Not quite sure what to do next...

[lmkmip67]

now what. Some may remember that we canceled my son's last IVIG with Dr. B last week. It wasn't helping after 8 treatments and I just couldn't see doing 9 for nothing. I took the week off from even calling for a follow up just because we needed to not worry about it for a week. So now I am trying to call for a follow up appointment with Dr. B and the office seems to be booked for months. This isn't a judgement on the office or Dr. B at all. I am sure they are just overflowing with patients. I figured we would have to see Dr. B to follow up, but we can't even get in, so I guess we will have to see the PA. I am fine with that if it is a check up or routine follow up, but it seems like we really need to figure a whole new path going forward and just not sure if she will be able to help with that or not. I guess I could make a phone consult appointment, but they want Ian to go in for blood work every few weeks now or they won't refill the script for antibiotics. I can maybe do the blood work here. I switched my insurance a couple of years ago so the IVIG and Dr. B would be covered. But phone consults aren't covered. I realize many pay lots out of pocket for treatment. But I am just a little frustrated that I can't go down and be seen before 3 months. We have only talked to Dr. B during IVIGs for the past 1 1/2 years. I did not realize the office has become so busy or there was a PA now. I do understand it. But feel sort of stuck now. I am waiting for one of the receptionists to call me back with an idea of who I can see when. I feel like I need more than 15 minutes to talk to Dr. B, but paying hundreds for a phone consults won't fit in our budget either. I am willing to drive, but now the wait is as long as it seemed for other docs way back when we started. I so wish someone in Boston treated PANDA. I am sorry this is affecting so many that Dr. B is so busy now. thankful he is there to help them, but there has to be more doctors treating this soon. I am not venting about Dr. B, not at all. i think he is great and very caring. I just the the treatment for this is getting harder, not easier, now that he is getting even busier. I feel like if we could get treatment closer to home it would just be easier to be in contact with a doctor. I guess we will see.

[LaurenK]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

[lmkmip67]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

[LaurenK]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

 

 

Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids.

[lmkmip67]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

 

 

Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids.

 

Not IV steroids, but we have done many rounds of oral steroids. It helps, but then he flairs again after a couple of weeks off. And long term steroid can have negative effects.

[LaurenK]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

 

 

Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids.

 

 

Not IV steroids, but we have done many rounds of oral steroids. It helps, but then he flairs again after a couple of weeks off. And long term steroid can have negative effects.

 

oh no not a taper. We're talking 3-5 grams pulsed over 3-5 days. Essentially STOPS the inflammatory cascade in its nasty little tracks.

[PowPow]

same steroid response seen here

[lmkmip67]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

 

 

Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids.

 

 

Not IV steroids, but we have done many rounds of oral steroids. It helps, but then he flairs again after a couple of weeks off. And long term steroid can have negative effects.

 

oh no not a taper. We're talking 3-5 grams pulsed over 3-5 days. Essentially STOPS the inflammatory cascade in its nasty little tracks.

 

Well, if I can ever talk to Dr. B again I will ask about it. But I am not sure that is a treatment protocol he uses and we have only seen him for PANDAS. That is part of my frustration though, I can't even just ask him a question at this point unless I pay hundreds for a phone consult or wait 3 months. I am going to see if we can get the blood work done here maybe and then try to get in with him when we can, I guess. : /

[lmkmip67]

same steroid response seen here

 

So this high dose IV steroid treatment is suppose to just halt it? Does it come back? I have not heard anything about it.

[colleendonny]

Have you tried Dr. Gellar or.Dr. jenike?

[lmkmip67]

Have you tried Dr. Gellar or.Dr. jenike?

 

No, we haven't. I need the doctor to take insurance, so maybe that is why? I thought someone locally didn't take insurance that was treating, but I forget which one. I also though Dr. Jenike didn't treat children? I haven't researched a whole bunch lately, but please enlighten me if I am wrong.

[LaurenK]

Have you tried Dr. Gellar or.Dr. jenike?

 

No, we haven't. I need the doctor to take insurance, so maybe that is why? I thought someone locally didn't take insurance that was treating, but I forget which one. I also though Dr. Jenike didn't treat children? I haven't researched a whole bunch lately, but please enlighten me if I am wrong.

 

 

yes it comes back. Depends on quick you get illnesses under control. IF you let them go and the cascade starts back up then more steroids are needed. If I catch things quickly I can go years without needing anything. I gave up on PANDAS " specialists" a long time ago. They are so overworked. You see I have extremely severe tics, so I have to go to a neurologist. They basically get the steroid tic connection and that's that.

Edited July 25, 2012 by LaurenK

[lmkmip67]

Have you tried Dr. Gellar or.Dr. jenike?

 

No, we haven't. I need the doctor to take insurance, so maybe that is why? I thought someone locally didn't take insurance that was treating, but I forget which one. I also though Dr. Jenike didn't treat children? I haven't researched a whole bunch lately, but please enlighten me if I am wrong.

 

 

yes it comes back. Depends on quick you get illnesses under control. IF you let them go and the cascade starts back up then more steroids are needed. If I catch things quickly I can go years without needing anything. I gave up on PANDAS " specialists" a long time ago. They are so overworked. You see I have extremely severe tics, so I have to go to a neurologist. They basically get the steroid tic connection and that's that.

 

Ah, ok. It is something I will ask about. I will add it to the list of things I look into. That is good it has helped you! Ian doesn't have many tics currently (antibiotics seem to stop them) but his OCD is still the main issue.

[PowPow]

we saw that oral steroids and pex helped. ALOT. If IVIG helped- it was a long time for us to see any change and it coincided with pex.

We talked to our neuro and they agreed to try it.

 

It did help, physically, my child got much, much better.

 

as far as OCD- I cannot say enough about residential / intensive CBT.

you can PM me for more info, if you want

[tpotter]

I thought that I read there were some places in Boston that treated? Have you checked the updated "doctors who helped" list.

 

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

 

 

I was going to suggest seeing if there is a good DAN doc or integrated MD. Also have you checked for anything else, like lyme, mold, etc (a good integrated LLMD may be able to help you sort through all this.) In addition to Dr. B., we see a DAN, LLMD, neuro, holistic chiropractor, and I have also found that acupuncture works for me (my kids haven't found relief from it, though.) Keep in mind that the immune system is affected, so your child may well be dealing with more than just strep.

 

Good luck.