Appt. with Dr. Latimer yesterday

[thereishope]

I've tried briging in my child during rages and extreme OCD. They just had a nervous laugh and told me maybe he's bipolar and I needed to see a psychiatrist. I'm at the point, I don't even want to invite another doctor into our world. But they are the ones with the power of the pen to write prescriptions.

 

Maybe when my child starts raging, I should carry him into the ped's office and say, "FIX HIM"! But then again, I'll walk out w an antidepressant....very deep sigh.

[smartyjones]

have you tried to video behaviors to help? i know this is easier said than done b/c i haven't done it during a freak-out. of all places, Dr. Singer's office suggested to video the behavior. i think the today show segment was powerful b/c you saw sammy's videos - the birthday party normal and then when saw the outside ones, it just made you think, 'something's wrong with this kid'. unfortunately, so many drs. think we're all just crazy moms. and even if they see behavior in the office, they can easily attribute it to stress of being in the office. when they see for themselves they may be able to get it.

 

my son had an intense potty phobia for almost 2 years. we were never able to get help b/c whoever we consulted rattled off all the traditional potty nonsense. i would say it was like throwing him to the lions' den but they just couldn't get it. it was so frustrating! you just look at them and think 'i'm not an idiot - you're not listening!"

 

i think it often takes seeing with their own eyes to get it. i don't know if that would help you get abx but it may help them to see something's definitely wrong.

[Stephanie2]

Well, it's not that the doctors don't believe me that something is wrong, but I'm not sure they are convinced it's pandas and they just don't want to keep handing out abx because they are not educated on how to treat it. Yes, the docs all think I am crazy and they will never get it!

 

Vickie - I was also told that my son was bi-polar and that he needs a mood-stabilizing drug!

 

I just ordered some zithromax from London, for God's sake! I hope it is legit...my husband will freak, but I am desperate!!! Only problem is that it will take 10 days to get here, but at least I know it's on the way.

 

So, the plan is to follow through with the new DAN next week and in the meantime I think I will make an appt with Dr. Tanya Murphy in Tampa as a backup plan...

 

Stephanie

 

 

have you tried to video behaviors to help? i know this is easier said than done b/c i haven't done it during a freak-out. of all places, Dr. Singer's office suggested to video the behavior. i think the today show segment was powerful b/c you saw sammy's videos - the birthday party normal and then when saw the outside ones, it just made you think, 'something's wrong with this kid'. unfortunately, so many drs. think we're all just crazy moms. and even if they see behavior in the office, they can easily attribute it to stress of being in the office. when they see for themselves they may be able to get it.

 

my son had an intense potty phobia for almost 2 years. we were never able to get help b/c whoever we consulted rattled off all the traditional potty nonsense. i would say it was like throwing him to the lions' den but they just couldn't get it. it was so frustrating! you just look at them and think 'i'm not an idiot - you're not listening!"

 

i think it often takes seeing with their own eyes to get it. i don't know if that would help you get abx but it may help them to see something's definitely wrong.

[sf_mom]

Good job... Stephanie!! What is the link for London purchase?

 

-Wendy

[faith]

Hi Nancy,

How is your girl doing? could I ask how the "no wheat" thing is going? I know you mentioned that some time back. is that still helping? are you still treating yeast, did that help any? do you give the abx on your own or from a doctor? where do you stand re PANDAS?

 

Faith

[Worried_Dad]

Dr. K is our son's main PANDAS doc (he's only 3+ hours away), but we also did one phone consult with Dr. Latimer last Spring after our son's last (and worst) exacerbation hit. They both impress me: both seem very knowledgeable and compassionate. Interestingly, our phone consult back then with Dr. L did get "delayed" and she ended up calling us back later that night (much later than we'd been told).

 

Both used to be very responsive to e-mails, too, but I've noticed that this has become less reliable over the past 6 months. I really get the feeling that both are overwhelmed by the number of desperate PANDAS patients coming to them from all over. This disease is too darned widespread for 2 doctors to handle!!!

[T_Mom]

have you tried to video behaviors to help? i know this is easier said than done b/c i haven't done it during a freak-out. of all places, Dr. Singer's office suggested to video the behavior. i think the today show segment was powerful b/c you saw sammy's videos - the birthday party normal and then when saw the outside ones, it just made you think, 'something's wrong with this kid'. unfortunately, so many drs. think we're all just crazy moms. and even if they see behavior in the office, they can easily attribute it to stress of being in the office. when they see for themselves they may be able to get it.

 

my son had an intense potty phobia for almost 2 years. we were never able to get help b/c whoever we consulted rattled off all the traditional potty nonsense. i would say it was like throwing him to the lions' den but they just couldn't get it. it was so frustrating! you just look at them and think 'i'm not an idiot - you're not listening!"

 

i think it often takes seeing with their own eyes to get it. i don't know if that would help you get abx but it may help them to see something's definitely wrong.

 

Hey SmartyJones--What did Singer say about the video?

[Stephanie2]

Good job... Stephanie!! What is the link for London purchase?

