our visit to Dr Murphy

[airbucket]

hello everyone -

 

Just thought id post a note about our appointment we had with Dr Murphy last Friday. Actually, unfortunately, the appointment was mostly with some other doctor (maybe there to do clinic or something?) and then Dr Murphy came in at the end for about 10 minutes. I asked why and Shands said that this is how they do it now, with Dr Murphy just supervising the other doctor. That was a dissapointment as I was there to pick Dr Murphys brain, and i didnt get to do that.

 

Basically, she Dx my son with Tourettes, OCD and High Functioning Autism! I think this did clear up some things for me because he has always been SO complicated and i could never put the pieces together, so the autism does make sense tho its hard to believe. She said that just by sheers numbers of kids she sees in her autism clinic, she is certain he has some high functioning form, like Aspergers. He does has TS, not just transient tics, and definitely OCD. It was a shame that the appointment amounted to this other doctor breezing over the paperwork i labored for a WEEK to fill out perfectly! then he asked a few questions about ocd and tics, then he left the room and came back in with Dr Murphy who checked my son out for a few minutes, saw him ticcing, and then told me what she thought.

 

She recommended probiotics, getting off fish oil, considering Risperodol, which i told her i wont, and seeing a DAN doctor, which we are doing jan 3rd.

 

I dont know what happened at shands that i only got 10 minutes of her time, and i guess once she saw the autism , she didnt need to talk about PANDAS. She swabbed his throat and mumbled somehting about no strep? Anyway, lesson learned, i think im done with the psychiatrists! she was very nice and clearly brilliant, but doesnt help if i cant get time to ask her anything! She seems like a VERY busy person the way she was in a rush and i dont know if i shiuold call the clinic and see if i can ask her the questions i didnt get around to at the appt? I was hoping to make the kind of connection or relationship with her that she could follow my son over the years, that i could call if i have a new question or something new pops up, etc, but im not even sure what to do now, maybe we will just move on to the DAN doc and forget about the psychiatrists. I dont know. Although we left there feeling like some piece of the puzzle was discovered, i have so many unasnwered questions. She talked about a kind of autism that is severe when the child is little (like my son was) and then gets so dramatically better that it appears like a reversal. So that didnt seem so bad. I told her i was very upset with our previous psychiatrist who insisted my son had no trace of autism any more and she explained that he is older and subscibes to a certain school that still sees autism one a narrrow way.

 

I went to the ASD section on here and was surprised to see not many postings....i was hoping it would be like the TS section with lots of people on it posting.....anyway, thats the update, live and LEARN! happy holidays to you all.

[Dedee]

Wow, Airbucket this is very surprising. It doesn't sound at all like what I would have expected. I'm not referring to the diagnosis, just the experience in general. Dr. Murphy usually spends as much time as needed with her patients and I am so disappointed that you were not able to get that opportunity as well. I am sure you had so many questions after having that bomb dropped in your lap. I wonder if she had some appointment or something she was needing to rush off to. But still, they shouldn't schedule patients if there is not time to answer all of their questions. I'm sure you left as confused as you came in. So do you have a DAN doctor picked out or did she suggest one? I am sorry for your disappointment. I hope you get more guidance and answers soon. Keep us updated on his progress. Hope your family has a Merry Christmas.

 

Dedee

[Calicat]

Hi Airbucket,

I really feel for you. I had SUCH a disappointing appointment with the first environmental doctor we got in to see, that I almost cried. I'm now on a waiting list for one I know is better (well, my friend sees her and says she's very good, anyway). But there is something so frustrating about waiting and hoping and counting on a professional, and then they just completely disappoint.

 

Hope it goes better with the DAN doc!

Calicat

[airbucket]

thank you deedee!

 

i really did not intend to bad mouth or anyting like that in post, i hope everyone woudl know that! we really liked dr murphy, just didnt like that it was another doctor for most of the appointment.

 

We already do have an appointment with a DAN doc, dr robbins in FL where we live. I am so excited for that. I think im just tired, after over 7 years of doing this, of the clinical setting and hospitals and evaluation forms and trying to stuff your child into a 3 page summary thats read in 2 minutes by someone who doesnt know you! It just irritates me in general. Something about that format doesnt seem right. But i would only recommend Dr Murphy to anyone, she is so smart and has so much knowledge i did feel that she could be trusted in her diagnoses. Just didnt get the time with her i needed. Maybe i didnt voice my needs, im not sure.

