Need Doctor in Texas for Second Opinion...synopsis of son included

[saidie10]

Hello everyone. I am looking for any advice on who to bring my son to for a second opinion. We need a doctor in Texas. Below is a synopsis if anyone wants to take the time to read it and offer any advice! Thank you so much for any help you can provide!

 

[Timeline of Coopers tics/behaviors and OCB

Cooper started eye blinking sometime during late summer/early fall of 2008. This eventually went away. We attributed it to allergies or dry eyes.

Cooper then started mouth stretching during late fall/early spring of 2009. This came and went for a period of time and we attributed it to dry lips and or cracked corners of mouth. This would get better and worse for several months. By early spring of 2009, the eye blinking came back. Cooper also began having head, neck, shoulder, legs, arms, finger and trunk tics. Some days were good, some days were worse. Between spring and summer of 2009, his tics waxed and waned and we definitely saw a change in Cooper’s behavior. He was more aggressive, quick to anger and easily frustrated. He would get fixed on something and get very angry and couldn’t let it go. He definitely seemed different than the child we had known for 5 years. He was also having a hard time with his handwriting, difficulty falling asleep and staying asleep. During this period of new tics and behaviors, Cooper had at least 6-8 positive strep infections (testing positive with a rapid throat test in the Doctor’s office). When we asked both Pediatric Neurologists we brought him to because of the behaviors and tics (one in San Antonio in May of 2009 and on in Austin in June of 2009) about whether this could be PANDAS as I had read about it online, and whether these behaviors and tics could be related to his repeated strep infections, they both asked if his behaviors or tics were worse during or immediately after the infection and if they got better with treatment. Honestly it was very difficult to know the timing as his strep infections seemed to be right on top of each other during the same period we were seeing all the new behaviors and tics. At the time we saw both Pediatric Neurologists, they also asked about OCB. We had not seen any behaviors that were obvious or that we could definitively say yes, that is OCB. But, on June 29, 2009, Cooper had a positive strep culture and within that week there was definitely a sudden onset of OCB. It was really bad and it seemed all of sudden that this came out of nowhere. It was bathroom related with the need to wipe over and over and the need to urinate over and over. I called his treating Neurologist and we started him on Zoloft. I had pretty much forgotten about PANDAS at the time since both Neurologists didn’t really see the connection. After the strep on June 29th, he had one more bout of strep in late July of 2009. As of that bout, he had been on the Zoloft for about three weeks. We also had his tonsils and adenoids removed the first part of August, 2009. Since August, his OCB’s seem almost nonexistent, and his tics have progressively gotten better and better and we now only have a few head and face tics along with the occasional trunk tic when he is in a stressful or excited situation. We have also seen an improvement in his behavior. So I ask, is his OCB/anxiety better because of the Zoloft only, or because he has not had any signs of strep; are his tics better because he has not had strep, or because we are just in a good period right now? Cooper has gone from an A student in Math to a C student and he really struggles in that area. Our 5 year old son is drawing better than him so I know he is not where he should be with that as well. Cooper was a very colicy baby along with having many years of allergy problems and chronic coughing as a toddler. Both his Grandfathers suffered from Rheumatic Fever as a child. I truly feel like we absolutely have to rule out strep as being the trigger for all of this because treating him for that is definitely a different treatment than if it is non infection related OCB, tics and behaviors. So where are we now? Really I just want to know if we are doing the right thing or should we be getting a second opinion. His Neurologist ordered the two standard bloodworks; ASO and Anti-DNAse B. This is the first time we have ever done these tests as his positive results for strep last year and the year before were done with throat swabs. We also took him off the Zoloft a week ago to see if the OCB would return and within a week they did so we are putting him back on the Zoloft (25mg) today at the direction of the Neurologist. We don’t have the results of the Anti-DNAse B, but his titer came back at 400. Although she said this is elevated, she said it could take him upwards of 12 months for that number to come down to more normal ranges. It has been 10 months since his last known strep infection. She said we should do bloodwork in another 2-3 months and see where we are at, keep him on the Zoloft and contact her within that time frame if anything rears its ugly head. Does this sound like a good course of action to you or should we be pursuing a second opinion? I have sent this information to both Dr. T, Dr. K and Beth Maloney author of Saving Sammy. They all seem to think this very well could be PANDAS. That being said, are we doing the right thing by sticking with the current Neurologists suggestion or should we be getting a second opinion? We are still waiting for the results of the Anti-DNAase B. Beth did send me a list of doctors in Texas, but we would no idea to choose!

