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Amazing Dr's appt at Shands clinic


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Well our long awaited appointment with Dr. Murphy at the Shands clinic in Gainsville Fl. was well worth the 6 month wait and the 9 hour drive. Everyone there was soooo nice and extremely organized. No one had lost paper work or insurance information. I wasn't sure if Dr. Murphy was a real Dr. or a psychic :-). (Joking). She seemed to already know my son so well. She was able to describe him and all of his problems without us even telling her. She was truely so nice and understanding. She looked at his lab work and went over his history with him and with us (although my son was very nervous and wouldn't talk). She absolutely affirmed that he needs to be on antibiotic therapy to control his symptoms. It was a big help that I had kept detailed records (spread sheet) on his history of tics and emotional issues daily while both on and off antibiotics. I gave details of things he described and how often he was ticcing. That idea came from someone on this board. (Thanks so much). She really liked the "ticcing log", as we call it. It clearly shows how much better he does and how much more stable his moods are and his conduct in school is while on antibiotics. They kept the spread sheet for his file. She did decide to leave him on the Amoxicillin, even though I asked about Zithromax, because she said that she had seen many kids build a tolerance to Zithromax much faster than they do the Amoxicillin and we still have several years to go with him. Of course, she said that antibiotic therapy is still very contraversial (obviously, I came 9 hours), but when you have a child who clearly responds and you have repeatedly taken him off and each time get the same result, then when you re-start antibiotics the symptoms subside, it should be an unwritten rule. However, the average physician will not take risks on contraversial issues. So she is going to send my pediatrician a letter of treatment recomendations, which was all my pediatrician wanted. So we should be good to go now. What a huge relief.

 

Another thing she also recommended, was to start him on a Max EPA in the form of fish oil. I told her I had him on flaxseed oil but she said she would prefer him to be on a max EPA fish oil. She said I should probably start my other children on it as well. I didn't get a chance to ask why, but when I got home and did a google search I found lots of good information on using fish oils and EPA's in the treatment of psychological disorders in children. Pretty interesting stuff. Needless to say, I have that going already. She also suggested probiotics, which I have had him on for a couple of months. I was impressed that a doctor would think to bring that up though. She is very thorough.

 

Over all it was a great trip and I believe a blessing for our family. We received the affirmation that we needed that we were doing the right thing for our child. Our pediatrician got the letter she needed so she feels comfortable writing the prescriptions for us. If we have more problems in the future, we are established patients and we can get an appointment or make a consultation call. That is a huge comfort. I would encourage any parents who can not get answers from your current doctor or you feel your childs doctor is not knowledgable enough, please keep fighting for your child. I went to three "specialist" that my pediatrician sent me to, trying to find help for my son. In every situation, I knew more about PANDAS than they did. Not because they weren't very good doctors, of course they were, but I am a nurse, and I have done hours and hours of research on PANDAS and they have only skimmed the surface. I have had so much help from this board and would have been lost without everyone here. For us, it was very much worth the 6 months waiting period and the long drive to find an expert who knows everything about this disease that affects my child. She was so awesome and full of great information that was helpful to my family. I just wanted to share my experience in hopes that it is helpful to someone. Thanks for everyones help thus far in my journey.

 

Dedee

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oh Dedee what a pleasure to read your post ^_^

 

Your experience with Dr Murphy mirrors our own and I am so glad that you have the confirmations needed to continue correct treatments.

 

Cheri

 

ps fishoil is best, without a doubt.

 

some people with TS seem to tic more on it, hence the flaxseed oil substitute

 

but if kids tolerate fishoil well....that is by far the best source of omega 3 EFAs

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Hi Deedee,

 

That is wonderful news. I am so happy for you and your son.

After reading your post just before lunch I made sure to give my PANDAS son EFA. I had not been giving them to him for months and months and months - he went through a time where he was refusing to take the vitamins so I let it go - currently he is agreeable to a multi and probiotics (never up for negotiation) and his usual azith every 5 days. He took the EFA with no problem today and I will get back to giving it to him.

