Details: Two Hour Appointment Today with Dr. Latimer

[Hierge]

Update: New treatment for Blake per Dr. Latimer - 500mg Augmentin XR twice daily, 10 Prednisone tapering off after 30 days, possible IVIG after initial treatment. Taken off 26mg Concerta daily.

 

Greetings all,

 

I made an appointment with Dr. Latimer in Bethesda MD the day after the OCD Conference in DC. Thanks much to the parents who raved about her at the dinner. Thanks also to Beth Maloney who insisted that I do this immediately.

 

I found out yesterday that Dr. Latimer actually takes ONE insurance company and for military families like mine, we lucked out. She's part of Tricare. I'm not sure if other companies will cover her hefty initial consult fee and subsequent visits, but I'd definitely try.

 

I wish I had known to:"BITE THE COST BULLET" and go to Dr L sooner. Don't let your child go four years like I did in failing my beautiful sweet girl Blake. She should have been in this appointment four years ago.

 

I had my ex-wife with me in the appt. After it was all over and in front of Dr. Latimer, I apologized to Blake for failing to get her the proper treatment which has led to so much suffering for her. The ex-wife who battled me at times over the past four years thinking I was being knee jerk had tears streaming down her face. Victory at last.

 

We started with the details of how Blake was diagnosed. We had it down to the day it started. It was a friday in March 2006 when our child changed overnight. The details are similar to the stories of other PANDAS children.

 

Dr. Latimer is a tough questioner. She'd stop us repeatedly and make us go back to points where she wanted more information. She took a lot of notes. She didn't have all the medical information she wanted so she dialed up the office of the first pediatric neurologist who diagnosed Blake. Apparently Dr. Will Young who was on call at Fairfax Inova Hospital had been trained at Walter Reed and knew PANDAS well. Dr. Latimer knew Dr. Young well. Thank God for that, I say!

 

But... I felt Dr. Young dropped the ball on Blake. We didn't pursue this, but this is the main reason I had to apologize to my daughter. Dr. Young told me he could treat PANDAS with steroids. She saw him once in his office and I was not at the appointment. He did basically nothing after treating her with intervenous antibiotics in the hospital.

 

Dr. Latimer told us that we caught this very early and the antibiotic treatment she got is probably the reason she is a fairly mild case on the spectrum now. Anyway, she called his former office and gave specific orders she expected to be followed regarding the transfer of Blake's records. Dr. Latimer is all business here and expects results not BS in getting records. She does not suffer fools well at all. (That's what I want in MY daughters doctor!!!)

 

We gave detail after detail. Dr. Latimer would occasionally break into stories of her own, show us an article on PANDAS research, or fire off statistics. She told an amusing personal story about her sons in church, but I don't want to betray her confidence. She's got a good sense of humor, almost all business, but a little humor in there.

 

She then transitioned to actually test Blake. The first hour Blake sat there doing piano movements with her fingers and tapping her feet. She fired off all types of facial tics which Dr. Latimer commented on telling us that she's an expert on facial tics. There were tests with touching her nose, Sydenham's chorea tests, rubbing her toes down her legs... Blake doesn't have Chorea movements. Phew. I thought she was a dead ringer.

 

After returning to her office. She tells us that Blake has anorexia which is common in 30% of PANDAS children. Blake's mom has never accepted this until today. 69 lbs at 12 years old. We agree that her ADHD medicine Concerta is not appropriate. Blake's mom wanted to keep her on Concerta. Dr. Latimer said pointedly, "She has PANDAS, not ADHD. We need to treat PANDAS." This is the winning phrase in the battle I fought for the past four years with her mom. Praise God.

 

We go into family history. Dr. Latimer was mostly interested in paternal history on my side of the family. She questioned me about my nutty father telling me he was probably suffering from Aspergers Syndrome if what I said was accurate. She focused on my brother's Rheumatic fever for which he received prophylactic antibiotics in the early sixties. We talked about how Blake's mom had a strep infection when Blake was born and rheumatic symptoms for months after her birth.

We talked about all the heart murmurs in the family.

 

I finally asked Dr. Latimer, "so, it's a lock here, Blake has PANDAS right?"

 

"Defiinitely, she's a classic case. Not even marginal."

