On Penicillin V for Pandas but doctor told me to institutionalize

[wercnc]

My 9 year old son has been behaving incredibly strangely. I have been researching PANS and I am fairly certain he has this. I took him to an infectious disease doctor from a reputable children's hospital. He was an older doctor, perhaps in his 60's. I brought along my sons therapist and my son just did his normal thing while in the exam room. The doctor looked at me and asked me, " what do you want me to do for you?" SERIOUSLY? Look at my child, he cannot be happy, he is miserable he cannot control himself, help him, give him the antibiotics that may help him." The doctor told me that PANS did not exist. He said my son had severe behavioral issues and I needed to place him in a hospital setting that he was only going to get worse, he explained that is would be best for me to have him institutionalized. I could barely breath. I said that I wanted the Penicillin. He reluctantly wrote me the prescription. He has been on it for 2 days. I swear I see a change, ever so slight, but I see something. Where does one find a doctor who treats this? Why don't doctors help? I also have read that the use of penicillin might not be the best choice for all individuals with PANS. Which means I now must find another doctor who can oversee my sons treatment and be willing to switch out meds if need be. Are there any doctors in the North East Region of PA that anyone knows about? This poor child is in such distress. What is the average length of time for the meds to kick in and work?

 

[Chemar]

Hi

so sorry to hear what your son is going through.

 

I am just bumping your first post up so others will see it and respond.

[T_Anna]

I'm so sorry that you are going through this. The doctor is wrong and you need to find a PANS/PANDAS specialist. In south Jersey there is the doctor who helped Sammy Maloney, Dr. Catherine Nicolaides.

 

Catherine Nicolaides, MD

Elmwood Business Park

733 Route 70 East

Building #2, Suite 201

Marlton, NJ 08053

856-983-6675

 

Augmentin XR is generally preferred over straight up penicillin.

 

HTH,

T.Anna

[beeskneesmommy]

When was the onset of symptoms? Many of us travel to see specialists. I am so sorry that you had this terrible experience. Did he provide any diagnosis? Here is a list of PANDAS docs:

 

http://pandasnetwork.org/resources/providers/provider-list/

 

This site can also give you more information. I am originally from the suburbs of Philly, but live in NC now. I travel to see Dr. Bouboulis in CT, Dr. Latimer in MD and Dr. Elia in DE. I suggest that you get an appt. set with someone ASAP because the wait can be a couple of months. In the mean time, can you get a doctor to prescribe Augmentin?

[nicklemama]

You are experiencing what many of us have faced...no help from the medical profession. Most of us travel. Local help is hard to find. There are several doctors in your "area", that is within a few hundred miles vs a few thousand miles for many, to choose from. Most have lengthy waits for appointments. Search the archives here and see what might fit best. Be aware some don't take insurance. You can get an appointment with Dr T right away. He's in NJ. That would be a good place to start and get treatment right away. In the meantime, you can make a appt with someone else closer and wait while getting treatment.

Dr T will be very thorough in his assessment. He will order lots of blood labs to see what the trigger is.

It took me 3.5 yrs to find someone in my local area to help. We still travel occasionally to see Dr K in Chicago.

Have you contacted the NIH? They are conducting a trial and are looking for the last few children to accept in the study. The cost is free if you are accepted and your child will receive IVIG. You have to meet very specific parameters to be accepted but its worth looking into. Google PANS study trial or visit www.pandasnetwork.org for the link.

[tpotter]

I totally agree with contacting the NIH (http://clinicaltrials.gov/ct2/show/NCT01281969). You're actually very lucky that the doctor gave your son the abx, because we couldn't even get that! I am PMing you additional information.

[JoyBop]

Have you tried your primary care doc? They can help if they are on board. Bring some PANDAS literature. I have found that although none if my local doctors were well verses in the disorder, they all felt he fit the dx and are doing their best to treat with abx while I make my way through the obstacle course in getting to a PANDAS specialist. Every kid responds different to the abx so you might no get it on the first try. My kiddos didn't see improvement until day 10 or 11 so hang in there.

[AmySLP]

Where in PA?

[EAMom]

Just be aware that some members in the past have had problems with Dr. Nicolaides. Maybe she has changed over the years and is more up to date now?? She is purposefully not on the "recommended" docs list on this site (or PANDASnetwork.org).