We are on azith and have been for almost a year with good results. Amox stopped working all together for us. We went off it as a test, things got bad quickly and then we went back on amox and he did not get better. I am hoping the azith continues to work for him long term - he is turning 9 this summer - so we have been dealing with this for 3 years now.

So glad amox is working for your son - it is nice that you know you always have azith in your back pocket if you need it - I am worried that if azith stops working for us we won't have anything. Hoping and praying it never comes to that.

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Thanks for everyones engouragement. Yes, I do believe this was a true God send. Amazingly, I never would have known anything about Dr. Murphy or the Shands clinic had it not been for the information gained here. I am so grateful that people are willing to give up their time and come here to support one another and share information in the hopes of helping another person struggling with the same issues. God's work is amazing.

 

I just wanted to add about the Max EPA, that she did mention that we should not give anything that had supplemental omega 6's. I have been doing alot of research on the max EPA and from what I understand this is very important because it is the disproportion of 3's to 6's that is one of the main issues. In addition, when choosing your fish oil, you should choose one that has a 2:1 balance of EPA to DHA. EPA should be the higher. I now have my entire family on it, including my three year old and my elderly mother :-).

 

Again, I would like to encourage those who struggle, as I did, with physicians who give you more anxiety than answers; to try to find the expert (their are only a handful) on your situation, and save your money, and make the trip. It will be worth the investment. Of course, we haven't gotten the bill yet :-). But we have been saving every extra dollar for months and months and we will be taking our vacation in our back yard this summer, but our family is at peace. Hope it lasts for a while.

 

Dedee

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Dedee!!

 

I just came to this website looking for help. We have been sent to every type of doctor and no one has been able to give us answers. I would love to hear what issues your child was struggling with and more on how you have been treating them. We are so confused on what is best for our 6 year old who has PANDAS. Luckly his tics went away the second round of antibiotics, but the OCD/behavior issues still come and go. Thank you for posting your information. You really have given us some hope that we can talk with someone(doctor) that knows what to do!

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Trubiano,

 

If you go back to Deedees post above yours, and click on her name in the upper left corner, it will give you the option of "read members posts."

 

Might give you some insight to her sons situation.

 

Welcome!

 

Deedee,

 

I'm so happy for your success!

 

Kim

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Trubiano,

 

If you go back to Deedees post above yours, and click on her name in the upper left corner, it will give you the option of "read members posts."

 

Might give you some insight to her sons situation.

 

Welcome!

 

Deedee,

 

I'm so happy for your success!

 

Kim

 

Thank you Kim!! So many more posts I haven't read!!

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We see Dr. Murphy too and she is an ANGEL. We were VERY lucky to be able to get into her PANDAS research group before it closed. We've been seeing her every 4 to 6 weeks for the past 11 months (a 12 hour round trip for us-but WORTH IT). I have learned soooo much from her! The one thing that is MOST apparent is that she and her staff REALLY CARE about the kids they see. DD always looks forward to seeing her "friends" that work with Dr. Murphy!

Well our long awaited appointment with Dr. Murphy at the Shands clinic in Gainsville Fl. was well worth the 6 month wait and the 9 hour drive. Everyone there was soooo nice and extremely organized. No one had lost paper work or insurance information. I wasn't sure if Dr. Murphy was a real Dr. or a psychic :-). (Joking). She seemed to already know my son so well. She was able to describe him and all of his problems without us even telling her. She was truely so nice and understanding. She looked at his lab work and went over his history with him and with us (although my son was very nervous and wouldn't talk). She absolutely affirmed that he needs to be on antibiotic therapy to control his symptoms. It was a big help that I had kept detailed records (spread sheet) on his history of tics and emotional issues daily while both on and off antibiotics. I gave details of things he described and how often he was ticcing. That idea came from someone on this board. (Thanks so much). She really liked the "ticcing log", as we call it. It clearly shows how much better he does and how much more stable his moods are and his conduct in school is while on antibiotics. They kept the spread sheet for his file. She did decide to leave him on the Amoxicillin, even though I asked about Zithromax, because she said that she had seen many kids build a tolerance to Zithromax much faster than they do the Amoxicillin and we still have several years to go with him. Of course, she said that antibiotic therapy is still very contraversial (obviously, I came 9 hours), but when you have a child who clearly responds and you have repeatedly taken him off and each time get the same result, then when you re-start antibiotics the symptoms subside, it should be an unwritten rule. However, the average physician will not take risks on contraversial issues. So she is going to send my pediatrician a letter of treatment recomendations, which was all my pediatrician wanted. So we should be good to go now. What a huge relief.

