Help! Immunologost or Neurologist?

[MaggiesMoons]

I am so overwhelmed...so much info on here and VERY helpful. We are still in the beginnings of figuring this all out! We have been to the Ped who did the ASO and Titer test---negative, yet we have other medical history of Strep over and over again and then these reds bumps on his thigh area which he tested positive for strep 2x when these showed up and then negative 1x and then after that they just gave us ointment but ot comes back. Everytime it comes back it is within 24 hrs of him looking like he is coming down with something. J is my 8 yr old son who had sudden onset of anxiety/ocd for no apparent reason. They went away completely then again out of the blue they came back after almost 10 weeks. His symptoms are mild. I have tried the ibuprofen thing for a mild vocal tic...and Bam like magic it worked! Took him off and sure enough it came back within 24 hrs or so. So confused about who to turn to! I know in my heart and on paper because I keep a journal that something is wrong medically and I feel compelled to get to the bottom of it. This just all started 8 months ago! Sorry if I am talking in pieces I am stressed, worried, and feel like I am fighting alone and not sure which road to go down 1st!.....just don't know what to do or who to start with! Please help, any info or suggestions will be greatly appreciated!

Also, do I start with a neurologist or immunologist?

Edited September 25, 2011 by MaggiesMoons

[MomWithOCDSon]

Hi Maggie --

 

Glad you found the forum, but sorry to hear your son and your family are being forced to deal with this.

 

Who you turn to at this point is determined largely by where you are and which medical centers are available to you. Most standard doctors . . . even the specialists such as neurologists and immunologists . . . don't really "get" this PANDAS thing. Too many of them outright scoff at it. It can lead, unfortunately, to a waste of time and money, in addition to prolonging your child getting the help he needs. In my area, in fact, the leading children's medical center flat-out refuses to acknowledge PANDAS as a viable diagnosis or condition. Incredibly frustrating!

 

So, I would take a look at the pinned threads here on the forum regarding "Doctors we've seen who've helped with PANDAS" and see if anybody on the list is in your vicinity. You might also take a look through the members here and PM some in your area to see if they can help you with a referral.

 

Also, if you have a good relationship with your pediatrician, you might try approaching him/her with the information specific to your son and his symptoms of which they may not yet be aware, accompanied by some of the research papers and articles available here, on the IOCDF web site, PANDASNetwork.org, etc. Sometimes, a doctor who knows you and your son well, and recognizes that you're not an hysterical, unreasonable parent and his recent behaviors are not "typical" of him, will be willing to step out of the box a little and help you, at least for now while you seek out a "specialist." Our pediatrician did just that for quite some time while we got our ducks in a row.

 

All the best to you! Good luck!

[MaggiesMoons]

Hi Maggie --

 

Glad you found the forum, but sorry to hear your son and your family are being forced to deal with this.

 

Who you turn to at this point is determined largely by where you are and which medical centers are available to you. Most standard doctors . . . even the specialists such as neurologists and immunologists . . . don't really "get" this PANDAS thing. Too many of them outright scoff at it. It can lead, unfortunately, to a waste of time and money, in addition to prolonging your child getting the help he needs. In my area, in fact, the leading children's medical center flat-out refuses to acknowledge PANDAS as a viable diagnosis or condition. Incredibly frustrating!

 

So, I would take a look at the pinned threads here on the forum regarding "Doctors we've seen who've helped with PANDAS" and see if anybody on the list is in your vicinity. You might also take a look through the members here and PM some in your area to see if they can help you with a referral.

 

Also, if you have a good relationship with your pediatrician, you might try approaching him/her with the information specific to your son and his symptoms of which they may not yet be aware, accompanied by some of the research papers and articles available here, on the IOCDF web site, PANDASNetwork.org, etc. Sometimes, a doctor who knows you and your son well, and recognizes that you're not an hysterical, unreasonable parent and his recent behaviors are not "typical" of him, will be willing to step out of the box a little and help you, at least for now while you seek out a "specialist." Our pediatrician did just that for quite some time while we got our ducks in a row.

 

All the best to you! Good luck!

So who do I go to? His Ped gave me the referral to an immunologist. We are an hour from Dr Murphy in Fl but she does not take our insurance. There is a DAN doctor in our general area that has been mentioned...Dr Rossignol, so should I start with him? Or should I go back to his ped and ask for 30 days antibiotics of some sort? Like the augmentin I keep reading about? I will also check out the thread you mentioned...hopefully that will help. We have an appointment late Oct at All Children's in St Pete's, someone on the PANDAS network said they had heard good things there. Just don't know where to turn first.

