PANDAS and Dr. Murphy

[michele]

Here is what I learned from Dr. Murphy. I felt it was a great experience and her office was very friendly and good with my son.She did diagnose him as having PANDAS with tics mostly motor and some vocal and OCD and hyperness. She felt his type of OCD/tics/ADHD is common with 75% of her patients. She has over 100 PANDAS patients she has seen. She feels the biggest hardship for these kids is the ADHD. If the tics are not debilitating and do not bother the kid then they should not be medicated. She felt the meds are needed more for the ADHD behaviors and to control impulsiveness. However she cautioned the meds can cause an increase in tics so felt waiting for brain maturity and immune improvements is better when it comes to giving ADHD meds. Only give the meds if the behaviors become dysfunctional. She felt we need to get the strep tested more often in our family. Even close contacts should be cultured and treated for positive results. Because my son has some fine motor coordination delays she did refer for occupational therapy. Also possibly speech therapy for his raspy voice because he is horse and may be struggling to get the words out. I never thought of this because he is very verbal. Although very loud at times so help with inflection may help! She sees this raspy voice alot with her PANDAS cases. She feels tics are common in kids 1out of 10 so if there is no harm they will probably outgrow them with immune improvements. However when needed she recommends Tennex in low doses. She did explain that it is hard on parents because we want to help them so much we struggle with what to give. She recommends ruling on the side of caution and avoid anything that could cause them long term harm. So she did say to avoid the Actose because there is just not the research to prove its benefits outway its risks. On the supplements she suggested Fish oils with higher EPA to DHA Corremega was her choice. Also a good multivitamin with zinc and Vit B-6 and B-12. She said monolaurin would be fine and the probiotics and digestive enzymes are fine also. She said Nutritional NAC can help decrease neurotoxicity. The diet GF is okay if we see a benefit. Also she suggested Augmentin for three weeks to try to get the flare up of tics and OCD under control. However to my dissapointment she did not write out a prescription so I have to take this paper to one of our Dr. and try to get this changed. She said to try to focus on what we can help him with now such as the OT, SPT, instead of waisting time and money on more testing hat never really makes much change. She said only a few people can really interpret these tests correctly anyways. If you know what you've got then just deal with the symptoms. She did not have much to say on the Pyrrole. She said if the fish oils bother him then just don't give them. So I feel I gained alot of information from a pro but now I have to convey this to our Dr.'s here. She really respected Dr. Erenberg who we see at Cleveland Clinic. She said he is the grandfather of Tourettes diagnosis. I also heard her to say she has Tourettes. He has also been very hesitant to ever prescribe anything. She said with age and desire you can learn to use Behavior Therapy but Andrew is young and just acts and doesn't think or care if he is pressing his face. As he gets older he may be better able to redirect himself. Just a side note. Andrew's tics seemed worse there plus since today he is having to urinate constantly again. He must be starting another episode again. He has been getting sick back to back since school started. I wonder if he's been exposed again to strep. I was swabbed and was negative. She said the urination is a compulsion and a good sign of the need to check the household for strep. He is acting alot more rowdy again today an making more motor sounds. It seems like the more I've tried to help him the worse he has become. I wonder why that is? I hope this was all worth the huge expense we made to visit her!

 

Michele

[emma1]

Michele, Sounds like an amazing appointment, but so sorry she did not write a prescription as I know that would have made it some easier for you. Did you see the Swedo lecture video? There was an issue brought up in this forum regarding whether you should try to boost the immune system of a child with an auto-immune issue (PANDAS). It sounds like Dr. Murphy does want you to supplement with fish oil and vitamins -- I would think that you would want the child as healthy as possible to ward off future strep infections. What would you think?

 

 

 

