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Hi,

we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

 

Deanna

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I am happy to hear your appointment with Dr. Latimer went well. Our appointment to meet her is on Friday. We are waiting on my son's results from the Cunningham test, so I'm thinking she may want to wait before putting him on steriods. It helps to know your experience was positive. Thanks for sharing.

 

Ellen

 

Hi,

we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

 

Deanna

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Hi,

we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

 

Deanna

 

Someone correct me if I'm wrong, but I think that Dr Latimer supports using steroids for extended periods of time. Dr K doesn't like that, see his website where he writes:

 

"Just the fact that the "steroid burst" (used to test possible future effectiveness of IVIG) tend to control PANDAS symptoms effectively brings it into consideration as a possible treatment for PANDAS. Since the short-term steroid treatment only controls the symptoms temporarily and the prolonged use of it may have rather serious side effects, corticosteroids have not been (and should not be) used as a treatment in PANDAS."

 

Thats why Dr K and others only suggest a 5 day steroid burst. Do some more research about long term effects of using steroids for an extended period of time.

 

Try http://ibdcrohns.about.com/cs/prescription...dprednisone.htm and http://www.medications.com/se/prednisone

 

I have full respect for Dr Latimer and I have an upcoming appointment with her, but every parent should still do their research

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I'm not sure what you consider "extended" use of steroids....but yes she is willing to use them for about a month...in our case she extended the use up to six weeks.

 

I also looked up the side effects on the internet...boy was I scared! When I brought up the side effects of prednisone with Dr. Latimer, she said those side effects usually occur if you are going to use them for several months.

 

Steroids are currently handed out for short term use for all kinds of things...asthma, allergies, rashes, etc...

 

As with all medications and treatments, the risk vs. benefits must be weighed. In our case, our daughter has been returned to us, and because this is her first episode, we may not even need to go down the IVIG or Plasma exchange road.

 

My husband and I felt that we would try a longer course of prednisone, and see where that leads us. For our situation, it seemed more prudent to try medication before we pursued the other treatments.

 

I think what it really boils down to is this:

 

Dr. K uses the steroids to diaganose PANDAS, and to see if IVIG will work. He believes after that IVIG should be the next step.

 

Dr. Latimer uses the prednisone as a treatment to bring a PANDAS episode under control because it addresses the brain inflammation, and supresses the immune system. She did tell us that if our daughter didn't return to 99%-100% by the end of her treatment, then we should be considering IVIG or Plasma Exchange.

 

I have not consulted with Dr. K at all...I have read his website, and many posts on this forum about what he suggests...please will someone correct me if I am wrong about his approach.

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Hi,

we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

 

Deanna

 

I'm glad that you had a good visit...I think what is becoming very apparent is that Dr. Latimer is a thoughtful person who considers every case individually.

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That is interesting that she said "dogs are huge carriers of strep". She is the first doctor that I have heard that from. I know we did have an ACN member who had her dog cultured a while back...initially she thought it was positive but it turned out it was positive for another strep (not strep A).

 

Here's a good link http://www.wormsandgermsblog.com/2008/05/a...d-strep-throat/

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She told us not to let our son to get to snuggly with dogs. She adovocates having dogs vaccinated. I think she chooses longer term steroid use at a low dose to decrease the inflammation in the basal ganglia of the brain. I am not sure what Dr. K's protocal is but I feel pretty confident that she treats each patient individually and maybe sees where they fall with in the Cunningham test. The antibiotics are used to orevent recurrent strept infections from my understanding.

 

Deanna

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Our doc said the same thing about dogs and other pets. A 3 week course of steroids is what they give for poison ivy. I believe it's not the same dose throughout. It gets lowered every week. In other autoimmune groups I've visited, they have had side effects like not being able to walk well, but they are on long term. Just keep your eyes pierced and bring up any concerns if things should change.

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okay, this is slightly off topic. But, I also saw Dr Latimer yestarday and had a great appt. We are taking a similar course as Dee: Cunningham test, steroids, proph abs. We are keeping our fingers crossed that this will do it this time round.

 

She also asked about dogs and pets. We have none, but are considering getting a puppy in the near future. Pandas dd LOVES animals, and is begging for one. Any thoughts? I certainly don't want to bring strep into the house. Those that have dogs: have you had them tested? Maybe we could do prophylactic abs on the dog (my husband and vet will think I've lost it I am sure- this sounds ridiculous...)

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We did have our dog tested after we saw Latimer. I had actually heard this before we went but she prompted me to follow through. My vet said she had to look it up and call her lab to figure out how to do it since she had never been asked that before. My dog had to be sedated to culture her deep into her throat and GI system. It was negative. The sedation was pricey so I threw a teeth cleaning in!

Just some other thoughts...I also purchased toothbrush cleaner (the egg ones that zap the toothbrush after use and kill 99.5%) of bacteria on toothbrushes and switch the toothbrushes out each month. The cleaners are about 30$ a piece.

As, far as the steroids go I think she is still using them short term. The side effects you see that are bad happen after much longer use. Also, the hem/onc docotr we saw up there that ran the PEX said that she and Latimer were going to start working together on this disease. Someone who went recently said she told them that her immunologist, hematologist, and her were going to work together. This is great news!!!

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okay, this is slightly off topic. But, I also saw Dr Latimer yestarday and had a great appt. We are taking a similar course as Dee: Cunningham test, steroids, proph abs. We are keeping our fingers crossed that this will do it this time round.

 

She also asked about dogs and pets. We have none, but are considering getting a puppy in the near future. Pandas dd LOVES animals, and is begging for one. Any thoughts? I certainly don't want to bring strep into the house. Those that have dogs: have you had them tested? Maybe we could do prophylactic abs on the dog (my husband and vet will think I've lost it I am sure- this sounds ridiculous...)

 

We bought a puppy a week and half ago because our dd loves pets and wanted one. Our family has been through the ringer this year and we thought it might bring some much needed joy to our house so we gave in. I have to tell you if I could do it over again-the puppy would stay at the pet shop! It is a lot of work and of course it all seems to fall on Mom. Plus our puppy seems to have a dominence issue with my kids-he bites and growls at them. I'm taking him outside every 20-30 minutes to go potty so relaxing is out of the question. Then there's the barking at night and in the morning so sleeping past 6:30 is also out.

 

I am proud to say that I am a CAT person and will faithfully remain a Cat person!! LOL :D

 

My suggestion is-if you get a dog make sure he/she is past the potty training stage. :wacko:

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