We met with Dr. Latimer on Friday, 6/5

[Kayanne]

I've had a few PM's asking how my daughter's appointment with Dr. Latimer went, so I thought I would just post to let everyone know that we were very happy with the visit.

 

She is a wonderful person, her office staff are friendly and helpful, and she does truly understand the whole PANDAS thing.

 

She gave me a report at the end of the appointment. In her report she called it "Pediatric Autoimmune Basal Ganglia Disease caused by Strep". In the course of our conversation, it became very obvious that she treats a lot of these kids, and she gave us examples of kids who are doing fine now...we needed to hear that!!!

 

She suprised me by telling us at the end of our visit that my daughter has a very very mild choreiform movement.

 

Currently, she put my daughter on a month of prednisone and about three months of 100mg of azithromycin. She said we should see improvement in her behavior within a few days....well as of now I think we are seeing baby steps of improvement. She started the steroid on Saturday (6 days ago). We have had some really difficult behavior from her (refusing to do essential things, and screaming and fighting me when I make her), however, it seems to have stopped yesterday afternoon (I hope).

 

I think it is hard to assess if this is a side effect of the steroid or not. Truthfully, I was hoping for more improvement, but I think we are heading in the right direction. She believes that my daughter will be very close or at her previous baseline by the end of the month...if not she said we should consider IVIG or Plasma exchange...but since we think this is her first episode...she dosen't think we are anywhere near those treatments yet.

 

She said to me "We are very accessible here." when I expressed concern for possibly needing more antibiotics. She said to keep her informed by email.

 

I had some questions that I emailed to her on Monday morning, and she responded very quickly.

 

One of the questions I had was why she put my daughter on such a low dose of azithromycin (compared to what I've read on this website). She said that a case could be made for not even putting her on the antibiotic because her 72 hour throat culture came back negative on Friday morning, and that since there previously was so much strep in my house....she doesn't want to create a resistant strain. Also, she felt it was better to start at low dose.

 

Over all, My husband and I are very glad that we went down to see her! If any of you are not sure...I hope this helps a little.

 

On another note, the infectious disease specialist that we saw at CHOP told us to take my daughter to a pediatric psychiatrist (for me, that's when the tears really started!)...so we also were traveling down that road of treatment. Well, after asking around, the only person that kept being referred to us was Dr. Robin Altman. We met with her the Tuesday before we were going to Dr. Latimer.

 

I kept thinking that it was going to be a waste of time...what was a psychiatrist going to do for us except try to prescribe psychiatric drugs?

 

My husband and I were surpised, when she said that she was positive that this was a case of PANDAS. She fully understood the nature of this disease...and instead of drugs, she recommened supplements: Omega 3's for brain development; selenium, magnesium, and zinc which are believed to help a little with anxiety.

 

Then she said that we should cancel my Daughter's follow-up on June 12 because she doesn't think it will be helpful to evaluate her until she is out of her episode...that's when I realized that she really understood what was going on. She knew we were heading down to see Dr. Latimer on Friday, and as per a previous conversation that I had with Dr. Latimer, I told her that I expected my daughter to be put on a steroid and antibiotic. She whole-heartedly agreed with this course of treatment. We left the office thinking that when my daughter is "stabilized" we would follow-up.

 

On Tuesday this week, Dr. Altman called to see how we made out at Dr. Latimer's. She was pleased that it went well, and when I mentioned the follow-up, she said that it was not even necessary. We should only schedule an appointment if we feel that our daughter has returned to her baseline, and still has some underlying OCD that we feel could be helped with an SSRI. I told her that we were more likely to stick with the Cognitive Behavioral Therapy first, and she thought that was an excellent idea!

 

So if anyone wants to make an appointment with a pediatric psychiatrist....I would highly recommend Dr. Robin Altman. She is located at Sinking Spring, PA...just outside of Reading, PA...an hour and a half north of Philadelphia.

 

I just want to say THANK YOU to all of the people who responded to my first post...without all of your advice, I would be waiting to hear from a Rumatologist who my Pediatrician heard second hand believes in PANDAS--- and my daughter would not have gotten the help she needs. I know that I'm going to need advice in the future, and I hope that I can contribute some help as well!

 

God Bless you all!

 

~Karen

[michele]

Karen Did Dr. Latimer feel that long term antibiotics daily are not necessary? Did she say why? I know Dr. Murphy felt that we only needed antibiotics when people in the house had strep or he had symptoms. Did she think the steroids would make her moods worse before they got better?