Here is what I learned from Dr. Murphy. I felt it was a great experience and her office was very friendly and good with my son.She did diagnose him as having PANDAS with tics mostly motor and some vocal and OCD and hyperness. She felt his type of OCD/tics/ADHD is common with 75% of her patients. She has over 100 PANDAS patients she has seen. She feels the biggest hardship for these kids is the ADHD. If the tics are not debilitating and do not bother the kid then they should not be medicated. She felt the meds are needed more for the ADHD behaviors and to control impulsiveness. However she cautioned the meds can cause an increase in tics so felt waiting for brain maturity and immune improvements is better when it comes to giving ADHD meds. Only give the meds if the behaviors become dysfunctional. She felt we need to get the strep tested more often in our family. Even close contacts should be cultured and treated for positive results. Because my son has some fine motor coordination delays she did refer for occupational therapy. Also possibly speech therapy for his raspy voice because he is horse and may be struggling to get the words out. I never thought of this because he is very verbal. Although very loud at times so help with inflection may help! She sees this raspy voice alot with her PANDAS cases. She feels tics are common in kids 1out of 10 so if there is no harm they will probably outgrow them with immune improvements. However when needed she recommends Tennex in low doses. She did explain that it is hard on parents because we want to help them so much we struggle with what to give. She recommends ruling on the side of caution and avoid anything that could cause them long term harm. So she did say to avoid the Actose because there is just not the research to prove its benefits outway its risks. On the supplements she suggested Fish oils with higher EPA to DHA Corremega was her choice. Also a good multivitamin with zinc and Vit B-6 and B-12. She said monolaurin would be fine and the probiotics and digestive enzymes are fine also. She said Nutritional NAC can help decrease neurotoxicity. The diet GF is okay if we see a benefit. Also she suggested Augmentin for three weeks to try to get the flare up of tics and OCD under control. However to my dissapointment she did not write out a prescription so I have to take this paper to one of our Dr. and try to get this changed. She said to try to focus on what we can help him with now such as the OT, SPT, instead of waisting time and money on more testing hat never really makes much change. She said only a few people can really interpret these tests correctly anyways. If you know what you've got then just deal with the symptoms. She did not have much to say on the Pyrrole. She said if the fish oils bother him then just don't give them. So I feel I gained alot of information from a pro but now I have to convey this to our Dr.'s here. She really respected Dr. Erenberg who we see at Cleveland Clinic. She said he is the grandfather of Tourettes diagnosis. I also heard her to say she has Tourettes. He has also been very hesitant to ever prescribe anything. She said with age and desire you can learn to use Behavior Therapy but Andrew is young and just acts and doesn't think or care if he is pressing his face. As he gets older he may be better able to redirect himself. Just a side note. Andrew's tics seemed worse there plus since today he is having to urinate constantly again. He must be starting another episode again. He has been getting sick back to back since school started. I wonder if he's been exposed again to strep. I was swabbed and was negative. She said the urination is a compulsion and a good sign of the need to check the household for strep. He is acting alot more rowdy again today an making more motor sounds. It seems like the more I've tried to help him the worse he has become. I wonder why that is? I hope this was all worth the huge expense we made to visit her!

 

Michele

[bmom]

Thank you for such a detailed and thorough post. I found many things important. I have a few questions-did she suggest long term use of antibiotics as a preventative? Did she say 1 in 10 children have tics of some sort? Seems so common! Did I understand that Dr. Murphy has tourettes? Does she not believe that testing for items such as vitamins etc. help? Did she say anything about yeast?

[emma1]

I would also be interested in answers to all of the above questions. Also, did she mention if she thought diet and/or allergies played a part in PANDAS. Our doctor said in non-PANDAS tics, he thought allergies/diet might play a part, but he thought that PANDAS was a result of the strep, and therefore, diet/allergies did not cause the problem and so a change in diet would probably not help. (Of course, he advocated making healthy choices!)

[trubiano]

Hey Michelle! Did she mention anything to give for the ADHD that is natural? My son is having a huge problem focusing in school. Or.. is there anything anyone else has tried?

[Chemar]

Hi Michele

 

glad you had a good appointment and especially glad she warned you about the ACTOS

I tried to do that here when you first mentioned it. I have deep concerns about it, especially for children

 

I am surprised that you said that she told you she has TS?? Are you sure of that??

 

Anyway, good that you got your dx correctly. They would likely have given you the prescriptions had you insisted....probably just thought you were going to first run everything by your docs first.

 

I would highly recommend you listening to those Swedo lectures too...very informative!

[Mustang Carole]

HI,

Thanks for posting about your experience with Dr. M.

Because she is a physician in Fla, I do not think she can write a script if you live in

another state...unless she has a liscence there.

Can anyone confirm this?

 

Carole

[michele]