 

-Wendy

 

Here is the link, let me know if it doesn't work. I'll let you know if I receive the stuff!

 

https://secure.easy.md/order/index.html

 

 

Surprisingly it wasn't all that expensive and I couldn't find out what the catch was (I mean it is more expensive than a $10 copay, but compared to most sites I visited...not too bad, expecially without an rx).

 

Stephanie

[smartyjones]

t mom - we didn't actually go to see Singer. another dr at JHU suggested we should see him - it was a bit odd b/c he said he believed my son should see a neurologist and referred us to Singer with some words like "pandas has been a pet project of his" and definitely gave us the feeling that he felt Singer would be able to help us. when i researched him, it did not appear that he would be helpful. that's when i first started posting here and got more info on him.

 

i spoke with his asst - who told me on the phone that "he does see pandas patients" and then a few comments later "he doesn't believe the science supports pandas". my conversation with her just confirmed that i thought he'd be a dead end but i did think it was good advice to have videos of the behaviors you're trying to explain b/c so often, drs don't really listen, they just jump to what they already think.

[sf_mom]

I agree... Hopefully, hopefully, hopefully more Dr.'s will start treating.

 

I was actually told by an Immunologist today that if my son got sick again he treat him so I wouldn't have to go all the way back to Chicago. That was a relief. BUT, he was very unwilling to treat with monthly IVIG without PID Diagnoses. This Dr. has thankfully treated a few and sounded like he'd treat my son's friend based on elevated anti-DNase-B of 680 and one another child based on medical history. So we are making a little bit of headway in the Bay Area.

 

-Wendy

 

 

Dr. K is our son's main PANDAS doc (he's only 3+ hours away), but we also did one phone consult with Dr. Latimer last Spring after our son's last (and worst) exacerbation hit. They both impress me: both seem very knowledgeable and compassionate. Interestingly, our phone consult back then with Dr. L did get "delayed" and she ended up calling us back later that night (much later than we'd been told).

 

Both used to be very responsive to e-mails, too, but I've noticed that this has become less reliable over the past 6 months. I really get the feeling that both are overwhelmed by the number of desperate PANDAS patients coming to them from all over. This disease is too darned widespread for 2 doctors to handle!!!

[michele]

I think a DAN! is a good idea Stephanie. They do treat and believe in PANDAS. It is in K Bock's book and the new J McCarthy books. If you get a phone consult from Dr. K he will email you notes. Then you take them to your Pcare physician and they can treat if they are willing. Ours was not willing to try the steroids because after them is IVIG and she didn't want to do it. However an immunologist did give us antibiotics and an infectious disease Dr. did too. After that our pediatrician got on board also. I was able to get Omnicef or Penvk or Augmentin. The Azith was a no go because of resistance in OH. My son did do well in the beginning on pen vk and then aug and finally on Omnicef. However they stopped working after time and he started getting bowel issues. I don't know if it was from the antibiotics but he was constipated and pooping himself daily and couldn't get it out completely.(encopresis) I stopped the antibioics because of it but wonder what we should do now with winter strep season here? After reading Saving Sammy I think maybe we should have tried higher amounts of antibiotics.

 

Good idea buying the azith! I never got my reports from Latimer's visit and that was July! I mean how can local Dr's treat him if she doesn't pass on her report? I've called and emailed over and over too. Currently I've got too many Dr's making too many different opinions/diagnosis. The other day it was PDD-NOS.

 

 

I agree... Hopefully, hopefully, hopefully more Dr.'s will start treating.

 

I was actually told by an Immunologist today that if my son got sick again he treat him so I wouldn't have to go all the way back to Chicago. That was a relief. BUT, he was very unwilling to treat with monthly IVIG without PID Diagnoses. This Dr. has thankfully treated a few and sounded like he'd treat my son's friend based on elevated anti-DNase-B of 680 and one another child based on medical history. So we are making a little bit of headway in the Bay Area.

 

-Wendy

 

 

Dr. K is our son's main PANDAS doc (he's only 3+ hours away), but we also did one phone consult with Dr. Latimer last Spring after our son's last (and worst) exacerbation hit. They both impress me: both seem very knowledgeable and compassionate. Interestingly, our phone consult back then with Dr. L did get "delayed" and she ended up calling us back later that night (much later than we'd been told).

 

Both used to be very responsive to e-mails, too, but I've noticed that this has become less reliable over the past 6 months. I really get the feeling that both are overwhelmed by the number of desperate PANDAS patients coming to them from all over. This disease is too darned widespread for 2 doctors to handle!!!

[Stephanie2]

Michele, I'm sorry about the PDD-NOS dx, do you agree with that dx or do you think it is more pandas? My friend's son was dx'd with PDD-NOS and I talked her into taking him to a DAN doctor and we watched him come off the spectrum VERY RAPIDLY! I mean within a few weeks he was more socially engaged and within months he was completely socially engaged and just easier to manage, etc... There really is hope with that dx. I believe at one time my son had pdd or aspergers but the DAN route has really helped (also with my 20 month old who I believe was fully autistic before we went to the DAN). We have been doing the DAN protocol for 8 months, but I ran into a roadblock with our doctor b/c he does not want my son on antibiotics long-term so I am switching to a DAN who is known for successfully tx pandas.

