Saw specialist-jackpot!

[mom md]

After dealing with this off and on for two plus years we finally have found not only someone who will listen but also understands the seriousness of this. Our son Carter has PANDAS, diagnosed in February, after a long journey. His symptoms begain the winter of 2006 and waxed and waned until now. He was given a diagnosis of ADHD, anxiety, OCD, restless leg syndome, and finally PANDAS. In Feb he began having severe mood swings, anger, insomina, hyperactivity, tics, restlessness, and chorea. I took him to a neurologist and said...I think he has Syndeham's chorea and I was told "no" he has PANDAS and that is a tic you are seeing. We have been on azithromycin for 12 weeks now with no improvement in his antiDNase B (it was 1320 and went up to 1360) and his ASD has fallen from 1750 to 950. His mood is MUCH better but he still moves constantly. He no longer plays imaginary pianos but he can't stop moving. Once I saw the levels I questioned...why are we treating an autoimmune disease with an antibiotic? I know I am a gynecologist but it makes no sense!

We went and saw Beth Lattimer in DC and she is wonderful. She was impressed with Carter's chorea(which is nothing now...she should have seen him before the antibiotics!) and said his antibody levels are in the top 2% odf patients. She said it was a toss up between Syndeham's and PANDAS but really it's the same. She said they are both rheumatic fever and we had defintely failed antibiotics. She offered us steroids, IVIG, and PEX. We are doing PEX. She said it was a cure. She said with IVIG we may need multiple treatments and with this we can do it until we watch the antibodies clear. It is done in th PICU at Georgetown and takes 3-4 days. He will be sedated for the femoral line and then for 3 hours each day the PEX team will come and drain his bllod, clean it, and replace it. She siad there is less bllod product in this(only albimin) so less chance of infection and she said she thought it was what we needed. We are planning to go back in a month to do this and then she said we would be on antibiotics until Carter was an adult. She recommended penicillin because this is...rheumatic fever. She said IVIG is great too and very easy but we may just need several treatments before we finally get things cleared. We have BCBS who participates with Georgetown and Dr. Latimer seems to think getting it covered won't be an issue.

I would STRONGLY recommend her to anyone who is fighting an uphill battle. She was the former head of Neurology at Georgetown and has seen it all. She is very well connected too. She is very compassionate and a parent too. She was also voted one of Washington's top doctors last year and believe me I can see why. We flew up for the day to meet her and it was worth all the efort. I can finally sleep knowing Carter will finally get the help he needs.

MOMmd

[amy s]

I am thrilled to hear this news! I hope your child does great and please keep us posted on the progress!

 

Regards,

amy s

[pmoreno]

After dealing with this off and on for two plus years we finally have found not only someone who will listen but also understands the seriousness of this. Our son Carter has PANDAS, diagnosed in February, after a long journey. His symptoms begain the winter of 2006 and waxed and waned until now. He was given a diagnosis of ADHD, anxiety, OCD, restless leg syndome, and finally PANDAS. In Feb he began having severe mood swings, anger, insomina, hyperactivity, tics, restlessness, and chorea. I took him to a neurologist and said...I think he has Syndeham's chorea and I was told "no" he has PANDAS and that is a tic you are seeing. We have been on azithromycin for 12 weeks now with no improvement in his antiDNase B (it was 1320 and went up to 1360) and his ASD has fallen from 1750 to 950. His mood is MUCH better but he still moves constantly. He no longer plays imaginary pianos but he can't stop moving. Once I saw the levels I questioned...why are we treating an autoimmune disease with an antibiotic? I know I am a gynecologist but it makes no sense!

We went and saw Beth Lattimer in DC and she is wonderful. She was impressed with Carter's chorea(which is nothing now...she should have seen him before the antibiotics!) and said his antibody levels are in the top 2% odf patients. She said it was a toss up between Syndeham's and PANDAS but really it's the same. She said they are both rheumatic fever and we had defintely failed antibiotics. She offered us steroids, IVIG, and PEX. We are doing PEX. She said it was a cure. She said with IVIG we may need multiple treatments and with this we can do it until we watch the antibodies clear. It is done in th PICU at Georgetown and takes 3-4 days. He will be sedated for the femoral line and then for 3 hours each day the PEX team will come and drain his bllod, clean it, and replace it. She siad there is less bllod product in this(only albimin) so less chance of infection and she said she thought it was what we needed. We are planning to go back in a month to do this and then she said we would be on antibiotics until Carter was an adult. She recommended penicillin because this is...rheumatic fever. She said IVIG is great too and very easy but we may just need several treatments before we finally get things cleared. We have BCBS who participates with Georgetown and Dr. Latimer seems to think getting it covered won't be an issue.

I would STRONGLY recommend her to anyone who is fighting an uphill battle. She was the former head of Neurology at Georgetown and has seen it all. She is very well connected too. She is very compassionate and a parent too. She was also voted one of Washington's top doctors last year and believe me I can see why. We flew up for the day to meet her and it was worth all the efort. I can finally sleep knowing Carter will finally get the help he needs.

