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PANS?


Hayley
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My almost 7 year old daughter started presenting odd symptoms a little over a month ago. She has always been extremely smart, social, and generally adaptable, though she has had some mild sensory/anxiety issues and big tantrums (though never violent) starting at age 4 and subsiding for the most part in the past year. Despite any prior challenges (and the several months prior to the onset were completely FREE of challenges), what we began seeing in early July was very uncharacteristic of her history When someone brought PANDAS to our attention, both my husband and I felt that the descriptions of onset and experiences resonated. Still, her bloodwork is not supporting our theory.

 

Her symptoms include:

 

o rage-filled tantrums (hitting, biting, kicking, throwing things -- she has NEVER done this before)-- she has said "it's not me being bad, I can't help it! My body is doing it!"

o A defiant attitude, saying “no” adamantly to things that she never would have disputed before.

o Unreasonableness when she doesn’t get her own way and rigidity around changes in plans/transitions (this was never something she had trouble with in the past)

o Heightened sensitivity to smell

o Excessive thirst, drinking TONS of water all the time

o OCD-like Sensory reaction to clothing (something she experienced before mildly in the form of wanting tags cut out of clothing or not liking low-cut shirts) got exponentially worse, wanting turtle necks, layering and complaining (sometimes going into fits) after going to the bathroom because she says her underwear was wet even when it isn’t. She is no longer complaining about the wet underwear over the past week as long as she wears a bathingsuit bottom instead of (or under) her underwear, but she still insists on layers, high collars and is particularly obstinant about what she is wearing to bed.

o Difficulty going to sleep: begging me to sleep with her and/or throwing tantrums at bedtime

o Seems to have a change in appetite – very picky, says things taste bad that she has always eaten.

o Chewing on clothing, hair, toys

o New fears (a month after being at another beach and holding sand crabs in her palm, freaking out over crab shells on the beach)

o Hyperactivity at times

o Suddenly talking like a baby: lisp/dropping her "r"s, immature behavior

 

 

We are in Maryland and are tyring to get in to see Dr. Latimer, but she can't see us until late October. Meantime, we have seen two other neurologists. The frst basically dismisses the PANDAS "Label" as she calls it and wants to put her on Zoloft. The second has been helpful and ordered a very detailed panel of bloodwork. All tests came back normal. There is no history of strep (literally she has NEVER in her life tested positive for strep despite having multiple exposures and huge tonsils up to age 5.). She was diagnosed with coxsackie virus (which she has had several times in her life) the week after her current symptoms materialized.

 

Nonehtless, she started Azithromycin (625 ML 1x per day; 5 days on, five days off, five on) 8/7. We felt like she was somewhat improved several days into the antibiotic, but not dramatic. Not as many complaints about smells, generally more "herself", but has continued to have tantrums/rage issues daily, usually in the evening (seems exacerbated when she is tired or hungry), and obsess about clothing. The eighth-ninth day of this regimen (3nd-4th day not taking Azithromycin) she was very much improved with NO tantrums/rage. The fifth day off the Azithromycin in the evening she had one of her worst tantrums to date and was very difficult to calm down. We resumed the meds for the next five days on in the AM instead of the PM on the 11th day thinking that this may have made a difference. She has seemed to improve again though the clothing is still an issue and we did have a meltdown tonight, though she seemed to be more responsive to reason.

 

Anyone have any thoughts on whether or not this sounds like PANS? Can you have PANS with normal titers and blood results? Any recommendations re: continuing/increasing/switching out the antibiotic?

 

Given we don't have evidence of strep, we do want to get her in to see a psychiatrist in case medication for the OCD stuff is needed. Assuming our situation sounds like it might possibly be PANS, does anyone know of someone who understands PANDAS/PANS in the DC metro area, preferably maryland?

 

 

Thank you for any advice, referrals or shared experiences!

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Oh, these symptoms all sound so familiar. Remember, PANS can be triggered by many illnesses, not just strep. The fact that you know of at least one active virus that appeared that the same time of this episode points to PANS. You don't need strep to have PANS.

 

I find it interesting that your daughter has had cosackies multiple times. Most kids get it only once and then have immunity (tho my DS has had it twice). You may want to run a viral panel to check for epstein barr and HHV-6.

 

There are other illnesses that come "overnight" beyond strep and even beyond viruses. You can be bitten by a tick and then "all of a sudden" have your world change. You can catch mycoplasma pneumonia and develop symptoms overnight. So I wouldn't drive yourself crazy looking for strep or dismissing PANS just because her bloodwork is "normal".

 

You may want to consider an integrative doctor who understands infections. I know of aome lyme doctors in your area who would look for multiple infections. Some parents embrace using an LLMD (lyme literate MD) and others feel that these docs will automatically give you a lyme label. That hasn't been my experience but I respect why some might be reluctant to use an LLMD. There are several parents from the DC area, so I'll leave it to them to give you specific names. But I would certainly encourage you to pursue PANS.

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Our dd presented very similar. We found active Myco P. she does have a history of multiple strep and ear infections, though. Strep titers normal range. Found IgG positive for Lyme. We are heading to Dr. Murphy abx study this week. Hope to get some answers.

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My dd (now 9- 5 at the time) presented exactly as you describe. Underwear always "wet", tantrums, MAJOR clothing issues, MAJOR food issues (hungry but nothing tasted good/ was appealing), MAJOR fears, not wanting to sleep alone (putting it mildly) and baby talking.

 

This all snowballed over a couple of weeks, and we were lucky enough to have a throat culture (quick test was negative) because we got clued in to pandas, and it was positive. (however, many people are not "lucky" enough to swab so soon, therefore theoretically missing the strep infection- which may resolve on its own).

