Advice before I go get shut down by another emergency room

[Plum99]

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Edited September 23, 2016 by SSoda

[MomWithOCDSon]

I'm not debating you in terms of viewing this as an "emergency," but I am dubious as to what a local urgent care, etc. is prepared to do about it. My DS had a "leg dragging" behavior/tic during his sickest period where he would drag his right leg behind him as he walked. I think I told you before, too, that his speech patterns were wildly disrupted around that time, too.

 

If you cannot get in to a doctor who will work with you and, at the least, consider an infectious trigger behind these aberrant behaviors, then, sure, go to an urgent care. I don't know that the odds are very good, but there's always a chance you could run into a nurse practitioner or a young doctor there who's into recent research and/or had some opportunity to see something similar before and will therefore actually help you. I just think you might want to prepare yourself, as well, for a more typical response: your DD has XXX (fill in the blank here with any dx you may have heard before that was an attempt to explain these behaviors), and there's no medical response I can give you for this.

 

Stay strong, and do what you have to do. For good, bad or otherwise, I've always thrown spaghetti at the wall and worked forward from whatever stuck because, like you, sometimes I didn't have any other viable choices. Sometimes it works out, sometimes it doesn't. But I don't know that you have a lot to lose in the meantime.

[Plum99]

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Edited September 23, 2016 by SSoda

[MomWithOCDSon]

No, he dragged his entire leg, and rather than "tingling," he would sometimes complain of pain . . . in his joints, in his shins. I used to get the same thing as a kid, and my mom and dad always referred to it as "growing pains." But all of that resolved with abx -- both behaviors and the pain sensations.

 

Isn't it possible it's not nerve damage she's experiencing but the sort of "tingling" you might feel when your foot falls asleep? So, maybe a circulation problem or the same sensation caused by inflammation somewhere along the nerve line? Do you see any swelling anywhere near or above the area that's "tingling"? If you give her ibuprofen, do those feelings subside?

 

Sorry I'm not of more help.

[Plum99]

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Edited September 23, 2016 by SSoda

[MomWithOCDSon]

Well, because immune function (or dysfunction) tends to have a genetic component, we see a fair number of PANDAS/PANs siblings here on the forum, and I think the evidence that it can impact more than one kid in a family is more than anecdotal. In my case I think it's generational; I think I had PANDAs as a kid, and my kid wound up with it, as well.

 

SSoda, I don't recall what you've posted -- if anything -- in the past regarding what sorts of testing or doctors (beyond a neurologist, I think?) you've seen, but I would try and get to a PANDAs-knowledgeable doc, in your shoes. Because your kids sound a little "complicated," the immune part of the puzzle is likely to go over the heads of less-knowledgeable docs in favor of them relying upon the easier "labels," if you will. Most of the PANDAs docs will order a full immune panel which can identify dysfunction there, if any, and will explain some inflammatory responses, also. Many PANDAS docs also prescribe a short course of steroids, both as a treatment option and a diagnostic method; if the kid's behaviors improve as a result of the steroids, that's taken as additional evidence that inflammation is at least in part behind the behavior sets.

 

If Motrin works for your DD, I would go ahead and give it and see if it continues to help in the meantime.

[Plum99]

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Edited September 23, 2016 by SSoda

[Gpookie]

In our case, behavioral symptoms are drastically reduced or resolved within a half hour of administering Motrin.

 

Ok, sorry to keep asking these maybe obvious questions. When Motrin helps kids with Pans or Pandas, are you seeing it help with all symptoms, like language? I'm definitely not. I am seeing what I think is pain being relieved, but she is still talking the same way, freaking out about a drop of water dripping on her, holding her hands over her ears curled up in a ball. Do you all see behavioral symptoms get better with Motrin too? I hate to keep being fixated on the permanence of everything. I'm just so scared, I can't stop obsessing over trying to understand what's going on.

[MomWithOCDSon]

SSoda -- No, I'm not trying to suggest that the behaviors will evaporate or correct, even over time, with just ibuprofen. What I am suggesting is that if inflammation (as a result of either infection or immune dysfunction or potentially both) is at play, the ibuprofen can help to some extent put the inflammation in check, and you may see some behavioral improvements as a result.

