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My daughter was hospitalized last Wednesday night (1 AM Thursday) at Nichols Cottage (part of NY Columbia Presbyterian Hospital).
I’ve been lurking here and had someone post on my behalf to this group, but it’s been sporadic as we’ve been dealing with a crisis situation with her (she’s 10) and our whole family.
She went from a functioning 10 yo in April to having major rages to having OCD symptoms 24/7, to having OCD plus rages and anxiety attacks. Ultimately, the OCD was preventing her from eating, drinking or sleeping despite our family’s best efforts, so we don’t think we had any choice but to hospitalize her.
She has taken 2mg Abilify starting Friday through today. This is the first time she has taken ANY meds.
Her OCD has latched onto me where she “needs” to do rituals with me everytime she talks to or sees me. As soon as I say I won’t participate in OCD’s rituals she starts going into a panic attack. I haven’t seen her at all since Friday and have only talked to her a couple minutes on the phone Saturday & Sunday (which totally consisted of her trying to get me to do a ritual with her).
Are there blood tests we should be requesting (Lyme, Strep, bartonella, etc.)? She has tested negative on a blood test for Strep & Lyme, and had a high ANA titer.
Any help on what I can do to help her (especially since I can’t see her or talk to her – I need to eventually get back in her life)? We were so close before this started.

Thanks,
Valerie

 

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So sorry for what you are going through. I'm sure someone will be on to guide you better than me, but it sounds to me like your child definitely needs some bloodwork done. Strep and mycoP are what we have found and treated for our daughter (so far!) Our daughter has PANDAS/PANS, and it took us YEARS to figure out what was going on, because her symptoms began more subtle. Years and years of docs and psych meds - to no avail. I finally figured out on my own that PANDAS/PANS was what was going on, and found a doc in Chicago who treats. It's been a long road, but antibiotics drew her out of her deep depression and wanting to die. We're still working on her anxiety and OCD, but making some progress after trying a different antibiotic. (That's the tricky part - you can bet she's got an infectious process going on to react like she is - but having a doc do enough testing to find out exactly WHAT is happening, and giving them the appropriate treatment is necessary.

 

I also want to say that most docs don't know anything about this (although they should...) AND don't think because your child might not have had a sore throat or had physical symptoms that she can't have PANDAS/PANS. Our daughter rarely gets physical symptoms for any illness. She gets psychiatric symptoms. More anxiety, more bladder frequency, more depression. She did have lots of strep when she was young, but once her mental issues set in, she rarely appeared "physically" sick.

 

So for us, the right antibiotic (strong dose) has been helpful with the extreme depression and hopelessness, and her mood and anxiety have lessened some, possibly due to Luvox (but it's rather hard to determine what is helping - as I've added quite a few supplements in as well!)

 

Please be patient with her. We didn't realize what was going on and there were so many years I was so angry at our child's "behavior", not realizing she wasn't in control of it and she was absolutely miserable.

 

I hope someone more knowledgeable here can lead you in the right direction.

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I am so sorry thus is happening. I so not have much time to post now but please google my post on western blot to explain why Lyme tests that are called negative are not necessairily negative. It's important to understand the western blot and which bands indicate Lyme. I will pm you some of our doctors and more info as you must be close to where I am in Westchester if you went to Columbia. Are you by any chance close to white plains? My dd9 saw the most amazing CBT therapist who helped her recover from her pans OCD triggered by strep, mycoplasma and Lyme.

Edited by Hopeny
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I had similar issues. I'm not a doctor, but I know I was put on Abilify 2 mg and it was just TERRIBLE. The worst med they ever tried. It caused SEVERE anxiety and akathisia. I think out of all the antipsychotics it has the highest incidence of akathisia. Please don't make any decisions based on my advice, but if you see ANY signs of akathisia, discontinue the Abilify IMMEDIATELY.

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Sorry I just meant to add as well, lupus along with other infections as I understand it can cause psych issues. There is a lupus specialty center at montefiore . To complicate matters lyme can be misdiagnosed as lupus. I recall others on this board have experienced elevated ANA which was not lupus. My DD's level was normal when we tested for it. I has an extremely negative experience with a well known rheumatologist at Columbia who misdiagnosed my daughter so please research whatever they come back with carefully.

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there is now cunnigham's test you can do

http://pandasnetwork.org/testing_outcome/diagnostic-tests/

you may want to try steroids which should suppress inflammation.

abx if you can find someone to prescribe it.

some kids are helped with psych medicine but most comments on this forum seem to be negative

radical change of diet is also something you can try on the logic that reducing infammation reduces PANDAS symptoms.

post specific questions again on this forum

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Thanks so much for everything.

 

She has seen a rheumatologist who ruled out lupus.

 

We are close to White Plains (about 20 min away). She is on the waiting list (3-4 week wait) of Cognitive Behavioral Specialists of Westchester.


We did contact the NIMH (earlier, before she stopped refusing to eat/drink) and they said she wasn't a candidate for their study because she has had some OCD symptoms in the past. She had some for a few months when she was 8 (nowhere NEAR as severe as now) and even more moderate ones when she was 5. In the past we didn't realize that her symptoms may have been OCD, it's only been when we got hit over the head with the symptoms this time that her past behavior became suspicious of OCD. 5 year olds can do lots of unusual things! Only in hindsight does it look like her symptoms may have been OCD instead of just wanting things done in particular ways. She's also always been very strong-willed, so it can be hard to tease out where she has been just opinionated or where it may have been OCD.

