Jump to content
ACN Latitudes Forums

Remission, keep appointment?


cdklyn
 Share

Recommended Posts

My 4 year old daughter was just diagnosed with PANDAS in January of this year and it is our belief she's a mild case. We make this distinction not based on medical opinion, but based on our own research of the literature and comparisons to many of the other stories on this forum. She had her tonsils removed the end of January and we hope this will significantly reduce her strep infections. She also finished her 6 week dose of antibiotic last weekend. Three days later we saw a significant decrease in her OCD behaviors and improvement in mood, and today, one week later, she has none of the OCD symptoms and her mood is mostly back to normal. She is still having issues with nightmares and saying she's scared to go to sleep because of bad dreams, but she does sleep. We're very happy about the improvments, and it's so obvious to us as well as our family and friends that our daughter, as well as the rest of our family, feel normal again. Ofcourse, today she woke up with an ear infection so she is on a 5 day dose of azithromycin; however, we're hoping for the best and that this infection won't cause another flare.

 

Today I also received a call from Dr. Tanya Murphy's office for an appointment at the end of March. We live in Texas and travelling to Florida will be very expensive and more time off work, as well the possibly that it won't be covered by my insureance if my pediatrician won't refer us to her (which is a possibility since he's recommended a neurologist we are scheduled to see on March 8). My questions is, should we jump at this appointment and go to Dr. Murphy, eventhough our daughter is currently in a remission, or should we wait and see? My local doctors do treat with antibiotics and are in fact the ones that diagnosed her with PANDAS, but are by far not experts and not referring me to an expert neurologist. Would Dr. Murphy be able to do a thorough consult and develop a good treatment plan if my daughter is still in remission at the time of the appointment?

 

Thank you!

Link to comment
Share on other sites

It is my personal opinion that it is best to have a current relationship with a pandas specialist, if you have a pandas child.

 

That being said, I have not seen Dr Murphy (so don't know her protocol), and it does sound like a significant hardship for you to get there.

 

Hopefully, some patients of hers will chime in. There is a possibility she can do a thorough work up, and then write a plan for your docs, if they are agreeable, this could save you a lot of heartbreak if things were to take a turn for the worse.

 

You don't have a crystal ball, but I guess I would rather waste some money and time off, and her never get sick again- than for you to cancel, and her to have a relapse, and for you to be without proper treatment. (It is great that your ped is cooperative, but sometimes it takes more than abx).

Link to comment
Share on other sites

It is my personal opinion that it is best to have a current relationship with a pandas specialist, if you have a pandas child.

 

That being said, I have not seen Dr Murphy (so don't know her protocol), and it does sound like a significant hardship for you to get there.

 

Hopefully, some patients of hers will chime in. There is a possibility she can do a thorough work up, and then write a plan for your docs, if they are agreeable, this could save you a lot of heartbreak if things were to take a turn for the worse.

 

You don't have a crystal ball, but I guess I would rather waste some money and time off, and her never get sick again- than for you to cancel, and her to have a relapse, and for you to be without proper treatment. (It is great that your ped is cooperative, but sometimes it takes more than abx).

I agree with this.. I would try to keep it even if she is doing ok..

Tracie

Link to comment
Share on other sites

We see Dr. M. for both of our PANDAS kids, she's local for us, so the travel cost isn't something that we have to consider. My son was 2 at the time of his first consult (he's 4 now, and a sever case), my daughter 5, and a mild case - like yours.

 

I will tell you this, the first appointment with her is very thorough - over an hour for my daughter, a couple of hours for my son. My daughter was doing very well when we had her initial appointment in January - so there are similarities with your case. The Dr. reviewed her medical history, took a detailed history from us outlining symptoms, etc. and ordered a thorough set of lab work. At your daughters age, most of the appointment is spent taking a history from you of timelines, behaviors, etc... They will ask your daughter a few questions, but with their young age, it's mostly the parent they're dealing with.

 

They confirmed the PANDAS dx at the initial appointment, and at the follow up after the bloodwork came back (which she was still in remission), plotted a treatment course for future infections to be used by our pediatrician. In her case, they even indicated that future follow ups were not necessary unless things went very south. But they did provide a detailed protocol for our pediatrician to use.

 

Our ped is awesome, and has seen a few cases, but was by no means an expert - so he's welcomed their opinions on treatment options.

 

I will say that Dr. M is more conservative than other docs, focusing primarily on abx, but will consider IVIG if there are other immune reasons.

 

Her staff is pretty responsive to email, usually responding within 24-48 hours.

