DD's Doctor Quit on Us!

[Lacy]

What a day yesterday was!

 

A brief detail...

Our DD's pediatrician kept pushing a particular psychiatrist on us and finally when we came to yet another deadend we scheduled an appointment to see her. We first saw her back in May and I broke down in tears of relief because she said she would help us, and that she wasn't ruling out PANDAS even though she felt it wasn't a clear cut case of PANDAS. She even told me that she'd call Susan Swedo to get her take on things. But for now, so that we could approach this in a scientific method (because that's what really speaks - proven results), she wanted DD off all medications and to start over. Since taking her off the antibiotics (and the Lamictal which wasn't helping at all), DD's behaviors have been in a downward spiral. Luckily she's on her summer break, so where it usually manifests itself the most - at school in the form of complete meltdowns, we've been able to deal with it at home and luckily the sitter's.

 

Fast forward to yesterday...

I was extremely relieved that DH could attend this appointment with us, and so he could meet this doctor who was "willing to help us". I'm so grateful he did come because I was completely unprepared for what would transpire during our visit.

 

The doctor wanted to know how things were going, and I gave her a high level, but "to the point" journal that I had been keeping since our last appointment. This journal was very high level and in large font (doctors I've found don't have time to read through pages and pages of documents - although I think that's a poor excuse). So I was a little taken aback when she looked at it as if it were a foreign object and then absently laid it ontop of some misc. files. At this point, I'm still thinking we're on track, and that she might read it later.

 

The doctor started the onslaught of questions to DD (who is not quite 8 yet - soon) with her cronies (as DH later called them) stared on. I think the cronies were students. She barely introduced them to us. DD was too shy and put on the spot to answer any question with genuine thought. She just agreed or said I don't know to all questions and meekly looked at the cronies across from her. At some point I became frustrated with the lack of "kid gloves" the doctor was using during her q&a session so I started asking the same questions only a little more kid-friendly. I tried to get DD to tell me the answer, but the doctor got bored of that or must have thought I wasn't qualified enough to repeat the questions because she moved the subject along.

 

I tried to explain to the doctor that since taking DD off antibiotics (and that stupid good-for-nothing Lamictal that I still don't believe helped), that DD had been experiencing OCD thoughts again, and that she had becoming uncharacteristically clingy towards us. I'm not sure if there was a language barrier, or if I wasn't being clear because I found that the majority of the appointment I was being talked over - not allowed to answer questions accurately - oh this part is good...

 

She specifically asked us to rate DD's OCD behavior on a scale of 1-10. Sure! Only problem was that her scale criteria didn't accurately describe DD's OCD behaviors correctly. 1 was no OCD, and 10 was that DD was so OCD she wouldn't leave the house. I tried to explain that wasn't how her OCD was manifesting itself, but she absolutely refused to hear me out. Throughout the appointment she would continue to cut me off and talk over me. She was so disrespectful. I thought doctors are supposed to listen??

 

At some point she said that she did her "due dilligence" and that nowhere in the information that I had provided her did it reflect any symptoms of PANDAS - and she kept reminding us that she knew what PANDAS was because by darn she's had patients with it that she treats. Uh huh. She said that typical PANDAS patients had elevated titers levels and DH stopped her on the spot and said, well then your due dilligence would have shown you that DD's titers levels were completely off the charts and only come down (still not into 'normal' levels, but it comes down) with the introduction of antibiotics. She didn't seem to remember those results and I completely forgot to ask her whether or not she even received the enormous mailed packet of DD's medical information and tests I mailed to her - doesn't matter.

 

This doctor said that ethically she could not, and (she said this:) to be clear WOULD NOT prescibe DD antibiotics when she didn't believe this was PANDAS. That is was obvious (by this time I'm in quiet tears and must look pretty PO'ed, because she look at me and said this) that DD's issues were clearly anxiety and there was family history of mental issues... and somewhere in this she said (I didn't hear this) to me - I'm not impressed with your tears. DH heard this and told her that the tears she was seeing from me were tears of frustration with the way our appoointment was moving forward.

