Update from after neurologist appointment

[lmkmip67]

We finally had our appointment at CHildren's today in Waltham with a neurologist. I think it went really well. A little history on Ian, he is 8. He presented as classic PANDAS. But after a year of antibiotics, and 5 IVIGs without much, if any improvement, we are looking in other directions. Lyme tests are all negative. We may look there too, anyway. But this dr appointment was strictly to try and find some other avenue to help him with his OCD. The neurologist was good. He knows all about PANDAS. He doesn't treat it, but then I wasn't there for that. I wouldn't suggest him to someone for treatment of PANDAS. He knew all about Swedo and the studies, even other research they are doing with new discoveries. Anyway, he took lots of time with us, never poo pooed the idea of PANDAS. He did say that we should have seen improvement by now from 5 IVIGs. He thought IVIG a good treatment regime for PANDAS plus other autoimmune issues. SO I felt at least he wasn't going to cut me off, or disagree with us. I felt like he listened. In the end, we are not seeing success with PANDAS treatment and I still feel we need to help my son. So we are going to try a low dose of an SSRI along with this OCD therapy, so at least get him back to baseline. We have another IVIG scheduled, but after that we are going to take a break. I don't know if we will keep him on antibiotics or not. We may take a break from those too, maybe leave him on a couple of months after this next IVIG. Once we have some down time from the IVIG appointments I may check in with a Lyme specialist and just see what they think. I am also considering homeopathy at this point. I can recommend this neurologist if you want a good neurologist. But again I can't say he treats PANDAS as he doesn't. I don't need him to, as we see Dr. B anyway. I do, however, need others involved in my son's care so we can get him over this OCD hump and get him laughing and being a normal 8 year old again. The tics still have not come back, and I hope they will stay at bay.

 

Lisa

[LaurenK]

Have you tried IV steroids or PEX. IVIG doesn't work for everyone maybe?

[moosiebell]

Who is the doctor? Thanks so much, Sharon

[colleendonny]

Strange..... Were you there with three boys today to see Dr. W?

If so I saw you

[EAMom]

We finally had our appointment at CHildren's today in Waltham with a neurologist. I think it went really well. A little history on Ian, he is 8. He presented as classic PANDAS. But after a year of antibiotics, and 5 IVIGs without much, if any improvement, we are looking in other directions. Lyme tests are all negative. We may look there too, anyway. But this dr appointment was strictly to try and find some other avenue to help him with his OCD. The neurologist was good. He knows all about PANDAS. He doesn't treat it, but then I wasn't there for that. I wouldn't suggest him to someone for treatment of PANDAS. He knew all about Swedo and the studies, even other research they are doing with new discoveries. Anyway, he took lots of time with us, never poo pooed the idea of PANDAS. He did say that we should have seen improvement by now from 5 IVIGs. He thought IVIG a good treatment regime for PANDAS plus other autoimmune issues. SO I felt at least he wasn't going to cut me off, or disagree with us. I felt like he listened. In the end, we are not seeing success with PANDAS treatment and I still feel we need to help my son. So we are going to try a low dose of an SSRI along with this OCD therapy, so at least get him back to baseline. We have another IVIG scheduled, but after that we are going to take a break. I don't know if we will keep him on antibiotics or not. We may take a break from those too, maybe leave him on a couple of months after this next IVIG. Once we have some down time from the IVIG appointments I may check in with a Lyme specialist and just see what they think. I am also considering homeopathy at this point. I can recommend this neurologist if you want a good neurologist. But again I can't say he treats PANDAS as he doesn't. I don't need him to, as we see Dr. B anyway. I do, however, need others involved in my son's care so we can get him over this OCD hump and get him laughing and being a normal 8 year old again. The tics still have not come back, and I hope they will stay at bay.

 

Lisa

 

Dr. Swedo (at a conf) said if there is no response to IVIG, test for Lyme. What about other tick borne diseases?

 

I assume it was HD IVIG?

 

Also, have siblings/family members been tested for strep ? Cultures? Rising titers? Are tonsils out? What abs have you done? I just wonder if there is an infection hiding our somewhere....

