our visit to Dr Murphy

[emilyt]

Faith,

 

He was originally started on Tenex for the tics. I realize this is an alternative methods board, so I don't know how others here feel about that. Anyway, he has been on the Tenex since his tics initially started in August at the same dosage. We had never seen a huge improvement with it, as he is still ticing on the Tenex (but I don't know how bad he'd be off of it, either).

 

As for a history of tics, the only other thing that is notable about his history is that we had taken him to an allergist a couple of years ago for a persistent throat clearing. They gave him a huge workup, which included cystic fibrosis sweat test, a barium swallow, and allergy testing with 56 pin pricks. Although he tested significantly positive to some outdoor allergens, I remember the allergy doctor telling us he thought the constant throat clearing was "attention-seeking behavior". Looking back, I think it was a tic, which he still has today although it is less.

 

As for the vaccinations, my kids just get them on the regular childhood schedule. I don't know the exact dates. I've never dwelled on the vaccination theory--not to say it's not possible. I've been too busy dealing with treatments (and insurance, and IEPs) for autism, ADHD, and now PANDAS. I'm sure you know what I mean!

 

Emily

[bmom]

Did you see a reduction in his tics when he started on the Tenex and has he had any side effects? I like to keep up on all info. thanks for posting as I am sure that you have your hands full. Have you ever checked into a DAN dr. for either of your sons. I know it is expensive, but some treat both issues.

[emilyt]

I did see an initial reduction in his tics with Tenex. They have never stopped, and they have changed from his head and neck to his hands and fingers currently.

 

I have heard about DAN, but we have chosen not to go that route currently. There are completely opposing rules of thought on alternative vs. traditional methods of treatment, and my husband and I have decided on tons of ABA therapy for our son with autism and meds for my other son.

 

Thanks,

Emily

[michele]

Emily thanks for sharing your experiences here. I am sure you are on an emotional rollercoaster right now. Has your autistic child ever shown any of the same symptoms as the PANDAS child? I have read there are alot of similarities. In fact some articles place PANDAS on the spectrum of autism. My son who is five also saw Dr. Murphy. He shows some quirkey behaviors like dwelling on the same things. Getting stuck on ideas or themes. However he also has the immune issues and tics brought on by strep throat. Language has never been an issue for him as he is very verbal and articulate. In fact he will talk on and on excessively. Does your autistic child communicate well? It is like he has too many endorphins in the brain and gets over done. I was really impressed they told you to email at Shands. I have had questions for Dr. Murphy but never talked to her since the appointment. If you are in daily contact I think you are at a huge advantage with the PANDAS. Can they help refer you with a Dr. in your area? Where do you live? That has been our biggest hurdle finding a Dr. who knows something on the subject of PANDAS. In fact most I have seen question its existance. They see it as an immune tic disorder but seem unsure of treatment. Did Shands prescribe or recommend antibiotics for you to take during flare ups of symptoms? What are they if so? Omniseph works best for my son. In fact he is now tic free for the first time in four months while on it for three weeks and motor skills improved too while taking it. Dr. Murphy recommended OT and it has been a huge help with handwriting and core muscles usage. We have gone the DAN route along with the traditional method also. It is expensive but at least the Dr. does work up a specific plan based on labs and conversations and observations. I have to admit though during the waning stage we are in now I have let him splurge on a normal diet and cut back on supplements and he is still much better. All I can figure is it is the omniseph and the fact he is in a wane state for the past three weeks. They have never tried tenex for him because of his age I guess. Ours came on in the head, eyes and fingers initially and worked up to cracking in fingers and toes repeatively. It was gradul at first and kept getting worse and lasting longer with age and repeat exposures. I hope you will share more of your experiences here with us. It really helps to gather up the facts and compare notes on this stuff since we seem very alone. Our school had never heard of a case of this before. My son is the first diagnosed. It is as if we must pave the road to help others while trying to help our own kids. All the best.

Michele

I did see an initial reduction in his tics with Tenex. They have never stopped, and they have changed from his head and neck to his hands and fingers currently.

 

I have heard about DAN, but we have chosen not to go that route currently. There are completely opposing rules of thought on alternative vs. traditional methods of treatment, and my husband and I have decided on tons of ABA therapy for our son with autism and meds for my other son.

