What would a non response to steroid burst mean?

[MSmom]

Sorry about posting another steroid burst question. I am curious. If my daughter does not eventually respond to the 5 day steroid burst (she is 19 days post burst right now with no response), how will this be interpreted as it relates to IVIG? I mean, is this an indication that she will not respond to IVIG? I know the steroid burst is also a diagnostic tool, so I'm confused about that too. My daughter definitely has PANDAS---no question about it. We and the doctor agree it is a classic case. So could a non-response to the steroid burst be interpreted as an arguement that she doesn't actually have PANDAS? (but she does!)

I know she might possibly still respond at this point, but at day 19 I am getting less hopeful.

Also, I have been told by yet another integrative physician, whom I trust (so that's 2 so far), that IVIG would only help for a while anyway, and then quit helping, and that introducing viruses and other unknowns into the body via IVIG isn't worth the risk, for an effect that will wear off. That is more fuel for my already confused and tired mind. I'm getting a bit discouraged about the whole idea of IVIG, because on this forum I'm seeing less positive and more negative things about IVIG it seems. Or maybe that's just my perception of it. I'm glad to have a place to post these questions. Don't know what I'd do if I didn't.

Pam

[P_Mom]

What were her symptoms and how severe would you say when you gave the burst??

[Fixit]

Sorry about posting another steroid burst question. I am curious. If my daughter does not eventually respond to the 5 day steroid burst (she is 19 days post burst right now with no response), how will this be interpreted as it relates to IVIG? I mean, is this an indication that she will not respond to IVIG? I know the steroid burst is also a diagnostic tool, so I'm confused about that too. My daughter definitely has PANDAS---no question about it. We and the doctor agree it is a classic case. So could a non-response to the steroid burst be interpreted as an arguement that she doesn't actually have PANDAS? (but she does!)

I know she might possibly still respond at this point, but at day 19 I am getting less hopeful.

Also, I have been told by yet another integrative physician, whom I trust (so that's 2 so far), that IVIG would only help for a while anyway, and then quit helping, and that introducing viruses and other unknowns into the body via IVIG isn't worth the risk, for an effect that will wear off. That is more fuel for my already confused and tired mind. I'm getting a bit discouraged about the whole idea of IVIG, because on this forum I'm seeing less positive and more negative things about IVIG it seems. Or maybe that's just my perception of it. I'm glad to have a place to post these questions. Don't know what I'd do if I didn't.

Pam

 

if the burst doens't work....it is less likey the ivig will work..doesn't mean it wont....

but those who do well on the burst may not do we;ll with the ivig

i wonder if those who failed the burst are just more likely to not do it and it messes with the ratios

i wonder if for those who had a delay in burst response aslo have to wait longer for the ivig to kick in..

ie ..if you see response to burst quickly...you see response to ivig more quickly...

 

so you've had 2 of these docs say it won't work?

just playing advocate.....maybe because the reality as we go forward with info....it seems like 2 ivigs are required at minimum.....

again.playing adovcate....just like when you read reviews....more people are likely to make a complaint about a product than write in when the product is great...

that being said...this is not a product..this is childrens' lives...and it would great if all the success stories were to be manditoryly posted

[MSmom]

Her primary symptom is obsessive worry about everythng she has ever said or done. There are many other symptoms (doesn't want me to leave her room at night, nightmares, anxiety, very concerned about cleanliness and order and germs, and other things) but that is the main one. She only does these things during PANDAS attacks. I don't mean normal worry. It is extreme worry that tortures her. She doesn't like to go anywhere or do anything, because when she returns, the worry consumes her. She worries about things she said 5 years ago.

When I gave the burst, they were pretty severe. Not the most severe she's ever had, but still very severe.

Pam

 

What were her symptoms and how severe would you say when you gave the burst??

[saidie10]

Sorry about posting another steroid burst question. I am curious. If my daughter does not eventually respond to the 5 day steroid burst (she is 19 days post burst right now with no response), how will this be interpreted as it relates to IVIG? I mean, is this an indication that she will not respond to IVIG? I know the steroid burst is also a diagnostic tool, so I'm confused about that too. My daughter definitely has PANDAS---no question about it. We and the doctor agree it is a classic case. So could a non-response to the steroid burst be interpreted as an arguement that she doesn't actually have PANDAS? (but she does!)

I know she might possibly still respond at this point, but at day 19 I am getting less hopeful.

Also, I have been told by yet another integrative physician, whom I trust (so that's 2 so far), that IVIG would only help for a while anyway, and then quit helping, and that introducing viruses and other unknowns into the body via IVIG isn't worth the risk, for an effect that will wear off. That is more fuel for my already confused and tired mind. I'm getting a bit discouraged about the whole idea of IVIG, because on this forum I'm seeing less positive and more negative things about IVIG it seems. Or maybe that's just my perception of it. I'm glad to have a place to post these questions. Don't know what I'd do if I didn't.

Pam

 

Sorry you guys are struggling. I wish I had answers for you but I am trying to figure it all out too?! This is all completely confusing to me and I worry more and more each day too that I will not find the right solution for my son. Good luck and don't give up!

[JAG10]

hi Pam

 

First disclaimer; there are many brrrrilliant parents on this forum, several who do or could do this (bio-research stuff) for a living. I'm not one of them, I'm smart enough but most of this microbiology is too advanced for me to analyze with my (lack of) background knowledge.

 

Yes many PANDAS kids have lots of commonalities, at least one major run in with strep being the doozy, but the journeys; medical histories, immune system status, co-infections, symptomology presentation, cognitive status, access to treatment, age of onset, length of illness prior to accurate diagnosis and treatment, elevated titers/not, sudden onset/not, wax and wane/chronic, severity, ect., ect....... any broad statements about PANDAS children and therefore their effective treatment are going to be problematic.

