for days and was really sick. Again, I don’t usually take her in unless it’s something that lasts for more than 3 days and I don’t feel I can handle at home.

 

I took her to the pediatrician to discuss PANDAS. He said that PANDAS was “controversial” but sent her for a strep blood test, which came back normal. I discussed her behavior and he suggested she was “testing” us (bh issues). He suggested Zoloft. I said I would not give her an SSRI.

 

Since then, we have been thru 2 more pediatricians, 2 naturopaths, 2 homeopaths, a craniosacral therapist, OT, we tried the Feingold diet, GF/DF/SF diet, nothing artificial, and Brainchild Nutritionals vitamin/mineral supplements. Alternately her diagnosis was parasites, a TB maism, too much gluten, etc. An orthodontist wanted to expand her upper pallet because of damage at birth. We even had a chiropractor do TENS units on her back, which sent her over the edge of sanity for exactly one week.

 

My husband always mentions PANDAS, and I always throw it out to the practitioners I have dealt with, but it has never seemed to stick.

 

Some therapies, notably Feingold (no salycilates) and the Brainchild supplements, put her in a better frame of mind for several months each. So much so that I wrote a glowing thank-you letter to the makers of the vitamins for how well she was doing. But invariably, these all end up bandaids that temporarily help an inflamed brain, but the inflammations invariably wins out. Her brain always wants to revert back to imbalance. I can’t even begin to count the thousands of dollars we have spent chasing whatever this is that has possessed our daughter.

 

She doesn’t fit into any of the “autistic” descriptions, because she flips so extremely back and forth. On the surface, in public, she seems like any typical child. Which has also confused us and made it difficult to explain our reality.

 

As she has gotten older, her issues have definitely become more specific, as she has gotten more verbal and able to express herself.

 

Every day, she tells me that she has “bad thoughts” that she cannot control. She asks me to “help her” not think bad thoughts. When she is calm, I ask her why she acts the way she does. She just says very frustratingly, I Don’t KNOW. I have 2 brains. One of my brains tells me to do bad things. She says things like “I want to be mean to myself.” “I’m never going to be happy.” “Why does everything happen to me?” “I hate my life.” “Why did you have me?” She once screamed to me, “I don’t want to BE this way” . When she heard the term “depression” she asked what it was. I told her it was when someone is sad and/or angry a lot and they don’t know why. My 6-yo daughter said, “That’s me.” One night when we were talking in the dark she said, “Don’t give up on me.”

 

We call it “reacting” when we see a flare in her behavior. Sometimes it lasts days, sometimes weeks. She will revert back to a totally uncontrollable being. She is simultaneously repulsed by us and clings to us at the same time. She jumps, hangs, stomps, makes repetitive noises, invades people’s space. She still fights with her clothes – it is nothing to come in a room and see her crying, lying on the floor pulling on some article of clothing that doesn’t “feel right.” She can be unreasonable, blank, untouchable. I look at her and cry and say that you have hurt mommy’s feelings. She looks me square in the eye and will say, “I don’t care.” Her anger is turning more and more on herself. She will hit herself in the head with her fists. She will rip up her own artwork. She stomps on a project she and her dad have worked on for hours. The one phrase we hear from her over and over when we try to correct her behavior is, “I don’t care.” And at that moment, she does not.

 

When she is not reacting, she is a delight. I am told by other parents how well-behaved she is and considerate. She makes me pictures and always writes “I love you” on them. She sticks up for the bullied kids at school. She is very sensitive and easily hurt. When the switch flips, it reminds me of the movie Sybil.

 

We have never been able to isolate exactly what ticks off a reaction, but most definitely it is an “on/off” switch. I wrote a poem about it in which I described her flailing about, drowning, in a body of water and I can’t get to her to help her. I don’t know how to help her. But I have to watch her drown.

 

Quite by accident, both my husband and I noted that each time she has been on an antibiotic (once for an abscessed tooth, twice for sinus infections and a couple times for tick bites from Deer ticks) she calms down. Her reactions are gone. We also note that when we put her on ibuprofen for anything, she seems to calm down.

