Bump in the road...we had a relapse

[kim]

bronxsmom,

 

I will pm you or start a new thread when I have a chance. I don't want to sidetrack mommd's tread in anyway.

 

Mommd, I too am so sorry to hear of the bump you have hit.

[KeithandElizabeth]

Kim:

 

Can you start a new thread? I would love to know more about this!

 

Elizabeth

[mom md]

Thanks everyone for your thoughts and support. When I say "stress" I am referring to immune stress. His brother had the flu and pneumonia, then he had a cavity filled and he had nitrous oxide. It was a big cavity and could not wait. We are going to try to get IVIG, but the immunologist wants to wait and see what the steroids do. His younger brother just went to sleep and has a temp of 101.5. It is like we can't get a break.

I do think three PEX tx are enough but I think the underlying immune issue is still there. Hopefully if you act quickly with steroids it can stop the process.

Dr. Latimer is aware and we are all hoping the steroids will work. He is on 30mg/d x5 days, then a 4 day taper. Given all the illness around us they wanted to see if a short course would work.I have upped his antibiotic also and we are seeing a pediatric infectious disease doctor to get her input in two weeks.

I will check in later.

Thanks

[EAMom]

then he had a cavity filled and he had nitrous oxide.

 

I've always wondered what Nitrous Oxide has to do with all of this. Our dd's had significant ramps in symptoms (b-4 we knew about PANDAS) after tooth extractions (for orthodontic reasons) with Nitrous/lidocaine in 2008...at the time she had strep (we didn't know it) it her throat. So, in hindsight (after we learned of PANDAS/strep) we assumed the ramps were form bacteria being released into her bloodstream. But I do wonder what part the nitrous oxide played in the whole thing.

 

After the diagnosis (many months later) we did have to have 2 more extractions. Things went well (we doubled up on abs) but I still noticed that my dd got a little "weird" (anxious, irritable) shortly after the procedure (not long lasting). I didn't know how much was stress vs. the nitrous oxide vs. other elements.

[Betty04]

Thanks everyone for your thoughts and support. When I say "stress" I am referring to immune stress. His brother had the flu and pneumonia, then he had a cavity filled and he had nitrous oxide. It was a big cavity and could not wait. We are going to try to get IVIG, but the immunologist wants to wait and see what the steroids do. His younger brother just went to sleep and has a temp of 101.5. It is like we can't get a break.

I do think three PEX tx are enough but I think the underlying immune issue is still there. Hopefully if you act quickly with steroids it can stop the process.

Dr. Latimer is aware and we are all hoping the steroids will work. He is on 30mg/d x5 days, then a 4 day taper. Given all the illness around us they wanted to see if a short course would work.I have upped his antibiotic also and we are seeing a pediatric infectious disease doctor to get her input in two weeks.

I will check in later.

Thanks

 

Sorry to hear you are having such a difficult time. I think we all can empathize and I hope you get your well deserved, HUGE break soon!

[bubbasmom]

I REALLY think my son had H1N1 following strep, only his H1N1 test was negative. But my nephew's was positive and they were together all Labor Day weekend, got sick 24 hours after my nephew and had identical symptoms. My son's strep test and strep cultures were both negative. But sure enought the PANDAS was triggered. Once we knew we had PANDAS again, we had the titers done, and they were high so it showed he did indeed have strep even though both rapid and culture were negative.

I have also read about kids getting PANDAS triggered (not their 1st episode, but subsequent episodes) by virus.

Who knows!!!!

 

We were almost 4 months post-PEX and I was just thinking we had this thing behind us. I got a call yesterday from school and my son was "out of control". It was all the old things from before. She took him outside and let him walk a little and then after about an hour he was back to his old self. I rushed him in and his strep culture (rapid and culture) were negative. His ASO is up to 500. It was 1750 when we started this nightmare and droppped to 950 with antibiotics. We were under 100 after PEX. He is on azith 250mg qd and what scares me is that he tests negative for strep. My guess is stress caused this. My husband said he saw it coming. The last two weeks he had seen a few issues sporadic issues that made him worry. My other son had H1N1 and pneumonia two weeks ago.

We started him on steroids yesterday and he was still disrutive today but better and not "out of control". Our new immunologist handles the issue quickly which gave me some comfort. I am trying to focus on the positive. We spent 2-3 years not knowing what was wrong with our son and now we do. Also, he does seem to bump his ASO with symptoms which I know it is not the antibody that is doing the damage but at least it is a tangible something the doctors can see. Also, there are treatments that work (they just are incredibly expensive and hard to get!) The immunologist wants us to do IVIG and we are going to work toward trying to get it paid for. Any tips? BCBS picked up the PEX tab but they may say enough is enough.