 

Ultimately the doctor said that we needed to find a medical professional that we trust who will help us. I almost laughed outloud when she said this, but managed to keep it together enough to spit out - what did she think we were doing?? And have been doing?? We've been seeing various medical professionals since DD was four years old - trying to find someone who was willing to help us and credible, and not a hack. I think at that point she thought I was calling her a hack because she stopped me short and informed me that she didn't even have to respond to that because she knew she absolutely was not a hack and started laughing(!!) at me and looking at her cronies who joined in.

 

I think by this point we knew we were officially in the Twilight Zone.

 

We must've looked pretty funny - me especially with my tear stained face (red nose and eyes), and I'm sure I must've stared at her like she had lost her mind because she ended the conversation with telling us it would not be necessary to schedule another appointment with her.

 

I'm leaving out a lot of details but we pretty much spent the session going round and round in circles. I couldn't get her to explain to me why she wanted to use psychiatric medications when quite clearly antibiotics were working. She just wouldn't respond - she'd start talking about something else and seemed satisfied that she was answering my question.

 

Sorry for rambling on. If you all are like me, you're probably wanting to know this doctor's name. Message me if you're interested - she practices here in Richmond, VA at the Virginia Treatment Center for Children (aka: VTCC), I would be happy to relay the info.

 

Thanks for lending an ear! I'm going to go start back at square one now.

[Suzan]

Oh wow, how awful. I can totally imagine what you guys were going through. I am sooooo sorry! Have you told your Ped yet? I hope he/she is outraged by this......

 

How far is Richmond, VA from MD? Have you looked into seeing Dr. Latimer?

 

Susan

[ShaesMom]

Lacy,

 

I'm so sorry that you had to experience this. It clearly sounds like this Dr had only one thing on her mind--impressing her cronies. Obviously, she did nothing except make herself look like an unsympathic, uneducated moron. Can you report the experience to your medical licensing agency?

 

I'm sorry that your dd had to witness the whole experience. Sadly, our kids are learning that the medical community is not all it is cracked up to be.

 

We had a Ped. quit on us about three years ago when I insisted on knowing why my dd had a urinary tract infection for over 9 months. Everytime I would call with questions I would speak with a different nurse who would give me different info than the person I spoke to the day before. I was very frustrated and apparently they could hear it my voice. they told us the reason they were kicking us out was because I was rude. I could have understood this reason if I had used foul language with one of the employees or made a scene at the front desk, but none of these things happened. I was just tired of treating her without trying to find out why she was having this problem. Anyway, it actually turned out to be the best thing that could have happened. We spent five minutes with a Ped GI who told us she was plugged up. We spent the weekend cleaning her out and the UTI's went away.

 

Take today to stew about it and then start again tomorrow with a clear head looking for the help your dd needs. Keep your faith and hope and you will find help.

[P_Mom]

yes...Lacy, you are in Virginia...go see Dr. Latimer.

[thereishope]

Wow. Just how do all these ignorant doctors get their fricken medical degrees? And let's add insult to injury...you had to PAY to be talked to like that!

 

If anything, I hope after the shock wears off , you will feel more empowered to fight and you WILL prove her wrong.

[michele]

