Michele visit with Dr. Latimer

[dee45]

Hi Michele,

Just thinking about you and wondering how your visit went today with Dr. Latimer. Look forward to hearing from you.

 

Deanna

[Kayanne]

I also hope the visit goes well....

[michele]

Thanks for asking. Back in OH tonight. It was a long weekend in DC. Tons of walking and visiting the sites. Lots of meltdowns and lack of listening during the trip though! He was out of his element.

 

Dr. Latimer is great and very informative and knowledgable about neuro issues. We did not get IVIG yet. Possibly because she felt we should do the steroid burst first. She did give us the script for it for 3 weeks. The problem is that Andrew's case is very long and complicated. He has a history of tics, compulsive behaviors and adhd behaviors and anxiety dating back six and a half years. She went through everything date by date. However his symptoms do seem to get worse after virals and strep, but TS also waxes and wanes with stress and illness. She wants to rule out the PANDAS and TS and anxiety disorder. The Cunningham study showed he was PANDAS but in the low range. She clarified this could also show up with TS tics as being low PANDAS range or high normal range. She thought his chorea was minimal. The family history also shows lots of anxiety and compulsions plus his dad has a quick fuse. So, she thought we could make some adjustments to his meds such as a clonidine patch or trying prozac since it works for dad's temper. She'd like to see him get off the Abilify. She will send me her notes. She wants to review everything and then will let me know. I don't know if she could manage meds but she said she would send notes onto his ped. She also said it would be good to be referred to the study at NIMH for anxiety. She took about two hours with us. Lots of talking in an office/desk setting. However she did examine him and did a full neuro check-up. It was alot of waiting for him. He was really good for her. She said he was very outgoing and talkative and social. His eye rolls were better and have stayed better. However over the weekend he started a new tic where he licked or smelled his hands after everything he touched. She told me to get in touch in a week with her. My husband was a bit annoyed since he said what did you get another script? he thought we'd get the IVIG. However I felt good talking to a Dr who knows how to treat these rare cases. Overall, worth the trip and money to talk to someone who gets what these kids go through. I wish we were closer to her. I'd be happy to answer any questions.

 

Michele

 

 

Hi Michele,

Just thinking about you and wondering how your visit went today with Dr. Latimer. Look forward to hearing from you.

 

Deanna

[dee45]

Hi Michele,

glad you had a good visit and were able get good information--we see her on the 5th. Let me know how your son does on the steroids did she say why she does 3 weeks and not the 5 day bursts we read so much about. hope things get better.

 

Deanna

[michele]

She did not say it must be the way she does it. 3 pills a day for one week, two pills a day for the second week and then one pill for the third week a day. 10 g and 120 pills. She said it is quite remarkable how the true PANDAS kids get better on the steroids and no worse like you would expect. If he did do worse I would stop them after talking to her after a week. She responds to email or phone calls. She is very down to earth and talks at your level. She took a lot of notes for her files also. She also asked questions and seemed to really care about her patients. She said she is getting alot of referals since others are shying away from these tough to treat cases. Word has spread that she will help these kids. She doesn't care what the naysayers say about her. She said after you treat a few cases and see how well they respond it is evident that it does exist and treatment helps! A really classy lady, smart, funny and personable. The whole package!

 

Hi Michele,

glad you had a good visit and were able get good information--we see her on the 5th. Let me know how your son does on the steroids did she say why she does 3 weeks and not the 5 day bursts we read so much about. hope things get better.

 

Deanna

[dee45]

Thanks Michele appreciate the input.

 

Deanna

[Kayanne]

Michele,

 

I'm really glad that you had a good visit...Dr. Latimer is a wonderful woman! Diddo to everything that you posted about her. Her family has been in our prayers...I'm glad you said that she seemed okay.

 

She put my daugher on a month of prednisone, and at the end when my husband and I saw major improvements, she allowed us to continue for two more weeks! Now my daughter is about 99.9% better, and she seems to be getting better each day!

 

Dee,

 

The only thing at our visit that came up about the length of prednisone treament was when I had expressed concerns for the side effects of it. Dr. Latimer had said that the side effects usually occur in people who take them for a few months or longer...she said it can make some kids "cranky" and may cause insomnina.

 

I'm actually puzzled by a "5 day burst". It seems to me if a medication is causing improvement...why stop after only 5 days? Prednisone is a very effective anti-inflammatory. Doesn't it make sense to continue the medication until the inflammation is down? I believe that is how it is used when treating asthma, rashes, and a whole host of other issues.

 

I think the difference between the ideas behind a 5 day burst, and a longer course is the intent in it's use. Someone correct me if I am wrong here because I have never consulted with Dr. K; But Dr. K's purpose for the steroid is to see if there will be a positive response to IVIG, and Dr. Latimer's purpose for using the steroid is to actually treat the inflammation.

 

Also, keep in mind that steroids supress the immune system, so they are helpful in treating auto-immune issues.

