Jump to content
ACN Latitudes Forums

Recommended Posts

Posted

Many of us read Dr. Trifiletti's response to the WSJ article last week where he speculated our children's condition is an alternative fever response to infection. I was wondering what folks think about that?

 

My dd used to get fevers when she was little, but rarely now. Something I thought about when reading this was how my dd would scratch bug bites until there was a sore, then scab. She would then pick off the scab and this nasty cycle continued until some ulcerated. Not to gag anyone, but her hands would be filthy from doing this and she had all these open wounds all over her. Never an "infection", never a fever. I've gotten a mild fever from a bad pimple before and this child never showed sign of infection with all this blood and dirt and nastiness going on for years.

 

The only fever I can remember prior to ivig came with a UTI years ago. That's the last one I remember before IVIG. She's had several in the past two years in response to treatment though.

 

Anyone have thoughts on this they'd be willing to share?

  • Replies 35
  • Created
  • Last Reply

Top Posters In This Topic

Posted

http://online.wsj.com/article/SB10001424052970203518404577094604010074464.html#articleTabs%3Dcomments

 

It is the 8th comment from the top. Back in the day, Dr T used to post his current theories, research and hypothesis on this board and we could ask questions or chime in with comments. I really learned a lot that way. He doesn't elaborate too much on this, so if anyone has had the privilege to hear his thoughts on the subject, please do share!

Posted

I was hoping you were going to say the exact opposite. My son usually spikes really high fevers, up to 105 once. When he was younger, before all of the tics and PANDAS symptoms began, he a 3 febrile seizures, one lasted for 13 minutes. I have often wondered if there was a connection between the two.

Posted

yeah - i was interested to see those comments also. for my ds, he had 'sudden onset' at age 4.5. prior to that, he would often (can't remember, but maybe every 3-4 mths or so) he'd have a fever randomly for a short time and then get over it. he'd also occasionally vomit. he was so young that we just thought it was how his body processed whatever it had been exposed to. he may have a fever and then move on.

i have wondered how that history is related to pandas. perhaps, he stopped doing that and then we had the pandas reaction - ? maybe we would have seen pandas behaviors sooner if he didn't have the fevers? i don't know -- but interesting.

Posted

My dd had one febrile seizure at 18 months. I think her normal fever response stopped young too, maybe 5?

 

But what you describe about random fevers and vomit; that was her response to IVIG and not just immediately afterward, but periodically up until 12 weeks post her first IVIG. Now with IVIG, she has none of that. No fevers, no headaches, no vomiting even when we did no meds becuase her liver enzymes went crazy high. She has been doing really, really great and I think we are getting to the point where we will increase the time between IVIGs and then d/c and see if she holds.

 

So, I'm asking myself....am I looking for a "normal" fever response to something? Her little sis started the stomach flu this afternoon and did get a mild fever. We could all get it...you know how that bug goes through a house (YUCK!), but for some reason, I think stomach bug is different....

Posted

Hi Jill! :ph34r:

 

Both of my boys have run normal fevers throughout their lives. My younger son just had one last week with a headache and runny nose. My older son's incidence of fever is indeed decreasing, but, that is normal with age as far as I understand. I can't remember the last time my husband or I had a fever....gosh..could even be a decade or more. So, that comment from Dr. T...IF he meant that there is a lack of fever response, doesn not seem to ring true here.

Posted

My son used to have lots of allergies as a baby, then it all went away and there was no response, no fevers, nothing. But we started B6, zinc and magnesium and they can back! Weird I know. But Dr. T found we have a bunch of other problems. At least we can try to fix them now I guess....

 

Nancy

 

Nancy- Was that cocktail for elevated copper or something else?

Posted

Hi Jill! :ph34r:

 

Both of my boys have run normal fevers throughout their lives. My younger son just had one last week with a headache and runny nose. My older son's incidence of fever is indeed decreasing, but, that is normal with age as far as I understand. I can't remember the last time my husband or I had a fever....gosh..could even be a decade or more. So, that comment from Dr. T...IF he meant that there is a lack of fever response, doesn not seem to ring true here.

 

You haven't had a fever in 10 years? Wow! Of course I do work in thchoolth with little kidth thpitting and drooling on me all day as they try and thay their ethethz.

 

I'm really curious as to the WHY there may be an alternative fever response. And how do you fix it? My dd had her wham episode in March, 2007......she had perfect attendance that year.

 

Kelly, It makes sense your boys are having normal fever responses because they are well. I guess I won't know about dd12 until I let her go from ivig long enough that she isn't enjoying donor immunity.

Posted (edited)

Okay...so I am not sure what is up with your first sentence :D ...but even when younger son was really very not well.....he had normal fever responses.

 

Anyway....IDK.

 

....BUT, he did not get a fever to the strep that started it all! I wonder if he would get a fever to strep now? Don't really wanna find out though!

Edited by P.Mom
Posted

DS had strep 17 times as a young child and never once had a fever or sore throat.

 

How in the world did you or the doc know to look for strep with no symptoms???? And to look 17 times?????

Posted

My DS seems to fit Dr T's theory. DS has rarely been sick and rarely has a fever.

 

When my DS was younger I used to feel so great about how he was so rarely sick. He went two yrs w/out a sick visit to the ped from ages 3-5. My friends, on the otherhand, had kids who were constantly sick, running noses, many trips to the doctor. My DS would be around them and not get sick........or so we thought.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...