*&%! - fever in ds

[smartyjones]

ds has been doing so well -- *&%! -- yesterday he woke up with a fever. slept all day, didn't eat nor drink, was nauseated. today is much better. fever gone, eating and drinking. interested in quiet activities. i'm thinking is good -- just that his body was fighting whatever was exposed to. he was at an indoor water park sunday -- i can't imagine anything -- almost even the kids - could survive in the heavily chlorinated pool -- but maybe got some bug there -- ?? or maybe just coincidence and some other bug.

 

 

i didn't treat with ibuprofen b/c i wanted his body to fight it -- fever wasn't too high -- 101.

 

i'm wondering now if i should give ibuprofen therapy to try to head off any possible post-fever pandas exacerbation. thoughts? thanks!

[rowingmom]

Fever response, yay! A functioning immune system! We haven't seen fever in a long time. My two cents would be: if he has been doing well, wait and see if he makes it through the infection unscathed. If you see PANDAS ramping, then give the anti-inflammatories.

[Pandasphilly]

We just experienced similar starting with 102.8 fever (plus strep & flu symptoms) then down to 101 fever for a week.

Fever to us means a few things:

1. When he gets fever almost all pandas symptoms disappear.

2. It's always the calm before the storm. We Brace ourselves.

I decided to use Ibuprofen due to how high it would go without it, back up to 102+, and also because I noticed ocd & mood ramping up around day 7 when he started to turn the corner. I felt it could only help.

However in speaking with Dr. T during this time he suggested we may not want to reduce fever too much (I already did -oops). Also again he mentioned alternative fever response helps elevate cytokine productions which is responsible for helping relieve pandas symptoms.

[smartyjones]

2. It's always the calm before the storm. We Brace ourselves.

 

However in speaking with Dr. T during this time he suggested we may not want to reduce fever too much (I already did -oops). Also again he mentioned alternative fever response helps elevate cytokine productions which is responsible for helping relieve pandas symptoms.

 

 

thanks pandasphilly -- ds's fever was 2 days but he is still in day 4 of tiredness and laying around. yeah - the calm before the storm is what worries me.

 

 

did dr T say anything about ibuprofen for AFTER the fever even if not using it to reduce the fever itself?

 

 

i'm confused -- i thought alternative fever response was what the body does when it does not produce a fever to try to deal with the pathogen -- such as the cascade that begins autoimmune troubles? it seems you say the alternative fever response is good -- ??

 

what day is your ds in sickness? you noticed symptoms on day 7 of sickness when he was beginning to feel better?

thanks.

[Pandasphilly]

Good question on alternative fever response. I can't say I quite understand it but Dr. T said fever is good. Means it's fighting something in the body. He said Cytokine levels are higher during sickness which may be why he feels relief. Maybe someone can chime in here. It does sound conflicting.

 

I never inquired about Ibuprofen after fever but I saw some concerning tics (arm jerk back, vocal tic returns, eyes and head slowly up like Stevie Wonder, Hand tics etc. I was thinking more likely it would help than hurt so I went for it.

We are about 5 days post fever and things got worse each day. Not quite as bad as the initial onset but it's still early so I'm fearful.

 

Days 1-7 fever, child is an angel. No signs of pandas just sweet and loving and sick (with flu? I guess), plus strep titers doubled even though he swabs negative. Fever breaks day 8.

Day 8 OCD increasing but he's able to correct himself

Day 9 Swearing starts (he can't control this, asks why it's happening. This one went away originally after IVIG). Hyper, Another vocal tic, distracted with technology so not eating, starts to think dad is contaminated again.

Day 10 & 11 says "I need your help", fighting over meds, abusive to dog, begins getting agitated and raging,asks "why is this happening to him (again? Help me. I wish I had self control", then bedtime fears, thinks he saw something, separation issues.

Day 12 Wont eat at all, nothing is right, nothing is good enough. Can't make it to therapist. Thank goodness a friend called to come over and he recovered quite nicely, ate late lunch, plays.

I'm walking on eggshells!!!

[3boysmom]

This happened to us at Thanksgiving. DS 13, treating for 3 years as strep only PANDAS. Haven't seen a fever in years and then at Thanksgiving, a one day fever of 102. At first I was happy that he got a fever because I saw it as a positive sign that maybe the IVIGs fixed his immune system and he got a fever like he was suppose to. Nothing appeared to be slipping until about 3 or 4 days later. Then tics appeared for the first time. That is when we moved from PANDAS to PANS. Could not figure out what he was sick with because he never shows sympoms with physical things (like soar throat). Strep and flu tests came back negative. Continued to spiral down until 3 months later Dr. T had us test for Coxsackie Virus and that was what was wrong. Valtrex has helped but we are now looking into PEX. Not trying to scare you, just if your DS continues to backslide, then there could be a hidden infection besides strep or the normal stuff.... Or it could just pass... Fingers crossed.

Edited March 15, 2013 by 3boysmom

[pr40]

Can someone, please, try to explain the alternative fever? I understand that fever is a sign of a strong organism.

I don't follow the cytokine thing because "Cytokines are integral and implicated in all angles of the cascade resulting in the systemic inflammatory response syndrome and multi organ failure associated with this intra-abdominal catastrophe."

So, how and why do cytokines stop PANDAS symptoms? (this happens to our ds5 too)

Edited March 15, 2013 by pr40

[smartyjones]

pandasphilly -- you're breaking my heart!!! how is he today? are you doing ibuprofen?

 

 

3boysmom -- are you saying 3-4 days after he recovered, or 3-4 days after onset of illness? did you do any ibuprofen right when you saw symptoms? you say you were treating as "step only pandas" - what were you doing for treatment? why are you looking into PEX instead of IVIG?

Edited March 16, 2013 by smartyjones

[Pandasphilly]

Hi smarty,

Yes I'm continuing ibuprofin. How is your son doing?

 

For us The face and eye tics are getting worse & so exhausting. IViG originally relieved this so i may just schedule that again soon after I get results on viral tests. It's the mood swings, rigidity and rage that are killing us both. The remorse he feels afterward is heartbreaking. I'm not yet seeing signs of anxiety and panic attacks so that's good.

[3boysmom]

pandasphilly -- you're breaking my heart!!! how is he today? are you doing ibuprofen?

 

 

3boysmom -- are you saying 3-4 days after he recovered, or 3-4 days after onset of illness? did you do any ibuprofen right when you saw symptoms? you say you were treating as "step only pandas" - what were you doing for treatment? why are you looking into PEX instead of IVIG?

 

3 or 4 days after the one day fever was gone (and we thought we missed the bullet) is when we heard the loud vocal tics. At that point we thought his problems were only triggered from strep and he was on Augmentin XR 1000 x 2. We are looking into PEX because we were approved by insurance for one year of IVIG and so we flew every 8 weeks and did 7 of them. He got better with the first 2 but always slipped and then just kept getting worse with all the others. Found a new doctor that tested for a lot and found a ton of different infections. He spent the summer clearing one infection at a time and DS was doing great until the coxsackie virus. This doctor is not a "PANDAS specialist" but very smart and has been following Dr Sweedo and her work since her start. He is A bigger fan of PEX, and so we will begin to learn more about that option and get ourselves educated before deciding. Dr. L actually wanted us to go the PEX route 2 years ago but we did IVIG with Dr b instead.

 

Any thoughts on PEX?

Linda

Edited March 17, 2013 by 3boysmom