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Abx for one year--now what to expect?


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Hi. The visit with the Rheum. went better than expected. He is a young guy who fortunately for us saw a "true Pandas" case when he was in med school. He did state that it does exist and is a real disease through rare. So, it sounds like we are off to a much better start than most of you have encountered.

 

He ruled out arthritis, wouldn't say much about RF, thinks it may be glomerulonephritis, did find a heart murmur that wasn't there before, and said that some of her symptoms are consist with Pandas. He is rechecking her ASO & Dbnase (?) We are going back for a EKG, Echo, and MRI. What ever he saw in her history was enough for him to give her abx for a year without our asking (great but scary!). The RX is for Pen Vk 250mg twice daily.

 

I didn't get the impression that he would be quick to say yes she has Pandas, sounded like he wanted to see what the MRI showed first.

 

So, my question for those who you who have already been through this is...What do we need to know/watch for/anticipate now that she is on abx for the next year? Probotics? Yeast infections? Constipation? Can she still have Pandas episodes?

 

Also, from the small amount of research I've done I've been led to believe that MRI's can often miss Pandas? Have your kiddos had MRI's and what were the results?

 

Sam

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Hi Sam,

 

My daughter is five and she is not currently on antibiotics. Knock wood, she is doing ok for now. We haven't had an MRI, but we did do a CT scan. That said, I had a phone consult with Dr. K yesterday and he said that it was fairly common not the pick up the brain swelling with CT scans. I have heard that about MRIs as well. I found it interesting as to what constitutes a pandas diagnosis. He said the following:

 

90% history (acute onset of particular symptoms)

5% positive culture/elevated titers

5% positive reaction to a steriod burst

 

I thought that was very interesting.

 

Hang in there! It sounds like you have found a doctor that will be able to help your daughter.

 

I have read from others that the ibuprofen does help with the inflammation. It may impact the MRI results as well?

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Our dd's MRI was normal. We didn't do a MRI when her symptoms were severe and full blown however (spring 08)...we hesitated b/c we knew we'd have to sedate her to get it done. And then she started to improve on the advil/azith so we didn't bother.

 

We eventually did it Dec 08 when she had been on azith. for 6 mo. She was having some mild symptoms (sister had strep). She wasn't on advil at the time.

 

Lots of PANDAS kids have normal mri's ....however, I think it's worthwhile just to see if there is any enlargement of the BG or other problems (rule out other brain abnormalities). IMO I think it is possible that the advil could affect the results...just my theory though!

 

We've been on Azith daily with no GI or yeast issues. (Her little sister who doesn't get prophylactic abs does appear to have a yeast infection...go figure!) We do give PANDAS dd probiotics.

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Hi. The visit with the Rheum. went better than expected. He is a young guy who fortunately for us saw a "true Pandas" case when he was in med school. He did state that it does exist and is a real disease through rare. So, it sounds like we are off to a much better start than most of you have encountered.

 

He ruled out arthritis, wouldn't say much about RF, thinks it may be glomerulonephritis, did find a heart murmur that wasn't there before, and said that some of her symptoms are consist with Pandas. He is rechecking her ASO & Dbnase (?) We are going back for a EKG, Echo, and MRI. What ever he saw in her history was enough for him to give her abx for a year without our asking (great but scary!). The RX is for Pen Vk 250mg twice daily.

 

I didn't get the impression that he would be quick to say yes she has Pandas, sounded like he wanted to see what the MRI showed first.

 

So, my question for those who you who have already been through this is...What do we need to know/watch for/anticipate now that she is on abx for the next year? Probotics? Yeast infections? Constipation? Can she still have Pandas episodes?

 

Also, from the small amount of research I've done I've been led to believe that MRI's can often miss Pandas? Have your kiddos had MRI's and what were the results?

 

Sam

My daughter has had 2 MRIs, neither of which showed any abnormality- though I don't think the radiologist who read them was looking specifically for basal ganglia issues.

She was initially placed on 250mg of pennVk by a rheumatologist, who did not think she had PANDAS(because titers were not elevated), even though her medical records clearly showed a 2 year history of behavioral reactions correllated with +strep tests and periods of calm correllated with neg. tests. Anyway, the pennVk didn't work very well for her, in fact she still had a couple of +rapid tests while on it. Her pediatrician agreed to switch her to zithromax and that has worked well for her.

