Joint Pain, Teething, Rash/Cold Sores in Non-Pandas dd

[matis_mom]

OK, maybe I'm stretching things here, but let me go over what's been going on this week...

Sunday Pandas ds started going down-hill (5 days post steroids)

Monday, still a basket case, dilated pupils, etc.

Tuesday, took everyone in to re-check for strep since it's been two weeks from when we all finished antibiotics. Dd 7 (who had not cleared strep first round) had been complaining of stomach aches, and pain on hips. Everyone negative for the rapid, no news on culture. But dd7 was sent for chest x-ray because lungs did not sound clear. Have not heard back from that.

Wednesday, dd7 has rash on face. Also pain under arm, maybe swollen limph node?

Thursday, rash worse, and we noticed she is cutting some molars. Called the doctor but they were only working 1/2 day, will have to wait till Saturday.

Friday, face looks pretty bad, and she has a tummy ache.

 

So now I am worried dd7 might have intercellular strep and all the other symptoms are related to her teething. Or maybe she has impetigo or something? This is a little far-fetched and I now the look I'm going to get from the pediatrician. The hip-pain freaks me out (although it's gone now)... Still, I think deep inside the pediatrician feels guilty she totally missed my Pandas son's symptoms, so maybe I'll get more sympathy in trying to get to the bottom of this with dd7...

 

So will some of you who been through this please chime in? I even remember someone writing their child also had canker sores (that's what her face looks like) around exacerbations.

 

Luckily, DD7 is not showing any change in behaviors, but I think it's definitely affecting his brother (or, it could just be the typcial "saw-tooth" pattern after steroids for him?)

 

Am I going crazy?

 

Isabel

[smartyjones]

oh isabel - what i have to say is not so good - good in the sense that no, i don't think you're crazy, not so good in the sense that i think it's all related. but then again, i think everything is related - in each individual child and for those related to pandas kids. just what to do about it?!

 

my son had a horrible mouth rash last year with first episode. dr's just brushed it off as chapped lips - it spread all outside his mouth and a bit up to his nose when he didn't have a runny nose. i don't know why they didn't think it looked like herpes or impetigo - i've seen some pics on the internet of both that it seems like but no dr was concerned - it wasn't so much like creeping crude of those but still a bad rash. the ND believed it to be related to gut issues. it did resolve some with supplements but seemed helped most by abx. if you want, i can pm you a pic to compare. drs just thought coincidental, i know it's related but don't know how or why.

 

my non-pandas son(almost 8) shows ever so slight pandas symptoms - mainly what we used to refer to him acting like a 13-year old premenstrual girl occasionally if disappointed or something doesn't go his way. other odd things like that he is extremely not adult-oriented, although fine with peers (i've seen others mention similar), has fine handwriting(although has come slowly with perfectionist tendencies) but doesn't like some fine motor skills activities such as tying shoes, folding papers.

 

around thanksgiving, pandas son,5, had flu and pandas exacerbation. son 7, had one tooth fall out thanksgiving night, another within the next week. he started showing some strange behavior - not listening, more emotional, headstrong. all of this is manageable and wouldn't really raise any flags as out of the realm of normal kid mood or phase except that his brother is pandas. we gave him the same homeopathic pandas son is on for about a week and he seemed to improve. there does really seem to be some dental connection for a lot of kids.

 

they both currently have a mouth rash. it does seem to worsen when we've been out in the cold. i was putting the same homeopathic med on it and it was seeming to help but couldn't kick it. just last night, i tried neosporin and it seemed to help. we'll see if that can clear it.

 

i do think it's hard b/c once you know, you see pandas everywhere in other kids, etc. however, i think most of us are in-tune in a good way and what you're seeing in your daughter probably has some merit. just try to not freak out about it (easier said than done, i know) and check out what you need to. here's to a healthy 2010!

[matis_mom]

oh isabel - what i have to say is not so good - good in the sense that no, i don't think you're crazy, not so good in the sense that i think it's all related. but then again, i think everything is related - in each individual child and for those related to pandas kids. just what to do about it?!

 

my son had a horrible mouth rash last year with first episode. dr's just brushed it off as chapped lips - it spread all outside his mouth and a bit up to his nose when he didn't have a runny nose. i don't know why they didn't think it looked like herpes or impetigo - i've seen some pics on the internet of both that it seems like but no dr was concerned - it wasn't so much like creeping crude of those but still a bad rash. the ND believed it to be related to gut issues. it did resolve some with supplements but seemed helped most by abx. if you want, i can pm you a pic to compare. drs just thought coincidental, i know it's related but don't know how or why.

 

my non-pandas son(almost 8) shows ever so slight pandas symptoms - mainly what we used to refer to him acting like a 13-year old premenstrual girl occasionally if disappointed or something doesn't go his way. other odd things like that he is extremely not adult-oriented, although fine with peers (i've seen others mention similar), has fine handwriting(although has come slowly with perfectionist tendencies) but doesn't like some fine motor skills activities such as tying shoes, folding papers.