 

That being said, it is likely that any lasting improvements, or a trajectory of improved behaviors, won't be evident until you get some additional interventions (abx, steroids, etc.). At least that was our experience.

[Gpookie]

I agree with MomWithOCDson. Apologies for my brevity in my prior post, but she says it best. Inflammation is usually the culprit with my kids, though the inflammation is triggered differently in them...That's why the Motrin works for us...

[Plum99]

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Edited September 23, 2016 by SSoda

[Sirena]

Hey SSoda, if antibiotics seemed to make things worse then maybe they were actually working and u were seeing a herx, for us ibuprophen takes edge off.

[Plum99]

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Edited September 23, 2016 by SSoda

[wisdom_seeker]

Hi Ssoda,

 

Herx reactions are essentially temporary "die-off" reactions, and though they can be miserable, they are a sign that an antibiotic is working, killing off bacteria. The symptoms are caused by toxins released when antibiotics cause some bacteria to die off quickly. So a child may look / act worse before they get better. But I don't remember which bacteria tend to cause them, how quickly the reactions set in, what things (like Motrin) can relieve the intensity, and how long they last. However, the fact that a child can get worse on an antibiotic often makes parents stop / swittch the antibiotic, when in fact it was the right one.

 

I think we may have encountered that back when DS first had bad effects, when he started having severe muscle pains, irritability, and skin hypersensitivities within a few days of starting one antibiotic (omnicef?). We assumed it was an allergy, and so, even though DS's sinus infection was rapidly getting better, we switched to something else (augmentin?). The main thing that accomplished is that the sinus infection almost stopped improving, but the other symptoms continued. Turns out that those symptoms can also (rarely) be strep symptoms. And may have been the start of his PANS. But we didn't know. And I still don't.

 

So I'll only respond to the parts I know a bit about.

 

All the behavioral things you describe are common with PANS, including the sudden refusal to eat many things (that's classic), intense fears about things, meltdowns, and behavioral and speech regression. So I think that perhaps those started despite the antibiotics, not because of them.

 

What about the uti? Was it culture-confirmed, or is it that she keeps running to pee frequently? If culture-confirmed, what is the bacterium they found, and what drugs was it sensitive to? Do you have any idea if she has any other infections (perianal? throat? ear? )

 

I don't understand the foot dragging. It can be OCD, or a coordination or pain problem, or ??. However redness in the joints makes me think post-strep rheumatic fever, which would certainly be worth investigating -- though probably not in the ER.

 

The continuing rash and peeling puzzle me too. The good news is that many such rashes are distinctive, and that might be a clue to what else is going on. What have your doctors said about that? And can you describe it? Is the rash flat or raised, tiny bumpy, or big red blotches? all over? Is it itchy? (possibly that's what she means?) Does it change?

 

It is possible to have multiple problems that start close together in time, but I'd first try to find a single explanation for all her symptoms. I didn't read your other posts. What did her Cunningham Panel show, and how soon after she first started having symptosm did you do it?

[Wombat140]

This is only tangentially relevant, but people who take too much vitamin B6 (we're talking really high doses, like 50 mg per day or more in adults) occasionally get that symptom of "pins and needles" in hands and feet, and if you stop taking the B6 and it hasn't been going on for too long it will resolve itself. (There's actually a technical name for that symptom - it's called peripheral neuropathy). I'm not saying this is anything to do with B6, but that shows that those symptoms don't always mean permanent nerve damage, they can happen even when the problem is only something that's temporary.

 

Incidentally, it can also be a symptom of deficiency of B6, so maybe it might be worth trying your daughter with some B6 to see if it helps with the "tickling"? (That doesn't rule out PANS being the cause. Nerve processes actually use up B vitamins and all kinds of things that make the nervous system work harder, e.g. anxiety, can deplete B vitamins, so it's possible that the PANS making her nervous system jump through hoops is taking up all her B6 supplies and that's what causes the "tickling".)