 

Thanks,

Emily

[emilyt]

Michele,

 

Thanks for your reply. I am going to attempt to answer all of your questions. In regards to similarities in my PANDAS child and my autism spectrum child, I really can't appreciate any. My youngest is pretty high functioning, we hope to have him prepared enough for a typical first grade classroom next year. He is verbal, but his communication skills are obviously behind kids of his age. His other significant weakness is social skills, he'll do whatever you instruct him to do socially, he just lacks the ability most of us are born with to do it on his own--unprompted. Anyway, he is getting much better though, with alot of behavior therapy. He does get stuck on phrases, for the past 3 days it's "Can we go fishing?" over and over and over and over.

 

I am pleased with my pediatrician so far. She has welcomed input from Shands and she has been aggressive with her workup and treatment plans. She seems like she is somewhat familiar with PANDAS, but I don't know if she's ever had a pt with it or not. We live in the Panama City, FL area.

 

We just started his first dose of Omnicef on Monday of this week, and I have not seen any change yet. His tics are mild to moderate, so I'm comfortable with taking time and seeing what works. As for the Tenex, that is one tricky drug. I'm not unhappy with it, but it is a bit challenging titrating the dosages up and down while monitoring the side effects. If we are late on a dosage, he tells me he feels himself shivering on the inside, "but I'm not cold". If he gets too much, then he complains of weakness.

 

Anyway, I think I answered your questions. Let me know if you would like any more info. I'm still trying to figure this discussion board stuff out, and I'm trying real hard to keep up with responses. :-D

 

Emily

[bmom]

Michelle- Just to let you know Dr. Murphy's assistant has been very good about emailing me as well. They did recommend a Dr. closer to me although he is still in another state and 8 hours away, but they were trying to give me other options than going to Florida as it is pretty far away from us.

[airbucket]

Thank you for your reply, it is wonderful that you were able to identify your son's pandas with the help of Dr Murhpy. I do not think Dr murphy or her colleague were wrong at all, actually her diagnoses opened my eyes and helped me see the symptoms more clearly. Without her evaluation, I would not be on a more clear path to helping my son feel better. I really did not mean to send the message that I was not pleased with her. In our case she didnt seem to feel that pandas was at issue, and I tend to agree. She encouraged pursuing DAN treatment, suggested Coromega and probiotics. I found her refershingly open minded. What bothered me I now think was a combination of not being as prepared as I needed to be along with a rushed feeling I got all around. Maybe it was just one of those days. But I would continue to recommend her and I am planning to call next week and purse some of the questions I left unanswered.

 

What types of things do you do, if any, with your child who is on the autism spectrum>? We just saw a "DAN" doctor today for the first time, it was very interesting, we hope to pursue some of the ideas he discussed. the first thing he suggested was a yeast/mold/dairy free diet. So we are starting there. Good luck and thank you!

 

 

 

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

[emilyt]

Airbucket,

 

What is an airbucket anyway? :-}

 

For my son with autism spectrum disorder (PDD-NOS), we have used intensive behavioral therapy (ABA) for the past 2+ years. We have seen massive measurable success with it. After all I have learned about treatment of autism, I would recommend that whatever route any parent chooses, measure its success. Try one therapy/vitamin/drug/whatever at a time, pick a targeted behavior you'd like to see improve, and measure it with numbers before and after you start treatment. Otherwise, you will be saying that you started several things as recommended, and you think he's a little better. How will you know what to continue? Is the amount of improvement enough to stick with? You will definitively be able to answer those very important questions if you look at measurable data before and after starting anything.

 

For that matter, it's a good idea for any of these problems being discussed in my opinion. I hear and read frequently that a parent thinks their child is better. Speaking of my other son now, if there was a way to count his tics before starting Tenex or antibiotic, put him on the med, then count a few days later, I would definitely know if it's working. I just can't figure out an accurate way to count his tics (in his fingers and hands currently). Believe me, I've thought about this one alot.

 

BTW--which one of the residents did you see at Shands w/Dr. Murphy?