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

http://pandasnetwork.org/resources/providers/

 

Even with the docs on the lists...sometimes it is good to post and get more personalized feedback on their approach. Some are "good" with diagnosis, but very conservative with antibiotics (or have a limited workup, not checking for immune def or other infecitons). Every doc has pros/cons.

[T_Anna]

Didn't realize about Niccolaides. Just looked like she was close and helped SS.

 

T.Anna

[EAMom]

Yeah...some of the docs on Beth's list are questionable. Remember, Beth is the one who is convinced "ASO is a test for PANDAS" and Augmentin is the best (only?) way to treat.

[nicklemama]

Dr Niccolaides is or has moved her practice. Not sure if the above info is correct. I've read that she treats only those who fit the strict definition of PANDAS. No strep, no treatment. Someone can correct me if I'm wrong.

[rowingmom]

When DD11 was initially rx penicillin for strep - she had a horrible sore throat, but at that time I had no idea that all the other symptoms she was suffering from were infection related - she improved significantly after about 3 days and remained that way until 2 days after the prescription had finished. All symptoms returned. Sore throat came back and I was given a second round to take only if the second swab was positive. It returned negative, but I gave the penicillin anyway . Again her symptoms declined, but began returning before the second round had ended. Only combination abx treatment worked for us.

 

As mentioned by others above, please find some help with a specialist. Last fall Elizabeth Wray was removed from the custody of her parents (who had been getting her treatment for PANDAS-related anorexia) by BCH to be treated the way the hospital saw fit. I have heard no updates about her condition. The mainstream will stop at nothing to prove PANDAS/PANS doesn't exist.

[EAMom]

Nicklemama.

 

I did hear (on another group from a parent) that Dr. N has consulted with Dr. T on a case (s). So maybe she is getting more up to date? I sure would be interested in how she is diagnosing/treating PANDAS now. I know a few years back when lots of us were doing the Cunningham test (through the study), she wasn't doing it/familiar with it, and was disappointing on many other levels.

 

It would be great if she was now more up to date, not just recognizing the obvious strep acute onset PANDAS cases.

[OBDad]

I'm so sorry that you are going through this. The doctor is wrong and you need to find a PANS/PANDAS specialist. In south Jersey there is the doctor who helped Sammy Maloney, Dr. Catherine Nicolaides.

 

Catherine Nicolaides, MD

Elmwood Business Park

733 Route 70 East

Building #2, Suite 201

Marlton, NJ 08053

856-983-6675

 

Augmentin XR is generally preferred over straight up penicillin.

 

HTH,

T.Anna

 

 

My 9 year old son has been behaving incredibly strangely. I have been researching PANS and I am fairly certain he has this. I took him to an infectious disease doctor from a reputable children's hospital. He was an older doctor, perhaps in his 60's. I brought along my sons therapist and my son just did his normal thing while in the exam room. The doctor looked at me and asked me, " what do you want me to do for you?" SERIOUSLY? Look at my child, he cannot be happy, he is miserable he cannot control himself, help him, give him the antibiotics that may help him." The doctor told me that PANS did not exist. He said my son had severe behavioral issues and I needed to place him in a hospital setting that he was only going to get worse, he explained that is would be best for me to have him institutionalized. I could barely breath. I said that I wanted the Penicillin. He reluctantly wrote me the prescription. He has been on it for 2 days. I swear I see a change, ever so slight, but I see something. Where does one find a doctor who treats this? Why don't doctors help? I also have read that the use of penicillin might not be the best choice for all individuals with PANS. Which means I now must find another doctor who can oversee my sons treatment and be willing to switch out meds if need be. Are there any doctors in the North East Region of PA that anyone knows about? This poor child is in such distress. What is the average length of time for the meds to kick in and work?

I am so sorry to hear about your son's condition. We are going through a similar experience with our 6 year old son. Pediatricians were not helpful. We found Dr. Elizabeth Latimer in Bethesda, MD and she diagnosed him with PANDAS. He was treated 3 weeks ago with IVIG and is on Augmentin. There has been no improvement yet, but we remain optimistic.

Also, the NIH is conducting an IVIG study this summer in Bethesda. You may qualify.

Best of luck!

OBDad