Doctor's Differing Views

[AmbersMommy]

Hi all, Dr. B. said he is 90% sure my daughter has PANDAS. He prescribed Azithromycin. He is also having me get the testing kit from Dr. C. as well as a Lyme test among other things. I am in a wait and see mode right now. I went to see my daughter's psychiatrist who has a differing view on what is happening. My daughter presented with hallucinations, anxiety, and tics. It was basically an overnight presentation. The psychiatrist says basically that she thinks it is an autoimmune response to a virus, possibly strept. Sounds like the PANDAS definition to me... The psychiatrist also says that it will just go away. Dr. B. says it won't it needs to be treated. The psychiatrist told me that I had to decide who was going to treat my daughter Dr. B. or herself. This woman is highly respected in her field. I also respect her, but was rather shocked by her saying this. I believe my daughter has other issues that she could help me deal with once this "exacerbation" of whatever it is is over. I convinced her that I would like my daughter to continue seeing her and Dr. B. as well. Has anyone else ever had this happen with doctors? I am trying to keep an open mind on what is going on until I get test results. I am so frustrated right now. My daughter is hallucinating a lot and I am dealing with the stress of how this is affecting our family as well as the uncertainty of whether it is ever going to go away. I feel like the psychiatrist was trying to strong-arm me. She also said I should stop getting other opinions because I was just going to continue to get different diagnoses???????...??? I am so very confused.

[tired mom]

I think any good Dr. would be ok with a second opinion. I understand you do not want to close the door on her but in no way should she make you feel like it is her way or the highway. In many illnesses there is definitly more then one doctor on board. She should welcome any information that is benificial in the treatment of your child...Good Luck

[mama2alex]

I'm so sorry you're having to deal with this, on top of your daughter's illness! From the way you described what each said, it doesn't sound the doctors differ on what is happening, just how to treat it (or whether to treat it in this case). It sounds like your psychiatrist is knowledgeable enough to know that strep or viruses can cause psychiatric symptoms, which is good. But she doesn't know how to properly treat it. Also, I think it's very wrong of her to demand that you only see her or Dr. B. - she is a psychiatrist and he is an immunologist, so how could you possibly replace one with the other? She may be "highly respected in her field," but she didn't present herself very well by making this demand on you. I've written off a couple of "highly respected" doctors so far and suspect that "highly respected" does not refer to how the patients/parents view them - possibly just reflects how big an ego they have.

 

Also, if your daughter is hallucinating, should you maybe consult a neurologist as well? I believe Dr. Trifiletti is a neurologist, but not sure.

[AmbersMommy]

I'm so sorry you're having to deal with this, on top of your daughter's illness! From the way you described what each said, it doesn't sound the doctors differ on what is happening, just how to treat it (or whether to treat it in this case). It sounds like your psychiatrist is knowledgeable enough to know that strep or viruses can cause psychiatric symptoms, which is good. But she doesn't know how to properly treat it. Also, I think it's very wrong of her to demand that you only see her or Dr. B. - she is a psychiatrist and he is an immunologist, so how could you possibly replace one with the other? She may be "highly respected in her field," but she didn't present herself very well by making this demand on you. I've written off a couple of "highly respected" doctors so far and suspect that "highly respected" does not refer to how the patients/parents view them - possibly just reflects how big an ego they have.

 

Also, if your daughter is hallucinating, should you maybe consult a neurologist as well? I believe Dr. Trifiletti is a neurologist, but not sure.

 

Thanks to both of you for the input. My daughter had a neurology consult a few weeks ago, but am not sure I am happy with it. They said neurologically she is fine. I guess I should be relieved. I may get a second opinion.

[mandyknowles]

I'm sorry, but if a dr told me that, i would tell them SEE YA! It doesnt matter to me how respected they are, as long as they try their best to work with other drs helping you. My daughter still has hallucinations and she has seen several psychatrists, whom say it is the illness. I refuse to put her on any medication for this, because it's stupid when it wont help.

[faith]

Lisamarie

How old is your daughter? may I ask what the differing views of your psychiatrist is? if what is going on with your daughter is fairly recent, I don't think its a bad idea at all to see how things go, I would not jump into anything and cut off your psychiatrist. it certainly is possible for things to come down from a recent illness, if it is strep or viral. do you know for sure if your child was sick with strep recently? what is the recommendation of this psychiatrist?

 

I think some people here make the mistake of not taking other doctors views or opinions into consideration, ...it certainly is up to the parent to decide who treats their child, but I'm sorry, just as some may think saying see ya to the doctor who doesn't agree with what you suspect, it doesn't mean that the doctor who tells us what we think we want to hear is necessarily the right option either.

 

wht will dr. b. do with these tests once he sees the results? it will only convince him, no one else. what is the basis of his plan of treatment? does he have a one size fits all approach? I think you need to fully know what is going on with your daughter before you make any decisions on treatment.

 

 

Faith

[norcalmom]

Since your phychiatrist wants to wait and see anyway, I would just tell her that you are going to pursue getting dd's immune system heathy, and tests for phycical illnesses (like viral encephalitis) before starting more traditional therapies, and that you would like to use her once your daughter is physically in a place where the strep related illness isn't overwhelming her. I would NOT wait to seek diagnosis and treatment.