 

Another thing she also recommended, was to start him on a Max EPA in the form of fish oil. I told her I had him on flaxseed oil but she said she would prefer him to be on a max EPA fish oil. She said I should probably start my other children on it as well. I didn't get a chance to ask why, but when I got home and did a google search I found lots of good information on using fish oils and EPA's in the treatment of psychological disorders in children. Pretty interesting stuff. Needless to say, I have that going already. She also suggested probiotics, which I have had him on for a couple of months. I was impressed that a doctor would think to bring that up though. She is very thorough.

 

Over all it was a great trip and I believe a blessing for our family. We received the affirmation that we needed that we were doing the right thing for our child. Our pediatrician got the letter she needed so she feels comfortable writing the prescriptions for us. If we have more problems in the future, we are established patients and we can get an appointment or make a consultation call. That is a huge comfort. I would encourage any parents who can not get answers from your current doctor or you feel your childs doctor is not knowledgable enough, please keep fighting for your child. I went to three "specialist" that my pediatrician sent me to, trying to find help for my son. In every situation, I knew more about PANDAS than they did. Not because they weren't very good doctors, of course they were, but I am a nurse, and I have done hours and hours of research on PANDAS and they have only skimmed the surface. I have had so much help from this board and would have been lost without everyone here. For us, it was very much worth the 6 months waiting period and the long drive to find an expert who knows everything about this disease that affects my child. She was so awesome and full of great information that was helpful to my family. I just wanted to share my experience in hopes that it is helpful to someone. Thanks for everyones help thus far in my journey.

 

Dedee

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Cindy,

 

Thanks for the pm. Great to hear that you were able to get the help you needed for your dd as well. Is she on antibiotics or did she not require them. PANDAS is so different in each child, but equally devastating to each family. My heart breaks when I read posts from parents who can not get the help they need. I just want to shake some doctors and give them a wake up call. I shutter to think where my son would be if we had been complacent and followed the first doctors advice. I am also grateful to this forum for all of the wonderful information that I have learned here. Great to hear from you.

 

Dedee

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Cindy,

 

Thanks for the pm. Great to hear that you were able to get the help you needed for your dd as well. Is she on antibiotics or did she not require them. PANDAS is so different in each child, but equally devastating to each family. My heart breaks when I read posts from parents who can not get the help they need. I just want to shake some doctors and give them a wake up call. I shutter to think where my son would be if we had been complacent and followed the first doctors advice. I am also grateful to this forum for all of the wonderful information that I have learned here. Great to hear from you.

 

Dedee

Did you have trouble getting a hold of her? I called with a message on a referral of a Dr. in our area and never heard from her.

Michele

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  • 5 weeks later...

Actually yes, she said that it peaks when hormones peak (through puberty) then startes to subside in the late teens. Sometimes if you are lucky around 16-17 start seeing symptoms easing off. But for sure in the late teens early 20's at the latest. Only in very severe rare cases does this carry on to adult hood. She said best for us to try to wean him off the antibiotics every few years and see what the response is, that will give us the answer. My son is almost 12, so we haven't even begun to hit the peak hormones yet. Hope that helps. Nice to know there is an end in sight.