 

Wow you hit the jackpot finding two Dr's who beleived in PANDAS at once! Thanks for sharing your story!

 

Michele

I've had a few PM's asking how my daughter's appointment with Dr. Latimer went, so I thought I would just post to let everyone know that we were very happy with the visit.

 

She is a wonderful person, her office staff are friendly and helpful, and she does truly understand the whole PANDAS thing.

 

She gave me a report at the end of the appointment. In her report she called it "Pediatric Autoimmune Basal Ganglia Disease caused by Strep". In the course of our conversation, it became very obvious that she treats a lot of these kids, and she gave us examples of kids who are doing fine now...we needed to hear that!!!

 

She suprised me by telling us at the end of our visit that my daughter has a very very mild choreiform movement.

 

Currently, she put my daughter on a month of prednisone and about three months of 100mg of azithromycin. She said we should see improvement in her behavior within a few days....well as of now I think we are seeing baby steps of improvement. She started the steroid on Saturday (6 days ago). We have had some really difficult behavior from her (refusing to do essential things, and screaming and fighting me when I make her), however, it seems to have stopped yesterday afternoon (I hope).

 

I think it is hard to assess if this is a side effect of the steroid or not. Truthfully, I was hoping for more improvement, but I think we are heading in the right direction. She believes that my daughter will be very close or at her previous baseline by the end of the month...if not she said we should consider IVIG or Plasma exchange...but since we think this is her first episode...she dosen't think we are anywhere near those treatments yet.

 

She said to me "We are very accessible here." when I expressed concern for possibly needing more antibiotics. She said to keep her informed by email.

 

I had some questions that I emailed to her on Monday morning, and she responded very quickly.

 

One of the questions I had was why she put my daughter on such a low dose of azithromycin (compared to what I've read on this website). She said that a case could be made for not even putting her on the antibiotic because her 72 hour throat culture came back negative on Friday morning, and that since there previously was so much strep in my house....she doesn't want to create a resistant strain. Also, she felt it was better to start at low dose.

 

Over all, My husband and I are very glad that we went down to see her! If any of you are not sure...I hope this helps a little.

 

On another note, the infectious disease specialist that we saw at CHOP told us to take my daughter to a pediatric psychiatrist (for me, that's when the tears really started!)...so we also were traveling down that road of treatment. Well, after asking around, the only person that kept being referred to us was Dr. Robin Altman. We met with her the Tuesday before we were going to Dr. Latimer.

 

I kept thinking that it was going to be a waste of time...what was a psychiatrist going to do for us except try to prescribe psychiatric drugs?

 

My husband and I were surpised, when she said that she was positive that this was a case of PANDAS. She fully understood the nature of this disease...and instead of drugs, she recommened supplements: Omega 3's for brain development; selenium, magnesium, and zinc which are believed to help a little with anxiety.

 

Then she said that we should cancel my Daughter's follow-up on June 12 because she doesn't think it will be helpful to evaluate her until she is out of her episode...that's when I realized that she really understood what was going on. She knew we were heading down to see Dr. Latimer on Friday, and as per a previous conversation that I had with Dr. Latimer, I told her that I expected my daughter to be put on a steroid and antibiotic. She whole-heartedly agreed with this course of treatment. We left the office thinking that when my daughter is "stabilized" we would follow-up.

 

On Tuesday this week, Dr. Altman called to see how we made out at Dr. Latimer's. She was pleased that it went well, and when I mentioned the follow-up, she said that it was not even necessary. We should only schedule an appointment if we feel that our daughter has returned to her baseline, and still has some underlying OCD that we feel could be helped with an SSRI. I told her that we were more likely to stick with the Cognitive Behavioral Therapy first, and she thought that was an excellent idea!

 

So if anyone wants to make an appointment with a pediatric psychiatrist....I would highly recommend Dr. Robin Altman. She is located at Sinking Spring, PA...just outside of Reading, PA...an hour and a half north of Philadelphia.

 

I just want to say THANK YOU to all of the people who responded to my first post...without all of your advice, I would be waiting to hear from a Rumatologist who my Pediatrician heard second hand believes in PANDAS--- and my daughter would not have gotten the help she needs. I know that I'm going to need advice in the future, and I hope that I can contribute some help as well!

 

God Bless you all!

 

~Karen

[P_Mom]

Thanks! 100mg of Azith how often? Will she keep her on long term as a prophylactic measure?

[Gibster]

Hi Karen. I was the mom who originally posted about Dr. Latimer. I am so glad you had questions answered and are on a treatment path.