 

We then listened to Dr. Latimer tell us about the NIMH conference last month that she says changes the entire playing field. She said that many PANDAS watchers are disappointed with the NIMH press release on this. She says that the press release is basically akin to the Pope changing his mind... like saying the Catholic church was now Presbyterian. Words to that effect. She says that the entire world of mental health is about to change finally.

 

She says it was a blood bath conference. They brought in the skeptics and it got nasty. She said that her data along with three other doctors was powerful enough to take the day. Two doctors from Hopkins were convinced and changed their minds. These are influential doctors. The kicker is that they aren't going to use the term PANDAS anymore. It's "radioactive" (her word.) The new medical term will be named for one of the turncoat doctors who changed his mind.

 

I told Dr. Latimer thank you for not being proud here and wanting the glory. We need to treat children. It seems glory never crossed her mind at all...

 

Blake was taken off Concerta. She got a prescription for Augmentin 500 mg twice a day. Prednisone 10mg tapering off over a month. IVIG possibly in the future.

I ran my anti-inflammatory scheme past her with non-antibiotic doses of doxycycline and emycin. She shook her head telling me that anti-inflams are not a primary treatment she'd use for PANDAS.

 

I mentioned my meeting Beth Maloney. She said that Saving Sammy had a few issues she felt were not accurate regarding PANDAS itself. I didn't fully understand this, but she went into an explanation of the blood brain barrier, antibodies. I will ask her to explain in the future.

 

We are ordering more tests and will be back in a month.

Edited October 1, 2010 by Sheila Rogers

[dee45]

Thanks for sharing we see her as well and your description was very accurate. So glad you are now on the right path with your daughter. Best of luck on your path to healing..

 

Deanna

[Hierge]

Thanks for sharing we see her as well and your description was very accurate. So glad you are now on the right path with your daughter. Best of luck on your path to healing..

 

Deanna

 

 

Thanks Deanna.

[nevergiveup]

Dr L is amazing, I agree. She with swedo, cunningham, diana, mary hornig, what would we do without these women fighting for our children. Dr L once said to me, you can tell a pandas child just by the look in the mothers eyes. Not too scientific, but true. They truly are pioneers. I do not want to leave leckman out, I just wanted to talk about the women!!! Ok sooooo, can I speculate, does this mean Leckman may be part of the new name? If u have a child that has tics and ocd definately dig deeper, go see a pandas expert.

[KaraM]

Thanks for your post. I was at the conference, too, and was duly impressed with Dr. L.

I remember that feeling of finally having someone knowledgeable (in our case Dr. B confirmed the diagnosis). Even though I don't want my daughter (or any other child) to have it, getting the official diagnosis felt like a victory.

Keep us posted as to how your daughter responds to the changes in her medication regimen. I'll be thinking of you. Good luck.

Kara

Edited September 29, 2010 by KaraM

[airial95]

Dr L is amazing, I agree. She with swedo, cunningham, diana, mary hornig, what would we do without these women fighting for our children. Dr L once said to me, you can tell a pandas child just by the look in the mothers eyes. Not too scientific, but true. They truly are pioneers. I do not want to leave leckman out, I just wanted to talk about the women!!! Ok sooooo, can I speculate, does this mean Leckman may be part of the new name? If u have a child that has tics and ocd definately dig deeper, go see a pandas expert.

 

If you want to talk about the women paving the way - don't forget Dr. Tanya Murphy.

[nevergiveup]

Oh yes, and Tanya Murphy, definately another Women devoted to our kids, she is also so impressive. What I like about Tanya is she tries to really look for physical issues, like infection and immune deficiencies and other viruses that trigger neuropsych symptoms or autoimmune disease.

Thanks didn't mean to leave her out.

[airial95]

We have another appointment with her this afternoon - so she was on the brain!

[thereishope]

Thank you for posting an update. I'm happy you and your daughter are finally starting the path to recovery. That appointment was a turning point for you. Please continue to let us know what happens. Did you mention what Latimer's protocal for your daughter will be besides taking her off the Concerta?

[Hierge]

Thank you for posting an update. I'm happy you and your daughter are finally starting the path to recovery. That appointment was a turning point for you. Please continue to let us know what happens. Did you mention what Latimer's protocal for your daughter will be besides taking her off the Concerta?