 

around thanksgiving, pandas son,5, had flu and pandas exacerbation. son 7, had one tooth fall out thanksgiving night, another within the next week. he started showing some strange behavior - not listening, more emotional, headstrong. all of this is manageable and wouldn't really raise any flags as out of the realm of normal kid mood or phase except that his brother is pandas. we gave him the same homeopathic pandas son is on for about a week and he seemed to improve. there does really seem to be some dental connection for a lot of kids.

 

they both currently have a mouth rash. it does seem to worsen when we've been out in the cold. i was putting the same homeopathic med on it and it was seeming to help but couldn't kick it. just last night, i tried neosporin and it seemed to help. we'll see if that can clear it.

 

i do think it's hard b/c once you know, you see pandas everywhere in other kids, etc. however, i think most of us are in-tune in a good way and what you're seeing in your daughter probably has some merit. just try to not freak out about it (easier said than done, i know) and check out what you need to. here's to a healthy 2010!

Thanks for the reply Smartyjones... It's good to know I'm not crazy

Do you mind me asking what homeopathic remedy you use? I was thinking of trying oil of oregano on the rash, as it seems to do wonders when I'm getting cold sores, but I know she will also need something else to deal with whatever it is that is causing the other symptoms. I almost want to leave it alone so the Dr. will see it on Sat.

 

I am glad I am not seeing any behavioral issues in dd7, but I have the feeling if I don't get on top of this it will be just a matter of time. Looking back at my PANDAS ds12, I can see his issues started way back, but the neurological effects where not felt until he was 11 (or maybe we just didn't notice). Up to then I was very laid back about things, and I figured most things would pass if left alone... Well, now I have a whole different take on life!

 

It has been very, very cold and windy here, so maybe the rash could be attributed to that, but the joint pains and stomach aches are harder to just brush off. I'll write all this down and see the doctor on Sat, we'll see what brilliant non-explanation they come up with... sigh! She was on Amoxicillin on Nov, and Omnicef in December, so I'm not sure if the doctor will agree to give her any more abxs... Maybe we'll "get lucky" and the culture they did on Tuesday will reveal strep, and then things will be easier. That's my prayer these days, "If they do have it, God please let the tests show it so we can do something about it"

[Suzan]

Hugs Isabel! I do know that my girls had rashes a lot and my older dd has had a lot of pain in her joints that Dr. T says is from strep. They also get lots of canker sores. Also stomach aches with strep. It does sound like strep to me and maybe not PANDAS but hopefully you can get her checked out for strep. If it continues I'd recommend the cunningham test for her.

 

Susan

[matis_mom]

Hugs Isabel! I do know that my girls had rashes a lot and my older dd has had a lot of pain in her joints that Dr. T says is from strep. They also get lots of canker sores. Also stomach aches with strep. It does sound like strep to me and maybe not PANDAS but hopefully you can get her checked out for strep. If it continues I'd recommend the cunningham test for her.

 

Susan

I will definitely insist that they check for strep, but I might have a hard time because they just swabbed her on Tuesday. I will ask to do a stool sample, as that is how we found out about my PANDAS ds. I am hoping if we nip this in the bud it will not get to the PANDAS stage!

[matis_mom]

Hugs Isabel! I do know that my girls had rashes a lot and my older dd has had a lot of pain in her joints that Dr. T says is from strep. They also get lots of canker sores. Also stomach aches with strep. It does sound like strep to me and maybe not PANDAS but hopefully you can get her checked out for strep. If it continues I'd recommend the cunningham test for her.

 

Susan

I will definitely insist that they check for strep, but I might have a hard time because they just swabbed her on Tuesday. I will ask to do a stool sample, as that is how we found out about my PANDAS ds. I am hoping if we nip this in the bud it will not get to the PANDAS stage!

[smartyjones]

isabel - i was putting the same homeopathic drops that we are using for pandas son on the rash - pleo sanum sans strep. i think it's doing well for him taking it internally but i don't know that i can recommend it for the rash b/c it doesn't seem to be kicking it. if i'm adamant about putting it on often, it seems to help - but it's not getting rid of it.

 

my older son seems to be getting a stye. i was reading about that and that said it's often caused by staph. maybe the mouth rash is staph too? that's why i tried neosporin last night. that seems to be helping - i'll keep you posted.

 

i think i'd leave it alone too before the dr sees it.

 

i have a friend who is a big advocate of oil of oregano - what do you use it for? can you get your kids to take it? i've heard it's a bit brutal but i'm interested in it.

[matis_mom]

isabel - i was putting the same homeopathic drops that we are using for pandas son on the rash - pleo sanum sans strep. i think it's doing well for him taking it internally but i don't know that i can recommend it for the rash b/c it doesn't seem to be kicking it. if i'm adamant about putting it on often, it seems to help - but it's not getting rid of it.