 

They did add Zoloft (25mg) yesterday. They started with the Abilify to tone down her rage & fear which they increased to 5mg yesterday.

 

She is on 24 hour surveillance and being monitored very closely for any signs of side effects of the drugs. I cannot tell you how much I hate putting those drugs into her, but I also couldn't let her not eat/drink/sleep (she could sleep when she collapsed, but it was only for a few hours each night).

 

I have been trying to contact a PANDAS/PANS doctor and even have an appointment for her with Dr. Bouboulis in October (I made this appointment a few weeks ago - it was the best I could do), but we couldn't wait anymore once she stopped eating and drinking.

 

I'll have to look up by what you mean by change of diet. We have put her on a dairy-free (actually casein-free), gluten-free diet. She also needs to avoid eggs & strawberries. We also keep her off of artificial colors/flavors & preservatives as well as anything you don't know exactly what it is such as 'natural flavors'. She's been on this diet for 2 years, but, suspiciously, started going off it a bit around January of this year.

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---I'll have to look up by what you mean by change of diet. We have put her on a dairy-free (actually casein-free), gluten-free diet. She also needs to avoid eggs & strawberries. We also keep her off of artificial colors/flavors & preservatives as well as anything you don't know exactly what it is such as 'natural flavors'. She's been on this diet for 2 years, but, suspiciously, started going off it a bit around January of this year.

 

yes, gluten, dairy, sugar is the trinity to start with. give a lot of probiotics at the same time. diet is not going to be a cure but can be a part of it. the goal is to help lower inflammation. some suggest even more restrictions like night-shades, egg whites, beans, and so on.

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So sorry to hear about your daughter. I want to second getting the pandas test from Moleculera, contact Dr. Swedo directly and tell her your child's symptoms. Although she may not be a candidate for Dr Swedo's NIH study, if Dr Swedo has said she will try to help with severe cases, I would very much try to get a hold of her directly.

 

Also - test for Mycoplasma Pneumoniae. Make sure to get one that will give you an absolute value for the IGG result( they test for both IgG and IGM).

And if the IGM is negative, and the IGG is above normal- you need to retest in 7-8 weeks (?) - to see if the IGG is going up, or down, or is the same. Some people don't make the IGM is they have had MycoP for a long time, so retesting is the only way to find out if you child has it. Don't listen to the docs- for whatever reason they have all been taught that IGM is the only indicator if current infection. 3 doctors I asked about this (including a Stanford immunologist) all had to eat crow when we reran this test and they saw my sons IGg going up, even tho IGM was normal.

 

You can probably google Dr Swedos address thro the MIMH site.

 

I wish you the best with getting your daughter the help she needs. I am also the trigger for my so - it's different - no rituals, just rage/obsession- but it's so hard to be responsible for helping them when you can hardly be in the same room.

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Please remember that a negative lyme test does not mean she doesn't have lyme. Her tests should be read by an LLMD not someone who isn't educated in Lyme and Co Infections. Bartonella is a lyme co-infection and causes rages and many other symptoms you are describing. It causes severe neurologic symptoms. She should be evaluated by a top LLMD.

 

Dedee

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So sorry your family is going thru this right now. You are doing the right thing and I am sure you will find some answers soon.

 

Blood work tests (ideas):

 

Viruses (i.e., CMV; HHV-6 etc.)

Mono (EBV virus)

MTHFR (ability to detox)

Thyroid (TSH+T4F+T3Free)

Kidney (BUN/Creatinine)

Liver (AST/ALT)

Vitamin D

WBC/RBC (white/red blood count)

TGF-b1 (inflammation level)

CD-57 (if low indicator of lyme)

C3A (low--indicator of lyme)

C4a (high--indicator of infection)

Lymphs (if high shows high viral load)

 

 

Non-blood work tests:

Hair Test (byDoctor's Data--covered by insurance--heavy metals/vitamin absorbtion)***HUGE***

KPU (byVitamin Diagnostics--urine test)

Parasites (any test recommended by doctor--we just treated for these since they are such a common issue) ***HUGE***

 

Definitely agree with taking a good probiotic and detoxing which you have probably already started.

 

These are just a handful of tests that we have done that showed a lot of what is going on in the body.

 

Best wishes on finding your way through this healing journey.

Edited by JuliaFaith
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Wow! Thank you all so much for the wonderful information. I asked the doctors at Nichols Cottage several times to run some of these additional tests and was told that there was no point as PANDAS has already been ruled out (and the reason given was that we have a family history of anxiety? I don't even remember my husband or I saying that we had a family history of anxiety. Particularly because we don't.... odd.

 

I will try to contact Dr. Swedo again. When we first contacted NIMH we didn't realize how life-threatening the situation was.

 

Again, I cannot thank you all enough. Sorry it has taken me so long to reply. I have been busy advocating for my daughter and trying to make sure she is getting the care that she needs.

 

Do I need to bring her to another doctor to run these tests (other than the ones where specific labs were given)?

 

Dumb question and I know I should know the answer, but what is a top LLMD?

 

Thanks again,

Valerie

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