[dcmom]

To be honest, I cannot imagine living in Florida, and NOT going to Dr Murphy.

 

I have not seen her (live in NJ), but can tell you that most on this forum travel a LOT farther than 1 hour, to see docs who don't take any insurance, to treat pandas. This is a crappy reality. Unfortunately, living 1 hr from Dr Murphy- puts you in the "lucky" category on this forum.

 

We were "lucky" too, we lived in DC when pandas hit, and were 15 minutes from Dr L. We saw her, paid out of pocket. Now we travel from NJ to DC (four hours), pay out of pocket, and still feel lucky. We wasted lots of time and money on docs who didn't treat pandas (not to mention the emotional expense).

 

I hate to be blunt, but after being around here for a while, and having two daughters with pandas- this is a "no brainer"- get the first appt available with Dr Murphy.

 

We actually travelled to St Petersburg this summer for OCD therapy at USF for our two daughters. If your child has ocd- get an appointment with Dr Storch also.

 

Maybe you can ask if they can work something out with you re cost, if it is a hardship for you....

[MaggiesMoons]

To be honest, I cannot imagine living in Florida, and NOT going to Dr Murphy.

 

I have not seen her (live in NJ), but can tell you that most on this forum travel a LOT farther than 1 hour, to see docs who don't take any insurance, to treat pandas. This is a crappy reality. Unfortunately, living 1 hr from Dr Murphy- puts you in the "lucky" category on this forum.

 

We were "lucky" too, we lived in DC when pandas hit, and were 15 minutes from Dr L. We saw her, paid out of pocket. Now we travel from NJ to DC (four hours), pay out of pocket, and still feel lucky. We wasted lots of time and money on docs who didn't treat pandas (not to mention the emotional expense).

 

I hate to be blunt, but after being around here for a while, and having two daughters with pandas- this is a "no brainer"- get the first appt available with Dr Murphy.

 

We actually travelled to St Petersburg this summer for OCD therapy at USF for our two daughters. If your child has ocd- get an appointment with Dr Storch also.

 

Maybe you can ask if they can work something out with you re cost, if it is a hardship for you....

 

Thank you, I appreciate that. The intake person did not tell me I could self pay and being so distraught I did not think to ask. My sons symptoms are very mild yet fit the PANDAS criteria when I read them on different sites! I will call Dr Murphy again 1st thing in the am! I have no problem driving anywhere if it means help! This is what I needed to know. He has mild ocd, I will look up Dr Storch as well. Again, thank you!

PS Do you think I should still keep the appointment with the immunologist? Or wait to see what Dr M says? I just don't know what to do....

[beeskneesmommy]

Maggies: You are NOT alone! So glad you found this forum! Our kiddo had a mild onset at age 2.5 and I did not know about this forum until over 2 years later. If it is pandas, it is imperative that you get your kiddo on abx immediately. There is a small percentage of kids who are able to beat pandas with antobiotics alone, but only when it is caught and medicated very early. Our son started very mildly (eye tics) and, despite treating the multiple Strep Throats with the typical 10 day run of antibiotics, eventually had a major, acute onset after a tonsillectomy while actively infected with Strep Throat. It has taken us almost a year to get him back to where he was 2.5 years ago. He has been seriously affected by pandas for half of his life!

 

Many of us have to travel for help - we are in NC and travel to Philly and to CT to see our son's pandas specialist. It is imperative that you see a pandas specialist and that you make an appt. immediately, as they often have 2+ months wait to get in. In the mean time, if you have a sympathetic ped., perhaps you can get your kiddo on an ongoing (by that I mean not just the 10 day run) therapeutic dose of Augmentin.

 

I do not want to alarm you, rather, stress the importance of acting NOW. I would get in with Dr. Murphy if you can, ASAP, and bite the bullet. You can get started with help and continue to work on finding a pandas specialist that takes your insurance in the mean time.

 

Good luck!

[Dedee]

I agree with the others about Dr. M. We traveled 13 hours to see her. However, just wanted to say that I have heard really good things about Dr. Rossingol also. So while this whole situation stinks for your family, it is great that you have some good options for physicians near by. Get in to see someone as quickly as you can. Best of luck.

 

Dedee

[MaggiesMoons]

Maggies: You are NOT alone! So glad you found this forum! Our kiddo had a mild onset at age 2.5 and I did not know about this forum until over 2 years later. If it is pandas, it is imperative that you get your kiddo on abx immediately. There is a small percentage of kids who are able to beat pandas with antobiotics alone, but only when it is caught and medicated very early. Our son started very mildly (eye tics) and, despite treating the multiple Strep Throats with the typical 10 day run of antibiotics, eventually had a major, acute onset after a tonsillectomy while actively infected with Strep Throat. It has taken us almost a year to get him back to where he was 2.5 years ago. He has been seriously affected by pandas for half of his life!