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If it's any comfort, your story sounded like mine in many ways. Sudden onset changes, passionate rages, temporary improvements, feelings of despair...you'll find lots of parents here that understand what you're going through.

 

My son got sick when he was 5. It was probably triggered by a known tick bite on his scalp that we didn't pay much attention to (something I deeply regret in hindsight). We saw erratic behaviors, extreme anxiety, OCD - but didn't know what to make of it. Then he got better for two months and we shrugged and moved on. Then he got strep and went off a cliff. We asked about Pandas, asked for antibiotics beyond the 10 days prescribed and were told Pandas was controversial and the 10 days would've done the trick if it were Pandas. Then we were offered Prozac, Tenex, Haldol and Risperdal - for a 6 year old! Fired several doctors and pleaded with sympathetic walk-in clinic nurses for 10 days of antibiotics when things got awful. We then spent 3 yrs seeing Pandas experts, using long-term antibiotics, prednisone, tonsillectomy, plasmaphersis, IVIG - all helped but only temporarily. We could get him better but couldn't get him to stay better. A standard western blot lyme test was negative. But we finally used Igenex to test for lyme and that was our missing piece.

 

We started seeing an LLMD (lyme literate MD) and within 3 weeks of using a combination of antibiotics (abx), rather than monotherapy abx (only one abx at a time), we knew we were on the right track. it took 2 more years to get rid of the lyme because he'd had it for so long, but while there were setbacks, we saw progress that he was finally able to sustain. In my son's case it was both lyme and Pandas that we had to treat. He's done with lyme treatment but will still have a Pandas response if he gets a bacterial infection. But we put him on abx at the first signs of symptoms and he's usually back to normal w/in 2 weeks now - a far cry from the old days.

 

Given that your daughter has known deer tick bites, I'd urge you to go to the top of the Pandas/Lyme forum home page and scroll down to the Pinned Thread for Lyme and read thru them, especially the links to articles about lyme testing http://latitudes.org/forums/index.php?showtopic=10804. In lyme literature, you won't see the neuorpsych symptoms discussed much, which makes it seem like your kid can't have lyme. It doesn't seem to match. But the reason Pandas was renamed to PANS a few years ago was because many of us were finding that our kids had Pandas except that the trigger was lyme, or a virus, rather than strep. There's also research showing that lyme and strep share some proteins so that they look like the same invader to a confused immune system. One protein in particular - an M protein - is also present on cells in the Basal Ganglia of the brain (thought to be the target in Pandas and sydenham's chorea) and in cells in the aortic valve (which is what causes the immune system to attack the heart in rheumatic fever)

 

With your daughter's intense rages and chronic struggles and tick bites, I'd put lyme testing at the top of the list. You may want to start a new thread asking for Lyme friendly doctors in the VA/NC area or go to Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi and ask for referrals for a pediatric LLMD in your area. Kids are not adults in little bodies. They require a doctor with a pediatric background - and they are hard to find! You may need to travel farther than you'd like - and most have waiting lists of 3-6 months. None take insurance because they feel they need to spend more time with a patient that insurance will pay for. But you pay out of pocket and then submit your own claim to insurance and sometimes you can get reimbursed at the out-of-network rate. In the meantime, you can try to get a local dr. to order the igenex test for you.

 

You can also try to have the ASO/AntiDNase B titers done, but since your daughter was already negative once, it may not be positive even if she has active strep. Some kids, like my son, don't produce a positive titer test even when you know they have strep (he had a positive throat swab but negative titer test 3 weeks later). Because treatment for chronic lyme is long-term combinations of abx, if strep is a part of the picture, you'd be tackling both infections. But simply treating strep w/one abx wouldn't be sufficient to treat lyme. Some people have also treated successfully with herbs, but the first step would be to see an LLMD and get appropriate testing.