 

Dedee

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  • 1 month later...

I was wondering how your son has been doing after your son saw Dr.Murphy? Have you followed up with her or your doctor since the visit? What brand and amount of EPA fish oils do you give, Probiotics type and amounts? We are supposed to visit Dr. Murphy the 28th of Sept. I am hoping for some information and help from her. We are currently doing all of the same things as you. We have just finished having all the biomedical tests done. Results are showing an overgrowth of yeast in the digestive tract. I think I will have to try to get a copy of all the test results from the DAN Dr. for the visit. I hope they will be willing to provide them. The DAN Dr. has not gone over the results yet. I don't know what her feeling will be on the use of alternative treatments. Thanks for you advice. I just want some reassurance that we are doing the right things.

Michele

 

 

 

Well our long awaited appointment with Dr. Murphy at the Shands clinic in Gainsville Fl. was well worth the 6 month wait and the 9 hour drive. Everyone there was soooo nice and extremely organized. No one had lost paper work or insurance information. I wasn't sure if Dr. Murphy was a real Dr. or a psychic :-). (Joking). She seemed to already know my son so well. She was able to describe him and all of his problems without us even telling her. She was truely so nice and understanding. She looked at his lab work and went over his history with him and with us (although my son was very nervous and wouldn't talk). She absolutely affirmed that he needs to be on antibiotic therapy to control his symptoms. It was a big help that I had kept detailed records (spread sheet) on his history of tics and emotional issues daily while both on and off antibiotics. I gave details of things he described and how often he was ticcing. That idea came from someone on this board. (Thanks so much). She really liked the "ticcing log", as we call it. It clearly shows how much better he does and how much more stable his moods are and his conduct in school is while on antibiotics. They kept the spread sheet for his file. She did decide to leave him on the Amoxicillin, even though I asked about Zithromax, because she said that she had seen many kids build a tolerance to Zithromax much faster than they do the Amoxicillin and we still have several years to go with him. Of course, she said that antibiotic therapy is still very contraversial (obviously, I came 9 hours), but when you have a child who clearly responds and you have repeatedly taken him off and each time get the same result, then when you re-start antibiotics the symptoms subside, it should be an unwritten rule. However, the average physician will not take risks on contraversial issues. So she is going to send my pediatrician a letter of treatment recomendations, which was all my pediatrician wanted. So we should be good to go now. What a huge relief.

 

Another thing she also recommended, was to start him on a Max EPA in the form of fish oil. I told her I had him on flaxseed oil but she said she would prefer him to be on a max EPA fish oil. She said I should probably start my other children on it as well. I didn't get a chance to ask why, but when I got home and did a google search I found lots of good information on using fish oils and EPA's in the treatment of psychological disorders in children. Pretty interesting stuff. Needless to say, I have that going already. She also suggested probiotics, which I have had him on for a couple of months. I was impressed that a doctor would think to bring that up though. She is very thorough.

 

Over all it was a great trip and I believe a blessing for our family. We received the affirmation that we needed that we were doing the right thing for our child. Our pediatrician got the letter she needed so she feels comfortable writing the prescriptions for us. If we have more problems in the future, we are established patients and we can get an appointment or make a consultation call. That is a huge comfort. I would encourage any parents who can not get answers from your current doctor or you feel your childs doctor is not knowledgable enough, please keep fighting for your child. I went to three "specialist" that my pediatrician sent me to, trying to find help for my son. In every situation, I knew more about PANDAS than they did. Not because they weren't very good doctors, of course they were, but I am a nurse, and I have done hours and hours of research on PANDAS and they have only skimmed the surface. I have had so much help from this board and would have been lost without everyone here. For us, it was very much worth the 6 months waiting period and the long drive to find an expert who knows everything about this disease that affects my child. She was so awesome and full of great information that was helpful to my family. I just wanted to share my experience in hopes that it is helpful to someone. Thanks for everyones help thus far in my journey.

 

Dedee

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