random symptoms, all connected

[bronxmom2]

I notice our kids seem to have some strange attributes, seemingly random stuff that keeps coming up, not usually associated with PANDAS but connected, I think.

 

Here's stuff I've noticed in my son:

- tooth problems

- unusual sweatiness- runs very very hot

- weird pervasive pronunciation problems (in a verbally gifted kid)

 

I'm curious what kinds of stuff you've noticed in your kid that you attribute to PANDAS though you've not sure if you should...

[MomWithOCDSon]

I notice our kids seem to have some strange attributes, seemingly random stuff that keeps coming up, not usually associated with PANDAS but connected, I think.

 

Here's stuff I've noticed in my son:

- tooth problems

- unusual sweatiness- runs very very hot

- weird pervasive pronunciation problems (in a verbally gifted kid)

 

I'm curious what kinds of stuff you've noticed in your kid that you attribute to PANDAS though you've not sure if you should...

Yes!

 

- tooth problems (not sure what you meant, but my DS's mouth is "immature," meaning nothing fell out when it was supposed to, nothing comes in when it's supposed to, a couple of teeth have been coming in in weird places, rather than in the correct line, etc.)

- runs very very hot (and he hates it because he has contamination OCD and sweat is not his friend!)

- pronunciation problems ("sowthener" instead of "southener" -- they're studying the Civil War in history -- for instance)

- shouts out random words or phrases, completely nonsensical, nosequiters ("Chicken and cheese!")

- paces when he talks (it's like he's kinetic . . . he has to do one in order to do the other)

- gets suddenly sleepy/tired and will nod off when faced with something he's anxious about

 

I'm sure there are many others, which other posts here will undoubtably call to mind. But we've been living with this for so long, sometimes I forget what's "weird" and what's "normal."

[peglem]

I'm sure there are many others, which other posts here will undoubtably call to mind. But we've been living with this for so long, sometimes I forget what's "weird" and what's "normal." wacko.gif

 

Exactly!

 

My child does have teeth issues, but I'm not sure what else qualifies as odd, possibly PANDAS related. Seems like evrybody defines these issues with their own perpectives: OT sees everything as sensory related, ABA sees reward/consequence (although I'm sick to death of the behaviorists at this point.), ENT sees everything as Munchhausen's...

 

For the last couple of months Allie has been laying her chest across my lap and pressing down hard while making what sounds like gasps of relief. We can't figure this one out. Deep pressure? On her chest?

[Stephanie2]

The path of destruction is one I attribute to pandas, and also the sensory seeking behaviors (crashing into furniture and people, wanting to wrestle with friends to the point of being quite annoying, etc.

 

We also have the "nonsense" talk which I have heard is part of Tourette's. It is sad to hear my son doing this b/c it is just so odd. He will go around quoting movie lines, and just saying random phrases out of context...

 

Stephanie

[bgbarnes]

The path of destruction is one I attribute to pandas, and also the sensory seeking behaviors (crashing into furniture and people, wanting to wrestle with friends to the point of being quite annoying, etc.

 

We also have the "nonsense" talk which I have heard is part of Tourette's. It is sad to hear my son doing this b/c it is just so odd. He will go around quoting movie lines, and just saying random phrases out of context...

 

Stephanie

What do you mean by nonsense talk- my ds teacher thinks sometimes when he is talking ( to himself) he does not realize he is talking----we don't have tics but I a wondering if that is similar.

We definitely have the crashing into furniture and people- wrestling friends until he is annoying. We have never been to an OT- but was thinking about it- now I am wondering if it is all PANDAS and he has more sensory issues than I realized.

Brandy

[norcalmom]

My son was VERY sweaty last year when he was in exacerbation. He is still a sweaty kids, but I swear it was worse when he was exacerbating. He also showed up low on zinc back them, and border low magnesium, which makes sense - he was sweating it all out. He is now in normal range on both and I swear he doesn't sweat nearly as much as he used to...but then again it is 50 in California, and usually its in the 90s by now, so maybe thats it!

 

No teeth issues that I know about. Or speech problems.

[smartyjones]

. He is still a sweaty kids, but I swear it was worse when he was exacerbating. He also showed up low on zinc back them, and border low magnesium, which makes sense - he was sweating it all out. He is now in normal range on both and I swear he doesn't sweat nearly as much as he used to...