 

Dr. Latimer did tell us that if our daughter didn't fully recover after the prednisone treatment, we should be considering IVIG or PEX...so I do think that both Dr. K and Dr. Latimer are in agreement about the treatments for PANDAS, but I think Dr. K kinda skips right to IVIG.--please someone correct me if I am wrong because I have never communicated with Dr. K--this is just my understanding from what I have read on this forum.

[P_Mom]

But what then after your child gets better on the steroids? It is only a temporary improvement and PANDAS always returns with the next immune challenge. I think Dr.K goes for IVIG because he views it as a "cure" for many kids....the steroids are a temporary treatment.

[Kayanne]

But what then after your child gets better on the steroids? It is only a temporary improvement and PANDAS always returns with the next immune challenge. I think Dr.K goes for IVIG because he views it as a "cure" for many kids....the steroids are a temporary treatment.

 

I'm new to this PANDAS thing, so I am trying to sort it all out...just like the rest of us I think.

 

I have no doubt that IVIG or PEX is probably the best way to fight this for many families, and that it has cured some children. But it is also possible to still have a PANDAS episode after receiving these treatments.

 

I do believe that many parents when faced with a choice of having a safe procedure that just may cure their children will opt for the procedure...it makes perfect sense.

 

But I also think that if you gave a parent the choice of medications vs. a medical procedure....many parents would choose the medication.

 

I think that my dd's episode was cut short by the use of the steroids, and I am so thankful that I didn't have to wait months to see her fully returned to us.

 

Forgive the poor analogy (I'm not trying to make light of anyone's situation), but I think of the prednisone as treating brain inflammation, as benedryl would be used to treat an allergic reaction. You need to use something that is powerful and quick...and you usually continue the benedryl until the rash disappears.

 

As for future PANDAS episodes...that is currently my nightmare. I do think prophlactic antibiotics are key...

 

Not all children with PANDAS (but I think most) respond to other immune challenges, and what if you have already had IVIG or PEX...again it goes back to treating the inflammation.

 

I don't think a lot of harm can come from using a steroid to decrease inflammation and block an immune response...occasionally.

 

What if, as in our case, we think we caught this early? Is IVIG or PEX really necessary? Who really knows...I do think if she has another episode we will be looking more seriously at those procedures...

[Guest asaxon]

But what then after your child gets better on the steroids? It is only a temporary improvement and PANDAS always returns with the next immune challenge. I think Dr.K goes for IVIG because he views it as a "cure" for many kids....the steroids are a temporary treatment.

 

I'm new to this PANDAS thing, so I am trying to sort it all out...just like the rest of us I think.

 

I have no doubt that IVIG or PEX is probably the best way to fight this for many families, and that it has cured some children. But it is also possible to still have a PANDAS episode after receiving these treatments.

 

I do believe that many parents when faced with a choice of having a safe procedure that just may cure their children will opt for the procedure...it makes perfect sense.

 

But I also think that if you gave a parent the choice of medications vs. a medical procedure....many parents would choose the medication.

 

I think that my dd's episode was cut short by the use of the steroids, and I am so thankful that I didn't have to wait months to see her fully returned to us.

 

Forgive the poor analogy (I'm not trying to make light of anyone's situation), but I think of the prednisone as treating brain inflammation, as benedryl would be used to treat an allergic reaction. You need to use something that is powerful and quick...and you usually continue the benedryl until the rash disappears.

 

As for future PANDAS episodes...that is currently my nightmare. I do think prophlactic antibiotics are key...

 

Not all children with PANDAS (but I think most) respond to other immune challenges, and what if you have already had IVIG or PEX...again it goes back to treating the inflammation.

 

I don't think a lot of harm can come from using a steroid to decrease inflammation and block an immune response...occasionally.

 

What if, as in our case, we think we caught this early? Is IVIG or PEX really necessary? Who really knows...I do think if she has another episode we will be looking more seriously at those procedures...

 

It is my understanding that Dr. Latimore sometimes sees a month of prednisone lead to a complete remission in PANDAS symptoms. So to me, it makes sense to at least try that before a more invasive treatment like IVIG. And, if the steroid burst does help, and the symptoms recur after six months or a year, after another exposure to strep or whatever (and assuming our child experiences no severe side effects from the steroid burst), then we could always try another steroid burst. Maybe prophylactic antibiotics will also help if and when the PANDAS symptoms are under control. I would consider IVIG or plasma exchange, but only as a last resort.

[colleenrn]

Michele-

 

What were her thoughts on antibiotics? Is she trying the prednisone and holding off on antibiotics? Does she think his bowel issues are related?

Colleen

[michele]

She said strong antibiotics can be harsh on them. There could be a connection between bowel issues and antibiotics. She doesn't see anibiotics curing their symptoms up since they are neuro. I did not get the idea she worries about kids becoming resistant to some infections from long term use. I makes me wonder about Saving Sammy and Beth Maloney saying antibiotics cured him?

 

Kayanne, what did she tell you?

Michele-

 

What were her thoughts on antibiotics? Is she trying the prednisone and holding off on antibiotics? Does she think his bowel issues are related?

