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Now or Later? Testing, Appointments, ABs


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My Dr. is ordering all of the tests that Dr. K recommended. DD will be having them done today.

 

DD hasn't been sick since Sunday and only showed her eye rolling a few times on Monday night and Tuesday morning. None have been noticed since.

 

Dr. K cannot get me in until March 9th.

 

Still waiting to hear from a Dr. at Children's so I can find out about her PANDAS experience (she is covered completely by insurance and is closer to us).

 

I have some questions:

 

Will the tests still be accurate since so much time has gone by since her being sick? Should I wait until the next time it happens IF (hoping) it happens?

 

Should I wait to see if her possible PANDAS symptom returns before going to a specialist? My husband thinks that there is really nothing for a Dr to SEE right now and that we could be wasting our time. He suggested we wait to see if it even happens again...to keep an eye on her the next few days since we really havent been noticing anything the last 2 days.

 

Also, since she really hasnt been showing symptoms other than a handful during those 12 hours...should I push for AB right now??

 

Thanks everyone.

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I recommend that you keep the appointment with Dr. K. Do not worry about the results of the tests, as the doctor is looking for indications of past or present infection, but will not depend on this alone for diagnosis of PANS. If the tests show something, that will help the doctors' case, but again, it is not the only criteria. Once you and your daughter have met with Dr. K, you can correspond with him fairly easily by email to keep him updated on her symptoms as they come and go. Although we all of course pray for you that this episode was the only one she will have, if she does indeed have PANS, she will likely have additional episodes of symptoms eventually, and you are best off getting a specialist on board now, rather than waiting.

 

As others have posted on your previous threads, it is probably best to insist on the abx now regardless of a current infection. There is little or no risk to this (make sure she takes a good probiotic also, several hours apart from the abx), and it will keep things under control until you see Dr. K and he recommends further treatment protocol, if any.

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I am just very overwhelmed and confused. I get what you are saying, truly.

 

But here is what I have in my head -

 

DD had an episode of eye rolling shortly after strep in October. Lasted about 2 or so months and went away after 2nd round of ABs gradually. (was it the ABs? I don't know)

 

That was her only symptom.

 

She was sick for 2 1/2 days. After which she had about 5-10 eye rolls total in a 12 hour period. None have been noticed since and she is displaying no other symptoms.

 

What is a Dr. going to SEE when I take her to him? There is nothing there (again knocking on wood) to see.

 

Why beg for a medicine (and I will have to beg...she may even say no quite likely) for something that may not even be there?

 

Would it hurt to wait a few days and see if this was even really a flare up?

 

I am not arguing or doubting. I am just really confused. And my husband is really of the belief that we should wait and see what happens, if anything happens.

 

When I first came here I was told not to freak out because the kids who did well or got better...usually their parents arent still posting here. That most here have been of the severe cases. But now I feel I am being told that this will likely get worse and I am in for a world of ****. What do I believe??

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I didn't realize your child had already been treated w/ abx soon after initial symptoms. I was talking about untreated PANS. My DS had the typical overnight appearance of symptoms and they were quite intense but they remitted w/out treatment in two months. The second round, a few months later, was even worse than the first.

 

Not all of us still here have kids who are severe. I wouldn't call my DS severe at all, right now. He appears to be stable and very functional w/ a few symptoms. When he is exposed to strep, he has flares. Since he is on prophylactic abx after IVIG, the flares are nothing like the untreated exacerbations were. When he flares, he is treated w/ treatment dose abx, then back to prophylactic.

 

I don't know if your child will get worse or not. I don't know if your child has PANS or not. I do know that when my DS's came back, it was worse than the original. He suffered a lot.

 

You'll have to make decisions based on your child and their symptoms. We're just offering you our experiences.

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Please please please dont think I am being argumentative or rude. It is hard to tell my tone through the typed word. I am just trying to figure this all out.

