Advice needed

[Tattoomom]

Here's the link to my last post-

 

http://www.latitudes.org/forums/index.php?showtopic=18069

 

 

Basically, our dd (almost 4) has been dealing with MAJOR MELTDOWNS for the past year. It all started around the same time she had a sinus infection that wouldn't go away. Even after rounds of abx, CT scan still showed sinus problems. During this time, she also regressed in cognitive skills and seemed to have "foggy brain." She's been diagnosed with Pragmatic Speech delay and processing disorder. She sees a ST once a week and recently started OT. I've been concerned her behaviors may even be autism, but the specialists don't seem to think so. She is on a waiting list for a Developmental Pediatrician. However, when she got a UTI and got on abx, her language skills immersed and she seemed to wake up! Then went off, only to get strep throat 2 days later. More abx= more improvement.

 

 

 

 

May concerns are---

 

~DAILY MELTDOWNS (last anywhere from 10 mins-1 hour) and can happen MULITPLE times a day. She has no control during these episodes and screams bloody murder. We've tried everything to calm her down and nothing works. She looks so out-of-control, she even has body shakes, like a nervous breakdown. ***After the episode, she's sweet as pie, almost relieved. It's bizarre!***

 

~ANXIETY- She bites her fingernails to the quick. She's very stressed out. Always seems tense.

 

~SPACEY/FOGGY BRAIN- Forgetfulness. She has trouble following simple instructions (go put the book on the bottom shelf)

 

~REGRESSION- Seems to forget colors, shapes and numbers

 

~TROUBLE POTTY TRAINING- She's almost 4 and still wears pull-ups most of the time

 

 

We're on daily Amoxicillin 400mg/ 2 x's a day. It helps and I know this because when she goes off, her behavior deteriorates. But it's not a cure all. She still has bad days. Is that to be expected? Does this sound like PANDAS? Blood work was done and was all normal. Ped still thinks is worth it to continue abx, but I'm not sure she's on enough?

[LNN]

I have two kids who are PANS. But they are also more than that. Infection clearly pushes them off cliffs and abx are a key component of getting them back. But abx alone are not their be all and end all solutions. Reading your other post of all your kids, it seems that they too have additional factors at play.

 

It does seem that abx will be a big part of your treatment plan. It does seem that they'd fall under the PANS category. But for your 4yo, I'd definitely keep those tonsils in the spotlight and also keep an eye on the sinuses. Sinuses are a great place for biofilms and chronic infection. I've posted this many times but if you haven't read it, it's well worth your time http://bacteriality.com/2008/05/26/biofilm/

 

Given the autism-like behaviors, if you can find the time, this video by Amy Yasko is filled with things to thing about (it's long and you may need to watch it in chunks - it's a lot to take in at once - but very very thought provoking). http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-

 

We pursued infections as a starting point for both kids. Then moved on to detox and nutritional deficiencies. In my son's case, a genetic zinc/b6 deficiency known as pyroluria (aka KPU) was a huge factor, as well as lyme. Treating his pyroluria made an amazing difference in his brain fog/cognitive performance. It was like he woke from a coma.

 

For my daughter, a genetic problem with processing folate (Vitamin B9) caused by a mutation in the gene called MTHFR, resulted in major mood swings and anger that made her seem literally insane. Treating this made big improvements in her rages and anxiety. We also treated a high copper problem, which can cause bi-polarish behaviors.

 

So my point is that yes, it certainly seems wise to pursue a long course of abx and continue to be alert for chronic infection (tonsils, sinuses, mycoplasma). That's probably your first layer. Then prepare yourself for additional digging, as you're likely looking at an interplay of factors. But the good news is that it can be unraveled, one step at a time.

Edited August 5, 2012 by LLM

[Dedee]

Have you seen a PANDAS specialist? It sounds like PANS to me. I hear you say that Amoxicillin helps but perhaps another antibiotic would give you even more resolution. I would get an appointment with a PANS specialist as quickly as possible. Do not mess around with those who "think" they can help you. It's not worth it. All of these symptoms could possibly be resolved with the appropriate treatment. You need someone who knows what they are doing. Do not delay. Call someone right away for an appointment as you will most likely have to wait a few months to get in. Best of luck.

 

Dedee

[Tattoomom]

So you both said PANS. Why PANS and not PANDAS?

 

 

Also, I'm searching high and low for someone qualified to help. We're in Jacksonville, Fl.

 

Have you seen a PANDAS specialist? It sounds like PANS to me.

 

Dedee

Edited August 6, 2012 by Tattoomom

[Dedee]

We live in Tennessee but travel 13 hours to Florida to see Dr. Murphy who is located in St. Petersburg at All Children's Hospital. She is very good. Also, if that isn't the part of Florida you are looking for there is a group in Melbourne Florida who treat PANDAS patients also. I think it is Dr. Rossignol and Bradstreet. Check out the thread at the top of the page and it has a list of doctor's who treat and what state they are located.

 

We use the term PANS because it is a broader term that doesn't specify the specific bacteria or virus that the child may be reacting to. The term PANDAS refers to a child reacting to only the strep bacteria. It's the same concept, but PANS is just broader.

 

Dedee

[1tiredmama]

Has her sinus infection cleared, yet? And, by that, I mean is she free of sinus trouble without abx now?

[smartyjones]

i'm sorry i don't have much time now. . . so sorry, i know all too well what you are describing.

 

first,i think the medical management is the biggest issue in working with this.

 

secondly, i think coping mechanisms for you are a high priority with a child that young. my son had 'sudden onset' at age 4.5. one of the most helpful things was the book "The Explosive Child" by Ross Greene. it wasn't so much that we learned skills for him at that time; but i learned helpful ways for me to management the irrational explosion without being dragged into it. there is quite a bit of past discussion about it if you do a search here with Explosive Child.

 

 

my son also had forgetfullness of things i knew he knew -- like the order of the days of the week during exacerbation. this was much better out of exacerbation. you may want to research or investigate 'working memory' to discuss with developmental ped.

 

my son had extreme issues with potty phobia. he is 8 niow and independent with that now -- but it was a long time coming and much systematic desensitization. we never unearthered the reason -- i'm not sure he actually knew -- i think it was an unfounded phobia -- likley there was a reason at some time, but he had forgotten it and the habit remained. i don't think it was an involved OCD, more a phobia fear. i do remember it was something like a 72 day process to getting him peeing - and likely at age 5, maybe close to 6 - ?. pooping in pull ups lasted much longer but then melted away with just doing it one day. unbelievably, as it it such an all consuming issue -- it seems such a distant memory now -- as it does with my older son who didn't have potty issues. at the time, i never thought that possible. so my point -- there's hope and that issue, too, will see resolution. it just might take more work that an average kid -- or even a troublesome potty trainer.

[Tattoomom]

To my knowledge, yes. She's not complaining (headaches, covering eyes, watery eyes) anymore.

 

 

Has her sinus infection cleared, yet? And, by that, I mean is she free of sinus trouble without abx now?