First appt with Dr. Murphy tomorrow

[airial95]

We got a call yesterday that we can get in with Dr. Murphy tomorrow - she's the neuro psych out of USF that is a leading PANDAS researcher. Anyway - it's short notice, but I was wondering who else has seen her and what to expect for our first appt?

 

Any questions I should ask?

[ShannonOtown]

My Pandas son (12) and non-pandas daughter (6) has both been evaluated by Dr. Murphy. Expect a 2-3 hour visit that starts with lots of paperwork. You child will have the same paperwork/questions if old enough to read and relate... Then you will sit down with Dr. Murphy and/or assistant to go history, concerns, questions, etc. Dr. Murphy will then do a full nuero work-up on your child... reflexes and general check-up stuff.

 

She might order some bloodwork, unless you bring current results with you.

 

The staff is great and very friendly...

 

Are you doing the cefindir study? My son was part of the study, so perhaps the paperwork was for study patients only.

 

Shannon

[airial95]

I think my son is too young for the study - he's only 2 1/2, and I thought I read somewhere that they had to be 4 - but I could be wrong.

 

They were supposed to email me the paperwork ahead of time, but I haven't gotten it yet. Hopefully that will speed things up. Our Dr has already sent over all records and stuff - including our crazy behavior charting we've been doing. I don't know if that will speed things up or not...

[ShannonOtown]

Reply back on your experience and recommendations from Dr. Murphy. Just working with professionals that understand the symptoms, etc., is such a relief.... good luck!

 

Your son is young... catching it early is a good thing. I wish I found this forumn 4 years ago when the sky starting falling... I have learned so much from everyone.

[Kaki]

We got a call yesterday that we can get in with Dr. Murphy tomorrow - she's the neuro psych out of USF that is a leading PANDAS researcher. Anyway - it's short notice, but I was wondering who else has seen her and what to expect for our first appt?

 

Any questions I should ask?

 

 

We saw Dr. Khalil, filled out lots of questionaires, and bloodwork. We got a referall for CBT and Dr. Sleaseman (Immunologist). We saw Dr. Murphy maybe 5 minutes. That was that. No follow up. They sent a report several months later diagnosing my daughter with what we already knew she had, autsim & anxiety/OCD. The bloodwork was extensive and mostly normal. We are still waiting for our appointment with immunology.

 

It really wasn't helpful for us. I hope it goes better for you.

[nevergiveup]

Kaki, How long have u been waiting to see Sleasman? Make sure u have the Cunningham tests results with u when u see him. He studied SC years ago and kind of gets the autoantibodies cunningham is able to document in these studies. He is also head of immun and rheumotology and truly understands antibodies and immune deficiencies. He has several kids with tics ocd and immune deficiencies so he is familiar with the symptoms. Don't miss this appointment and call secretary of u want in sooner they are great people there. But get the cunningham tests, immune and rheum docs like blood markers. Dr Sleasman treats my kid and if Murphy gave u this referral consider yourself lucky, she doesn't refer everyone to immune. PM me if u want more info.

 

 

We got a call yesterday that we can get in with Dr. Murphy tomorrow - she's the neuro psych out of USF that is a leading PANDAS researcher. Anyway - it's short notice, but I was wondering who else has seen her and what to expect for our first appt?

 

Any questions I should ask?

 

 

We saw Dr. Khalil, filled out lots of questionaires, and bloodwork. We got a referall for CBT and Dr. Sleaseman (Immunologist). We saw Dr. Murphy maybe 5 minutes. That was that. No follow up. They sent a report several months later diagnosing my daughter with what we already knew she had, autsim & anxiety/OCD. The bloodwork was extensive and mostly normal. We are still waiting for our appointment with immunology.

 

It really wasn't helpful for us. I hope it goes better for you.

[airial95]

Well, we're back, and the appointment went very well.

 

She did pretty much confirm what we already knew - that he's PANDAS - but it was nice hearing it from someone who's seen it as often as she has. Our pediatrician so far has been spot on 100% of the way - but even he admits there's a lot he doesn't know, so it was nice to have the confirmation.

 

They're sending him for a full OT evaluation to see if he needs OT, and they found fluid build up in his ears - they think it might be from his recent strep infection, but they want him to go for a full hearing test in 6 weeks just to be sure. She also ordered a full panel of the blood labs. We haven't gotten any bloodwork done so far b/c our pediatrician said at his age what they're looking for isn't always reliable. Dr. Murphy agreed with his assessment, but said that she wanted to have the labs done anyway so they have a general idea of what's happening in that little body of his.

 

She wants to see us back in 6-8 weeks or so. She recommended that we stay on our course of Azith for the time being, since we're still seeing a steady (albeit slow) improvement on azith, but said that we may want to consider switching to cedifir if we stop seeing result on azith, or if he catches more strep infections b/c of the higher risk of resistance with azith.

 

It was a long morning, but overall, it went pretty well. Can't complain. And now I have a second opinion when we meet with the neurologist for the first time on the 27th of August!!

[ShannonOtown]

Glad the visit went well... my son had great improvements when he did the cefdinir study with her. His symptoms just returned, which I have to blame on mycoplasma. Our entire family has tested high and currently on antibiotics.

 

The bloodwork seems to add to the mystery.... the more information, the more pieces to the puzzle. I wonder if she's testing for MP? She didn't a year ago with my son, but did with my daughter back in March. Perhaps this is something on the radar with Panda doctors now? I think this should be a test everyone should run with the ASO and DNase.

