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I'm positive my daughter is a Pandas kid. On the first day of school, she left the house as one kid and came home another child. I took her to a regular therapist, and I asked her if she thought maybe she had OCD. The lady said no and really did'nt take it seriously. I then took her to our family doc who was sure she had OCD and prescribed 25mg of zolof and helped me find a good therapist and psychiatrist. After one meeting with them, they told me about a clinic that specializes in children with OCD, and that is the best place for her. She now goes 4 days a week for 2 1/2 hours a day. After spending day and night on the net trying to learn as much as I can, I'm sure she has pandas. I sent an email to my doctor who called me and ordered the strep titer test. He said it is high 264 and that is after 7 or 8 weeks of when my daughter started. My doctor thinks Pandas is possible and prescribed Keflex for 10 days twice a day 500mg. Then he told me that he would let me have 10 more days for her and that was it. He said Pandas is out of his spectrum.

 

Does the dosage sound right?

 

Is there anyone else here from SW PA?

 

While the clinic is a fantastic place for help, they will not go in the Pandas direction as far as medication. But at least they are teaching her ways to deal with the OCD.

 

Where do I go from here?

 

I need help. I'm so beside myself right now.

 

Any help or info is greatly appreciated.

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Welcome,

 

I'm sorry that you're going through this - but you've found a very supportive group here that is a wealth of information. The sudden onset of symptoms does sound suspicously like PANDAS. Has she any other symptoms? Seperation anxiety? Rages? or is it just the OCD?

 

How has she responded to the Zoloft? Our son has not been placed on any psych meds, however, many parents on here have noted that these types of drugs often don't work, or may make symptoms worse in PANDAS kids.

 

As for the abx - in our case, we have been on abx since January, with a rapid improvement immediately, follwed by a slow and steady climb back to normal (about 85% of the way there!) I would consider contacting some of the specialists on this board - there is a list pinned in the helpful threads posting at the top of the forum. There might be a PANDAS friendly doctor in your area, however, some of the top practitioners are in NJ, CT and MD - which wouldn't be too far of a stretch for you from SW PA. I think there might be some others on here from the Pittsburgh area - hopefully they'll chime in soon.

 

Welcome!!

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Is there anyone else here from SW PA?

 

Oh, jeez, Pittsburgh, you're s----d. I've been following this blog a long time and wondered if ANYONE in Pittsburgh would get Pandas and they don't. My wife's family is from there and I think about us moving there one day and no one knows about it! Children's Hospital thinks PANDAS is bunk! :angry: Where's PA Mom?

 

Best thing to do, call Dr Kovacevic's office in Illinois, do a phone consult. See what he can recommend for you fast. Dosage for what you have is fine but you need to try and get high dose augmentin, possibly xr, or zithromax or even Clindamycin in case your daughter (265 is not that high but it suggests possible carrier to me) is a carrier.

 

Good luck, you also may have to bring her to the East Coast if things get bad. Dr Bouboulis is in Connecticut. He takes a lot of insurance and knows his stuff.

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While it stinks your child probablly has PANDAS, I think it's great your doctor is open to start treatment and admit it's out of his league. Hopefully he'll be willing to at least cooperate once you are in the hands of an expert.

 

I am not a medical expert by any means, but I wonder about the Keflex prescription. It seems to me most people are haveing success with Zithromax or Augmentin. But at least she's on something. I think you should know within a couple of weeks at the most (and maybe/hopefully a lot earlier) if it's working.

 

Any people out there using Keflex successfully?

 

Look at the FAQ in the helpful threads section of this board or on www.pandasresourcenetwork.org. There is discussion about they type of antibiotic on there.

 

Kara

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Did your doc do a throat culture or just titers on your dd?

 

#1 I would rec. gettting throat cultures on all family members. Our younger dd is a strep carrier (gets strep w/out symptoms, but cultures positive) and our PANDAS dd reacts if she (or another family member) has strep.

 

#2 Check out these 3 interviews. (You can even load them into an ipod.) I think Dr. Latimer's was my favorite in terms of "intro" stuff...so you might want to start with that one. http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

#3 Here is a list of FAQ for PANDAS http://www.latitudes.org/forums/index.php?showtopic=6266

 

#4 Don't be disuaded if your dd doesn't improve on Keflex, it works for some, but not all.

 

#5 You might try advil (regular dose) for a few days, to see if you notice a difference. It helps some kids.

 

Good luck!

Edited by EAMom
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Wow! You all sure are helpfull! I'm about 15 min from Pittsburgh. The family therapist at the OCD clinic gave me the names of two doctors who are working with Pandas at Childrens Hospital. Dr. Martin and Dr. Roberto Ortiz. She also said they are planning to work with the clinic and the Pandas kids there.

 

Separation Anxiety: She is attached to me non-stop. She also has lost the ability to write. And for the first couple weeks she did have a tic that she tried to cover up. She was walking and turning her head to the left while grimancing. We were at a festival where there would be kids she knew, so I know it was not being done on purpose. She sometimes does it in the car when we are going somewhere too. she had so many things going on that everything is starting to blur for me.

 

Honestly, I'm not exactly sure what test he did. He drew a tube of blood and said thats what the titers were.

 

The doctor that does phone consults: does he also prescribe meds? Or does he just tell me what to ask the doctor for? My doctor pretty much told me that I would have to find another doctor. But at least he did run the test and give us the keflex. I'm not really seeing any progress with the zolof. But it is only 25 and I would like to keep it at that if possible. Today will be day 5 and in some ways I think she shows improvement, but definatley not with the separation.

 

After the first two weeks, she was so bad off that she started screaming for us to take her to the hospital to get her better. So, we did. The doctor there told us that she must have been watching a tv show called OCD cause the poor kid was doing things that adults who have never had treatment do. I told her we did'nt have that kind of cable and she only watches tv where we are at. I was so mad.

 

My sister lives in Rhode Island so CT is a good possiblity. She would help me get there.

 

Is there a difference in the way Pandas is treated if one is a carrier? Could the fact that I had Rhuematic fever about 25yrs ago be the cause of this?

 

Sorry for so many questions, but I really do appreciate your kindness and help.

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Is there a difference in the way Pandas is treated if one is a carrier?

Not that I know of, but I wonder if carriers need stronger antibiotics/more aggressive treatment b/c their immune system doesn't mount a response to the strep?

 

Could the fact that I had Rhuematic fever about 25yrs ago be the cause of this?

 

This would be good to mention to whatever PANDAS specialist you see.

This demonstrates a genetic susceptibility of strep triggered autoimmune diseases.

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Advil: once a day? Is it ok to give along with zolof and keflex? Or should I wait till she is done with the Keflex?

If not, I will give it a try starting tomarro!

 

We only give it once a day, but we give it long term (along with Azith. and low dose of prozac). If you are giving it short term (a few days) 3-4 x daily should be okay (like you would if someone has the flu.) When our dd was bad, we saw improvement within 45 minutes of advil.

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My DS 8 has been on keflex 250mg twice a day since August, when diagnosed, and has been doing well on that. The Dr eventually wants to put him on keflex 3/times a week as maintenance for strep prophylaxis, but I'll be a bit nervous then as don't know if it will hold him. We'll see!

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