Hello all,

I do think Dr. Murphy felt a good multi vitamin was very important. Keeping them healthy and strep free is the key! She suggested having the school call me if there is any strep in his class. Treating the reaction to strep with a stronger antibiotic seemed to be her theory. She did not say he needed off the Pen V but she did not say she recommended it either. But she did say he shouldn't get the strep if he is on it just the symptoms of PANDAS from exposure. Keeping the rest of the house on antibiotics for strep seemed to be her point. Most often she said someone close is the carrier. She made it sound like her prescription is not any good in Ohio. Alhough she did write the one for OT. She did not comment much on the biomedical testing but said it would be better to focus on things that are easier to fix and are needed now like the OT. The diet she said is a preference if I felt it worked to stick to it and the wheat free seems to help more then the dairy free in her experience. She did mention the dye connect to hyperactivity in a recent study when I told her we stay clear from red 40. She did not mention ADHD meds other then Ritalin which she said is better for older kids because of better immunity and brain development. Plus she said the side effects can cause worse tics if tried at too young of an age plus parents may turn off from it. Wait as long as you can seemed to be her approach. Only give meds when it is getting in the way of school or relationships. She said Calm Child Syrup would be okay. Her intern guy seemed to chuckle when I showed it to him saying he didn't think it really helps. She said 1 in 10 in a years time for kids with tics. She said other people don't notice them because they are not watching for them. She said meds are necessary when the tics get in the way or kids hurt themselves from them. She said the digestive enzymes were fine. I really think I heard her say she has Tourettes. I did not question her but she said it is very common. Also as an older child/person you learn CBT to redirect yourself. She made it sound like the tics are not that big of a deal and the ADHD is the harder one to deal with. She did not talk about yeast but said rather then focusing on the tests I've been doing to focus on the fine motor like the handwriting. Yes she said the Coremega is her recommendation for the fish oils just find higher EPA then DHA. However if they don't tolerate them just don't give them. If I have any trouble getting the prescription increased to a different antibiotic which I have had trouble with in the past from the immunologist I will have to call her office and have her call it in to one of my Dr.'s. The immunologist has refused to budge from the pen v in the past. I did listen to the Sweedo lecture and will again but found them right on. Now if I could get the Dr. in town to listen to them! If she sees 100 kids for PANDAS why aren't the Dr's more knowledgeable on it? Emma is one of the lucky ones who got it right on the first try!

Michele

 

HI,

Thanks for posting about your experience with Dr. M.

Because she is a physician in Fla, I do not think she can write a script if you live in

another state...unless she has a liscence there.

Can anyone confirm this?

 

Carole

[michele]

I keep remembering more of our conversations but Dr. Murphy stressed getting them involved in plenty of activities to exert their energy. Sports like soccer or karate. I know these can be hard though if kids do not do well with structured activities. Also she said she calls them quirks that are common for these kids like my son has them with moles on people, or smells like hot gum or lipstick. She also said the collecting is common of llittle items like my son is now stuck on webkinz and goes from interest to interest when that is all that is important. She sees the ADHD, OCD and tics in 75% of her kids.

 

 

Here is what I learned from Dr. Murphy. I felt it was a great experience and her office was very friendly and good with my son.She did diagnose him as having PANDAS with tics mostly motor and some vocal and OCD and hyperness. She felt his type of OCD/tics/ADHD is common with 75% of her patients. She has over 100 PANDAS patients she has seen. She feels the biggest hardship for these kids is the ADHD. If the tics are not debilitating and do not bother the kid then they should not be medicated. She felt the meds are needed more for the ADHD behaviors and to control impulsiveness. However she cautioned the meds can cause an increase in tics so felt waiting for brain maturity and immune improvements is better when it comes to giving ADHD meds. Only give the meds if the behaviors become dysfunctional. She felt we need to get the strep tested more often in our family. Even close contacts should be cultured and treated for positive results. Because my son has some fine motor coordination delays she did refer for occupational therapy. Also possibly speech therapy for his raspy voice because he is horse and may be struggling to get the words out. I never thought of this because he is very verbal. Although very loud at times so help with inflection may help! She sees this raspy voice alot with her PANDAS cases. She feels tics are common in kids 1out of 10 so if there is no harm they will probably outgrow them with immune improvements. However when needed she recommends Tennex in low doses. She did explain that it is hard on parents because we want to help them so much we struggle with what to give. She recommends ruling on the side of caution and avoid anything that could cause them long term harm. So she did say to avoid the Actose because there is just not the research to prove its benefits outway its risks. On the supplements she suggested Fish oils with higher EPA to DHA Corremega was her choice. Also a good multivitamin with zinc and Vit B-6 and B-12. She said monolaurin would be fine and the probiotics and digestive enzymes are fine also. She said Nutritional NAC can help decrease neurotoxicity. The diet GF is okay if we see a benefit. Also she suggested Augmentin for three weeks to try to get the flare up of tics and OCD under control. However to my dissapointment she did not write out a prescription so I have to take this paper to one of our Dr. and try to get this changed. She said to try to focus on what we can help him with now such as the OT, SPT, instead of waisting time and money on more testing hat never really makes much change. She said only a few people can really interpret these tests correctly anyways. If you know what you've got then just deal with the symptoms. She did not have much to say on the Pyrrole. She said if the fish oils bother him then just don't give them. So I feel I gained alot of information from a pro but now I have to convey this to our Dr.'s here. She really respected Dr. Erenberg who we see at Cleveland Clinic. She said he is the grandfather of Tourettes diagnosis. I also heard her to say she has Tourettes. He has also been very hesitant to ever prescribe anything. She said with age and desire you can learn to use Behavior Therapy but Andrew is young and just acts and doesn't think or care if he is pressing his face. As he gets older he may be better able to redirect himself. Just a side note. Andrew's tics seemed worse there plus since today he is having to urinate constantly again. He must be starting another episode again. He has been getting sick back to back since school started. I wonder if he's been exposed again to strep. I was swabbed and was negative. She said the urination is a compulsion and a good sign of the need to check the household for strep. He is acting alot more rowdy again today an making more motor sounds. It seems like the more I've tried to help him the worse he has become. I wonder why that is? I hope this was all worth the huge expense we made to visit her!