 

Good luck!

 

Morna (now in Colorado and missing Dr. Latimer)

[bronxmom2]

Hi Karen,

Can you tell us how your daughter is doing on the prednisone? I have been wondering, because that is the next step for my son, whose profile is similar to your daughter's.

 

Thanks!

[Kayanne]

I've been meaning to put in an update...real life got a little crazy...she is halfway through her course of prednisone, and we are seeing some real results now. At first it was just baby steps, and I was a little discouraged because I was under the impression that the steriods brought quick results. All Dr. Latimer said was, "You should see some improvement in a few days." I guess my idea of improvement was a little too optimistic. But we did see some small changes right away. Two days into the treatment, she had her first day back at school, and it was the first time in a while that she ran up to a classmate with a smile on her face.

 

The lowest point, however, was when about a week into taking the prednisone, she screamed and fought me when I took her up for her bath. She just huddled in the corner of the tub screaming, "No, mommy, no!" while I washed her. All I kept telling myself over and over is that she was not well...It was extremely scary. In the past, I had struggled with gettting her on the toilet, and dressing her, but this just seemed to be on a whole different level. Another mom had told me that her daughter had some rages while on the steroid...so I was trying to keep that in mind too.

 

Today was her first day of the local "tot lot". She goes to the playground for two hours..they play games, do crafts, eat their lunch and occasionally take field trips. The last two years she loved it. We kept all my kids home from the program last week because we didn't feel she was up to it.

 

She did much better than we expected her to. Getting ready this morning was really easy...she did almost everthing herself. Her focus is returning--it no longer takes constant prodding to get her to remember to eat the food in front of her (for a little bit we actually had to feed her like she was a baby), she did a great job on the craft by herself. A few times she has answered with a "yes" or "no"--that is huge!

 

Her creativity still seems to be lacking. She used to write pages and pages of stories and poems, and make matching drawings. She hasn't written or drawn anything independantly in months--it seems to cause her stress to try to do it...I stopped trying to prod her because I'm afraid she may be taking a real hit to her self-esteem.

 

Socially, she still doesn't interact with her friends on the same level that she was at prior to this...I keep thinking that we were so lucky to have this happen when she was 6 and not 3 or 4...because we would probably be looking at an autism diagnosis.

 

Comparatively, I believe she has a more mild case of PANDAS, and that may be why we didn't see the immediate results from the steroid that a lot of the parents who mention the "steroid burst" have reported.

 

When are you going to see Dr. Latimer? I think it was the best thing that we could have done...I do also have an appointment with a rhumatologist in August. That was the direction that my daughter's pediatrician sent us...he made some phone calls to try to find a doctor who believes in PANDAS. I'm not really sure what a rhumatologist can do for my daugher at this point, but I figured it couldn't hurt.

 

Her last positive strep test was on May 8th, and she was put on 10 days of Clindamycin/2 tsp.--3 times a day. After that she has had two negative cultures, so if you consider the timing...she may be in the natural waning of the symptoms. Personally, I strongly believe that the steroid is the reason that she is improving.

 

Dr. Latimer has also put her on 100mg of azithromycin once a day (DD is 43 lbs). Truthfully, I'm not sure if that really is even a factor here. It is such a low dose, could it be contributing to her improvement with it's anti-inflamatory and immune modulating properties? Is it enough to prevent another infection? Am I creating conditions that could result in a resistant stain of strep in my house (this was one of Dr. Latimer's concerns)? I worry that by giving her the azith that I am killing all her good flora, and setting her up for a life-time of health issues...we bought a good pro-biotic from the health store, but I still worry that it's not enough.

 

I've had a healthy life so far, and my kids have been so healthy prior to all the strep this spring...I feel so ill-equipped to deal with this--as I'm sure you all can relate to that feeling.

 

Best Wishes,

Karen

[michele]

Thanks for your reply. I am so happy things are improving for your daughter. I could identify with alot that you wrote.

 

My son's creativity is really lacking also. can you believe his art teacher had the nerve to put this on his report card. He has an IEP for goodness sake. His fine motor was always delayed but the creativity in writing and drawing is very apparent at age 7. We do OT to help in this area. Also his tutor is supposed to help him with story writing.

 

The friends part I have noticed more lately looking autistic also. He has friends there but he is playing his own thing and doesn't join in too much. Like yesterday at the pool his friend was there but he rarely swam with her. Or at the park he ran off to the swings without his friend.