 

now that im in autism "world", wonder if anyone on this Tourettes section has a kid who has any ASD too??

 

 

thank you for your concern Deedee, we will just plug ahead. have a wonderful and happy holiday!

[bmom]

I just want to clarify, it is my understanding that Dr. Albert Robbins of Florida is wonderful with Tourettes, but I thought he was an Environmental Doctor. I think that protocal is quite a bit similar though. I could also be wrong on this.

[faith]

airbucket,

sorry your appointment was not all you expected...just to clarify, were you there just for a diagnosis, or did you really want to talk about PANDAS? Was this just a consult, or did they do any physical testing, like take blood to do the titers testing? Did you get to inquire if this is something that is a possibility? or does he not fit that criteria? Wow, maybe they are getting busy there with more and more cases of this, and I guess that's what happens, not having too much time to spend with each patient.

 

Well, at least you have a better idea of what is going on with your son. I think from what you described so far about your child, this diagnosis seems right. At least now you will know what type of things you are dealing with and where his behaviors fit in. Could I ask this -- I know you have mentioned some meds he was on in the past -- would you say he had less symptoms (tics, ocd, etc.) BEFORE you ever did meds, or after? I mean, I know you thought the abilify? helped for a while, but would you say when things came back, did it all seem way more than what you were dealing with before you tried any medications?

 

I think you will do well with Dr. Robbins, (our "Carolyn lsc" sees him, so if you have any questions about him, you could inquire from her), I think he is an environmental doc, but also a DAN so may be able to help with the natural treatments. Its certainly worth a try. And if a little autism is involved, the treatments may very well improve that aspect, as well as the tics. I really think things will get better as he matures a little. How are things going with his school right now, did he make the move to a new class or no?

 

Blessings,

Faith

[michele]

Airbucket,

Thanks for sharing your appointment with us. I am sure you feel relief in getting a diagnosis from an expert in the field. Dr. Murphy came in during the second part of our appointment. However, she stayed and sat and talked for some time until I was done questioning. Maybe she had more appointments but it is too bad you didn't get to talk to her longer. Did your son have any PANDAS symptoms from exposure to strep like tics, ocd, adhd? I am glad you will now be able to go in the right direction. Also it is interesting she reccomends the DAN approach. My son has alot of the quirks of mild autism too with the marked likes and obsessions. I think it is a culmination of the vaccines on a fragile neurological system and the strep attack on the basal ganglia. Does your son much? My son is very verbal and talks excessively. How about talking scripts from movies? My son loves movies and memorizes lines and details that are unbelievable. Plus he has quirks like he can't stop talking about moles on the skin and notices them and points them out. Does your son have quirks? How about friends? Is he a loner or does he join in with groups? My son seems to like friends alot. Just wondering what they based the diagnosis on? Please keep us informed and all the best. We have been treating the DAN approach. I am really interested in what you will find with the testing the DAN will do.

 

Michele

airbucket,

sorry your appointment was not all you expected...just to clarify, were you there just for a diagnosis, or did you really want to talk about PANDAS? Was this just a consult, or did they do any physical testing, like take blood to do the titers testing? Did you get to inquire if this is something that is a possibility? or does he not fit that criteria? Wow, maybe they are getting busy there with more and more cases of this, and I guess that's what happens, not having too much time to spend with each patient.

 

Well, at least you have a better idea of what is going on with your son. I think from what you described so far about your child, this diagnosis seems right. At least now you will know what type of things you are dealing with and where his behaviors fit in. Could I ask this -- I know you have mentioned some meds he was on in the past -- would you say he had less symptoms (tics, ocd, etc.) BEFORE you ever did meds, or after? I mean, I know you thought the abilify? helped for a while, but would you say when things came back, did it all seem way more than what you were dealing with before you tried any medications?

 

I think you will do well with Dr. Robbins, (our "Carolyn lsc" sees him, so if you have any questions about him, you could inquire from her), I think he is an environmental doc, but also a DAN so may be able to help with the natural treatments. Its certainly worth a try. And if a little autism is involved, the treatments may very well improve that aspect, as well as the tics. I really think things will get better as he matures a little. How are things going with his school right now, did he make the move to a new class or no?

 

Blessings,

Faith

[kim]

Airbucket,

 

 

From Michelles post above

 

Also it is interesting she reccomends the DAN approach

I found that interesting too!