 

She was sick in October...I was able to catch it before any PANDAS sx were shown (because I am a paranoid mom and take her to the Dr probably more than most people). She had one round of AB for the postitive strep. When that round was done, that is when the eye rolling started. I researched and waited a couple weeks with nothing getting better or worse. Just eye rolling (which DID scare me A LOT). I took her in...but they never heard of PANDAS. I gave them paperwork and asked for a second round of AB. After that second round, she gradually got better and it hadn't been seen since. (and it was never seen before that ordeal either)

 

Fast forward to last week. She got sick again. Pretty minor symptoms (stomach issues). Was better by Sunday. Monday night and Tuesday morning we (me and her teacher) noticed a handful of the same eye rolls. But none of us have noticed any since Tuesday morning. Also, no other symptoms and she is being totally normal. No ABs this time...only started her on Natural Calm.

 

So this is why I am so questionable. That first episode in October has PANDAS written all over it from what I have read. But since then, no real issues to be super concerned about. That is why I was thinking of giving it the weekend to see if I notice any more eye rolls. If so, go through with finding a specialist or simply keep my appt with Dr. K.

 

I will get her tests done today so we have something to look at and maybe even my own Doc can spot any abnormalities.

 

I am so sorry if I came of angry. I am not. I am just getting it from all ends and am very confused and all the meanwhile trying to keep a lid on my own anxieties.

 

Thank you all so very much for putting up with me!!!!!

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It doesn't hurt to get labs drawn now.

 

For example, even if your dd's ASO/ anti-dnase b (strep titers) are normal NOW...it maybe be useful information in the future if she has another episode where you aren't able to culture strep. If you then get another set of titers (with a future episode), and you see that titers are RISING, that would be helpful information.

 

Also, remember that there isn't really a single "test" for PANDAS. The lab stuff are all just pieces of a puzzle. The fact that your dd tics more with illness, and gets better (tic-wise) with antibiotics are really important clues.

 

If your dd is ticcing with a non-strep illness, that is completely consistent with PANDAS/PANS as well. Strep isn't the only trigger.

 

The good thing is that you are 10 steps ahead of the rest of us were when we were in the "mild stage". I didn't even know about PANDAS when my dd was mild (ages 4-7). She had mild stuff for years. Our PANDAS dd doesn't get a sore throat when she gets strep. Our ped NEVER cultured her when she came in with a FEVER (probably strep). Any fever (or vomiting) was presumed viral. In fact neither of my dd's EVER had a strep throat culture until we demanded them when we learned of PANDAS (in 2008, when my dd was severe)...and both were positive on the cultures! My guess, is that if we KNEW about PANDAS when she was 4, and was able to diagnose and treat her strep infections, she would never have become full-blown and landed in the hospital for 6 days, she wouldn't have needed long term antibiotics, and she wouldn't have needed 3 HD IVIG's.

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some other suggestions:

 

1) be hypervigilent of strep. Don't assume just b/c a sibling doesn't show signs of strep, that they aren't a carrier (culture positive). Our PANDAS dd reacts if her sister is positive.

 

2) Get follow-up cultures 3-4 weeks after treating with antibiotics to make sure any strep infection really clears. Many PANDAS kids have problems with strep not clearing on the first round of antibiotics (esp. if Amoxcillin is used).

 

3) don't forget to take videos of when your dd has symptoms, to show docs at a later date if needed

 

4) be familiar with other PANDAS symptoms (aside from tics) so you can watch out for those

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EAmom - Thank you!!

 

She has one sister (who is only here on the weekends) and she has not had strep ever. We assumed that was because she had her tonsils and adnoids removed as a very young child (she is 12 now) because of snoring. But I will keep an eye out for sure!!

 

During that episode I DO believe it was amoxcillin as the first choice and augmenten as the second.

 

The video I have (posted in my first post here) is her at her absolute worst during that episode in October. I am so glad I was able to catch that. Will be sure to do the same if it happens again.

 

As far as strep being the trigger - what is weird is she doesnt seem to get a sore throat really. She gets stomach issues from strep. Something I never knew before was possible. I was very surprised the last time when she tested positive for strep. The rapid came back neg and they called me 3 days later to say it was pos. By that time...she had NO ill symptoms at all!! The doc did NOT order a throat culture for today. Should I ask for one or are the blood tests enough?