 

Michele

[trubiano]

Sports was a nightmare with my PANDAS son. Swimming lessons have been a huge help. It makes him feel special that he has his own interests. I tried a class type setting and he was unable to focus with all the other children. He did not like having to wait his turn. Private lessons are wonderful and he sleeps really well that night. Thanks Michelle for the info! I have treid Child Calm and didn;t see a difference. I'll keep looking.

[faith]

Hi Michele,

sounds like everything went very well, and thanks for relaying all that info on what you learned and got from Dr. Murphy. Its good to know what her professional opinion was on alot of the things we ask about and discuss here, even tho I'm not really in the PANDAS boat, but I like to soak in all knowledge.... So how much do we owe you?!!

 

Only thing I didn't get was what did they do as far as your son goes, was it just a consultation? Did they give the blood test for the titers to see where he stood? Or did you just bring your previous tests to her? Also, since he's been on the PenV, it hasn't improved anything? I'd think the doctor would agree he needed something different to try if that isn't working.

 

Faith

[michele]

She did suggest something stronger during an exacerbation. However now I need to convince the Dr.s here of that. It was an expensive trip to not realy get a change in scripts from her and still need to do work on my end with more Dr.s. She did say Ohio was the furthest anyone ever traveled to see her. I am glad to help anyone who is dealing with the same frustration of not knowing how to treat their child. They did say there is no right answer or easy description of what to do. It is all very individualized as we all know from this great forum.

Michele

 

 

Hi Michele,

sounds like everything went very well, and thanks for relaying all that info on what you learned and got from Dr. Murphy. Its good to know what her professional opinion was on alot of the things we ask about and discuss here, even tho I'm not really in the PANDAS boat, but I like to soak in all knowledge.... So how much do we owe you?!!

 

Only thing I didn't get was what did they do as far as your son goes, was it just a consultation? Did they give the blood test for the titers to see where he stood? Or did you just bring your previous tests to her? Also, since he's been on the PenV, it hasn't improved anything? I'd think the doctor would agree he needed something different to try if that isn't working.

 

Faith

[Chemar]

Michelle

I think Carole might be right on the restrictions on prescriptions from one state to another but not sure on that

 

 

 

also

could you confirm what you mentioned earlier re that Dr Murphy told you she has TS?

I do want to get that clarified as in our many visits there when my son was under the care of one of her associates for his TS, it was not once mentioned to us that Dr Murphy has TS, although she was frequently in the room during his visits.

I just want to be sure we get that info right here

[michele]

I thought I heard her to say she had it. She said just stated "I have it." Maybe I misunderstood her to what she had. I did not ask her for more since that is such a personal subject. I could always call and ask Dustin her intake coordinator. If I can't get his antibiotic changed I will be in touch with her again. I think she stated it to prove to me the tics don't hurt and don't have to get in the way and don't require meds. Maybe this is why she devotes her life work to tic issues. She has a very soft demeanor. She is soft spoken and very polite. I was shocked she was so tall and slim. I never saw her tic during the visit. She also mentioned she has a ten year old daughter. Between the two doctors we were with them from 8:15-12:15PM. They had alot of toys out and surprisingly candy sitting out in his office too. They felt Andrew's tics and ADHD seemed mild. She said to keep him active. Even while watching TV she said he could bounce on a ball. Also she recommends Mitzy Walsh's book and John March's book on Tourettes. She said to go online to tsa.usa.org or ed.advocasy to look it up.

Michele

 

 

 

Michelle

I think Carole might be right on the restrictions on prescriptions from one state to another but not sure on that

 

 

 

also

could you confirm what you mentioned earlier re that Dr Murphy told you she has TS?

I do want to get that clarified as in our many visits there when my son was under the care of one of her associates for his TS, it was not once mentioned to us that Dr Murphy has TS, although she was frequently in the room during his visits.

I just want to be sure we get that info right here

[Dedee]

Michele,

 

So glad to hear that you also had a good experience with the Shands Clinic. I felt everyone there was so helpful and polite. Your information from Dr. Murphy will be a great help to so many. My son does not have the ADHD component to PANDAS, only the OCD and Tics. I feel very fortunate that we have avoided that so far. My pediatrician was agreable to the suggestion of continuous antibiotics with the letter she received from Dr. Murphy after our visit. We haven't had any problems since. It sounds like she gave you alot to work with. I hope you are able to make progress with this plan. It must seem a bit overwhelming right now. I know you will be able to get things organized and going for your son. You are a very dedicated mother. Just take a deep breath and take it one step at a time. Thanks again for your post. Good Luck and God Bless.

 

Dedee