OK.. I really need help!

[trubiano]

My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical is going on. BUT... I'm crazy, throat culture is negative, and until a PANDAS expert tells her what to do she refuses to change anything. I'm on a list for Dr. Murphy and she is scheduling out in November. How can I continue to watch my son get worse every minute until then?!?!?!

 

 

Update: I called back and basically begged for a trial of new antibiotic until we could get in with the our neuro she wanted us to go back and see. She would only agree to Augmentin for 10 days. If it works should I beg for him to stay on it everyday like the pcn?

Edited August 6, 2010 by trubiano

[thereishope]

You can get a false negative culture while on antibiotics. If it were me, I'd call specialists and try to get in quicker and I would call around to ped's offices, speak to the nurses, be open and honest and ask them to talk to the doctor on staff and if it's worth bringing your son there. You can go to a different ped whenever you want. You do not need to have all files transfered at first. You can also go to urgent care and see if they will give your son a different med. Don't wait until November. Have you called Murphy's office and told them what's going on. Maybe they can bump you up.Call them.

 

Also, scan everything else...has anyone else around him been sick, does he have allergies that are kicking up? If you haven't tried Ibuprofen, give him some. See if that takes the edge off for now and gives him some relief.

Edited August 6, 2010 by Vickie

[airial95]

My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical is going on. BUT... I'm crazy, throat culture is negative, and until a PANDAS expert tells her what to do she refuses to change anything. I'm on a list for Dr. Murphy and she is scheduling out in November. How can I continue to watch my son get worse every minute until then?!?!?!

 

Have you already gone through the patient intake on the phone with Muphy's office? When I first called in June they told me they weres scheduling out to the end of September, but after they did my phone intake, I got a call a week later getting an a ppt for the following week - it was 3 weeks from initial call to appointment.

[momaine]

My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical is going on. BUT... I'm crazy, throat culture is negative, and until a PANDAS expert tells her what to do she refuses to change anything. I'm on a list for Dr. Murphy and she is scheduling out in November. How can I continue to watch my son get worse every minute until then?!?!?!

Why not call Dr. K or Dr. B and see who can get you in the soonest? (or one of the othe doctors willing to treat PANDAS)

Angela

[trubiano]

You can get a false negative culture while on antibiotics. If it were me, I'd call specialists and try to get in quicker and I would call around to ped's offices, speak to the nurses, be open and honest and ask them to talk to the doctor on staff and if it's worth bringing your son there. You can go to a different ped whenever you want. You do not need to have all files transfered at first. You can also go to urgent care and see if they will give your son a different med. Don't wait until November. Have you called Murphy's office and told them what's going on. Maybe they can bump you up.Call them.

 

Also, scan everything else...has anyone else around him been sick, does he have allergies that are kicking up? If you haven't tried Ibuprofen, give him some. See if that takes the edge off for now and gives him some relief.

 

 

Thank you Vickie! I have been giving him motrin and it does calm the tics so he can at least eat or watch tv. I'm afraid to go to urgent care because I tried it once and they said his case was more complex then what they could handle and I should take him to the children's hospital er, which I just might do! Maybe someone there can help!

[trubiano]

My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical is going on. BUT... I'm crazy, throat culture is negative, and until a PANDAS expert tells her what to do she refuses to change anything. I'm on a list for Dr. Murphy and she is scheduling out in November. How can I continue to watch my son get worse every minute until then?!?!?!

 

Have you already gone through the patient intake on the phone with Muphy's office? When I first called in June they told me they weres scheduling out to the end of September, but after they did my phone intake, I got a call a week later getting an a ppt for the following week - it was 3 weeks from initial call to appointment.

I have done the patient intake and we are just waiting for a reply. That makes me feel SO much better!

[trubiano]

My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical is going on. BUT... I'm crazy, throat culture is negative, and until a PANDAS expert tells her what to do she refuses to change anything. I'm on a list for Dr. Murphy and she is scheduling out in November. How can I continue to watch my son get worse every minute until then?!?!?!

Why not call Dr. K or Dr. B and see who can get you in the soonest? (or one of the othe doctors willing to treat PANDAS)

Angela

Angela, can you tell me exactly who Dr. K and Dr. B are? I'm trying to get their contact info off the docotor list. Thank you!!

[Priscilla]

be careful with getting to hooked on ibuprofen, long term can cause liver damage. I hope you get help soon. I have been journaling all behaviors, visits treatments... It may help your case if you need to see a new Dr.

[thereishope]

Dr. Kovacevic

GRANT SQUARE MEDICAL CENTER

333 Chestnut, Suite #103

HINSDALE, IL 60521

Phone Numbers

Telephone: 630.986 1010

Fax: 630.986 1015

www.webpediatrics.com (phone consults are possible)

 

 

 

Dr. Beth Latimer,

6420 Rockledge Dr # 2500

Bethesda, MD 20817-7837

Phone: (301) 530-9200

 

 

Denis Bouboulis

17 Old Kings Hwy South

Darien, CT 06820

Phone: (203) 655-9904

Fax: (203) 655-8948

Edited August 7, 2010 by Vickie

[tpotter]

But, will the ped listen to him with just a phone consult. Also, if you use Dr. T., realize that a lot of people have had trouble with him following up. Also, Dr. K. does phone consults. I would use him over Dr. T. He will then be able to consult with your ped, and if you need him to actually order anything, you can go see him in person.

[trubiano]

But, will the ped listen to him with just a phone consult. Also, if you use Dr. T., realize that a lot of people have had trouble with him following up. Also, Dr. K. does phone consults. I would use him over Dr. T. He will then be able to consult with your ped, and if you need him to actually order anything, you can go see him in person.

 

 

Thank you for that info on Dr. T's follow up. My PED basically said he needs more help than she can give and seemed angry I haven't followed her views on putting him on all the drugs the neuro wanted to give. Whatever!! I got Augmentin for 10 days and if the tic starts to go away I'm bringing him back to see her to let her see for herself how the antibiotic helps without other meds. Fingers crossed. She did agree to follow whatever treatment a "PANDAS expert" gave, so I'll cal MOnday and try and get a phone consult with Dr. K. Thank you!!!

Edited August 7, 2010 by trubiano