 

Augmentin XR 500 twice a day. Blake has an aversion to big pills so we are allowed only for Augmentin XR to cut them in half. She put her on a tapering month long dose of Prednisone 10 mg. We will watch how she responds to this and will consider IVIG. Dr. Latimer expressed shock that Blake's tonsils were still intact with the strep problem and I repeated that the ENT doctor Gupta we saw last insisted that taking tonsils out would have only a marginal effect. We have a problem with tonsils with Blake because PANDAS causes her to be deathly afraid of many things including tonsillectomy. I almost bled to death at 10 years old from this procedure and Blake knows this. Her friend almost bled to death two years ago from tonsillectomy. This ain't happening, at least not until she recovers from PANDAS.

 

Dr. Latimer explained that PANDAS does not go away after episodic treatment with antibiotics. That was a huge deal for her mom to hear. I knew this all along, but mom was indoctrinated by all the doctors she met over the last four years. She never dug into this as deeply as me. She spent her time trying to "normalize" Blake through bullying. Blake's not allowed to cry in her mom's house or she gets grounded. Well, she's deathly afraid of things and she cries at the drop of a hat. How's bullying in this instance not child abuse? I was accused for years of being a bad parent for treating her like a PANDAS child with compassion. I would hold her until she stopped crying like a small child. Her own mom thought that was coddling. (Including my now wife Sarah who is military.)

 

Dr. Latimer did say that not all PANDAS children should be spared carrots and sticks, but in Blake's case it was the humane thing to do. I am so grateful her mother heard this from Dr. Latimer's mouth. It was instinct for me. It's easy to mistreat your PANDAS child and lose it, but that's just self-indulgence. Go outside, take a breath, scream in a paper bag if you have to. Do not take this out on your PANDAS kid. I have been begging her nine year old sister for years to please not take Blake's behavior personally. She has had it hard sometimes, but like any human being she loses it from time to time and will use her 30lb weight advantage over her anorexic sister to accidently "bump" her into a wall or open drawer causing much pandimonium. Perri would feel horrible guilt about this too and have her own quiet tantrums. I always spend private time alone with Perri to make sure her over attention getting sister isn't getting all the attention.

 

It's hard being a parent of these types of children. I agree with the earlier reply about you can see it in the mother's eyes. It's just such a huge relief to know your child is going to get better, or at least has a good chance of getting better. I'm telling anyone who will listen to me about how happy I am. It's a big deal to get that final diagnosis and prophylactic antibiotic.

 

Oh, Dr. Latimer told me (I just remembered) that PANDAS children are remarkably immune to yeast infections for some reason which most people get with prophylaxic antibiotics. This shocked me. She says she only rarely has to treat yeast infections that would make any one of us parents suffer with the same treatment. No explanation for this. I just assumed we'd have to become experts in treating yeast infections.

[thereishope]

Yes, I agree, a PANDAS child, especially when in an exacerbation, should be treated differently. When you live with them, see their suffering, and realize the child you once had is gone and trapped....well, luckily I think most PANDAS parents realize parenting skills need to adapt and treat their children accordingly. Even once they are better, you never really parent them the same way you did pre-PANDAS. You realize how delicate life is, you appreciate them more than ever, and know you can lose them again so quickly. It changes you.

[norcalmom]

wow - thank you for posting. I cannot wait to see that white paper and a new name. And I'm happy that one of the skeptics will be naming it - VERY, VERY smart ladies (kinda like getting my husband to think it is his idea, to do somehing I wanted done!)

 

We on the West Coast are hurting bad. Just does not seem fair that all the pandas docs are in the east.

 

Take it easy on the ex...everyone is trying to what they think is best. For most of us moms, dealing with the dads, especially in the begining, is very very tough. They aren't there as much, they aren't willing to accept somehting is wrong, or that decipline isn't the answer to improved behavior.

 

Take a lesson from Dr L. - try to get your ex. to think the next decision along the pandas path is her idea!

[Hierge]

wow - thank you for posting. I cannot wait to see that white paper and a new name. And I'm happy that one of the skeptics will be naming it - VERY, VERY smart ladies (kinda like getting my husband to think it is his idea, to do somehing I wanted done!)

 

We on the West Coast are hurting bad. Just does not seem fair that all the pandas docs are in the east.