 

Any advice is appreciated!

 

Cindy

[sf_mom]

The persistent cough was probably his first TIC. I think you would be making a hugh mistake by not consulting with a PANDAS expert for a second opinion. Strep could be any where in your child.... sinuses, ears, gut, etc. so a positive culture might not be available and the strep is still present. AND, without antibiotics to protect him the next episode could be that much worse. No offense to your treating Dr. but they just don't seem knowledgeable on how to treat.

 

Our son's ASO was 244, anti-DNAse-B negative.... and he is still PANDAS. Here is some basic information on titers you should be providing to your current Dr. http://www.latitudes.org/forums/index.php?...art=#entry29483

Edited April 9, 2010 by SF Mom

[saidie10]

The persistent cough was probably his first TIC. I think you would be making a hugh mistake by not consulting with a PANDAS expert for a second opinion. Strep could be any where in your child.... sinuses, ears, gut, etc. so a positive culture might not be available and the strep is still present. AND, without antibiotics to protect him the next episode could be that much worse. No offense to your treating Dr. but they just don't seem knowledgeable on how to treat.

 

Our son's ASO was 244, anti-DNAse-B negative.... and he is still PANDAS. Here is some basic information on titers you should be providing to your current Dr. http://www.latitudes.org/forums/index.php?...art=#entry29483

 

Thank you for the response. Was your son strep asymptomatic or did you know he had strep at some point and how long after that strep was his ASO 244?

[3boysmom]

We never knew our son had strep. We can track back to 3 different times since last year when he stayed home with a slight fever but didn't go to the doctor and each time was followed by strange behavior and each time the odd behavior was worse than the time before. We thought that maybe he was stressed from being behind in his school work from the missed school days. After this last time of being sick, we knew it was much more than "stress". This Christmas 2 of the 3 boys were sick for 2 days, but didn't have "Strep-like" symptoms. We never would have connected this to strep if the other son would not have gotten HSP (illness from strep). Because of this....we were able to make the PANDAS connection.

[bgbarnes]

Hello everyone. I am looking for any advice on who to bring my son to for a second opinion. We need a doctor in Texas. Below is a synopsis if anyone wants to take the time to read it and offer any advice! Thank you so much for any help you can provide!

 

[Timeline of Coopers tics/behaviors and OCB

Cooper started eye blinking sometime during late summer/early fall of 2008. This eventually went away. We attributed it to allergies or dry eyes.