Colleen

[thereishope]

Michele, I am happy your appt went well.

 

I think when you step back and see that she is waiting for the IVIG, you should feel a sense of reassurance that she has your son's best well being in mind. I know it may have been frustrating not to get it, but it does sound like she has a plan.

 

As for 5 day steroid vs month long steroid. My son got the 5 day not as a precursor to IVIG but I believe to stop more inflamation from occurring. Maybe to weaken the immune system to stop the antibodies form being produced? That's just a theory.He received prednisone during the 10 day course of antibiotics to kill a strep infection. It did help. I can see how being on it longer, could have benificial, but I also understand why my son't dr did what he did.

 

Michele, be prepared for other things to change, like a definite increase in appetite. That's very much expected.So is he still on the Omnicef. if I recall, you stopped taking it because of the bowel issues, but did you restart it? Did she put him on something else because his immune system will be weakend by the steroids? Did she outright say what he stance was on long term antibiotics?

 

When will you find out about the anxiety study w/ NIMH? Do follow through w/ that. Get youself est w/ them and you may be calle don for other studies, inc PANDAS.

 

You did a great job, Michele!

[Kayanne]

She said strong antibiotics can be harsh on them. There could be a connection between bowel issues and antibiotics. She doesn't see anibiotics curing their symptoms up since they are neuro. I did not get the idea she worries about kids becoming resistant to some infections from long term use. I makes me wonder about Saving Sammy and Beth Maloney saying antibiotics cured him?

 

Kayanne, what did she tell you?

Michele-

 

What were her thoughts on antibiotics? Is she trying the prednisone and holding off on antibiotics? Does she think his bowel issues are related?

Colleen

I posted this almost exactly on another thread--Just thought it would be easier than re-writing:

 

For my dd, Dr. Latimer did perscribe the azith and prednisone together...which makes sense because when you are on the steroid your immune system is suppressed.

 

Other than a few minor issues as a baby, Becca is very healthy so I do believe that played into her decision to prescribe the azith at half the dose...she was somewhat reluctant to do it...but I asked her to. She was going to perscribe amoxicillian, but my dd had a "side effects rash" from that in April (which Dr. Latimer didn't believe--she thinks it may have been strep related)...I asked her for the azith because I was aware that a lot of the parents on the forum had seen good results with it. In our situation, all six of my family were on an antibiotic at one point, four of us were on antibiotics three times, and my PANDAS daughter was on antibiotics 4 times, and she was reluctant to go with the antibiotics in case she might be creating a resistant strain in our house...all understandable.

 

That morning we had called for the results of her 72 hour throat culture that we had her ped. do, and it was negative; Dr. Latimer felt the infection was cleared, but I had expressed concern that I think my son may be a "carrier" since he has also had impetego twice....She gave me enough refills to get me to the beginning of Sept.

 

She didn't say this directly, but the general feel that I got from her is that a longer course is needed to be sure the infection is cleared...I have yet to address the long-term use of antibiotics with her.

 

Diana and I have briefly discussed this...I do believe that I will lobby Dr. Latimer to keep Becca on a prophlactic dose of some type of antibiotic...maybe something not so broad spectrum. My Uncle had RF as a child, and he took penicillian for 20 years.

 

I can also understand why she would be reluctant to prescribe antibiotics to your son if his bowel issues may be a result of long term use of them...It sounds like Dr. Latimer is thoughtfully considering your son's situation because it is complicated.

 

I have a hard time accepting that antibiotics are also a treatment for PANDAS, but if you google azithromycin and anti-inflammatory and/or immune-modulating properties (or something similar) you will get a lot of results...concerning other disorders/diseases.

[mom md]

I have been thinking about you and so glad you came up with a plan. I think it is also good that Latimer seems to be tayloring each treatment recommendation to each child and making sure that IVIG and PEX are truly going to be beneficial before proceeding with them. She does not appear to have a cookbook response but is considering all factors. I also think it is interesting that she wants to maniupulate his meds. My guess is that as head of Neurology at Georgetown she saw a lot of extreme cases and may be very helpful in her recommendation to tweeking medications.

She offered us steroids but offered us a three month trial which she felt would only be temporary and then we would be looking at PEX vs IVIG. She felt my son would need multiple treatments with IVIG vs 3-4 days of PEX. My son is doing great since the PEX and she was right on with the recommendation. I still see occasional rare tic and chorea movement but they are fleeting and last only a millisecond. He had a little seperation anxiety the other night but it was manageble. He is 95% now and getting better each day. His case though appears to be sydenham's which has a clearer treatment path. She also recommended antibiotics until adulthood (maybe up to 25).

I know it is frustrating to not have gotten the IVIG but my guess is she listened to everything you said and wants to make sure it is the right thing. I also think to see his response to the steroids will let you know if proceeding with IVIG will be the right course. I know there are a lot of different ways to do a steroid taper so I think the one she perscribed sounds good. Please call me if you have any questions.

Claire