Newbie with a question on what to ask for (testing)

[dandilion44]

Hi All - I just joined and have been looking around on this forum...so much great information! My dd (age 4) has had a rough couple of months. Started with behavioral changes (defiance, extreme moodiness, anger, aggression) and around the same time began having "toileting issues." She has had more accidents than she ever did in the past and most concerning she has been obsessing about wiping. She says she still feels wet, returns to the bathroom to wipe more, complains her underwear are wet (when I inspect them, they are completely dry), etc.

 

I took her in last week and they tested her urine and it came back fine. I ended up taking her in a few days later for a possible ear infection...ped said it was pink and prescribed antibiotics. Well, since I don't like to give antibiotics, I held off for a few days and today she was obviously feeling better (fewer complaints of ear pain, no fever).

 

So, she was prescribed Amoxicillin for her ear infection. I haven't given it to her...but if I did, would this be a decent test to see if would help her wiping issues (ie, would we possibly see wiping issues decrease if she carried strep)? Or, should I bring her in to see if her ped would order a blood test for strep? I'm guessing he will think I'm crazy but I'm willing to try...just not sure if there is a better route to take? Or, am I crazy thinking that this is really an issue...perhaps this is all developmental?

 

FWIW, she has been fairly healthy, colds here and there, several ear infections but not all have required antibiotics. She did have 3 separate outbreaks of impetigo about 1.5 years ago but nothing since then.

 

Thanks all for any advice you can give...I appreciate it!

 

[Dedee]

Ok, I am going to step out on a limb here.....I am not in any way intending offence....Just wondering why would you take her to the doctor but then not treat her? Please understand that I am a nurse so we see things differently. Also, I am not in any way afraid of antibioitcs so that is just a difference in perspective. So I am assuming from your post and the symptoms you describe that you suspect your daughter has PANDAS / PANS and you are considering trying the amoxicillin to see if it helps her symptoms? Do you know if your daughter has ever had strep? Did she have an illness you can remember prior to her symptoms starting several months ago? Even if you can't remember an illness related to her symptoms starting doesn't mean she doesn't have PANDAS / PANS. Sometimes it just helps with the timeline. The only issue I see with you trying the Amoxicillin as a "trial" to see if it helps her symptoms is that if it doesn't help then it isn't a definitive rule out. She could have PANS from an infectious trigger such as Mycoplasma or lyme that would not respond to amoxicillin. If her infectious trigger is strep it may possibly help her symptoms. I know several strep responders that don't get resolution on amoxicillin though. So in my opinion, you could try it and if it helps then I think you could say she has high probability for PANS but if it doesn't help you still can't rule out PANS. Is that too confusing?

 

Now, just from my personal experience from girls with PANS, her symptoms are very similiar to what I have experienced with my daughter in her early years before she was officially diagnosed. I would suggest you look into finding a PANDAS / PANS specialist and making an appointment right away. It will likely take a few months to get in and most likely you will have to travel. There aren't many of us lucky enough to live close to one of the true PANDAS / PANS specialist, but trying to talk to a regular doctor about this is a waste of time. I hope you can find some way to help your daughter soon.

 

Dedee

[dandilion44]

Hi - Thanks for your response (and no offense taken)! The reason I didn't give her antibiotics for the ear infection right away is because I know that most ear infections clear up on their own....and I took her in just to confirm that it was indeed an ear infection and not something worse. So, I generally fill the prescription, bring it home and wait a few days to see if the ear infection goes away on its own. If it doesn't, I give the antibiotics. My pediatrician agrees with this approach. Both of my children have food allergies and sensitivities (my DS is 6 and has severe, anaphylactic allergies) so I try not to give them if not necessary (and I try to do my best to get lots of good probiotics into them). My daughter is gluten free, about 98% dairy free and on a low sugar diet.

 

To my knowledge she has never had strep. She did have a cold and complained of sore throat a few months back, but it wasn't bad enough to bring her in and it (seemingly) resolved on its own. Makes me wonder, now that you mention it though.... The only other thing that really raises a flag to me is her recurrent bouts of impetigo...she had 3 within a couple months. And yes, since I have the amoxicillin on hand, I just wondered if I could/should try it as a test (and it makes perfect sense that if it doesn't help, it doesn't mean much, really).