Our experience was that you absolutely MUST deal with yeast issues (wish we had sooner). Yeast can bring about a whole host of behavioral by products and it begins to get difficult to sort out what is strep related or yeast related. My daughter is on an antifungal (Nytatin, but used to be on diflucan) + we use S-boulardii. Probiotics seem to make her gassy to the point where its painful, so I've pulled back on them.

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My doctors also recommended screening by a cardiologist, which we did, and was normal.

 

DD's psychiatrist (who is very pandas knowledgeable) told us not to bother with MRI's, catscans and even bloodwork. She felt they often missed pandas, and the titers did not always correlate. We had a REALLY clear cut, sudden, onset with positive strep culture at same time. Therefore, I kind of feel these tests could put doubt on a pandas dx to a questioning doctor if they came back normal. (DD titers came back in the normal range about 8 weeks after onset of exacerbation, and 4 weeks on antibiotics. Her neurologist felt that the trending of the titers was more important than one number. I am hesitant at this time to put her through a blood test again.) That being said, if a case is not so clearcut, it would be a good idea to rule out other issues. DD's neurologist did test for lyme (negative), which I do feel is important.

 

Peglem- I am concerned about yeast. Can you tell me what type of dose of medication your child is on, and exactly what probiotics you use. My dd is five, and VERY picky with food. Right now, I am only giving her a probiotic shake from Robex a few times a week- I am concerned that is not nearly good enough. She has been on therapeutic abx for over 3 mos. We are switching now to zithromax 2x per week (but I am not sure if that will be enough).

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My doctors also recommended screening by a cardiologist, which we did, and was normal.

 

 

 

Peglem- I am concerned about yeast. Can you tell me what type of dose of medication your child is on, and exactly what probiotics you use. My dd is five, and VERY picky with food. Right now, I am only giving her a probiotic shake from Robex a few times a week- I am concerned that is not nearly good enough. She has been on therapeutic abx for over 3 mos. We are switching now to zithromax 2x per week (but I am not sure if that will be enough).

 

We did (sorry can't remember dosage) diflucan (she was already on a high content probiotic from health food store-still got yeasty) once/week for @ 6 months. I wanted to change though, because it seemed like she always had a tummy ache the next day. Right now she takes Nystatin 3x/day. I give her S-boulardii each night before bedtime. So far this seems to be working pretty well.

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How do you know when they are "yeasty"?

 

Well, when my daughter was digging at her privates one day, we went to the doctor. She had a really bad vag. yeast infection. But over time, I came to see that with my daughter (don't know if this is the same for others) extreme hyperactivity-running up and down the hallway really, really fast and lots of extraneous giggling that doesn't correspond to anything is usually a sign of yeast. Strep produces lots of rages and OCD, but sometimes its hard to tell the difference between ODC and hypers...Unfortunately I had a lot of episodes of both that gave me practice in sorting it all out.

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Hi. I'm rejoining the PANDAS board after months away (ds was really low level for about 6 months, so just sort of took a break, but is now pretty high again after a recent (non-strep) infection.

 

We are trying Nystatin for the first time, and I think we are seeing an improvement. He is on 2 million IU for 2 weeks. He is taking the tablets, which are supposedly for intestinal yeast. Is Nystatin supposed to be a long-term treatment, or is 2 weeks enough to deal with this?

 

Thanks!

 

-- Liane

 

Hi. The visit with the Rheum. went better than expected. He is a young guy who fortunately for us saw a "true Pandas" case when he was in med school. He did state that it does exist and is a real disease through rare. So, it sounds like we are off to a much better start than most of you have encountered.

 

He ruled out arthritis, wouldn't say much about RF, thinks it may be glomerulonephritis, did find a heart murmur that wasn't there before, and said that some of her symptoms are consist with Pandas. He is rechecking her ASO & Dbnase (?) We are going back for a EKG, Echo, and MRI. What ever he saw in her history was enough for him to give her abx for a year without our asking (great but scary!). The RX is for Pen Vk 250mg twice daily.

 

I didn't get the impression that he would be quick to say yes she has Pandas, sounded like he wanted to see what the MRI showed first.