 

My dd10 was taking two psychiatric medications when we did the 5 day burst; Focalin XR and Strattera. She took these meds because I could not send her to school without them. Is your child on any medication? By day 6, my girl was reacting differently to her medication; it was too much for her, making her anxious and jittery, so I started to cut it back each day. Her psych meds made a clear ah-hah response to the burst difficult to interpret. She had a few really great days, but I probably made too many changes to her other medication too fast and things went south and then improved again after her other meds stabilized again. So, she did have a positive response, but it wasn't without hiccups.

 

She is now 6 weeks post ivig and doing better and better each day. I know she is far from out of the woods. She's been healthy the whole 6 weeks. She's off all psych meds for the first time in 4 1/2 years. She physically looks healthier than she has in years; no longer pale, her skin looks healthy, her pupils are not constantly dilated like before; she was chronic and probably developed this over 8 years ago. She looked like a sickly kid, but was never sick, no long hx of strep infections, she's a fantastic distance runner, seemingly healthy except for behaviorally. She didn't fit the "published criteria" for PANDAS, probably bcs she's had it so long and at such a young age.

 

I pray her positive response continues. This has been her entire childhood. My best advice would be to beware of the blanket statements.

[MSmom]

Thanks Fixit. All interesting questions.

Yes, two docs have told me not to do the IVIG. These are integrative physicians I trust very much, but neither are well known PANDAS docs. One is a DAN doctor, a very brilliant man who is very much a PANDAS believer. He thinks that the risk of IVIG is not worth the possible benefit. (But he also doesn't use antibiotics for PANDAS--which in our case I believe has been a mistake. Had my daughter been on prophylactic antibiotics, I think we could have avoided her last episode of, not only PANDAS, but rheumatic fever, which stole her first year of high school last year (which was going so well--straight A's, friends) and has threatened to take away her entire teenage life.) The other doc is a very brilliant integrative medicine doc. He thinks that the IVIG benefit will wear off. Obviously opinions vary, so I have to weigh everything. But it does make my already confused mind much more confused.

Pam

 

 

if the burst doens't work....it is less likey the ivig will work..doesn't mean it wont....

but those who do well on the burst may not do we;ll with the ivig

i wonder if those who failed the burst are just more likely to not do it and it messes with the ratios

i wonder if for those who had a delay in burst response aslo have to wait longer for the ivig to kick in..

ie ..if you see response to burst quickly...you see response to ivig more quickly...

 

so you've had 2 of these docs say it won't work?

just playing advocate.....maybe because the reality as we go forward with info....it seems like 2 ivigs are required at minimum.....

again.playing adovcate....just like when you read reviews....more people are likely to make a complaint about a product than write in when the product is great...

that being said...this is not a product..this is childrens' lives...and it would great if all the success stories were to be manditoryly posted

[MSmom]

Thanks JAG.

My daughter takes Plaquenil---it is a drug that is often prescribed for Lupus. She does not have full blown lupus, but does have some kind of autoimmune connective tissue disease/chronic fatigue health issue, so the rheumatologist she sees put her on Plaquenil. I'm not sure that would interfere with the steroid burst though. She fits all of the criteria for PANDAS, and also had a rheumatic fever type illness 3 times. along with the PANDAS, following strep.

 

It's wonderful to hear a story like your daughter's.

 

I will take your advice and remember to be careful of blanket statements.

Pam

 

hi Pam

 

First disclaimer; there are many brrrrilliant parents on this forum, several who do or could do this (bio-research stuff) for a living. I'm not one of them, I'm smart enough but most of this microbiology is too advanced for me to analyze with my (lack of) background knowledge.

 

Yes many PANDAS kids have lots of commonalities, at least one major run in with strep being the doozy, but the journeys; medical histories, immune system status, co-infections, symptomology presentation, cognitive status, access to treatment, age of onset, length of illness prior to accurate diagnosis and treatment, elevated titers/not, sudden onset/not, wax and wane/chronic, severity, ect., ect....... any broad statements about PANDAS children and therefore their effective treatment are going to be problematic.

 

My dd10 was taking two psychiatric medications when we did the 5 day burst; Focalin XR and Strattera. She took these meds because I could not send her to school without them. Is your child on any medication? By day 6, my girl was reacting differently to her medication; it was too much for her, making her anxious and jittery, so I started to cut it back each day. Her psych meds made a clear ah-hah response to the burst difficult to interpret. She had a few really great days, but I probably made too many changes to her other medication too fast and things went south and then improved again after her other meds stabilized again. So, she did have a positive response, but it wasn't without hiccups.

 

She is now 6 weeks post ivig and doing better and better each day. I know she is far from out of the woods. She's been healthy the whole 6 weeks. She's off all psych meds for the first time in 4 1/2 years. She physically looks healthier than she has in years; no longer pale, her skin looks healthy, her pupils are not constantly dilated like before; she was chronic and probably developed this over 8 years ago. She looked like a sickly kid, but was never sick, no long hx of strep infections, she's a fantastic distance runner, seemingly healthy except for behaviorally. She didn't fit the "published criteria" for PANDAS, probably bcs she's had it so long and at such a young age.

 

I pray her positive response continues. This has been her entire childhood. My best advice would be to beware of the blanket statements.

[MSmom]

Thank you and good luck to you and your son! Keep on persevering.

Pam

 

Sorry you guys are struggling. I wish I had answers for you but I am trying to figure it all out too?! This is all completely confusing to me and I worry more and more each day too that I will not find the right solution for my son. Good luck and don't give up!