 

So do you think it is even worth my time trying to get the ped to order any kind of testing? She is at the point where she doesn't want to eat/drink liquids because she knows its going to make her have to urinate. Arg!

 

Thank you for your suggestions...I will start the process of looking for a PANDAS specialist. We are in Southern CA....

[WorriedDADNMOM]

Dandilion, I can feel your angst. We were in the same place-----------almost exactly. Impetigo(that took long to subside sounds like your case too), subsequent infections, behavioral and sensory issues(sound, light, touch------wetness after urination is a big one. pain during urination-----suspected infection, never confirmed.)

 

My gut on the amox is that it might help some, but really for us was two or three rounds of 30 day Zithromax. We are in a pretty good place right now. As far as moving forward, here is what I recommend:

 

1) Arm your self with info.....this board and anything you can find about Strep, Mycoplasma P.,various infections both Bacterial and Viral and how they relate to behavior in kids. Impetigo too.

2) Get to a Integrative Ped or DAN Ped or some other Pandas Doc that will first and formost believe your story and know what you are talking about.

 

As far as "Generally healthy" goes......for us we were the same. But as we learned more, we started documenting. Never any fever, just behavioral stuff coupled with low grade fever----99-99.5 almost all the time. Nearly every day or other day for many weeks. It was so bad with our dd that she had two separate issues during the bad time, just prior to DAN protocol, where she stopped talking for 2.5 hrs once and 1 hour on another occasion. This after tics, behavior, emotional labiltiy, dark thoughts, irrational fears and all the sensory and ocd stuff......enough was enough. Our DD was 6 when the tic came and we were clued in. But it had been going on for far too long.

 

I think the body has a way of telling us stuff is wrong-----ie pain or wetness with urination, sensory......etc...... We as parents don't quite understand it all, but when it gets so bad, your forced to look into what is going on and the past and you find it is all linked.

 

If you need more info, you can PM me and I can get into specifics. The fact that you are here and have found ACN is a good thing and a step in the right direction.

[pr40]

our ds5's symptoms were very similar minus impetigo. get your support for a flareup in place before it happens. count on months of abx, combination, etc. do bloodtest of inflamatory markers, check vits and minerals, think of methylation.

if it is pandas (and it does sound like it), get ready for a long fight, year, two, three, who knows.

why 98% dariy free? why not 100%? and so on

[colleenrn]

I really agree with Dedee's post. If it were me, knowing what I know now, I would give her the first dose of amoxicillin right now and go from there. Based on what you have described, it certainly could be PANS. Amoxicillin is not the optimal antibiotic if she has strep anywhere in her body, but it is the antibiotic you have and could start her on. The first few times my daughter had strep, she responded well to amoxicillin, after that she did not. I would not wait and see. You can figure out how to proceed with testing, PANS drs, etc... in the days to come, but you have the chance right now of starting to kill the strep if you give the amox. Make sure it is a good treatment dose for her weight.

Colleen

[rowingmom]

If you decide to use the abx, be ready for a possible herx reaction - either an increase of existing symptoms or the development of some new ones. Make a list of existing symptoms and rate them from 1-10. Note the day you start treatment, and start charting responses daily. Excel is good for this.

[airial95]

My son was also what you would call relatively healthy prior to PANDAS. A few ear infections as an infant (expected when they start day care), and an impetigo infection at 19/20 months old. Three weeks after that impetigo infection our behavioral issues started - it progressed until we finally talked to the ped about it 6 months later and he suspected PANDAS b/c of the timing of the behavior changes and the previous impetigo infection (which can be caused by either strep or staph).

 

The change we saw in my son within 2 weeks on Azith was amazing - he wasn't back to himself, but it was night and day difference from where we were. Since his dx, we have been diligent about tracking behavior/symptoms - taking him to the dr. when things change. He has since had 30+ strep infections (positive cultures) since his dx, and never once has he had a sore throat, rash, fever or ANY outward symptom of strep - just changes in behavior. He has also never had elevated strep titers - which isn't uncommon either - 20-25% of the population never see a rise in titers.

 

Who knows if he had previous untreated strep infections in the 6 months between the impetigo infection and when we were dx with PANDAS. Considering his track record since then, I would say that he must have, but we just never knew.

 

I would also recommend trying Ibuprofen with your daughter. It can help reduce the inflammation in the brain from PANDAS and may give you a clue if that is the culprit behind her wiping behaviors.