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Looooong Exacerbation


SurfMom
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DD15 is still going full throttle on her exacerbation that started the first week in Nov. Her doctor at Rothman (Rempfer whom I do not recommend for other reasons) seemed think this is more the norm than the exception.

 

My sense is that if she is still moody all the time, never happy, ticcing, ADD, has trouble processing and has sensory issues....we are not hitting on the right treatment and that we should be seeing at least some measure of improvement.

 

She was completely asymptomatic after a ten day course of amoxicillin 875mg and 12 days later she was exacerbating again with a no response to amoxi, azyth or now Cefdinir. In all this I am also growing increasingly concerned about jumping from one abx to the next.

 

Thoughts?

Edited by SurfMom
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Hi Surfmom-

 

sorry your daughter is suffering....

 

I cannot speak for your daughter- but my kids do not seem to get over a full blown exacerbation without immune modulating treatment (ie steroids). Have you tried a steroid burst? Others use IVIG, or in more extreme situations pex (both of my girls had this also).

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Sorry she is struggling. Was the 10 day course of Amox to treat strep? Did she first develop PANDAS in November? It wasn't clear from your post. Did Rothman end up doing the Lyme and coinfection testing? I remember you posted about joint/muscle pain a while back and were going to look into that more. My son never waxed and waned - he had a sudden severe onset in 2009 and never got better. We have been slowly but surely working our way out of the pit since we started Lyme treatment in 2010. He still struggles with some anxiety, especially around school, but has lost many of his other symptoms. I'm sorry I can't give you much advice. It would help if you shared her complete story, and then I think you'd get a lot of feedback on what you might try next.

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Sorry she is struggling. Was the 10 day course of Amox to treat strep? Did she first develop PANDAS in November? It wasn't clear from your post. Did Rothman end up doing the Lyme and coinfection testing? I remember you posted about joint/muscle pain a while back and were going to look into that more. My son never waxed and waned - he had a sudden severe onset in 2009 and never got better. We have been slowly but surely working our way out of the pit since we started Lyme treatment in 2010. He still struggles with some anxiety, especially around school, but has lost many of his other symptoms. I'm sorry I can't give you much advice. It would help if you shared her complete story, and then I think you'd get a lot of feedback on what you might try next.

 

 

This is my feeling, too. I suspect you are not treating all the infections. Since this is autoimmune, these kids tend to have more than one infection. I would definitely look into lyme and co-infections, but remember that the Quest/Labcorp WB are only about 50% or so accurate, so if they come back negative, there's still a 50% chance it may be wrong. I would also look at the possibility of staph, candida, c-diff, h-pylori, and viruses, as well. Are you treating the gut? Dr. Cunningham has repeatedly said that the gut is the 2nd brain, and you have to treat it properly.

 

Once we found lyme, bartonella, babesia and erlichiosis (none tested positive at first, but he did have the bart rash that we didn't know was anything more than stretch marks), and started treatment, the flares got much shorter, and we have way more better days than bad days.

 

Although steroids do help in the short term, my concern is that IF you are dealing with lyme and co-infections (which I'm not saying you definitely are...just 'if'), the steroids will make it worse, as they feed those bacteria. But, if you aren't already, I would consider using some ibuprofin temporarily to relieve inflammation, and then get some of these other tests done.

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DD15 is still going full throttle on her exacerbation that started the first week in Nov. Her doctor at Rothman (Rempfer whom I do not recommend for other reasons) seemed think this is more the norm than the exception.

 

My sense is that if she is still moody all the time, never happy, ticcing, ADD, has trouble processing and has sensory issues....we are not hitting on the right treatment and that we should be seeing at least some measure of improvement.

 

She was completely asymptomatic after a ten day course of amoxicillin 875mg and 12 days later she was exacerbating again with a no response to amoxi, azyth or now Cefdinir. In all this I am also growing increasingly concerned about jumping from one abx to the next.

 

Thoughts?

 

 

If she was "completely asymptomatic" after an intial 10 day course of Amox. that is very encouraging --

if it was me, I'd be doing just what you are, asking re: the dose and type of antibiotic, and trying it.