 

I wanted to express to you also that I am worried about the antibiotics longterm and the damage they may do. Andrew is having a bad time with his bowels right now and I don't know if it is attributed to the antibiotics he has been on for several years. He has messes all the time and doesn't know it is coming. His bottom is so sore and he grabs back there constantly. I have been using Kefir and Culturelle for awhile and probiotics daily. He is worse now then ever. Eyes blinking and rolling, up on his toes, grabbing his bottom, diareah, tantrums, not joing in in with kids, super focused on on topic at a time. I don't know if some of these could be from the antibiotics. Maybe it is yeast causing some of the symptoms. I just know the antibiotics are not keeping him from getting the episodes cause he is in one right now. Now I don't know if it is from the meds, illness, transitions from school to summer, allergies. It is so hard to tell. Back to the psychiatrist today and there is only one way they help and that is to change the meds again. I am exhausted and looking forward to Dr. Latimer who I am praying will have a solution. Also looking forward to Cunninghams results.

 

I've been meaning to put in an update...real life got a little crazy...she is halfway through her course of prednisone, and we are seeing some real results now. At first it was just baby steps, and I was a little discouraged because I was under the impression that the steriods brought quick results. All Dr. Latimer said was, "You should see some improvement in a few days." I guess my idea of improvement was a little too optimistic. But we did see some small changes right away. Two days into the treatment, she had her first day back at school, and it was the first time in a while that she ran up to a classmate with a smile on her face.

 

The lowest point, however, was when about a week into taking the prednisone, she screamed and fought me when I took her up for her bath. She just huddled in the corner of the tub screaming, "No, mommy, no!" while I washed her. All I kept telling myself over and over is that she was not well...It was extremely scary. In the past, I had struggled with gettting her on the toilet, and dressing her, but this just seemed to be on a whole different level. Another mom had told me that her daughter had some rages while on the steroid...so I was trying to keep that in mind too.

 

Today was her first day of the local "tot lot". She goes to the playground for two hours..they play games, do crafts, eat their lunch and occasionally take field trips. The last two years she loved it. We kept all my kids home from the program last week because we didn't feel she was up to it.

 

She did much better than we expected her to. Getting ready this morning was really easy...she did almost everthing herself. Her focus is returning--it no longer takes constant prodding to get her to remember to eat the food in front of her (for a little bit we actually had to feed her like she was a baby), she did a great job on the craft by herself. A few times she has answered with a "yes" or "no"--that is huge!

 

Her creativity still seems to be lacking. She used to write pages and pages of stories and poems, and make matching drawings. She hasn't written or drawn anything independantly in months--it seems to cause her stress to try to do it...I stopped trying to prod her because I'm afraid she may be taking a real hit to her self-esteem.

 

Socially, she still doesn't interact with her friends on the same level that she was at prior to this...I keep thinking that we were so lucky to have this happen when she was 6 and not 3 or 4...because we would probably be looking at an autism diagnosis.

 

Comparatively, I believe she has a more mild case of PANDAS, and that may be why we didn't see the immediate results from the steroid that a lot of the parents who mention the "steroid burst" have reported.

 

When are you going to see Dr. Latimer? I think it was the best thing that we could have done...I do also have an appointment with a rhumatologist in August. That was the direction that my daughter's pediatrician sent us...he made some phone calls to try to find a doctor who believes in PANDAS. I'm not really sure what a rhumatologist can do for my daugher at this point, but I figured it couldn't hurt.

 

Her last positive strep test was on May 8th, and she was put on 10 days of Clindamycin/2 tsp.--3 times a day. After that she has had two negative cultures, so if you consider the timing...she may be in the natural waning of the symptoms. Personally, I strongly believe that the steroid is the reason that she is improving.

 

Dr. Latimer has also put her on 100mg of azithromycin once a day (DD is 43 lbs). Truthfully, I'm not sure if that really is even a factor here. It is such a low dose, could it be contributing to her improvement with it's anti-inflamatory and immune modulating properties? Is it enough to prevent another infection? Am I creating conditions that could result in a resistant stain of strep in my house (this was one of Dr. Latimer's concerns)? I worry that by giving her the azith that I am killing all her good flora, and setting her up for a life-time of health issues...we bought a good pro-biotic from the health store, but I still worry that it's not enough.

 

I've had a healthy life so far, and my kids have been so healthy prior to all the strep this spring...I feel so ill-equipped to deal with this--as I'm sure you all can relate to that feeling.