Been there done that. I will tell you one thing I have not found a psychiatrist yet who will give you antibiotics. I will second that with I have not found a neurologist (until Latimer who will prescribe the antibiotics either) Your best luck for antibiotics are a ped who gets a report from a specialist like latimer or Dr. K or an immunologist who gets PANDAS. I cried yesterday when the first psychiatrist we have found locally told me he is no longer seeing out patients. He looked like he was going to cry with me. He understood what we go through for once! Most Dr's lack empathy and that is why we are having a hard time weeding them out. Just keep trying. Try to get in with Latimer. I had a neurologist write a horrible report to our ped last week saying she and a leading immunolgist passed on treating my son's PANDAS. The nerve of her like Vickie said we paid for that visit where she said follow up with psychiatry. That is not what we want to hear. We are changing all meds again to Risperdal, clonidine, and celexa. Dr. latimer said that is fine to do. We see her July 7th. My son may be plugged up as someone else here said because of the BM messes in his pants several times a day. It seems nobody wants to manage our kids because of the comorbid symptoms. I think a dev behavioral psychologist maybe our next step who specializes in encopresis. I am getting worn out from all this and really can identify with your frustration.

 

Wow. Just how do all these ignorant doctors get their fricken medical degrees? And let's add insult to injury...you had to PAY to be talked to like that!

 

If anything, I hope after the shock wears off , you will feel more empowered to fight and you WILL prove her wrong.

[colleenrn]

Lacy,

 

I am so absolutely disgusted and mad for you. How DARE a physician have the audacity to talk to you and your daughter in that manner. I am an RN and have seent he "good and bad" in physicians, but this truly takes the cake. Your daughter obviously deteriorated when antibiotics were discontinued and that is a huge sign of PANDAS, as well as the other signs and symptoms you have decscribed.

 

Chalk this experience up to utter incompetence b/c that is what this doctor is, incompetent. I feel so badly for any patient that she comes in contact with b/c she sounds like a close minded and very uninformed physician. I would LOVE to know her name as I live in Charlottesville, Virigina and worked in psychiatric nursing for years. I would not hesitate, if I were you, to post her name on this forum, as I feel that any physician who has the audacity to act so uncaring and ignorant, should be "outed" for all to know. If you do not feel comfotable in posting her name, I will IM you.

 

You hang in there! That physician is ignorant and has NO IDEA how to diagnose OR treat PANDAS. Try Dr. Latimer or Dr. K. Also, the practice that treats my children is one hour away from Richmond. I have spent the last few year educating the practioner I see about PANDAS and she is definitely on board. Please let me know if I can help you in any way, but hang in there!!!

 

Colleen

[Lacy]

You guys are the best support system!!

 

Since that visit on Tuesday, DH and I have been kidding with one another by making fun of the doctor (between ourselves of course)... for instance, one remark the doctor made to us on Tuesday: Normal people always feel happy. I'm not sure happy is the word I would have used (maybe content or indifferent) because unless I'm living in La La land or am on drugs... hmmm WAIT A SECOND! She puts kids on drugs for a living! No wonder everyone around her is so happy! Sorry, sorry... bad me. I'm literally afraid to tease much more than this online because I'm convinced she'll blacklist us in the medical community somehow. She's fairly high profile (medical director, and, and, and), so in the grand scheme of things, she's probably over busy and not doing her patients any justice by trying to burn the candle at more than two ends.

 

OH! DH told me I forgot to tell everyone the even more unprofessional part - perhaps even worse than telling me how unimpressed she was with my tears! During our appointment her phone kept going off - vibrating and beeping. She'd look down at it and hit a couple buttons and then look back at us. What should have been the final straw was when her phone rang during our session and without missing a beat (while I'm in mid-sentence), she took the call!! Instead of apologizing to US, she actually apologized to the caller and said she was in session and could she call back when she was through? I was completely flabbergasted when she ended the friendly call and looked at us as if we had been interupting something - kind of a look like, so yeah, you were saying.... but no sorry, not a word! I just sort of regrouped and tried again. Unbelievable! LOL they can't even make this stuff up in movies!

 

 

We're thinking about contacting Colleen's docs again and trying to set up an appointment (thank you again Colleen for the info!), but we've also contacted another Immunologist - but this one believes in PANDAS. We're hoping she'll be able to order a couple tests to be ran, and then I'm going to look into this Dr. Latimer.

 

What can everyone tell me about Dr. Latimer?

 

By the way, thanks again all!