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Going Into Battle Today: Advice?


SurfMom
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Heading to the doctor today with DD 15, second exacerbation in four weeks on second round of amoxicillin 875 mg. She had complete remission of symptoms with the first exacerbation after six days of amoxicillin though we treated her for ten.

 

Here is what I am pushing for/asking her primary physician. I would appreciate your comments and suggestions as we are being squeezed in early this afternoon and I want to go in ready to go. He has seen PANDAS patients and open but not terribly knowledgeable:

 

 

1. Should we try a new antibiotic?

 

2. Should we move on to a pediatric neurologist locally in addition to Dr. M with whom we are currently in the intake process?

 

3. High B12 in CBC....could this be indicative of some other underlying cause?

 

4. Adopted from Russia, request test for TB?

 

5. Being treated based on ASO titers....any other tests we should consider?

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SurfMom remind me please have you tested for Myco and Lyme? Where are you located? If your ped willing to try a combo like augmentin/biaxin?

 

My guess is that your DD was tested for TB during the adoption process, it is required for immigration.

If she had the TB vaccine as a child she likely will have a skin reaction which can result in a very unpleasant course of treatment. My husband had the vaccine and also we later found out has a severe bacitracin allergy, which we did not know at the time, which is found in the TB test. He had a huge skin reaction (same as he had when he got skin tested for allergies to bacitracin) and even with a negative chest x-ray they put him on isoniazid for 10 months which is a scary drug and turned out he was on needlessly. If she is not symptomatic of TB I would leave that one alone personally.

 

Do you know the birth parents history? alcoholism etc? At this stage my guess is that anything from her early years should have shown up by now. However that said maybe worth a consult with one of those MD's who specializes in Russian adoptions, just to cover all of your bases. I looked into Russian adoption once so I recall there were MD's with this specialty.

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Heading to the doctor today with DD 15, second exacerbation in four weeks on second round of amoxicillin 875 mg. She had complete remission of symptoms with the first exacerbation after six days of amoxicillin though we treated her for ten.

 

Here is what I am pushing for/asking her primary physician. I would appreciate your comments and suggestions as we are being squeezed in early this afternoon and I want to go in ready to go. He has seen PANDAS patients and open but not terribly knowledgeable:

 

 

1. Should we try a new antibiotic?

 

2. Should we move on to a pediatric neurologist locally in addition to Dr. M with whom we are currently in the intake process?

 

3. High B12 in CBC....could this be indicative of some other underlying cause?

 

4. Adopted from Russia, request test for TB?

 

5. Being treated based on ASO titers....any other tests we should consider?

 

Maybe ask about getting on a prophylactic abx like zithromax once she is better to try and head off future episodes.

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Skip the skin TB testing. You are likely to get a positive result since she most likely had the BCG vax shortly after birth. If you are concerned about TB, have a chest xray done.

 

Ask for augmentin or azithromycin.

 

Draw titers for mycoplasma. You'll want IgG and IgM.

 

Have western blot done for lyme, for starters.

 

If your ped will help you, you are ahead of the game. You can see a neurologist but don't expect a lot from them, that way, if they help you, you'll be pleasantly surprised and if they don't, you won't be disappointed. I've gotten absolutely no help locally. That is typical of many, if not most of us here on this board.

 

My DS was adopted from Russia too. This disease has absolutely nothing to do w/ it and don't let any doctor drag you down that path. It will keep you from getting proper treatment. I can't imagine, at her age, this has anything to do w/ her adoptive status.

 

 

Ten days of antibiotics really does very little to head this disease off. She is likely going to need it on a long term basis. We are now over two years of daily abx and see years ahead, as well. My DS will be 9 this month.

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SurfMon,

 

I'd try to get a 30 day prescription for either augmentin or azithromycin. I wouldn't worry about the high B12 as long as the rest of the CBC is fine--can occasionally be elevated in liver disease or leukemia, either of which would resulted in other abnormal CBC value, but generally high levels are fine. B12 that the body does not use is excreted through the urine so there are no ill effects owing to build up in the body.

 

Would agree with skipping TB test or just doing chest Xray if there is concern. It is funny how people react to drugs--I was found to have inactive TB at age 18 and took Isoniazid for a year and, unlike Hopeny's DH, noticed no adverse effects. Of course unlike him I actually had inactive TB--as seen in chest Xray that followed the TB test.

 

Ko's Mom

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Excellent advice all around, thanks so much. We were already versed enough to request the chest x-ray. The concern was that her twin brother had TB as an infant so our thinking was that if she had lesions on her brain, this could be an issue. Long story short, no TB.

 

What was particularly great was that I had my I-phone with this thread pulled up and used it as a springboard for my questions. The doctor was more than willing to test her for the additional antibodies and screenings. We will soon have answers to Lyme, Micoplasma titers. He even ran a urine test just to be sure since she wet the bed last night.

 

We are taking amoxicillin for two more days to round out the course and then will be starting with azythromycin. After that we will meet to get her on a course of prophylactic antibiotics.

 

Even better, he asked us if we were willing to wait while he got on the phone to get us set up with a local neurologist, knowing that by making the call and explaining her symptoms he might have better luck at expediting an appt. Amazingly, he did this for in a squeeze-in appointment.

 

I think the only thing that kind of made my heart drop was when he stopped me and wished me luck, said he would see us in a couple of weeks after the course of new abx, to call us any time but that there was nothing more he could really do.

 

Great job everyone!

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Sorry Surfmom not to complicate matters but the regular Lyme tests are not accurate, you need to send to a special lab. My daughter fortunately tested positive with Quest but most people send to either Igenex or Stonybrook. The reason is that Quest/Labcorp tests for something like 20 strains of Lyme while the others test for 30. In any case it may be helpful, there's lots of info on the Lyme board but if doctor says test is negative just make sure you get a copy. You would really need to see an LLMD (lyme literate medical doctor) to rule Lyme in or out.

The bedwetting is another sign of PANDAS, my DD wet the bed several times when she had the major exacerbation, she had not done that since she was maybe 5. It will be helpful for you to gague exacerbations now that you know this is a symptom.

By the way have you checked the Saving Sammy Facebook page? Beth Maloney keeps a list of PANDAS friendly doctors across the U.S. In our case the neurologist we saw was very kind but not a long term solution. You really have to find the right type of neurologist or you will be wasting your time and $400.

You may want to post all the results when you get them to get feedback, doctors not well versed in the tests may not be entirely sure how to read them.

Thankfully you have a bridge doctor who can get you there. Personally if an abx was making my DD worse I would drop it and switch.

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