 

Emily

[michele]

Did you see Dr Gaines as her assistant? They never suggested email to me and I flew in from Ohio. I have not heard from them since the Oct. appointment. Murphy was really impressed with my neurology Dr.'s name from the cleveland clinic but he has not done anything to help us thus far. I know he is doubtful PANDAS exists so uses a watch and see philosopy. I appreciated Dr. Murphy's suggestions but felt like while she understood my son I am in the situation where the other Dr's back home in Ohio don't. I get frustrated. It is not fare to take him Dr. to Dr. to try to find on who may know something about the treatment. I did recently contact a Dr. at University Hospital named Dr. Berger who may be doing some work on treating PANDAS and immune problems. Other then Dr. Demio the biomedical Dr. the rest don't seem too keen on getting up to date on this thing. I ordered specialized amino acids today that will be compounded for him. I hope these will help. I may have to email Dr. Murphy.

Michele

Michelle- Just to let you know Dr. Murphy's assistant has been very good about emailing me as well. They did recommend a Dr. closer to me although he is still in another state and 8 hours away, but they were trying to give me other options than going to Florida as it is pretty far away from us.

[emilyt]

Yes, I did see Dr. Gaines, too. I know what you mean about taking them from Dr. to Dr. Thats' why I believe it's up to us to be as informed as possible. I bet many of us already know more than some of these doctors about this stuff. We went to see a neurologist first, and they were useless. We will not be back, and they do not exist in his plan of care now.

 

Anyway, when I called into their nurse, Deborah, she offered Dr. Murphy's email address, and I gave her mine instead because I couldn't write when I was talking to her. Dr. Gaines returned my email, and we have gone back and forth since. It's not perfect, because I've had a question lingering out there for a few days now, but I bet if the University is closed for the holidays, then he doesn't check the email.

 

Emily

[bmom]

Michelle- Are you seeing improvements with Dr. Demio's program? If yes, are they big or small gains?

[michele]

I noticed Gaines was very against the alternative route we had been seeking. He condemed the diet and said none of the beliefs had been proven by research they are all a theory based on a hunch. If they had proof then why wouldn't they prove themselves with documentation. For a young guy he was a bit sure of himself. But... I have not emailed him and may need to if we ever get to a desperate place and can't find the answers locally. I made a new appointment with Dr. Berger for Mon. I can't tell my son because he is a bit freaked out over Dr's after all he has been through with seeing so many. I don't want him nervous and then he may start the tics up again. I just want a Dr. in place who knows PANDAS and how to treat these epsodes. We are so much better now then we had been for the past four months but I know the ugly guy that lurks around the corner. Just when I start to feel like maybe he is fine and doesn't have the PANDAS it reappears to our dismay. Last year it went away for three months before coming back and lasting for two months. . Then last time it came back after two months and stayed for four months. This was the worst episode by far yet we were trying more alternative approaches and meds then ever before. I wonder if all of the change kind of freaked him out. Please let us know if Dr. Gaines or Dr. Murphy gives you any good advice for dealing with this. Sincerely,

Michele

Yes, I did see Dr. Gaines, too. I know what you mean about taking them from Dr. to Dr. Thats' why I believe it's up to us to be as informed as possible. I bet many of us already know more than some of these doctors about this stuff. We went to see a neurologist first, and they were useless. We will not be back, and they do not exist in his plan of care now.

 

Anyway, when I called into their nurse, Deborah, she offered Dr. Murphy's email address, and I gave her mine instead because I couldn't write when I was talking to her. Dr. Gaines returned my email, and we have gone back and forth since. It's not perfect, because I've had a question lingering out there for a few days now, but I bet if the University is closed for the holidays, then he doesn't check the email.

 

Emily

[emilyt]

No surprise at all that most traditional clinicians are against alternative treatments. Interesting that you are going to another doctor in hopes he knows PANDAS and can treat your child's episodes--isn't that what you have with Dr. Murphy? Are you looking for an alternative medicine doctor that can help you when he has his episodes? I guess that would make more sense. Sorry--I guess I'm thinking out loud....or something .

 

Do you know if your child's titers rise when he has episodes?

 

Emily

[P_Mom]

Emily,

How is your son doing after starting the antibiotic this past Monday?

[emilyt]

Thanks so much for asking. We have not seen the improvement we had seen with Amoxicillin (which was accidental, he was on it for the abcessed tooth). Today is day #5 of Omnicef and I haven't seen him yet to note if there's any improvement (he was asleep when I left for work). Still watching and waiting.

 

Thanks again,

Emily