 

my older son seems to be getting a stye. i was reading about that and that said it's often caused by staph. maybe the mouth rash is staph too? that's why i tried neosporin last night. that seems to be helping - i'll keep you posted.

 

i think i'd leave it alone too before the dr sees it.

 

i have a friend who is a big advocate of oil of oregano - what do you use it for? can you get your kids to take it? i've heard it's a bit brutal but i'm interested in it.

Interesting that you mentioned staph, as it was something I was considering too. I put oil of oregano mixed with olive oil (too strong otherwise) and although it really bothered her at the beginning, it does seem to make it better. I use it on myself full strength when I feel a cold sore coming up, and if I do it a few times in a row, the sore never does come up, it's amazing. Oil of Oregano is supposed to be anti-viral, anti-bacterial, and anti-fungal, so I guess it works on sores because they are viral, it's just a form of herpes, which kind of gets activated if you will by cold and in my case sun (can't be in the sun around noon in summer!)

 

Anyhow, as for the homeopathic, my son was given a combination remedy that is "Upper Respiratory - Staph/Strep" so I could try that with her (coincidentally, her lungs were not clear on Tuesday, even though she didn't have any coughs or anything).

 

I will go to the pediatrician tomorrow and see what happens. If that doesn't go anywhere I will have to go to the dr. that diagnosed my son, but I really hesitate because of the cost...

[matis_mom]

Well, just came back from the doctor. He thinks the face rash is impetigo (staph) and gave us a prescription for that. He took it seriously and checked her all out, I told her about "my son having and autoimmune problem with strep", and he actually said, "oh, does he have PANDAS?", so at least he understands what's going on and is willing to help. He did not want to give her an antibiotic at this point because he said he kind of wants to see how she does in the next few days. He wants x-rays of the hips, and to come back next week for a follow up and to do some blood work. He also had her swabbed again (even though they had done it just this past Tuesday). Rapid is negative and they are sending in for culture. So I am very happy they are taking this seriously. This is a younger doctor in the same practice and I think I'm going to try to go back to him from now on. If she still has the tummy aches and joint pains next week I will insist they do the stool sample on top of whatever blood work.

[smartyjones]

He thinks the face rash is impetigo (staph) and gave us a prescription for that.

 

i'm so happy to hear you had a good experience at the drs office! interesting about the staph - you had mentioned you were thinking staph - why was that? did the dr say why he was thinking staph as opposed to strep or something else? i thought impetigo was strep? does it matter or just that it is a bacterial infection?

 

so strange too that i had just looked up stye and read about staph and then thought the rash my boys have may not be strep as i had been thinking b/c it wasn't responding so well to the strep abx. it's done much better since last night and the neosporin - maybe b/c wasn't the right abx for it?

[thereishope]

Your ds may be reacting to the possible staph infection. I am aware of 2 kids whose first known exacerbations were caused by staph. Keep a close eye on your dd's behvaiors. I'm sure you are. What script did the ped put your dd on? And remind me, is your ds still on proph abx?

 

Did the ped see your dd in person to rule out scarlet fever?

[matis_mom]

Your ds may be reacting to the possible staph infection. I am aware of 2 kids whose first known exacerbations were caused by staph. Keep a close eye on your dd's behvaiors. I'm sure you are. What script did the ped put your dd on? And remind me, is your ds still on proph abx?

 

Did the ped see your dd in person to rule out scarlet fever?

I read the info of the cream too quickly and I assumed it was just for staph, reading on it is used for other kinds of infections as well. So, I don't know if impetigo is considered strep or staph, but the cream is certainly making it better, it is MUPIROCIN (generic for Bactroban). The doctor did ask if we had noticed any other rashes and did a thorough check (stripped her down to her undies, which they don't usually do at this practice).

 

My ds is on Augmentin 875 2xday.

[Suzan]

I read the info of the cream too quickly and I assumed it was just for staph, reading on it is used for other kinds of infections as well. So, I don't know if impetigo is considered strep or staph, but the cream is certainly making it better, it is MUPIROCIN (generic for Bactroban). The doctor did ask if we had noticed any other rashes and did a thorough check (stripped her down to her undies, which they don't usually do at this practice).

 

My ds is on Augmentin 875 2xday.

 

Impetigo is a skin infection typically caused by one of two bacteria: group A streptococcus (strep throat) or staphylococcus aureus (staph infection).

 

I don't know how you find out which it was caused by though.....

 

Susan

[matis_mom]

Impetigo is a skin infection typically caused by one of two bacteria: group A streptococcus (strep throat) or staphylococcus aureus (staph infection).

I don't know how you find out which it was caused by though.....

 

Susan

Thanks Susan for posting that, I'll keep it in mind and consider it in my book as her third strep-related problem since November, yikes! Hopefully they will run her titers this week and maybe if they are elevated they will agree to treat her (I was just reading Dr. T's post, and my DS is definitely type 1, elevated titers)... Not that I'm hoping she has PANDAS, but rather I am hoping if we catch this early and treat the strep aggresively now she wont' get to that point!

 

Isabel