To see Dr. L or not to see Dr. L - That is the question...

[matis_mom]

Hi all,

I am at a crossroads here... Last week we saw our Dr. and there was so much new info I decided to cancel my appointment with Dr. Latimer. Apparently, my PANDAS ds has either RF/RA and/or Lymes as well, and possibly yeast/mold/heavy metal issues. All of this is interfering with the abxs in the drs. opinion. We have a long list of labs and other things to do from now til our next visit. She is looking at it from a systemic point of view, and looking into and addressing all the different areas. It is a bit overwhelming for me.

 

It seems Dr. Latimer looks at it specifically from the PANDAS/immune angle, and does what it takes to get the autoimune reaction to stop or slow down. Am I getting this right?

 

So I don't know what to do. Do I just put all the other stuff on the back burner and go to Dr. Latimer? Do I go see Dr. Latimer and get quicker (hopefully) results?

I have to say my son's OCD/anxiety symptoms are not too bad, we would surely like them to go away, but I don't know if it's worth the risk involved in IVIG or PEX.

 

I guess right now I am more concerned about the prospect of Rheumatic Fever, but then again we can't be sure. But RF is also and autoimmune problem, so maybe seeing Dr. Latimer would be useful for that too...

 

I am so confused

 

Isabel

[sf_mom]

My opinion is DO NOT ACCEPT low level symptoms as many children become progressively worse over time. How many posts have you seen where someone is back posting...... saying they wished they had treated earlier because now their child is severe.

 

If it were me AND even if I was overwhelmed, I would seek any and all Dr.s until my child was 100%. FOR example: my cousin almost died from what they thought was Scarlet Fever as a child... perhaps it was RF now she is left with anxiety issues and Rheumatoid Arthritis at 50.

 

Immune deficient children are treated with IVIG all the time!!! I think the risks far outweigh not treating.

 

-Wendy

 

 

 

Hi all,

I am at a crossroads here... Last week we saw our Dr. and there was so much new info I decided to cancel my appointment with Dr. Latimer. Apparently, my PANDAS ds has either RF/RA and/or Lymes as well, and possibly yeast/mold/heavy metal issues. All of this is interfering with the abxs in the drs. opinion. We have a long list of labs and other things to do from now til our next visit. She is looking at it from a systemic point of view, and looking into and addressing all the different areas. It is a bit overwhelming for me.

 

It seems Dr. Latimer looks at it specifically from the PANDAS/immune angle, and does what it takes to get the autoimune reaction to stop or slow down. Am I getting this right?

 

So I don't know what to do. Do I just put all the other stuff on the back burner and go to Dr. Latimer? Do I go see Dr. Latimer and get quicker (hopefully) results?

I have to say my son's OCD/anxiety symptoms are not too bad, we would surely like them to go away, but I don't know if it's worth the risk involved in IVIG or PEX.

 

I guess right now I am more concerned about the prospect of Rheumatic Fever, but then again we can't be sure. But RF is also and autoimmune problem, so maybe seeing Dr. Latimer would be useful for that too...

 

I am so confused

 

Isabel

[Megs_Mom]

Hi Isobel - it can be very overwhelming! I know just how you feel. Just as a suggestion, try to have 2 roads running at once. Personally, I think having a second opinion (or a 3rd in our case) is very helpful. So, I'd suggest doing an action plan:

1. Call Latimer, get appt for late November or December.

2. Run all the requested tests and evaluate with your current doc.

3. Run Cunningham if you have not & if you still can before they close.

 

You can ALWAYS cancel a doc appt. But if you get the results & are NOT confident once your current doc lays out a plan - then you may be a month or more out from gettting another appt. Personally, no matter what results you get, I would present in person to Latimer as well if it is not horribly inconvenient for you to get there.

 

Worse case, you waste some time & money. Best case, you will never experience what many of us here have had to go through - which is a LOT more time dealing with, than a trip even from CA to Baltimore! Nip it now if you can.

 

Our daughter has 2 Neurologists (local and Latimer), and Immunologist, a Gastrointerologist & a Ped. You'd think we were good right? Well, our local Neuro is moving, our local Ped is not willing to consult long distance on PANDAS, and our Gastro believes in PANDAS but will only treat symptoms of stomach issues. Our immuno is waiting on results of labs (which if my poor dd does not do soon, I am going to be driven mad!) So we went from a rather extreme position of too much help, to feeling like the team is breaking down a little. We are thanking God for Latimer right now, as she is critical to our rebuilding the team. Honestly, you cannot have enough docs on your team!

[matis_mom]

Thanks all for the input. Between this and following the "How to respond" topic, I do feel I should go see Dr. Latimer. I keep hoping the abxs will suddenly start working, but so far they haven't, and it can take a while to get in to Dr. Latimer. So I will call again and see when they can see him. If anything, I can present it to my husband as "better go now before the new year starts and we have to meet our deductible again!" He encouraged me to keep the appointment, but for some reason I chickened out.

 

Part of me doesn't want to "offend" the Dr. by going for a second opinion, but hey, if it was her son, I'm sure she'd be going for a second opinion too!

As they say, when the going get's tough, the tough get going...

Time for me to get tough!

 

Thanks for the encouragement!

 

Isabel

[Megs_Mom]

Are you from the South too? I have lost much of my inhibitions about offending in the last 18 months. Polite just does not cut it anymore . In serious illnesses, 2nd opinions are the norm. I don't always tell everyone who I am talking to, unless I need to either choose care, or get docs to consult. Then I am very frank about it. You may need docs to coordinate care at some point - better to find out now if anyone is not on board for that. Good luck!

[matis_mom]

Thanks all for the input. Between this and following the "How to respond" topic, I do feel I should go see Dr. Latimer. I keep hoping the abxs will suddenly start working, but so far they haven't, and it can take a while to get in to Dr. Latimer. So I will call again and see when they can see him. If anything, I can present it to my husband as "better go now before the new year starts and we have to meet our deductible again!" He encouraged me to keep the appointment, but for some reason I chickened out.

 

Part of me doesn't want to "offend" the Dr. by going for a second opinion, but hey, if it was her son, I'm sure she'd be going for a second opinion too!

As they say, when the going get's tough, the tough get going...

Time for me to get tough!

 

Thanks for the encouragement!

 

Isabel

I called Dr. Latimer's and they gave us an appointment for Nov. 18th! I guess it's meant to be then.

I also asked Dr. Cunningham to send us the kit. What the usual turn-around on that?

 

Isabel