[airial95]

I'm not gonna lie - I'm not sure how to read the blood work orders but this is what she's got checked:

 

Ig Profile (G,A,M)

IgE

IgG subclasses: G1, G2, G3, G4

Mannose Binding Lectin

Anti Deoxyribonuclease B(Strep)/Dnase-B Antibody

Anti Streptolysin O

Streptococcus pneumoniae IgG Antibody (13 serotypes)

CBC with diff

[nevergiveup]

Most are immune deficiency markers, which are seen low in pandas kids on occasion, some are strep titer tests, one I am not sure of the Mannose Binding Lectin, and if any can chime in and tell us what Murphy is investigating with this test, I would love to know. She is a very smart doctor and is fighting hard for our children to try and understand what is happening with our children. She rarely, offers up ivig, I believe when I checked with her office to date she has very few children whom have been treated with ivig, only those with immune defs. But beyond that, she will be one of the docs whom will change treatment and protocol for future children. She is sincerely looking into medical causes and for a psychiatrist heading this up this is remarkable. With the immune deficiency testing, it will be hard to determine if your child has one, since he is so young. All young children have underdeveloped immune systems early in life, because of our type of blood testing, the deficiency in blood markers starts to show as the child matures. Or as their immune system matures, or doesn't compared to everyone elses. It doesn't mean they didn't have the deficiency all along, just that the IGG levels will not relect a deficiency until later when other children immune systems start to grow and the immune deficient childs immune system doesn't. Some kids do show immune def's at your sons age, but this would be a very severe immune deficiency. Have you run the Cunningham tests, I have never understood why Murphy doesn't suggest these, she liked seeing my dd's results and likes the study.

 

 

Butquote name='airial95' date='Jul 14 2010, 03:19 PM' post='75472']

I'm not gonna lie - I'm not sure how to read the blood work orders but this is what she's got checked:

 

Ig Profile (G,A,M)

IgE

IgG subclasses: G1, G2, G3, G4

Mannose Binding Lectin

Anti Deoxyribonuclease B(Strep)/Dnase-B Antibody

Anti Streptolysin O

Streptococcus pneumoniae IgG Antibody (13 serotypes)

CBC with diff

[Megs_Mom]

I'm so jealous. When we started getting serious about PANDAS last June, she was 6 months out for appts! Obviously, that was not an option. We canceled our December appt, when it rolled around, as we were with Dr. L by then & doing SO much better, but I have alway wanted to meet her. I am so impressed with how much research she is doing.

[Kaki]

Glad your appointment went well. She does order lots of bloodwork. Did she order a DNA assay? I didn't see that on the list. The MBL test is looking for a possible source for an immunodeficiency.

 

 

Well, we're back, and the appointment went very well.

 

She did pretty much confirm what we already knew - that he's PANDAS - but it was nice hearing it from someone who's seen it as often as she has. Our pediatrician so far has been spot on 100% of the way - but even he admits there's a lot he doesn't know, so it was nice to have the confirmation.

 

They're sending him for a full OT evaluation to see if he needs OT, and they found fluid build up in his ears - they think it might be from his recent strep infection, but they want him to go for a full hearing test in 6 weeks just to be sure. She also ordered a full panel of the blood labs. We haven't gotten any bloodwork done so far b/c our pediatrician said at his age what they're looking for isn't always reliable. Dr. Murphy agreed with his assessment, but said that she wanted to have the labs done anyway so they have a general idea of what's happening in that little body of his.

 

She wants to see us back in 6-8 weeks or so. She recommended that we stay on our course of Azith for the time being, since we're still seeing a steady (albeit slow) improvement on azith, but said that we may want to consider switching to cedifir if we stop seeing result on azith, or if he catches more strep infections b/c of the higher risk of resistance with azith.

 

It was a long morning, but overall, it went pretty well. Can't complain. And now I have a second opinion when we meet with the neurologist for the first time on the 27th of August!!

[airial95]

The reason our pediatrician hadn't ordered the blood workup so far was that precise reason - since he's so young the results may not be that reliable. When I mentioned this to Dr. Murphy - she agreed, but said that it's worth drawing anyway just to take a look to see if anything interesting shows up. She said that she's not one to do continuous draws every few weeks/months, but since it's our first appt with her, it would be useful to have when we look at future blood draws.

 

Personally, I'm surprised we got in as quickly as we did. I got the direction from our Dr to see her on the June 24th, and called that day. They said that they'd need all of our medical records and other information sent over, and they would call in a week to set up an appointment and do the intake over the phone. We ended up doing the intake over the phone that day anyway- and she said it might be September before we get in. So I was prepared for a wait. Last Friday, while we were on vacation we got the call saying she'd see him on Wednesday. We just got back to work from vaca on Tuesday, so taking a half day off the next day was not exactly our idea of convenient - but I told my husband we'd both quit our jobs before we turned down the appt.

 

I don't know if that means she thinks our son's case is severe or what - but she wants to see him in a month or two for follow up. Our pediatrician has treated about a half dozen-dozen cases, and he said that our son seems to be the most severe he's seen so far - but his scope is very limited. Based on what I've read here - I would think our son is mild compared to most folks.

 

Maybe we see it as mild because most of the tantrums/issues are still age appropriate for him so we're taking them in stride. I think I'd probably think he was more severe if he was acting like this at 7 or 8 than at 2.

 

Interestingly - Dr. Murphy did ask several questions about our daughter, and if she shows any of the same traits or anything. (She doesn't - thankfully!)

 

She didn't order any DNA tests from what I can tell - but that's an interesting point, I may ask our pediatrician about it. I have a rare genetic form of arthritis, which is an immune disorder (akylosing spondilitis) - I wonder if he carries that gene too?

[ShannonOtown]

it would be useful to have when we look at future blood draws.

 

This was my thought too... Dr. Murphy wants this information for research. Getting information and data on children young would help with understanding how PANDAS plays a role as they get older. And obviously, it will help provide medical assistance for your son.