 

Take it easy on the ex...everyone is trying to what they think is best. For most of us moms, dealing with the dads, especially in the begining, is very very tough. They aren't there as much, they aren't willing to accept somehting is wrong, or that decipline isn't the answer to improved behavior.

 

Take a lesson from Dr L. - try to get your ex. to think the next decision along the pandas path is her idea!

 

I agree with you that letting the skeptics name it is just fine. Nicola Tesla invented the radio, but Marconi stole his idea and gave all of us radio/television out of his own passion/greed. Tesla won the patent war after thirty years, but was a poor businessman.

 

I know you are on the West coast and how hard this is to pull off, but I see plane tickets to San Francisco for $250 round trip all the time from DC. That's $500 bucks for the airfare. It shouldn't be more coming from your end. Someone would probably let you stay at their house off of this bulletin board. I live an hour and a half from Dr. L's office, but you are welcome to stay with my family. Have a bake sale. I'm sure your family and friends know your hardship and would contribute even with a short term loan.

 

Dr. Latimer told me yesterday that there are only four doctors in the world (including herself) she considers qualified to treat PANDAS properly. So, everyone's in the same boat here. Perhaps we Washingtonians can set up a network of families who will provide lodging for appointments. I also know Dr. L does phone consults with other doctors. After witnessing her on the phone, I am confident she just gives orders to other doctors and they follow without question. I'd try that route first if I were you. I think she charges a couple hundred bucks for phone consults. Money can't be the issue here. Starve for a month if you have to. Ask people to help you. Get treatment now, what if this is a cumulative disorder like Rheumatic fever with permanent brain damage the outcome? Beth Maloney believes that it is cumulative. (She's not a doctor though.)

[Hierge]

Yes, I agree, a PANDAS child, especially when in an exacerbation, should be treated differently. When you live with them, see their suffering, and realize the child you once had is gone and trapped....well, luckily I think most PANDAS parents realize parenting skills need to adapt and treat their children accordingly. Even once they are better, you never really parent them the same way you did pre-PANDAS. You realize how delicate life is, you appreciate them more than ever, and know you can lose them again so quickly. It changes you.

 

Amen. Hat's off to PANDAS parents. Who hasn't cried themselves to sleep over their PANDAS child? I am worried about Blake though with the way others may treat her. I stole a peek at a note book I bought her at a dollar store. She's 12 and a classic pre-teen. She scribbled on one page "I (heart) K" K is the name of a boy in the 8th grade at her school. They next page had a scribbled depiction of a girl with the word "Ugly" and an arrow pointing to her. Blake has anorexia and is a bag of bones.

 

My wife Sarah tells me Blake looks worse than most of the malnourished orphans she volunteered to help in Kyrgyztan four years ago. Her solution is to make Blake sit at her plate until it's clean. (Blake just sits there and quietly sobs.) Her immature teen daughter makes this even harder because Blake gets "special treatment." I react now saying, "we just won't eat with you anymore."

 

Hey, I'd force feed Blake if I had to, but if all she will drink is water because she can't stand flavored drinks then I let her. If all she will eat is chicken nuggets, green beans, and macaroni then I thank the man upstairs she has an appetite at all. I need to get protein into her and if she will eat tacos and chicken I count myself lucky. This is not a normal situation or a normal child. If she were normal, she'd insist on Kool aid or soda pop. PANDAS makes her want to drink only water due to sensory overload. I can't change this no matter how much I want to force her. It's child abuse at some point.

 

I agree that all PANDAS children are different and have to be parented accordingly. This is not science and is instinctive. I do think that there are prevailing social customs in American child rearing that are very bad for PANDAS children. I am willing to be called a bad parent and trust my instincts on this. It's made it hard for me, but I'm not the one suffering. I pray a lot and have gotten a lot of answered prayers.

[kimballot]

Congratulations on a job well-done. We are not patients of Dr. L's, but I only hear wonderful things about her and I am sure you are in good hands. I look forward to reading about your journey as you and your family work through this.

 

I do want to mention, also, that although Dr. Latimer is not concerned about a yeast infection with your daughter, fungal infections are a documented problem in children with underlying sinsusitis, so those kids should remain on antifungals if they've been prescribed.

 

Best wishes with all of your new information. I can hear the hope in your voice. It is very nice to hear (read?)!!