 

Best Wishes,

Karen

[Kayanne]

Michele,

 

Has your son's bottom been tested for strep? I know that the skin can be tested because my son's finger was infected, and the doctor swabbed it, and he said it was strep...he looked in his throat and it was red...that's when 3 of my kids were put on a 10 day course of antibiotics with another one (Rifampin) added on days 7 thru 10.

 

Last Monday, I took my son to an allergist. The doctor said that he is my "allergic one". I asked if he could possibly have a yeast overgrowth that was contributing to his allergies--he is 4, and has needed to be on antibiotics six times. The doctor didn't think so because he said that he doesn't have the symptoms of a yeast infection: sore, itchy bottom & diarrhea. I'm still not convinced that he doesn't have an imbalance because his seasonal allergies are much worse than my girls, and he gets large dry patches of skin behind his knees.

 

Maybe, your son's problems are a result of a yeast overgrowth. I think his symptoms are severe enough to hope that his doctor will try to ascertain what is going on. Perhaps he could perscribe an anti-fungal such as Nystatin or Diflucan. However, I still think probiotics will still be key in establishing new colonies of good flora. I read somewhere on this forum that oil of oregano is a good anti-fungal too...but I have no experience with it.

 

One thing that we learned recently is that the bacteria can starve to death sitting on a shelf in a probiotic. If you buy a refridgerated one, the cold puts the bacteria in stasis so that you will have more live cultures by the time you ingest it. Of course the person who told my husband this was a clerk at a health foood store, and they have a financial interest in promoting their products--Dr. Latimer said that Florester was the brand that was used in the studies that proved that probiotics can be beneficial. Florester is not refridgerated.

 

I was at a website that sells a probiotic called Threelac...they claim to have more bacteria that is aggressive in "eating" the yeast, and they claim to have their bacteria micro-encapsulated in ordered for it to reach the intenstines in tact. Has anyone used this?...their claims seemed too good to be true.

 

The website is:

 

http://www.candidasupport.org/index.html

 

Best wishes,

Karen

[michele]

I just had all his labs run last week for Cunninham. He was low in white blood count. His ped did not seem concerned when I spoke to her today. Again I think this could be an opportunity to try Azith but she wants me to wait on the expert. She thinks the stool issue may be encopresis from constipation. She told me to wait on Latimer and see what she says. She suggested a stool sample run. I am so frustrated. Off to the psych to see what he thinks.

 

Michele

Michele,

 

Has your son's bottom been tested for strep? I know that the skin can be tested because my son's finger was infected, and the doctor swabbed it, and he said it was strep...he looked in his throat and it was red...that's when 3 of my kids were put on a 10 day course of antibiotics with another one (Rifampin) added on days 7 thru 10.

 

Last Monday, I took my son to an allergist. The doctor said that he is my "allergic one". I asked if he could possibly have a yeast overgrowth that was contributing to his allergies--he is 4, and has needed to be on antibiotics six times. The doctor didn't think so because he said that he doesn't have the symptoms of a yeast infection: sore, itchy bottom & diarrhea. I'm still not convinced that he doesn't have an imbalance because his seasonal allergies are much worse than my girls, and he gets large dry patches of skin behind his knees.

 

Maybe, your son's problems are a result of a yeast overgrowth. I think his symptoms are severe enough to hope that his doctor will try to ascertain what is going on. Perhaps he could perscribe an anti-fungal such as Nystatin or Diflucan. However, I still think probiotics will still be key in establishing new colonies of good flora. I read somewhere on this forum that oil of oregano is a good anti-fungal too...but I have no experience with it.

 

One thing that we learned recently is that the bacteria can starve to death sitting on a shelf in a probiotic. If you buy a refridgerated one, the cold puts the bacteria in stasis so that you will have more live cultures by the time you ingest it. Of course the person who told my husband this was a clerk at a health foood store, and they have a financial interest in promoting their products--Dr. Latimer said that Florester was the brand that was used in the studies that proved that probiotics can be beneficial. Florester is not refridgerated.

 

I was at a website that sells a probiotic called Threelac...they claim to have more bacteria that is aggressive in "eating" the yeast, and they claim to have their bacteria micro-encapsulated in ordered for it to reach the intenstines in tact. Has anyone used this?...their claims seemed too good to be true.

 

The website is:

 

http://www.candidasupport.org/index.html

 

Best wishes,

Karen

[dee45]

We have an appointment as well on the 17th of July with Dr. Latimer--I will let everyone know how it goes.

 

Deanna