 

One reason your daughter may have temporarily improved on vitamins is that any chronic infection will deplete the body of resources. Vitamins and supplements become really important, but aren't enough in and of themselves to keep the body in a good place. Antibiotics are needed to help the immune system get the job done.

 

It took 5 yrs, but my son is now a very happy, healthy kid. He went from having a teacher think he was autistic and cognitive testing at borderline below normal to someone who's lowest grade is a B+ and is testing above normal. Rages are gone, OCD is gone, life is good. It's a matter of finding that needle in the haystack and getting the right doctor to help you on a long journey. PM me if you'd like to talk offline.

Edited by llm

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You said you emailed Dr. T. Have you tried calling him? I work with Dr. B and I am relentless in calling until someone answers; I don't leave a message, I just keep calling throughout the day until someone answers. Sometimes it takes 3 or 4 days to actually talk to someone. Frustrating, yes, but part of the drill.

 

Maybe I missed it in your posts, but have you taken your child for CBT? Also, if ibuprofen helps your child, why not keep her on it? Especially until you have medical guidance from a doctor. Omega 3's are an excellent antiinflammatory as well.

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I should probably do that (keep calling). I am so deeply in the information-gathering stage and will probably begin that in earnest very soon.



She is on 1000mg of fish oil, and oddly she seems to calm down when she's had a lot of garlic (She loves garlic and has a garlic sauce she likes on things...ewww!)



We have not tried CBT -- thanks for the suggestion.



After 5 years of being determined to solve this thru natural means, then going thru a phase where we just figured she "would grow out of it" and sticking our heads in the sand, I am finally getting the nerve to try to tackle this head on.



I am encouraged by all the help I have received here on the forum, and the hope that is out there. I feel like we are fighting the clock to help her while she is still a child and in our care.


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FWIW, Dr. T now has two assistants in his office, Paul and Mary, and you usually can call and get an answer. They are very nice. I asked if bloodwork had come in, Paul said he would call Quest. He called me back in three minutes and said yes, they were faxing it over. Did I want a consult with Dr T about them? So I scheduled one for early next week when the second round of bloodwork should be back.

Given I went to see him five years ago when he had no support, this is a definite improvement. Apparently, an improvement over last year

Edited by fuelforall

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Yes everyone is right. Keep calling back. Dr T is amazing. He did order a zillion blood test for my daughter. When I brought the list into our pediatrician he thought I was crazy. Especially the Bartonella and lymes. Most of her blood work looked great.

Lymes through lab corp was negative. But the bartonella test was positive.

All through college I worked for an veterinary hospital. The vet I worked for said I should pursue the Bartonella positive test and it can cause psych symptoms. Then we finally got an igenex test and found Lyme.

After that did another phone consult with Dr t. He is so smart. He did tell me it would be a good idea to find a doctor that I understood Lyme disease because it was not his field. In the phone consultation we talked about Bartonella. I told him I had contacted a veterinarian in his area the did research on Bartonella. He was so cool he was open to the idea of Bartonella causing all those symptoms and wanted to contact to the veterinarian to talk to him.

 

If it wasn't for Dr. T we would've never found what was wrong with our daughter and she would never be doing as good as she is today. We did find a llnd natural path to work with.

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So did your daughter have Bartonella? I was just reading up on it and we have had dogs in the house since DD's birth.

 

Is it more prevalent in certain parts of the US? I just read an article on it from NC and we spend a lot of time there, visiting family.

 

She has also had several tick bites, and deer ticks are prevalent where we live. We have done prophylactic abx treatment for the ones that we have found, but there could have been others that we didn't see.

 

It's like finding a needle in a haystack!

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Yes she first tested pos for Bart. Neg for Lyme through lab corp. finally tested through igenex for lyme. She tested positive.

Still under mild natural herbal treatment. Doing great. Most symptoms resolved.

 

If your dd has had several tick bites. I would test using igenex.

Also glaxay labs for Bart testing great

Mary

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