 

 

Thank you again!!!

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I would keep that appt (March 9th is still a few weeks away). do you have video to show him? If not, it is ok- don't fret. We do not see Dr K- but I think he will take your word on it and I do not think he will recommend anything inappropriate based on your child's severity or lack of, at this point.

I will say that I hope you can wipe PANDAS from your memory and it never, never, never is an issue again for your family-- but it is much easier to deal with any recurrence and increase in symptoms when you are already established with a PANDAS doc! I would see any doc you can and get yourself established with docs that might be able to help you if you need it - whether Dr K or whoever and a local neuro/ped.

 

Also, EAmom gave you good advice--all of it really-- but especially to watch out for other symptoms that maybe related.

The urinary & eating symptoms could easily get passed off as something and the thought "my kid loves me soooo much they do not want to leave me!"-- might really be separation anxiety! That is what I thought until I realized at 11 years old, it was a new symptom, and she cried every time I even went to the grocery store! Big time separation anxiety developed out of the blue.

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especially to watch out for other symptoms that maybe related.

The urinary & eating symptoms could easily get passed off as something and the thought "my kid loves me soooo much they do not want to leave me!"-- might really be separation anxiety! That is what I thought until I realized at 11 years old, it was a new symptom, and she cried every time I even went to the grocery store! Big time separation anxiety developed out of the blue.

 

Yup..also an increase in tantrums and defiant/difficult behavior were other early symptoms for us. That kind of stuff gets easily written off as other things like "bad parenting".

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I agree with all above - better safe than sorry. Mild, transient tics are very common after strep - but if your child is getting frequent strep, it is likely she is not clearing it, and that something is interferring with her bodies ability to clear it. So in addtition to above recommendations on followup testing and hyper vigilance, I'd ask for some immune testing and CDC and vit D levels. And maybe start her on some vit D if that is in low-ish range.

 

Most probably - it is nothing. But you also need to ask yourself if she has any other ODD behaviors. Things that are a little "off" - use your mommy - gut -most kids will try to hide these things. Even adversion to certain foods, colors, things, words, or noises. Let me give you an example:our 10 year old started with bickering with his sister at the table over manners - talking with food in mouth, any slurrping, just being "annoyed" during dinner - which was weird. Finally, just to get some peace at dinner, I had him eat at the island facing away from us, stated playing music...finially just put him in a different room during dinner. Its a type of OCD "intrusive thoughts" he couldn't get the though of me (a little latter if became exclusively focused on me) out of his head. He didn't tell us about that for months because he new it was "weird". AND to make it even harder - they may be things that they only do when they are alone or in a specific cercumstance that you are unable to observe. At one point my son had a compulsion to look into the sun. He only did it a baseball - and if you were watching the game, and not just him then you would never know he was doing it because he did it very fast and only when they were between plays. I don't know how long he did it before he told me about it - which he only did because he was petrified he would go blind.

 

Here is a more in depth descrition of the other things to look for:

 

Anxiety: The anxiety may be manifest as de novo or suddenly exacerbated separation anxiety, generalized anxiety, irrational fears or worries, or a specific phobia. Early in the course of illness, the child may appear “terror stricken”, hyper-alert and excessively vigilant, as if confronted by a constant threat of imminent danger. Over the course of a several days to a few weeks, the apparent panic may subside to a state of generalized anxiety, which might present with repeated requests for reassurance that the child didn’t do something wrong or that he’s safe. Children with separation anxiety may seek physical proximity, as well as reassurance about their safety. As the name implies, separation fears typically are focused on the health and safety of one or more loved ones, but in rare cases, they center on concerns about being parted from an inanimate object, such as a piece of furniture or a room in their home. The separation anxiety may become so severe that the child will insist on sleeping between his parents or staying within reach of his mother, even when she uses the restroom.

Emotional lability and depression : Emotionally labile children experience sudden and unexpected changes in mood states, often shifting from laughter to tears without obvious precipitant. The children may complain that they have an inner sense of restlessness and agitation, which is similarly unprecipitated and inexplicable. Some children may experience the abrupt onset of a clinical depression, which can become severe enough to be accompanied by suicidal ideation. Self-injurious behaviors and suicidal ideation are also common and are of particular concern among children with concomitant impulsivity and behavioral regression, as they may cause themselves serious injury.