MOMmd

 

 

Mom MD:

I am so happy for you that you found a specialist that knows what she isdoing. I'm convinced that the PEX will do just as you say and will be very effective. The only thing that concerns me is that once he is recovered from this episode, that he may at some point in the future have another episode triggered either by strep that manages to evade the abx, or by some other trigger such as a virus. The underlying reason for the autoimmune response doesn't necessarily go away with the PEX - it gets rid of the offending antibodies but it doesn't change the integrity of the immune system as far as future responses go. In order to treat the immune dysregulation, I think you would have to consider other types of treatments - I don't know that I would want my child on antibiotics from now until adulthood - especially when you can't be sure that this will definitively keep the strep away. You may have read other posts on here from parents who have had their children on long term antibiotics and will still get exacerbations at various times. Pat

[dee45]

Hi,

what does the PEX stand for? I am drawing a blank right now??

 

Deanna

[P_Mom]

Plasma Exchange

[P_Mom]

Plasma Exchange

[mom md]

Dr. Latimer was very upfront that the genetic issue that caused the dysfunction of the immune system in the first place was there and that he could get an infection despite being on antibiotics. She felt antibiotics were our best defense after the PEX but we may need steroids or IVIG if we see signs of the disease return. She said hopefully it won't but you must be prepared to look for the warning signs and act if you do. She recommended probiotics along with the antibiotics and at this point I have to say we will be staying on antibiotics for a long while. There may come a time later in life when we relax a bit but not anytime soon. One of my friends is a pediatric infectious disease doctor that worked for the CDC so I plan to have a long conversation with here about all this. I will post any helpful hints she has.

[EAMom]

Heck, I'd keep my dd on abs the rest of her life if it helps keep PANDAS at bay and protect her brain. In an ideal world we wouldn't have to do any of this (IVIG /PEX , antibiotics, everything else), but that is not really an option for severely affected PANDAS kids.

 

re abs: lots of the kids on abs that have exacerbations (while on abs) haven't had IVIG or PEX yet. I'm hoping that doing IVIG (or PEX for Carter) will help this situation. If my dd was cured on the antibiotics alone, then I wouldn't be worrying about IVIG in the first place. And personally, if IVIG works for my dd I'm planning to keep her on abs as long as possible to help prevent a recurrence...even if it is not guaranteed to be 100% effective.

 

MomMd...are you going to do pen injections or tablets post PEX? with the tablets I'd be concerned about missing a dose and risking a strep infection. I do find Azith. quite appealing since it helped so much more than other abs so far and you have more of a cushion with it's long half life, if you miss a dose. However, I do like the theory of Pen being so narrow spectrum.

 

PEX and then following up with IVIG is an interesting option. It seems like that combo should be an effective treatment for PANDAS, more so than either procedure alone.

[Kayanne]

I'm really happy for you!!

 

My daughter is in her first episode...and we are driving down to see Dr. Latimer on Friday. We only live 2 1/2 hours north of her.

 

We are scared that she is getting worse...and are anxiously awaiting our appointment. I spoke to Dr. Latimer on Tuesday and she said that she needs azrithmycin and a steriod burst. When I told my Pediatrican, he said that he would call her to discuss it. However, they weren't able to connect, and he was going on vacation, so he called Hershey Medical Center (PA). He said that he called a couple of Pediatric Neurologists there. One of them is "one of the best in the nation", he said. Neither of them believe in PANDAS. A Physcian's assistant from one of the offices gave him the name of a Rumatologist who believes in it...he told me to call there.

 

After speaking with Diana Pohlman, I knew I didn't want to mess around seeing a lot of doctors who are not familiar with PANDAS. Your post just confirms that we are doing the right thing.

 

I am still going to call the Rumatologist to get an appointment. I feel that I need to try every avenue that has been suggested to me. I'm also going to take my oldest daughter to the Rumatologist because she also had strep several times, and now she says that her feet and knees really hurt.

 

My Mother's brother and their mother both had ruematic fever, so I truely belive that this is a genetic flaw.

 

Thanks for sharing! Good luck with the Pex!

[dcmom]

A neurologist I have seen in NJ told me that for extreme cases PEX and IVIG are done (I think at the same time).

[EAMom]

Hi Claire,

I just wanted to make sure you saw this recent post by boychildsmom on Pen inj/vs. pen oral/vs. azith. post IVIG. http://www.latitudes.org/forums/index.php?...art=#entry33612

[boychildsmom]

Thanks for the update. You did hit the jackpot! I'm happy you found the right MD.

 

I chuckled at your comment the doctor was impressed with his chorea. That's how I knew we found the right MD years ago. He was the first to look fascinated, not confused. Interestingly, our MD has said SC, RF and PANDAS are the same condition.