 

I think it helps to work up a plan for the next 6 months though, in case IF what you are doing does not help, so you have an action-plan of what will be done next.

 

W/ the doctor, perhaps sketch-out a timeline as to when to move to one of the stronger treatments, so it does not linger and steal time from her life. just my opinion.

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To clarify, DD15 had her first exacerbation in late October, started treatment Nov. 5 and was clear by the 15th. We are adding Motrin but has been ineffective as far as we can tell.

 

I too think there could be something else going on. We have a whole new round of testing on Monday. Of note she did have the most extensive testing for Lyme with negative results but I am not one to give up and will readdress that possibility if we still have no answers. Beyond the classic symptoms, the joint pain, significantly reduced speech and cognitive processing are nagging symptoms that have her coloring outside the PANDAS box and I want to get to the bottom of it..

 

It is excellent advice to recommend a six month plan and that suggestion went on the list as soon as I read it.

 

We have been waiting on the steroids but that looks like the next best course of action, thank you.

 

YES, having received the treatment we did, we will be pressing to see Dr. M. We have been extremely fortunate to be working with an excellent family doctor and a local pediatric neurologist locally so it came as quite a disappointing surprise to have such a poor experience at Rothman.

 

And Tmom, it was encouraging that you saw her being back to 100% as encouraging, lol. Right now the threads I am hanging onto to stay positive are few so that little lifeline got me back to holding on with a vengeance.

 

For those who have had testing done outside Rothman....do they call you with an official diagnosis and treatment plan when they have the final tests and have compiled the data or will the onus be on me to call and set that up?

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I feel that we are in the same situation at our house. DD has been diagnosed with Bartonella. We did treatment for quite a while until we hit a plateau. Because we have been in such a long exacerbation, we just started DD on steroids for the first time in 3 years. We saw an immediate improvement in her but then the symptoms returned. It turns out that her sister (a strep carrier) has active strep right now. I am praying that the benefits of the steroids will return now that we are treating her sister again. I share this in case something like this could be true in your household as well.

 

I'm scared to think about how the steroid treatment will affect the Bartonella but our household was at breaking point so we gave in and tried the steroids.

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Surfmom I would recommend testing with Igenex for Lyme and co infections since you are not seeing progress, Lyme Literate doctors generally consider the following bands + clinical symptoms indicative of Lyme: 18,23,30,31,34,39,83 and 93. One band, IGG, IND or IGM, is considered significant. Most doctors, even most PANDAS doctors, would call a test for example with only one of these bands negative because they are not experienced enough with Lyme, however that result + clinical symptoms would be considered positive by many LLMD's. The only labs that test for all of these bands are Igenex and Stonybrook, and for Stonybrook the order needs to specifically reqeuest "show all bands". Quest/Labcorp testing is insufficient, though my daughter did test CDC positive with a Lyme indicative band on Quest, many do not because Quest only tests for a few strains of Bb. Bartonella also frequently tests negative. Do you have a cat? They also carry Bart. When my DD was first dx'd amoxicillin relieved her symptoms, which then came back with a vengance when she finished the course. Also to mention I can't recall what your testing for Mycoplasma was. Dr. B considers IGG>5 indicative of active infection, and Myco can cause joint pain too. MyDD has this ongoing as well. Good luck i hope you see results soon.

Edited by Hopeny
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Some other things to consider that might give you clues: Is anyone else in your family sick, even if symptoms are mild? Has everyone been tested for strep? Did she have mild or subclinical symptoms before October and then had a dramatic worsening? Or was she completely "normal"/healthy until that moment? Have you tested your house for mold or done the HLA test on her for susceptibility to mold toxins(also looks at susceptibility to Lyme toxins)? Mold toxicity has very similar symptoms to Lyme, and therefore PANDAS.

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Just keeping you all posted hoping it will help others down the road....

 

DD15 is still in her exacerbation, nine weeks and counting, for the most part mute, unable to do schoolwork, ticking, insomniacal, moody.....

 

She will be on week two of Cedfinir on Monday. Symptoms worsened cognitively this week.

 

Seeing the neurologist on Tuesday and should have more tests back by then.