 

You should absolutely get the Cunninghams' test,and strep tests/tiers done. Don't even need to tell your phychiatrist (although, the fact that she seems threatened by another doctors would worry me...especially since the other doc isn't a phychiatrist, but a medical doctor who is an expert in an infectious disease.)

 

If she had a minor tic, I would say wait and see is fine approach, but hallucinations can be sign of encephalitis. We only had ONE hallucination and that was when my ds's pandas was at its worst. Check out the reference to mycoplasma pnemonia in this study of encephaly:

 

Abstract The California Encephalitis Project (CEP), established in 1998 to explore encephalitic etiologies, has identified patients with N-methyl-D-aspartate receptor (NMDAR) antibodies, the likely etiology of their encephalitis. This study compares the presentation of such patients to those with viral encephalitis, so that infectious disease clinicians may identify individuals with this treatable disorder. Patients were physician-referred, and standardized forms were used to gather demographic, clinical, and laboratory data. Features of anti-NMDAR+ patients were compared with the viral encephalitides of enteroviral (EV), rabies, and herpes simplex-1 (HSV-1) origins. Sixteen cases with confirmed viral etiologies were all negative on NMDAR antibody testing. Ten anti-NMDAR+ patients were profiled with a median age of 18.5 years (range 11–31 years). None were Caucasian. They had a characteristic progression with prominent psychiatric symptoms, autonomic instability, significant neurologic abnormalities, and seizures. Two had a teratoma, and, of the remaining eight, four had serologic evidence of acute Mycoplasma infection. The clinical and imaging features of anti-NMDAR+ patients served to differentiate this autoimmune disorder from HSV-1, EV, and rabies. Unlike classic paraneoplastic encephalitis, anti-NMDAR encephalitis affects younger patients and is often treatable. The association of NMDAR antibodies in patients with possible Mycoplasma pneumoniae infection warrants further study.

 

Also - the flow chart that buster posted under "helpful threads for pandas" is somehting I shared with my immunoligist - who thought it was a completely reasonable approach. (course if I had access to a pandas specialist locally - I would just go there !)

[Tenacity]

There's a terrible shortage of child psychiatrists. But, what's worse than that is the excessive self-importance and myopia of so many of the few child psychiatrists we have! The attitude you describe in this doctor is quite familiar to me, and it's offensive, stupid, and downright dangerous. A doctor with no humility, no real scientific curiosity, no willingness to learn new things and work with other specialists, will not be able to help a child with a complicated, mysterious post-infectious autoimmune disease of the brain -- in fact, the doctor might do harm. Forgive the amateur psychoanalysis, but overconfidence on the outside can be a manifestation of underconfidence (even incompetence?) on the inside. Our duty as parents is to help our sick children any way we possibly can, not to cater to the whims of professional egos preoccupied with professional politics. When a doctor is too proprietary and claims to know it all, RUN!...

[AmbersMommy]

Lisamarie

How old is your daughter? may I ask what the differing views of your psychiatrist is? if what is going on with your daughter is fairly recent, I don't think its a bad idea at all to see how things go, I would not jump into anything and cut off your psychiatrist. it certainly is possible for things to come down from a recent illness, if it is strep or viral. do you know for sure if your child was sick with strep recently? what is the recommendation of this psychiatrist?

 

I think some people here make the mistake of not taking other doctors views or opinions into consideration, ...it certainly is up to the parent to decide who treats their child, but I'm sorry, just as some may think saying see ya to the doctor who doesn't agree with what you suspect, it doesn't mean that the doctor who tells us what we think we want to hear is necessarily the right option either.

 

wht will dr. b. do with these tests once he sees the results? it will only convince him, no one else. what is the basis of his plan of treatment? does he have a one size fits all approach? I think you need to fully know what is going on with your daughter before you make any decisions on treatment.

 

 

Faith

Faith,

The main differing view is that Dr. B. wants to try and treat what he sees as the cause of the hallucinations...infection or inflammation whereas the psychiatrist wants to give her Risperdol and seems to think that the hallucinations will just abate without any treatment. She says she has seen it before. The psychiatrist saw my daughter in the ED initially and told me that the hallucinations would be gone in 7-10 days. They weren't. It has been well over a month now, so I have trouble believing her. I know that medicine is not an exact science, but I can't help but being extremely skeptical of the it will just go away stance. Both docs believe it is an autimmune response that is post viral.

 

I am not really sure what Dr. B. sees as a next step when he gets the testing back. I am actually waiting to see if the tests we are getting done point to PANDAS per Dr. B. before we make any other moves. I plan on asking Dr. B. why he feels the test results point to PANDAS if indeed he feels they do. I did start her on Azithromycin per Dr. B. She apparently has a sinus infection which I should have realized with the yellow mucous coming out of her nose! Dr. B. also wanted her on it in case it is Lyme which she was tested for previously, but am getting a more accurate test done. He also said that the antibiotic would most likely help with the PANDAS symptoms as well since there is a current underlying sinus infection. Everything he has said so far has made logical sense to me. However, you are absolutely correct about me needing to know what is going on with my daughter before I make any decisions on any further treatment. Thank you for the input. Thanks everyone for the input you have given!!