 

 

interesting norcalmom - do you think he was low on those minerals b/c he was sweating so much or do you think his sweating was connected to low values of those? my older non-pandas son is a sweaty kid and i have questioned if his zinc is correct b/c he's a very picky eater. what test did you do that included those minerals?

[Stephanie2]

Well, the nonsensical talking to oneself is actually a tic in some cases.

 

I am really starting to think that all of my son's sensory issues are pandas related! He has been on 2 high dose abx lately and each time there was a remission in the crashing and sensory seeking stuff. he was just so calm. Made me think that pandas symptoms are more widespread than i originally thought. also, when his pandas is at it's worst he gets tactile defensive regarding getting hair washed and he gets extremely auditory defensive. i haven't seen the auditory defensiveness in a while b/c he has not had that 100% full blown pandas in a long time, i am learning to catch it early.

 

As far as OT, i had my son in OT for a year and he didn't seem to make any progress. in fact, my husband and i started to think that he was catching strep at the OT clinic! We pulled him out...however, i am enrolling him in gymnastics camp this summer b/c i think he really needs the sensory input. maybe he will get it all out of his system and come home calm at the end of the day!!!!!!

 

Stephanie

The path of destruction is one I attribute to pandas, and also the sensory seeking behaviors (crashing into furniture and people, wanting to wrestle with friends to the point of being quite annoying, etc.

 

We also have the "nonsense" talk which I have heard is part of Tourette's. It is sad to hear my son doing this b/c it is just so odd. He will go around quoting movie lines, and just saying random phrases out of context...

 

Stephanie

What do you mean by nonsense talk- my ds teacher thinks sometimes when he is talking ( to himself) he does not realize he is talking----we don't have tics but I a wondering if that is similar.

We definitely have the crashing into furniture and people- wrestling friends until he is annoying. We have never been to an OT- but was thinking about it- now I am wondering if it is all PANDAS and he has more sensory issues than I realized.

Brandy

[Stephanie2]

I wanted to mention that my 5yo used to sweat all the time, ESPECIALLY at night while sleeping. Like drenching wet in the bed! Our DAN doc told us that epsom salt baths would stop this (I guess it is what happens at night when their body is trying to detox...the sulphur in the epsom salt helps the detox pathway to work better). I think within a week, it really did work!!! My husband was amazed! My son is 50 lbs and we use 2 cups of epsom salt per bath, for at least 20 minutes.

 

 

I notice our kids seem to have some strange attributes, seemingly random stuff that keeps coming up, not usually associated with PANDAS but connected, I think.

 

Here's stuff I've noticed in my son:

- tooth problems

- unusual sweatiness- runs very very hot

- weird pervasive pronunciation problems (in a verbally gifted kid)

 

I'm curious what kinds of stuff you've noticed in your kid that you attribute to PANDAS though you've not sure if you should...

[MomWithOCDSon]

Exactly!

 

My child does have teeth issues, but I'm not sure what else qualifies as odd, possibly PANDAS related. Seems like evrybody defines these issues with their own perpectives: OT sees everything as sensory related, ABA sees reward/consequence (although I'm sick to death of the behaviorists at this point.), ENT sees everything as Munchhausen's...

 

For the last couple of months Allie has been laying her chest across my lap and pressing down hard while making what sounds like gasps of relief. We can't figure this one out. Deep pressure? On her chest?

 

I do think the "deep pressure" is a sensory thing. When very small, our DS would beg us to sit on him, or he would bury himself between the couch cushions and then want us to lay down on top of him. To this day, when he gets overwhelmed, what he wants most of all is a crushing hug.

 

I read this book a long while back called "The Challenging Child: Understanding, Raising and Enjoying the Five 'Difficult' Types of Children" by Dr. Stanley Greenspan. One of the five "types" of children he spent a chapter on was the "sensitive child," which I've always associated with DS. He spends a good bit of time talking about how they crave pressure and even "impact." He said that getting these types of children into sports like soccer would feed some of that need for impact . . . like you said Stephanie . . . kicking things, etc.

 

I don't know about your kids, but here's another thing I've just remembered. From the time our DS could walk, he was jumping . . . hard and high! Off of anything he could drawl up on: the stairs, the coffee table, the dining room chair, his bed, etc. He loved the "BAM!" and the shock through his legs when he landed! Nowadays, for a similar feeling, he bounces very hard on my yoga ball!

