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Posted

Does anyone have this experience?

Child has illness asymptomatic of "regular sick" symptoms (behaviors de jour present.). Child is prescribed correct abx, then "regular sick" symptoms appear after being on this abx for a few days? Or is it a coincidence?

My younger dd8 has had a UTI and pandas symptoms of hyperactivity and urinary symptoms (frequency, holding too long, accidents.). She was on daily Zith, then with positive UTI, local doc added Keflex. 3 days later, she wakes up with a sore throat and headaches she's had for days, no laryngitis. The Keflex was prescribed for 10 days, tomorrow is day 10. So, the whole UTI/pandas urinary symptoms is a chicken-egg loop-de-loop for sure, then add in the abx and out comes a sore throat. We had labs drawn last Monday for the whole shebang, but no results yet.

He sent the urine out for testing, but I didn't hear back, so I assumed the Keflex/Zith should do the job, but it hasn't. Her UTI persists and she says the Keflex has made her stools a little loose adding another variable to the puzzle.

Do you think the sore throats and headaches are a coincidence? It's hard to believe in coincidences anymore. Something was causing the the urinary frequency in the first place, right???

Posted

When you say UTI symptoms, are you talking about just the urgency/frequency, or pain while urinating?

 

I've never experienced the chicken/egg timeline you describe of giving abx and then having symptoms, except in terms of a lyme/herx thing. But not in a strep/sore throat situation. However, I guess I could envision where you might have a sinus infection, give abx, then the abx help you kill the bacteria and in doing so, the body produces more mucus to help shed the bacteria and the mucus is the cause of the sore throat and sinus-pressure headache. But pure speculation/hypothetical guess.

 

One thing I'm investigating regarding urinary urge is the amino acid arginine. It relaxes small muscle contractions and is implicated in the small contractions that cause overactive bladder. I've made a few supplement changes so I need to wait a bit, but then I'm going to add arginine to see if it helps with this symptom. In my house, I don't think it's infection triggered. I think it's a Krebs Cycle methylation thing. But won't know for a few more weeks.

Posted

It's both; it's the urgency, frequency, accidents and burning when beginning. It's also that foul odor that is unmistakable. I took her to local doc a week ago Saturday. Her urine tested positive for UTI. She was on daily Zith then. He added Keflex and sent the urine in for culture to make sure her infection was covered by those abx. She does not complain of significant pain, just some burning when beginning to urinate.

 

Sorry if this is a dumb question, but can you have a sinus infection without congestion? She didn't/doesn't have congestion at all.

 

We went through this exact same thing with our older girl when she was this age only we had no idea about pandas and went through all kinds of urology testing that turned up nothing and concluded "behavioral". I need to call her doctor this morning and see where to go from here.

Posted

LLM,

 

I know that the Low Oxalate folks use arginine to help with the urinary symptoms associated with high oxalates/urinary irritation/urgency.

 

What are your thoughts on this? My son has PANDAS... exacerbation with strep throat that was asymptomatic except for PANDAS symptoms. He is about 8 weeks into the diagnosis and now we have slight urinary dribbling. COnfusing as many of the other symtpoms are atleast easing up....The horrible syndenhams chorea has settled, the other symptoms have settled but now we developed this slight urinary dribbling. I know it could be worse so I am not complaining.

 

However, I was wondering whether you thought this was the antibodies just circulating to that part of the basal ganglia as I initially thought since urinary urgency is part of PANDAS (my son is dry through the night still thankfully) or is this just a symptom of total body inflammation....in the past with autism, major total body inflammation. I guess since he is still dry during the night, it is the PANDAS.

 

Thanks.

Posted

I would say yes. Our dd with very high myco igm treated with abx after couple courses then final course had large letdown of mucous from sinuses. Not sure but have had the whole asymptomatic and improvements on abx and improvements after high fever from the flu.

 

I would say with the urinary stuff, dd9 not as bad with pandas, sleeps soundly but almost is always wet waking up----sleeps very soundly. Other dd8 who has more severe pandas exacerbation and had it longer, almost always is dry at night. A few years back, she complained a lot for several weeks about pain during urination-----makes me wonder now. Hope this helps.

Posted

LLM,

 

I know that the Low Oxalate folks use arginine to help with the urinary symptoms associated with high oxalates/urinary irritation/urgency.

 

What are your thoughts on this? My son has PANDAS... exacerbation with strep throat that was asymptomatic except for PANDAS symptoms. He is about 8 weeks into the diagnosis and now we have slight urinary dribbling. COnfusing as many of the other symtpoms are atleast easing up....The horrible syndenhams chorea has settled, the other symptoms have settled but now we developed this slight urinary dribbling. I know it could be worse so I am not complaining.

 

However, I was wondering whether you thought this was the antibodies just circulating to that part of the basal ganglia as I initially thought since urinary urgency is part of PANDAS (my son is dry through the night still thankfully) or is this just a symptom of total body inflammation....in the past with autism, major total body inflammation. I guess since he is still dry during the night, it is the PANDAS.

 

Thanks.

 

I've never looked into oxalates - will have to go google. I think a number of things - the Pandas, inflammation, ASD, lyme, blocked methylation - can trigger urinary symptoms. So I can't really say "oh, the cause is x and the solution is y".

 

I'm personally looking into arginine and suspecting overactive bladder because my son's last Pandas flair (mild) resolved in March and his lyme seems to be in check. So I suspect it has little to do with infection or autoimmunity. For years, the doctors have shrugged and told me to just give it time. And maybe that's all I can do. But he's now wanting to have sleepovers with friends and he's very very frustrated with his "issue". So I feel I owe it to him to try some things. Since my big kick right now is methylation (it's been an incredibly successful way to treat some issues for both my kids), the ammonia cycle has always piqued my interest and given me a "hmmm" gut feeling, which I bookmarked and put aside while we dealt with other things. But I keep coming back to it and now need to pursue it to satisfy my "mother's intuition" or else prove myself wrong.

 

Your son has a lot going on right now and with the big procedures coming up, I don't know if you'll ever know the answer to this question. His pot is about to get stirred big time. You can mention it at your upcoming appt this week and get the doctor's take on it. I'd certainly put the question on a sticky note and come back to it after all the dust has settled if the symptom doesn't resolve. Like JAG, I believe that all of these symptoms are the body's way of saying something is amiss. I think pursing the "why" of a symptom is very important. I think your question about overall inflammation is a good one - perhaps the LLMD can do some labs to check for inflammation. Hopefully, this will give you another way to look at the total picture.

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