 

Stephanie

 

I think a DAN! is a good idea Stephanie. They do treat and believe in PANDAS. It is in K Bock's book and the new J McCarthy books. If you get a phone consult from Dr. K he will email you notes. Then you take them to your Pcare physician and they can treat if they are willing. Ours was not willing to try the steroids because after them is IVIG and she didn't want to do it. However an immunologist did give us antibiotics and an infectious disease Dr. did too. After that our pediatrician got on board also. I was able to get Omnicef or Penvk or Augmentin. The Azith was a no go because of resistance in OH. My son did do well in the beginning on pen vk and then aug and finally on Omnicef. However they stopped working after time and he started getting bowel issues. I don't know if it was from the antibiotics but he was constipated and pooping himself daily and couldn't get it out completely.(encopresis) I stopped the antibioics because of it but wonder what we should do now with winter strep season here? After reading Saving Sammy I think maybe we should have tried higher amounts of antibiotics.

 

Good idea buying the azith! I never got my reports from Latimer's visit and that was July! I mean how can local Dr's treat him if she doesn't pass on her report? I've called and emailed over and over too. Currently I've got too many Dr's making too many different opinions/diagnosis. The other day it was PDD-NOS.

 

 

I agree... Hopefully, hopefully, hopefully more Dr.'s will start treating.

 

I was actually told by an Immunologist today that if my son got sick again he treat him so I wouldn't have to go all the way back to Chicago. That was a relief. BUT, he was very unwilling to treat with monthly IVIG without PID Diagnoses. This Dr. has thankfully treated a few and sounded like he'd treat my son's friend based on elevated anti-DNase-B of 680 and one another child based on medical history. So we are making a little bit of headway in the Bay Area.

 

-Wendy

 

 

Dr. K is our son's main PANDAS doc (he's only 3+ hours away), but we also did one phone consult with Dr. Latimer last Spring after our son's last (and worst) exacerbation hit. They both impress me: both seem very knowledgeable and compassionate. Interestingly, our phone consult back then with Dr. L did get "delayed" and she ended up calling us back later that night (much later than we'd been told).

 

Both used to be very responsive to e-mails, too, but I've noticed that this has become less reliable over the past 6 months. I really get the feeling that both are overwhelmed by the number of desperate PANDAS patients coming to them from all over. This disease is too darned widespread for 2 doctors to handle!!!

[MMC]

Stephanie,

We too have had issues with Dr Latimer returning phone calls and emails. Have never had an email returned, in fact. It took several tries for the phone consult to happen this past summer...so, this is not unusual. We paid $400 out of pocket for this. After the phone consult, she called and and spoke with our local pediatrician for about 20 mins. I was happy and impressed with this. But, since then, she has rarely returned a phone call. I am not sure if her office staff is not giving her the messages or if she cannot get to them all. I agree she is probably overwhelmed with all the pandas kids...her office is small and she is only one person. But, it would be nice to have more concise communication, and not be strung along expecting a call back when it never happens...this is unprofessional. We tried for 3 weeks to get her and our ped to talk on the phone again and it never worked out. Thankfully, by that time, we had an appt in her office and had her attention for 2 hrs (both kids). This is when we got the coveted prednisone for both for 5 weeks. For all the out-of-pocket money we have paid her office ($980), we are disappointed with the follow-up via phone and email...so, I understand your frustrations. We have a follow up scheduled mid December and will drive back up there from Raleigh, NC area...only about 4 and 1/2 hrs, so not too bad.

 

- Mark

[faith]

Mark,

could you give an update on where your kids are with the pred? how are they doing?

 

just curious, do you mean that you've tried to talk with her in the midst of the prednisone treatment and have not been able to? if so, that's scary, you need to be able to communicate with the doctor who is treating your kids. this worries me what I'm hearing as we have an in person appt. in two weeks. I won't be able to deal with that. When you do go back for the follow up, will the course of pred be over, and then what? could I also ask how long your kids have been dealing with symtoms?

 

thanks

Faith

[EAMom]

This would be something for whoever has an actual face to face appointment with Dr. Latimer...

1) mention that others have had trouble getting in touch with her (follow-up questions etc.)...multiple phone calls/e-mails

2) is she getting the messages?

3) what is the best way to get in contact with her

4) what does she suggest a patient do after repeated efforts at trying to contact her

 

Maybe if someone asks her these questions face to face you'd get some kind of answer. I can appreciate that she might feel overwhelmed...but honestly, Dr. K (the few times I've e-mailed) has ALWAYS answered my e-mails (even if the answer is brief). btw, my dd is not a patient of his and I have never paid for a phone consult...so really he has no obligation to answer, but he always does. So, I find it surpising that actual patients of Dr. Latimer's (or those willing to pay $$ for a phone consult) are not getting the responses they should.