 

What do you mean "the tics have not come back?". So he had tics, and now they are gone?

Edited February 23, 2012 by EAMom

[lmkmip67]

Yep, we have tested for Lyme and other tic born illness. Nothing. we have done HD IVIG, 5 times. We have tried single and double antibiotics a few times, different combos. He had tics last summer, which have left and not come back since. Maybe a day of one tic once in a great while with illness, but not in over 8 months. The house was all tested for strep, and only I was high, and treated to clear it. that was over a year ago. We have all been tested again since, nothing. He has his tonsils still, but he never seems to get sick or have infections. The random cold once or twice a year. I will admit, all signs seem to point to nothing else. I am not giving up on certain avenues, I just have to get my kid stable for a bit here now. I may look further into Lyme, though the tests (Igenex, done twice) were all negative. Dr. B is quite confused as well, believe me. We have used Zythromax, augmentin, some drug with a B, steroid bursts, etc. I sometimes wonder if we are barking up the wrong tree with the PANDAS ideas...Even though tics and OCD exploded after a strep infection two years ago.....

 

 

We finally had our appointment at CHildren's today in Waltham with a neurologist. I think it went really well. A little history on Ian, he is 8. He presented as classic PANDAS. But after a year of antibiotics, and 5 IVIGs without much, if any improvement, we are looking in other directions. Lyme tests are all negative. We may look there too, anyway. But this dr appointment was strictly to try and find some other avenue to help him with his OCD. The neurologist was good. He knows all about PANDAS. He doesn't treat it, but then I wasn't there for that. I wouldn't suggest him to someone for treatment of PANDAS. He knew all about Swedo and the studies, even other research they are doing with new discoveries. Anyway, he took lots of time with us, never poo pooed the idea of PANDAS. He did say that we should have seen improvement by now from 5 IVIGs. He thought IVIG a good treatment regime for PANDAS plus other autoimmune issues. SO I felt at least he wasn't going to cut me off, or disagree with us. I felt like he listened. In the end, we are not seeing success with PANDAS treatment and I still feel we need to help my son. So we are going to try a low dose of an SSRI along with this OCD therapy, so at least get him back to baseline. We have another IVIG scheduled, but after that we are going to take a break. I don't know if we will keep him on antibiotics or not. We may take a break from those too, maybe leave him on a couple of months after this next IVIG. Once we have some down time from the IVIG appointments I may check in with a Lyme specialist and just see what they think. I am also considering homeopathy at this point. I can recommend this neurologist if you want a good neurologist. But again I can't say he treats PANDAS as he doesn't. I don't need him to, as we see Dr. B anyway. I do, however, need others involved in my son's care so we can get him over this OCD hump and get him laughing and being a normal 8 year old again. The tics still have not come back, and I hope they will stay at bay.

 

Lisa

 

Dr. Swedo (at a conf) said if there is no response to IVIG, test for Lyme. What about other tick borne diseases?

 

I assume it was HD IVIG?

 

Also, have siblings/family members been tested for strep ? Cultures? Rising titers? Are tonsils out? What abs have you done? I just wonder if there is an infection hiding our somewhere....

 

What do you mean "the tics have not come back?". So he had tics, and now they are gone?

[lmkmip67]

Strange..... Were you there with three boys today to see Dr. W?

If so I saw you

 

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m.

[colleendonny]

Strange..... Were you there with three boys today to see Dr. W?

If so I saw you

 

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m.

 

Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you.

[lmkmip67]

Strange..... Were you there with three boys today to see Dr. W?

If so I saw you

 

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m.

 

Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you.

 

Yep, we went in about 10:20 and left likely when you were in. How funny! May I ask what you are seeing Dr. W for? PM me if you want. If I am being nosy, tell me to shhh!

[colleendonny]

Strange..... Were you there with three boys today to see Dr. W?

If so I saw you

 

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m.

 

Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you.

 

Yep, we went in about 10:20 and left likely when you were in. How funny! May I ask what you are seeing Dr. W for? PM me if you want. If I am being nosy, tell me to shhh!

 

I'll PM you