 

I just wanted to say that I wouldn't hesitate to call and leave a message for Dr. Murphy to call you back. That appt. probably cost you/your insurance plenty. I bet she wouldn't mind a bit, if you just explained that you felt your time with her, personally, was too short to have all of your questions answered. If she can return your call at her convenience, she probably won't be so rushed.

 

On another note, I hope you don't feel somehow alienated by the autism sectrum diagnosis. This was just being discussed on another bd. They were using the phrase "autism lite." If you look at many many children, I think you will find at least some symptom that would qualify as part of the ASD's (with or without tics). The lines seem to be becoming quite blurry. Personally, I wouldn't focus on the label, just the particular problems that your child has.

 

Since sooo many children are affected by these disorders (and it's finally be acknowledged!) I'm hopeful that there will be some real answers in the near future. Here is an article that someone just posted yesterday. Will any of this research be helpful to children with tics/ts and in some instances related disorders, I sure am hopeful!

 

http://web.mit.edu/newsoffice/2007/fragilex-1219.html

 

 

"Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin," Bear said.

 

Earlier this year, MIT Picower Institute researcher Susumu Tonegawa and colleagues reported positive results using a different approach to reversing FXS symptoms. Tonegawa and colleagues identified a key enzyme called p21-activated kinase, or PAK, that affects the number, size and shape of connections between neurons.

[airbucket]

hi Faith -

 

they did not take blood, she swabbed his throat is all. it was a 2 hour Dx evaluation and the diagnosis does seem right i agree.

 

I have to tell you, be it coincidence or not, my son is much worse since the abilify. We have not seen him this bad since he was 4 or 5, it is a total regression, and yes, we are veen seeing new things since the abilify that we had never seen. Its been 2 months almost he has been off it, so am i to assume it damaged him? the tics are not worse, they are about the same, its everything else thats worse. Before the abilify he was never depressive, now he is depressed and talks a lot about dying and hating everyone etc. so defenitely things are much worse since we tried meds then they were before in new ways.

 

I have no idea what to do. We are going to the DAN dr next week, i dont know what he will think but at least we will get going on some alternative treatment. He did move to a new school which i guess is going better in terms of less freak outs at school, but he is miserably unhappy. Why would an 8 year old be so upset all the time? He is acting like a 2 year old in every regard. I will sue the makers of abilify if it has anything to do with my sons decline!

 

thank you for your concern faith, the support is so great! I will report back after we see Dr Robbins, thanks and take care and hope you are having a good holiday!

 

 

airbucket,

sorry your appointment was not all you expected...just to clarify, were you there just for a diagnosis, or did you really want to talk about PANDAS? Was this just a consult, or did they do any physical testing, like take blood to do the titers testing? Did you get to inquire if this is something that is a possibility? or does he not fit that criteria? Wow, maybe they are getting busy there with more and more cases of this, and I guess that's what happens, not having too much time to spend with each patient.

 

Well, at least you have a better idea of what is going on with your son. I think from what you described so far about your child, this diagnosis seems right. At least now you will know what type of things you are dealing with and where his behaviors fit in. Could I ask this -- I know you have mentioned some meds he was on in the past -- would you say he had less symptoms (tics, ocd, etc.) BEFORE you ever did meds, or after? I mean, I know you thought the abilify? helped for a while, but would you say when things came back, did it all seem way more than what you were dealing with before you tried any medications?

 

I think you will do well with Dr. Robbins, (our "Carolyn lsc" sees him, so if you have any questions about him, you could inquire from her), I think he is an environmental doc, but also a DAN so may be able to help with the natural treatments. Its certainly worth a try. And if a little autism is involved, the treatments may very well improve that aspect, as well as the tics. I really think things will get better as he matures a little. How are things going with his school right now, did he make the move to a new class or no?

 

Blessings,

Faith

[Chemar]

Dear Airbucket

 

your post caught my attention as my son had severe reactions when on meds with a sudden occurrence of depression, anxiety, phobia, fears, and he developed drug induced psychosis and debilitating OCD. He never had abilify so i have no personal knowledge there. I have heard good and bad reports on it.

 

It took a while for the side effects to wear off and some may have had a deeper impact.

 

I am truly surprised at your appt at Shands as that was not what we experienced. Perhaps there has been a major influx of patients and not enough of Dr Murphy to go around. She is very thorough and we certainly found her very willing to answer questions and advise on options etc. Once it was determined that my son was not a PANDAS patient, we moved to one of her associates, who was instrumental in helping us with so much understanding of my son's side effects and especially helped us with the complex overlap of the OCD and tics.