Edited by SurfMom
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Just keeping you all posted hoping it will help others down the road....

 

DD15 is still in her exacerbation, nine weeks and counting, for the most part mute, unable to do schoolwork, ticking, insomniacal, moody.....

 

She will be on week two of Cedfinir on Monday. Symptoms worsened cognitively this week.

 

Seeing the neurologist on Tuesday and should have more tests back by then.

 

 

These sound so much like the symptoms my DS had. I would definitely consider seeing an LLMD, and testing for bartonella. The fact that you mention moody is a big hint. Also, DS lost the ability to speak several times, and couldn't stop ticking. The other thing to check for is parasites. 90% + of us have them. They don't affect everyone, but they do affect many. Does your DD have an stretch marks? That is a symptom of Bartonella, and is actually a rash (they are bright red or purple, because they are filled with blood.) You can see a picture of them on the internet (google "picture Bartonella rash"). They look like cat scratches, and that's why it's sometimes called "cat scratch disease".

 

Worsening of symptoms could actually be a herx...getting worse before getting better, but at the same time, you don't want it to be a severe herx. We've gone slowly for that reason.

 

We are seeing an ART provider now, and I have to say that we are finally seeing some major improvements in just the past few months. She was able to help us figure out what was going on, too, as well as treating. If you want more info, you can PM me. Good luck figuring this out. I know how frustrating this is, and am praying for you all.

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Just saw your post re: mute most of the time.

 

If you look back at the history of a number of us -- my d included, this is similar to many.

 

We finally saw a neuro who suggested a steroid burst -- we also consulted w Dr K by phne and with the local neuro we did the burst and antibiotics full strength. She had an amazing recovery -- I strongly encourage you to consult with one of the PANS treating doctors--at least by phone, better in person for an eval. asap

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Just saw your post re: mute most of the time.

 

If you look back at the history of a number of us -- my d included, this is similar to many.

 

We finally saw a neuro who suggested a steroid burst -- we also consulted w Dr K by phne and with the local neuro we did the burst and antibiotics full strength. She had an amazing recovery -- I strongly encourage you to consult with one of the PANS treating doctors--at least by phone, better in person for an eval. asap

 

Ped Neuro appointment on Tuesday. Absolutely moving to this level. Thank you!

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Rempfer from Rothman called this morning after letting his nurse know last week that she was really going downhill. We are back trying a longer prescription of Azyth with a follow-up Ekg in a week or so after having her on Cefdinir for two weeks.

 

Here are the results from the tests: no lyme or Lupus markers, no mycoplasma, no allergies...but Flu A antibodies were positive though she is asymptomatic for flu. Could be the flu dragging this exacerbation out.

 

Week ten.....she woke up this morning OCD not wanting to touch the dogs because they have germs. She has tics, poor cognition, confusion, poor processing, irritability, mute.....we are simply stuck with these symptoms.

 

Here is my (current) theory regarding her PANDAS:

 

DD is adopted from Russia and while there is some belief that vaccines may be related, I think she developed the immune system of an army when she was a baby having been exposed to so many illnesses so early in life. She had chicken pox for sure, was exposed to TB and my guess had at least one high fever. From the time she was adopted at age three until age fifteen, she was never sick. Ever. Her ped. records are empty which stunned her doctor when the PANDAS presented itself. No fevers, vomiting, flu, bronchitis or presentation of strep or any other illness ever.

 

Then, back in March '12 she gets the strep strain from heck...so much so that I get it too and it puts me in bed (I am a runner, athlete, never get sick either) for the first time in my adult life.

 

The result? WWIII in the petite body of a 15 YO girl; DD had an immune system that could take on a nuclear attack....and then she got the atom bomb of all strep infections. The two world powers went at it head to head with battles ravaging her system....in October another strep exposure fires up PANDAS for the first time. Now we have to see how long this goes on, try to settler her immune system down and do everything we can to get the remaining strep under control.

 

Just a theory...but aren't they all!

 

Neuro appt. tomorrow. Going to discuss steroids and tonsil and adenoid removal as possible options.

Edited by SurfMom
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