Cooper then started mouth stretching during late fall/early spring of 2009. This came and went for a period of time and we attributed it to dry lips and or cracked corners of mouth. This would get better and worse for several months. By early spring of 2009, the eye blinking came back. Cooper also began having head, neck, shoulder, legs, arms, finger and trunk tics. Some days were good, some days were worse. Between spring and summer of 2009, his tics waxed and waned and we definitely saw a change in Cooper’s behavior. He was more aggressive, quick to anger and easily frustrated. He would get fixed on something and get very angry and couldn’t let it go. He definitely seemed different than the child we had known for 5 years. He was also having a hard time with his handwriting, difficulty falling asleep and staying asleep. During this period of new tics and behaviors, Cooper had at least 6-8 positive strep infections (testing positive with a rapid throat test in the Doctor’s office). When we asked both Pediatric Neurologists we brought him to because of the behaviors and tics (one in San Antonio in May of 2009 and on in Austin in June of 2009) about whether this could be PANDAS as I had read about it online, and whether these behaviors and tics could be related to his repeated strep infections, they both asked if his behaviors or tics were worse during or immediately after the infection and if they got better with treatment. Honestly it was very difficult to know the timing as his strep infections seemed to be right on top of each other during the same period we were seeing all the new behaviors and tics. At the time we saw both Pediatric Neurologists, they also asked about OCB. We had not seen any behaviors that were obvious or that we could definitively say yes, that is OCB. But, on June 29, 2009, Cooper had a positive strep culture and within that week there was definitely a sudden onset of OCB. It was really bad and it seemed all of sudden that this came out of nowhere. It was bathroom related with the need to wipe over and over and the need to urinate over and over. I called his treating Neurologist and we started him on Zoloft. I had pretty much forgotten about PANDAS at the time since both Neurologists didn’t really see the connection. After the strep on June 29th, he had one more bout of strep in late July of 2009. As of that bout, he had been on the Zoloft for about three weeks. We also had his tonsils and adenoids removed the first part of August, 2009. Since August, his OCB’s seem almost nonexistent, and his tics have progressively gotten better and better and we now only have a few head and face tics along with the occasional trunk tic when he is in a stressful or excited situation. We have also seen an improvement in his behavior. So I ask, is his OCB/anxiety better because of the Zoloft only, or because he has not had any signs of strep; are his tics better because he has not had strep, or because we are just in a good period right now? Cooper has gone from an A student in Math to a C student and he really struggles in that area. Our 5 year old son is drawing better than him so I know he is not where he should be with that as well. Cooper was a very colicy baby along with having many years of allergy problems and chronic coughing as a toddler. Both his Grandfathers suffered from Rheumatic Fever as a child. I truly feel like we absolutely have to rule out strep as being the trigger for all of this because treating him for that is definitely a different treatment than if it is non infection related OCB, tics and behaviors. So where are we now? Really I just want to know if we are doing the right thing or should we be getting a second opinion. His Neurologist ordered the two standard bloodworks; ASO and Anti-DNAse B. This is the first time we have ever done these tests as his positive results for strep last year and the year before were done with throat swabs. We also took him off the Zoloft a week ago to see if the OCB would return and within a week they did so we are putting him back on the Zoloft (25mg) today at the direction of the Neurologist. We don’t have the results of the Anti-DNAse B, but his titer came back at 400. Although she said this is elevated, she said it could take him upwards of 12 months for that number to come down to more normal ranges. It has been 10 months since his last known strep infection. She said we should do bloodwork in another 2-3 months and see where we are at, keep him on the Zoloft and contact her within that time frame if anything rears its ugly head. Does this sound like a good course of action to you or should we be pursuing a second opinion? I have sent this information to both Dr. T, Dr. K and Beth Maloney author of Saving Sammy. They all seem to think this very well could be PANDAS. That being said, are we doing the right thing by sticking with the current Neurologists suggestion or should we be getting a second opinion? We are still waiting for the results of the Anti-DNAase B. Beth did send me a list of doctors in Texas, but we would no idea to choose!

 

Any advice is appreciated!

 

Cindy

Let me know if you hear of any good Doctors in Texas- we all need to know who we can go to!

Brandy

 

Brandy

Edited April 10, 2010 by bgbarnes

[thereishope]

Welcome.

 

I wanted to pass on some useful threads for you to read through. They may answer some questions you have or lead to new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Also, here is a thread about OCD in children as seen by parents on this forum. Besides his bathroom rituals, getting fixed on things. etc, he very well might have had more OCD than you thought. A lot of parents, in the beginning, don't quite recognize the things their child is doing as OCD.

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

With PANDAS there are a variety of symptoms that may surface. There is a list in the PANDAS Fact Sheet I posted above. A child does not need to have all symptoms to get a diagnosis of PANDAS. I don't know if you've read through those links before, but if you go down the list of symptoms, your son does exhibit some. Then double that with the history of rheumatic fever in the family tree and it leads me to think it's wise to think about a second opinion.

 

Out of curiosity has he had a strep test that tested negative since his last + in July 09?