He is also the one who helped us wean off the meds and supervised the withdrawal with great care by phone, as we live 2+ hrs away.

 

anyway, I look forward to your report on your visit to dr Robbins. I have heard very good things about him from Carolyn

[emilyt]

Airbucket--

 

I'm new to this site, and your post immediately caught my eye. The reason is that my 7 year old son began with his tic disorder in August '07, while his only other issue is significant ADHD. Anyway, our local pediatrician didn't really know what to do, so she consulted by phone a neurologist in Pensacola (I'm in Panama City) about treatment of the tic disorder. Anyway, they agreed on a med to start him on, and I took him into see the pediatric neurologist as well. After I didn't like their evaluation, I self-referred us to Dr. Murphy's Tic Disorder Clinic. We saw her early November. Now, I was told prior to the appointment that it would be a 2 hour appointment, one hour with a resident, and one hour with Dr. Murphy. After all was said and done, we spent 3 hours total in the appointment, with the last 45 mins with Dr. Murphy.

 

I went in with the intention of seeking a competent evaluation and treatment plan for my son's ADHD and tic disorder, because it seems that when you treat one, the other gets worse. What I got was a whole lot more. She asked if he'd ever had strep, which of course he had. She asked when the last time was, and it was late July--just before the tics started. While she raised an eyebrow, her only recommendation from there was to take him into his pediatrician for a throat swab if his tics suddenly got worse. Remembering that, we are where we are today.......

 

He had an abcessed tooth 2 weeks ago that he was on antibiotics for. On day 3 of antibiotics, we noticed his tics were completely gone. My brain did a quick rewind, and I wondered if the PANDAS association was possible. To make a long story short (too late), his ASO titer was 596 (normal is less than 150 or 200), and he now has the diagnosis and we've just embarked on 3 weeks of antibiotics.

 

The moral of my story is this--I would be cautious about going into any expert in any field and expect a specific answer. Just because she or her resident didn't give you the diagnosis you were looking for doesn't necessarily mean they are wrong. From my research, there are very few experts in the PANDAS field, but she is one of them. I immediately called her office when he got better on antibiotics, and her nurse (Deborah) took my info, and I have been in nearly daily email contact with the resident we saw. I ask him a question, he replies with an answer, and I take it to our pediatrician for her to deal with (labs, meds).

 

Anyway, didn't mean to sound harsh, but we've had a very productive, positive experience with Dr. Murphy and her peeps very recently. Although I am finding myself dizzy these days from dealing with everyone AND my sons.

 

Also, my younger son is on the Autism spectrum. I have emailed several high-ranking docs to find out if there's any genetic correlation. Who knows, I bet no one can answer that one yet. There just doesn't seem like there's much data out there.

 

And they say this hard stuff is supposed to make us stronger.........

 

Emily

[P_Mom]

Hi Emily,

Couple quick questions, what antibiotic was your son on (and how much), when he had his tooth problem? Which are you taking now for three weeks? Is this three week dose for an infection, or for the tics?

Take Care,

Kelly

[bmom]

Emily, Recently Kim posted a speech from Dr. Demio on the sibling relationship. I haven't finished it yet, but you may want to listen to it as it discusses that particular thing.

[faith]

Hello Emily,

Could you just clarify-did you say your son IS on a med? or did the docs just agree to put him on and you refused? You just want to be sure the antibiotic is having the effect and not the med?

 

Also, you say he started with tics last August of '07? Could I ask if you ever noticed anything prior to that, anything that could be regarded as a tic even a year or two or more before that time? And may I ask when the last vaccines of any kind were for him and your other child on the autism spectrum?

 

Sorry, for the questions without explanation, but I get a little hyped on certain aspects and so like to compare notes on some of our cases to see if I can boost my intuitions. Sometimes it helps to see the similarities.

 

Thanks for your input.

 

Faith

[emilyt]

Kelly,

 

He was on Amoxicillin 250 mg every 8 hours for the abcessed tooth when we noticed the tics stopping. His dentist changed that after 4 days to Clendomycin--to be more aggressive on the abcess--and his tics came back. Now, Dr. Murphy and his pediatrician have agreed to try Omnicef 300mg twice daily for 3 weeks to see if it helps his tics. (I understand Dr. Murphy recently completed a study using Omnicef that has yet to be published). Anyway, we just started that Monday. We'll see what happens.