Aggression, irritability and oppositional behaviors: These symptoms often top the list of parental concerns because they are so disruptive. The irritability and oppositional behaviors are present throughout the day and the aggression occurs without provocation or precipitant. Most notable is the striking contrast between these new behaviors and the child’s usual state of being “sweet-tempered and well-behaved” or “easy-going and well-liked”.

Outbursts occurring in response to interruption of an obsessional thought or compulsive ritual should not be counted as a manifestation of this category, as they are an expected occurrence among pediatric patients with severe OCD.

Behavioral (developmental) regression: The symptoms of developmental regression include an abrupt increase in temper tantrums, loss of age-appropriate language (sometimes to the point of the child using “baby talk”), and other behaviors inappropriate to the child’s chronological age and previous stage of development. The developmental regression may be most apparent in the child’s school assignments or artwork, as shown in Figure 2.

Sudden deterioration in school performance or learning abilities:

A number of factors may contribute to the child’s academic difficulties, including among others, a shortened attention span, difficulties with concentration or memorization, specific losses of math skills or visuospatial skills, and other disturbances of cognition or executive functioning. As with the other categories, the academic difficulties must represent a distinct change from previous levels of functioning that occurs at the time of the onset of OCD symptoms. Thus, chronic manifestations of attention deficit hyperactivity disorder (ADHD) or a learning disability are not counted here, nor are the visuospatial and fine motor skill deficits that are commonplace in chronic tic disorders and classical childhood-onset OCD [49,50].

Sensory and motor abnormalities: The sensory abnormalities may include a sudden increase in sensitivity to light, noises, smells, tastes or textures of foods or items of clothing; or conversely, sensory seeking behaviors, such as needing to touch or feel particular objects or textures. Visual hallucinations may also occur and might include frightening images and perceptions that objects are floating or that they’re larger or smaller than actual size. The visual hallucinations are usually brief and only mildly disturbing, but in severe cases, may be quite frightening and persistent, lasting for several hours or longer.

Motor abnormalities occurring in PANS include a variety of signs and symptoms, such as an abrupt deterioration of the child’s handwriting (dysgraphia), clumsiness, motor hyperactivity, tics and choreiform movements. Dysgraphia is a particularly useful diagnostic feature, as handwriting samples obtained during the child’s acute illness can be compared against those produced during an asymptomatic period to document the motor changes, (see Figure 3) or even to identify precipitating infections by comparing longitudinally collected handwriting samples with infections documented in the child’s medical record [51]. Choreiform movements must be distinguished from the choreatic movements of Sydenham chorea. While chorea is characterized by jerky or writhing, arrhythmic involuntary movements of the extremities, trunk and facial muscles, choreiform movements are described as “fine, piano-playing movements of the fingers” that are present only when the child maintains stressed postures such as a Romberg stance [52].

Somatic signs and symptoms: Sleep problems and disturbances of urination and micturation are among the most common physical manifestations of PANS. The sleep disturbances may include not

only the new onset of terrifying nightmares and night terrors, but also difficulties falling asleep, staying asleep or waking up too early (early, middle or terminal insomnia). To avoid double-counting sleep disturbances, it is important to ensure that they’re not a manifestation of an anxiety disorder.

Urinary symptoms are often the presenting complaint for children with PANDAS. A pediatric clinic-based case series reported that 7 of 12 PANDAS patients initially presented with urinary symptoms, including the new onset of night-time bedwetting (secondary enuresis), daytime urinary frequency, and an urgency to void, without evidence of urinary tract infection [53]. Subsequent experience has confirmed that urinary symptoms occur frequently during recurrences, as well as at the onset of symptoms. The symptoms are occasionally related to obsessional concerns with toileting or contamination fears, but for most children, no cognitive or emotional explanation can be found.

 

Best of luck - Dr K is exceptional and will be sure to alay you fears , or to get you the proper pandas treatment immediately. You are in good hands.

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