As I told my husband too, this is our new "normal". It will never be like it was before.

[dcmom]

I think I have seen somewhere (on this forum?) that sedation can possibly affect the blood brain barrier? My dd had an exacerbation after T&A- this is one of my possible theories of what caused it. I am also fearful of an exacerbation after pex because of the sedation at the beginning of the process. Hopefully these episodes will be short term because only what antibodies are still hanging around have a chance to get to the brain- new ones are hopefully not being made.

 

Mommd- I wonder if the nitrous oxide opened his bbb enough to cause an episode. I am sure there are still some antibodies hanging around after pex- hopefully this will be short lived, and he will continue on the road of healing.

 

My dd has a dental appt in a few weeks. She hasn't been in a year (cancelled a few appts during exacerbations- couldn't imagine getting her there then). I will have them look for issues, maybe xray- but not touch at all unless really necessary. Keeping my fingers crossed there are no dental issues. EA mom- did you just double the abx dose the few days surrounding the dentist?

[mom md]

I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't!

[EAMom]

Yup...what we actually did was add amoxicillin (which we had leftoevers) to our azith.

[EAMom]

I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't!

 

Hmmm....interesting.

 

How long b-4 the flare was the dental procedure?

 

Is it possible that the PEX lowered the ASO artificially and it would have gone up in the weeks post PEX anyway...so maybe the whole ASO rising is a red herring (in this situation).

 

Was the flu shot the injection?

[sf_mom]

It seem like you are really on top of things and managing the PANDAS symptoms well. Please keep us posted as I think you'll see success with everything you have done.

 

I upped my son's antibiotic for 14 days when his brother and sister got the flu...... I am now lowering dose slowly to see if things change.

 

What does everyone do, when a tooth falls out? Our son is about to loose a front tooth. I can't help but think there will be an exposed hole in his mouth until the his permanent tooth comes in.

 

-Wendy

[thereishope]

The exposed hole seals up pretty quick with a thin layer of gum or something. Luckily, my son lost 4 teeth (3 during exacerbation) and didn't have a setback when losing them.

 

What does everyone do, when a tooth falls out? Our son is about to loose a front tooth. I can't help but think there will be an exposed hole in his mouth until the his permanent tooth comes in.

 

-Wendy

[faith]

QUOTE(mom md @ Oct 24 2009, 11:20 AM)

I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't!

 

 

 

mom md - do you mean here that if the flu shot were to cause any problems for someone, that it couldn't be that soon?

 

 

Faith

[mom md]

My guess is yes. The flu shot takes two weeks before the antibodies are produced. The ASO generally takes two to three weeks to rise. We started seeing subtle things a few weeks ago when my other son got sick with pneumonia but no real problems until Thursday. I will never know what caused it but I think the flu shot was not smart because I can't say that did not contribute. I really don't know. Maybe I should not of had the cavity filled either but after reading about someone who relapsed from an abcessed tooth I was scared not to because it was a big cavity. Now we are seeing so much hyperactivity from the steroids I can't say even what I am seeing now. Once this all settles though I am going to talk to the immunologist about trying to get the IVIG. Shaesmom said her daughter has PANDAS, severe allergies, and failed vaccines and got it. We have failed vaccines and have severe allergies too.

QUOTE(mom md @ Oct 24 2009, 11:20 AM)

I did also want to mention that we had the regular flu shot 36 hours before the big flare. I do not think though that this was the cause. The ASO titer takes several weeks to rise and the flu shot take 2-3 weeks to build up immunity so I doubt they are connected. I would though recommend not to do it like I did because it clouds the picture. My immunologist though and Latimer said he needed it though because he is "immunocompromised". Damned if you do and damned if you don't!

mom md - do you mean here that if the flu shot were to cause any problems for someone, that it couldn't be that soon?

 

 

Faith

[Suzan]

Maybe I should not of had the cavity filled either but after reading about someone who relapsed from an abcessed tooth I was scared not to because it was a big cavity. Now we are seeing so much hyperactivity from the steroids I can't say even what I am seeing now. Once this all settles though I am going to talk to the immunologist about trying to get the IVIG. Shaesmom said her daughter has PANDAS, severe allergies, and failed vaccines and got it. We have failed vaccines and have severe allergies too.

 

We are supposed to go on the 29th to get a cavity filled too, I'm very scared of that as well. I wonder if we should cancel it but the cavity is growing quickly. I'm keeping my fingers crossed that we will both be able to get IVIG due to exactly what you have stated.

 

Susan