 

If I were you, I would keep the appointment, but I would call ahead and ask for the lab orders for any and all bloodwork they need so the results are there when you have the appointment. This would possibly eliminate the need for a follow up like we had to review blood results.

 

Having a specialist on board will help your pediatrician if he encounters any roadblocks, and may help if insurance starts to question treatments like long term abx that may be needed. It will also be easier to get future appointments with the office if things do go south - and they'll already have her established history.

 

Just my 2 cents for what it's worth! Good luck!

Link to comment
Share on other sites

We see Dr. M. for both of our PANDAS kids, she's local for us, so the travel cost isn't something that we have to consider. My son was 2 at the time of his first consult (he's 4 now, and a sever case), my daughter 5, and a mild case - like yours.

 

I will tell you this, the first appointment with her is very thorough - over an hour for my daughter, a couple of hours for my son. My daughter was doing very well when we had her initial appointment in January - so there are similarities with your case. The Dr. reviewed her medical history, took a detailed history from us outlining symptoms, etc. and ordered a thorough set of lab work. At your daughters age, most of the appointment is spent taking a history from you of timelines, behaviors, etc... They will ask your daughter a few questions, but with their young age, it's mostly the parent they're dealing with.

 

They confirmed the PANDAS dx at the initial appointment, and at the follow up after the bloodwork came back (which she was still in remission), plotted a treatment course for future infections to be used by our pediatrician. In her case, they even indicated that future follow ups were not necessary unless things went very south. But they did provide a detailed protocol for our pediatrician to use.

 

Our ped is awesome, and has seen a few cases, but was by no means an expert - so he's welcomed their opinions on treatment options.

 

I will say that Dr. M is more conservative than other docs, focusing primarily on abx, but will consider IVIG if there are other immune reasons.

 

Her staff is pretty responsive to email, usually responding within 24-48 hours.

 

If I were you, I would keep the appointment, but I would call ahead and ask for the lab orders for any and all bloodwork they need so the results are there when you have the appointment. This would possibly eliminate the need for a follow up like we had to review blood results.

 

Having a specialist on board will help your pediatrician if he encounters any roadblocks, and may help if insurance starts to question treatments like long term abx that may be needed. It will also be easier to get future appointments with the office if things do go south - and they'll already have her established history.

 

Just my 2 cents for what it's worth! Good luck!

Link to comment
Share on other sites

airial95,

 

Thank you so much for this information. Your experience reasures me we are on the right track! It's also very helpful to know what to expect when we get there. I'll be travelling with my daughter alone and she has a lot of anxiety about all medical environments now due to everything that's happened to her over the last 6 months. Your information helps me prepare her for what's to come and reduces my anxieties in knowing how to prepare her for the appointment. Just a quick question, did they only do blood work...any other tests I need to prepare her for. I already know she will protest the bloodwork, needles make her literally climb the walls and I mean she literally climbed over me last time someone tried to draw blood. She usually has to be restrained to do the tests.

 

Thank you so much!

Link to comment
Share on other sites

They only did bloodwork, other than the normal blood pressure, vitals type stuff at the start of the appointment. However, they don't do the bloodwork themselves, they request it from a lab (or your pediatrician if they can do it in house - although ours isn't capable of running some of the stuff that they request.)

 

So I would ask them to fax over orders so you can do it and have the results sent prior to your travelling, that way you can also do it on your daughter's "terms". (For us, it was a breakfast of dunkin' donuts afterwards and a new DS game :) )

Link to comment
Share on other sites

i don't have any personal experience with dr murphy. it may be helpful to try to imagine if you did not keep that appt, and your daughter was healthy for the next few months and then relaspsed -- what would your plan and thoughts be then?

 

my ds had sudden onset at age age 4.5. we got a diagnosis rather quickly and after a few false-starts, got him on a good abx for him and he had 100% remission in about 3 days. he was great for the remainder of 30 days abx and then about another 30 days before he relapsed. that was 3.5 years ago, i didn't know of this forum -- media and info was so scant compared to now (and i know that was ridiculous compared to even 5 yrs ago). i thought he was cured. when he relaspsed, we were devastated and were scrambling.

 

i think it's a good idea to formulate a plan A, B and C -- just to have ready and waiting -- hopefully, to never use. all the more better if you can formulate it while she's in a healthy state.

 

i do have a friend who has a healthy teenage daughter and only now recalls a time when she brought her in to dr b/c she was driving her crazy with whining. surprise -- she had asymptomatic strep and the behaviors cleared up after the strep did. only b/c of our ds, does she now think this was likely a mild pandas situation that never returned. so, i think it is possible and likely happens more often than we know -- but knowinig the other possible end of the spectrum -- i think it's good to have a few plans in the wings.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...