 

Many of us have to travel for help - we are in NC and travel to Philly and to CT to see our son's pandas specialist. It is imperative that you see a pandas specialist and that you make an appt. immediately, as they often have 2+ months wait to get in. In the mean time, if you have a sympathetic ped., perhaps you can get your kiddo on an ongoing (by that I mean not just the 10 day run) therapeutic dose of Augmentin.

 

I do not want to alarm you, rather, stress the importance of acting NOW. I would get in with Dr. Murphy if you can, ASAP, and bite the bullet. You can get started with help and continue to work on finding a pandas specialist that takes your insurance in the mean time.

 

Good luck!

 

Thanks for the advice. I spent most the day today on the phone with both doctor Murphy and Dr R's offices. Now gathering the rest of the medical histories needed to have sent to Dr M. I will call the ped doctor tomorrow to see if he would be willing to try the Augmentin! You say "if it is PANDAS"......from everything I have read and researched it almost beyond a shadow of a doubt is some type of PANDAS/PITANDS. Too many similarities not to be, he fits almost all the criteria.Keeping my fingers crossed he will do it for me! What should I ask for as far as a therapeutic dose of Augmentin??? I will take my arsenal of information. articles, medical records etc to his ped and hope to bat 1000!

Edited September 26, 2011 by MaggiesMoons

[MaggiesMoons]

I agree with the others about Dr. M. We traveled 13 hours to see her. However, just wanted to say that I have heard really good things about Dr. Rossingol also. So while this whole situation stinks for your family, it is great that you have some good options for physicians near by. Get in to see someone as quickly as you can. Best of luck.

 

Dedee

 

Thanks Dedee, I am trying to get in as fast as they will let me!!! Contacted both Doctors!

[beeskneesmommy]

I say "If it is pandas" as a qualifier - stems from old habits. I am a psychotherapist (non-practicing at this time d/t being a SAHM) and I try to make sure not to make assumptions when I know only the little that I have read. It does sound like pandas and I support you.

 

Re: dosage - it varies by age/weight. My son is 5 and he is taking the typical therapeutic dose that a 40 pound 5 year old would take for active infection. Try to get a therapeutic dose, not just a low dose prophylaxis, asking specifically for the dosage that your doc would utilize if he were treating active Strep with Augmentin.

 

In addition, if you have not read Saving Sammy, by Beth Malobey, you should pick up a copy. She is a champion for pandas patients and their parents. It is an account of her son's onset and eventual recovery.

 

I also recommend that you read the post entitles "an unexpected Turn of Events" on this forum. It is loaded with info and links that will help you.

 

Positive thoughts to you and yours. We are in your corner and keep up the good work! -Kath

[MaggiesMoons]

I say "If it is pandas" as a qualifier - stems from old habits. I am a psychotherapist (non-practicing at this time d/t being a SAHM) and I try to make sure not to make assumptions when I know only the little that I have read. It does sound like pandas and I support you.

 

Re: dosage - it varies by age/weight. My son is 5 and he is taking the typical therapeutic dose that a 40 pound 5 year old would take for active infection. Try to get a therapeutic dose, not just a low dose prophylaxis, asking specifically for the dosage that your doc would utilize if he were treating active Strep with Augmentin.

 

In addition, if you have not read Saving Sammy, by Beth Malobey, you should pick up a copy. She is a champion for pandas patients and their parents. It is an account of her son's onset and eventual recovery.

 

I also recommend that you read the post entitles "an unexpected Turn of Events" on this forum. It is loaded with info and links that will help you.

 

Positive thoughts to you and yours. We are in your corner and keep up the good work! -Kath

 

Thank you so much for the details, this will help greatly when I call the ped tomorrow! I am reading Saving Sammy now and am about 1/2 through it, will finish it tonight. I will also check out that thread you mentioned. Big hugs, I feel like I am getting somewhere now even if it is little steps it all counts to getting this figured out, and I do not feel so alone and lost!

[beeskneesmommy]

Look, my son was really, really sick....and now he is not. You will make it thru this - you just have be extremely proactive (constantly) and advocate like crazy for your baby! This has been the battle of my life (and hopefully, my son will never know and have very little memory of it) but it IS a winable battle if you stay with it - just keep on plugging! Many, many warm thoughts your way - Kath