 

There are NO blood tests at this point that can confirm or deny pandas. Your doctor may have done strep titer tests, which are (basically) useless if they are negative, as something like 30% of the normal population does not mount titers to strep. My daughters BOTH had culture positive strep, and never a raise in titers. The only real "proof" of pandas may lie in a positive response to treatment.

 

We see Dr Latimer- she is wonderful! Since you are close- I would call to get put on her cancellation list, and I would probably call every Mon or Tues to check in to see if there has been a cancellation. They are wonderful, but it is necessary to be kindly persistent!

 

In the meantime- keep her on the zithromax! It took my daughter (initially) about 30 to 45 days of full strength antibiotics- but at the end of that course she was 100%.

 

Dr Latimer will be a wonderful doctor and guide for you and your family. We kept my daughter (actually both- in the end they were both diagnosed with pandas- sibling rate is high) on full strength antibiotics for almost two years. We have since taken them off antibiotics and only use them in times of pandas flare ups. Both of my girls had plasma pheresis (miracles for us) and we use steroids several times per year. Therapy (specifically ERP- exposure and response prevention has been a lifesaver and a key part in recovery). We love the therapists at USF, however I did have one that I liked enough when I lived in NW DC, so if you are anywhere near Chevy Chase- I will pm you a recommendation. Also, although my ped in Bethesda completely missed the boat on pandas, they are more open to it now, and maybe would give you a month of antibiotics to hold you over until your appt with Latimer. Again pm me if you are in that part of md (they are NOT worth traveling for).

 

The first year was (for us) the hardest. It is VERY difficult to "lose" your child, and watch them suffer so. However, the wonderful thing is that they get better. And, although I would not wish pandas on my worst enemy- hopefully there is a silver lining that they end up stronger, more self aware, and more compassionate.

 

Both of my girls are living ocd free for about 90% of the time now, and they are blossoming academically and socially. Peace has been restored in my house! Things will get better.

 

Oh and in the meantime- the book "What to do when your brain gets stuck, a child's guide to overcoming ocd" is a GREAT workbook for your daughter and you to learn about ocd (and how to work on it).

 

Good luck!

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Thanks to all who responded. She was tested for Lyme and that came back negative, but my understanding is that even Lyme blood tests are inaccurate at times so I would be interesed in speaking to a Lyme specialist. She also tested negative for Mycoplasma.

 

LLM, you said your daughter was on azithromycin for 30 days before she was better. Was the gains between starting the meds and completing the course notable or slow and gradual? I'm trying to figure out if we should stay the course with this or try augmentin or something else since, while we think we see some progress, it's not dramatic.

 

This board is very helpful. So glad we found it! Thanks again, all!

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Some pandas kids with extensive strep histories do not have a rise in titers. My daughter had strep for nearly 6 months and had 2 titer tests during that time. Numbers were not reflective of the strep that was positive on rapid and cultures for those months. She also had Epstein Barr which came simultaneously with the strep and started the tics. it can be many other infections. It's clinical presentation of symtoms and your daughter sounds like she may have it. It's too little abx. Ask your pediatriician for a higher dose, and do not go off until she sees dr. L. Definitely the schedule of 5 days off is not recommended during abx. Trial.

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i too am in the DC area and waiting on an October appointment with Dr. L for my DD; my DS already is a patient. For various reasons, I feel that I cannot wait that long for a better dx, so we are going next week to NJ to see Dr. T, with whom it is easier to book an appointment. Over the long run, though, we will stick with Dr. L--she is wonderful and is close by. From this forum I have learned that many parents consult with more than one PANDAS/PANS specialist and nobody takes offence. I agree with doing azithromycin full time. I am pm'ing you with the name of a pediatrician in case yours is not on board with this, together with another suggestion MDmo sent me.

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My DS's symptoms were very similar to your daughters. He has never tested positive for strep or any other thing. The rages and severe separation anxiety were the worst! He was 5.5 when this started. Today he is 8.5 and no rages or separation anxiety. He's been treated for PANDAS for nearly 2 years now. He was diagnosed by Dr T and then subsequently that was reconfirmed by Dr K, who we see currently.

 

Never heard of that type of pulsing. DS was put on azith 2x weekly for prophylactic dosing but that did not work for him. He must take daily abx at this point.

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I didnt read every response. BUT my son had COMPLETELY NORMAL blood work. Not one thing out or range. According to the NIH 33% of kids do not have elevated aso antidnase b etc. Your child could be one of those.

 

The NIH is still looking for 7 more PANDAS children that are relatively new so I would call them. You dont need the diagnosis to be accepted. They actually diagnosed my son and its been a godsend. No one questions it.

 

It was the best decision I ever made. I thought my son didnt qualify but I called anyway. He DID qualify. If you get accepted it doesnt cost a dime lodging, travel etc. If you needmore detail feel free to pm me. Several on thisboard have done it.

 

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

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I an thinking of calling the study for my 4 yo. how do I get the strep titers done? the only piece I missing is strep proof.

we have a dr l new pt appt in the end of nov, but my little one is worsening!

will nih trial talk to us without titers drawn?

we live close to nih, so it would be easy to go there.

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Unfortunately, I don't cannot answer any of your questions. Our dd8 presented with much the same symptoms and we were turned down by Yale study. Their reason was not enough classical OCD symptoms. We are in a limbo, doctors who treat PANDAS/PANS don't consider our dd a bad enough case and most other doctors would treat her only if she her labs are not normal. I am not sure what our options are and would, actually, ask you to let us on the forum know what you have done. best wishes

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