[bgbarnes]

I wanted to mention that my 5yo used to sweat all the time, ESPECIALLY at night while sleeping. Like drenching wet in the bed! Our DAN doc told us that epsom salt baths would stop this (I guess it is what happens at night when their body is trying to detox...the sulphur in the epsom salt helps the detox pathway to work better). I think within a week, it really did work!!! My husband was amazed! My son is 50 lbs and we use 2 cups of epsom salt per bath, for at least 20 minutes.

 

 

I notice our kids seem to have some strange attributes, seemingly random stuff that keeps coming up, not usually associated with PANDAS but connected, I think.

 

Here's stuff I've noticed in my son:

- tooth problems

- unusual sweatiness- runs very very hot

- weird pervasive pronunciation problems (in a verbally gifted kid)

 

I'm curious what kinds of stuff you've noticed in your kid that you attribute to PANDAS though you've not sure if you should...

MY ds is a BIG sweater- and at different times would be drenched at night just like yours- do not have any correlation to exacerbation b/c we have just started this journey of being diagnosed PANDAS a couple months ago- even though I think my ds has had it for 5 years now( been going through medical records and I can start to pinpoint the onset down now). I have been giving epson salt baths a couple nights a week now(especially if he has had a meltdown). I think they have a really good effect too!

He sometimes talks SO FAST that it is difficult to understnad him- I will have to have him repeat himself several times and mumbling. He also will speak WAY TOO LOUDLY!!!!!!

[tantrums]

My son also is extremely sweaty. However, I will say, he has been like that pretty much since birth. I don't see it being any different since pandas came around. But I often have to actually completely change him in the middle of the night, or more often, when I'm going to bed, because he is soaked completely. Sometimes I wonder why I bother showering the poor child

 

What about "sick smell"? That is also something he has always had, but when he is sick, he stinks! An odd sort of BO type odor, but he is only 6!

[norcalmom]

Anyone's kids nail beds have little white specks or lines in them?

 

You know I havn't really researched how the sweatyness is related, but before we got pandas diagnosis I was looking into supplements for kids that have tics and tourettes. One is epsom salt baths - epsom salts are essentially magnesium sulphate, and can be absorbed through the skin and is a very common remedy for achy muscles. I'm not convinced the suphur is drawing toxins out, maybe its putting magnesium in.

These baths as well as mag supplements were recommended all over the tic blogs and sites. My son'ts muscels were very sore from ticcing all day. I can't say that we saw a hug decrease in tic related to the mag supplementation, but the baths did help his neck and sholders feel better - particularly soaking a towel in a high concentration of epsom salts/water and draping over shoulders while in the bath.

 

Zinc tests - first time, at tail end of exacerbation winding down stage, before antibiotics)- we had Magnesium RBC and Zinc RBC test taken as part basic metabolic panel zinc was low and magnesium borderline low. Because I have read that low mineral absorbsion is a smptom of celiacs disease I took him to gastroenterologist to rule that out and make sure everything AOK with his gut (becasue I was nervous about antibiotics) this was several months later NOT in exacerbation, it was a Zinc BRC same as before plus a Zinc Plasma test. Both came up in middle of the normal range.

 

He also had white specks - lines on his nails. This is a sign of low zinc as well. It can correspond to a growth spurt or a virus. He has had this two times - and you can see the line in a few of his nails from when he had virus or growth spurt, like a ring on a tree. Since the kids are growing all the time, hard to tell which caused the line, and I didn't know about this until later, but you can see he had somehting happen a few months ago. He has a diet that is high in zinc and magnesium.

 

Minerals are lost in sweat. Not a cause of sweating as far as found. check out - http://www.arniebakercycling.com/pubs/Free/NS%20Sweat.pdf

On another note, years ago I went to an accupunturist becasue I had a herniated disk and was in constant pain. I also had these jumpy/twitchy muscles which started a few weeks after I hurt my back. It was weird my tricep or bicep would just jump around. She told me I needed something to help my muscles absorb more minerals becuase when our bodies are in state of chronic pain and or tension they (burn thorugh the minerals or can't absorb the minerals...something like that) . Anyway, she gave me some stuff called Min Tran, and, it worked. Still in chronic pain, but my muscels stopped jumping around within 24 hours of taking this stuff. Maybe kids with tics are burning thorugh zinc and magnesium faster than normal.

 

I may have raised more questions than answered here.

[tantrums]

Stephanie - forgive me if I'm wrong, but was it you that your children also have ACM? excessive sweat, especially at night is also an ACM trait. I have attributed my sons sweating to the possibility of him having ACM since he did so this all of his life.