 

We opted for IVIG. It was my understanding PEX carries more blood borne risks than IVIG. Am I mistaken?

 

Your son's titer decline was impressive. Are you ASO testing pre-PEX to ensure continued decline and no re-infection?

 

You might discuss antibiotics to treat future GABHS infections, so he won't need frequent PEX/steroids. My DS doesn't respond well to traditional strep throat meds. If he tics, the GABHS is systemic. We use clindamycin & rifampin for GABHS infections.

 

We saw only modestly satisfactory results with pen prophylactic. It does have break throughs. Also, when he's post-GABHS infection (titers still declining), pen seemed to cause fluctuations in residual symptoms, making it tougher to ascertain residual tics from new/returning infection. We're hoping for better results on azith.

 

 

 

After dealing with this off and on for two plus years we finally have found not only someone who will listen but also understands the seriousness of this. Our son Carter has PANDAS, diagnosed in February, after a long journey. His symptoms begain the winter of 2006 and waxed and waned until now. He was given a diagnosis of ADHD, anxiety, OCD, restless leg syndome, and finally PANDAS. In Feb he began having severe mood swings, anger, insomina, hyperactivity, tics, restlessness, and chorea. I took him to a neurologist and said...I think he has Syndeham's chorea and I was told "no" he has PANDAS and that is a tic you are seeing. We have been on azithromycin for 12 weeks now with no improvement in his antiDNase B (it was 1320 and went up to 1360) and his ASD has fallen from 1750 to 950. His mood is MUCH better but he still moves constantly. He no longer plays imaginary pianos but he can't stop moving. Once I saw the levels I questioned...why are we treating an autoimmune disease with an antibiotic? I know I am a gynecologist but it makes no sense!

We went and saw Beth Lattimer in DC and she is wonderful. She was impressed with Carter's chorea(which is nothing now...she should have seen him before the antibiotics!) and said his antibody levels are in the top 2% odf patients. She said it was a toss up between Syndeham's and PANDAS but really it's the same. She said they are both rheumatic fever and we had defintely failed antibiotics. She offered us steroids, IVIG, and PEX. We are doing PEX. She said it was a cure. She said with IVIG we may need multiple treatments and with this we can do it until we watch the antibodies clear. It is done in th PICU at Georgetown and takes 3-4 days. He will be sedated for the femoral line and then for 3 hours each day the PEX team will come and drain his bllod, clean it, and replace it. She siad there is less bllod product in this(only albimin) so less chance of infection and she said she thought it was what we needed. We are planning to go back in a month to do this and then she said we would be on antibiotics until Carter was an adult. She recommended penicillin because this is...rheumatic fever. She said IVIG is great too and very easy but we may just need several treatments before we finally get things cleared. We have BCBS who participates with Georgetown and Dr. Latimer seems to think getting it covered won't be an issue.

I would STRONGLY recommend her to anyone who is fighting an uphill battle. She was the former head of Neurology at Georgetown and has seen it all. She is very well connected too. She is very compassionate and a parent too. She was also voted one of Washington's top doctors last year and believe me I can see why. We flew up for the day to meet her and it was worth all the efort. I can finally sleep knowing Carter will finally get the help he needs.

MOMmd

[P_Mom]

" Interestingly, our MD has said SC, RF and PANDAS are the same condition."

 

 

 

This is the second time I have read this recently...it is confusing and concerning to me. The actual same condition????...or the same mechanism? I understand if it is the same mechanism...but the actual same condition? I don't get it....perhaps you can clear it up for me.

 

If they are the same conditions....then our kids are at a great risk of heart valve damage and should be screened, also, if that is the case, proph antibiotics are a MUST for a very long time. Some reports say until 25 years, some now say for life, plus, they should be easy to get....it is well known RF patients take antibiotics to prevent strep, and subsequent heart trouble.

 

The studies I have read to date have confirmed PANDAS and SC (results from RF) to be two distinct conditions, although brought on by the same molecular mimicry. This study actually checked for heart damage in PANDAS cases, I forget the number of children, but it was high, and found no correlation between PANDAS and heart damage.....so how could it be RF??? I'll have to post the study when I have time to find it.

 

See why that concerns me....now we are talking heart damage.

[colleenrn]

PMom-

I have the same exact questions and concerns about cardiac involvement with our kids. I know at least one or two children on this forum had a cardiac workup. Can anyone give me any more info where cardiac involvement is concerned. I have felt for a while that my kids, with their long history of strep, and periods of untreated strep b/c they had no physical symptoms to know to test, should have a cardiac workup.

Thanks,

Colleen

[colleenrn]

Also, if SC, RF, and PANDAS are all the same, which I believe they probably are, WHY won't physicians accept PANDAS as real? When physicians have looked at me like I am crazy in the past b/c they have never heard of PANDAS, I have always said, "Well, are you familiar with RF, b/c the processes are similiar, if not the same"

Colleen