 

So, my question for those who you who have already been through this is...What do we need to know/watch for/anticipate now that she is on abx for the next year? Probotics? Yeast infections? Constipation? Can she still have Pandas episodes?

 

Also, from the small amount of research I've done I've been led to believe that MRI's can often miss Pandas? Have your kiddos had MRI's and what were the results?

 

Sam

My daughter has had 2 MRIs, neither of which showed any abnormality- though I don't think the radiologist who read them was looking specifically for basal ganglia issues.

She was initially placed on 250mg of pennVk by a rheumatologist, who did not think she had PANDAS(because titers were not elevated), even though her medical records clearly showed a 2 year history of behavioral reactions correllated with +strep tests and periods of calm correllated with neg. tests. Anyway, the pennVk didn't work very well for her, in fact she still had a couple of +rapid tests while on it. Her pediatrician agreed to switch her to zithromax and that has worked well for her.

Our experience was that you absolutely MUST deal with yeast issues (wish we had sooner). Yeast can bring about a whole host of behavioral by products and it begins to get difficult to sort out what is strep related or yeast related. My daughter is on an antifungal (Nytatin, but used to be on diflucan) + we use S-boulardii. Probiotics seem to make her gassy to the point where its painful, so I've pulled back on them.

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Hi. The visit with the Rheum. went better than expected. He is a young guy who fortunately for us saw a "true Pandas" case when he was in med school. He did state that it does exist and is a real disease through rare. So, it sounds like we are off to a much better start than most of you have encountered.

 

He ruled out arthritis, wouldn't say much about RF, thinks it may be glomerulonephritis, did find a heart murmur that wasn't there before, and said that some of her symptoms are consist with Pandas. He is rechecking her ASO & Dbnase (?) We are going back for a EKG, Echo, and MRI. What ever he saw in her history was enough for him to give her abx for a year without our asking (great but scary!). The RX is for Pen Vk 250mg twice daily.

 

I didn't get the impression that he would be quick to say yes she has Pandas, sounded like he wanted to see what the MRI showed first.

 

So, my question for those who you who have already been through this is...What do we need to know/watch for/anticipate now that she is on abx for the next year? Probotics? Yeast infections? Constipation? Can she still have Pandas episodes?

 

Also, from the small amount of research I've done I've been led to believe that MRI's can often miss Pandas? Have your kiddos had MRI's and what were the results?

 

Sam

 

 

Sam--

This is the first time I have heard of another pandas kiddo possibly having glomerulonephritis. My dd had it at age 3 and I have often wondered about the correlation, especially since both glomerulonephritis and pandas are autoimmune responses. What symptoms did your dd have which made the doc think glomerulonephritis? My dd's symptoms were FRANK blood in urine (I mean, pure tomato juice looking urine, which later turned to looking like red kool aid and eventually cleared up over a period of 6 weeks---- all occuring just days after a fever and gastro symtpoms (negative titers for strep!). My dd also had a murmer and an abnormal EKG (left ventricular hypertrophy, and more) with negative findings with an ECHO of the heart??

 

As far as the answers to your questions go...my dd's MRIs did not find anything at all. My dd did have a spect scan which showed inflammation in the basal ganglia indicative of OCD, but then we already knew she had OCD. As far as antibiotics go, my child had IVIg in November 08 and I expect her to continue to have antibiotics prophylactically for a very long time, probably past high school. At least that is what I am going to push for. My child rarely needs probotics, oddly enough. At first she did but now it doesn't really seem like she needs them. I might give a dose every few weeks and occasional yogurt.

 

Good luck to your family.

Regards,

Amy S

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Amy,

 

She had several urine quick dips that all came back showing white blood cells. It seemed to be a red flag for the Rheumy. All of her blood work came back showing normal kidney function so the glomerulonephritis has been ruled out for now. I assume you know that glomerulonephritis is also caused by strep?

 

She has an EKG & Echo scheduled for this Friday. From your reply I can't tell if your dd had an abnormal Echo?? Was she dx with Carditis (also caused by strep) or Rheumatic Fever?

 

What is a spect scan??

 

Great to hear that she is able to get by without taking all kinds of supplements. We are thinking of doing IVIG this summer. I would love to hear more about how it has worked for your dd.

 

Sam

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