Dr K consult went well!

[bgbarnes]

The phone consult with Dr K went well.....Wants us to do a steroid burst before we move towards IVIG. I have to admit I am scared to DEATH of putting my ds on a steroid burst- I know it can have an opposite effect on PANDAS kids but what if it doesn't- dear God help us ALL!!!!! Time is of the essence because he would like to do IVIG and give it time to do it's job before school starts..... if he responds positively to the steroid burst. What type of results is he looking for?

Brandy

[Megs_Mom]

Our daughter just calmed down. I know some don't see this for a while, but within a day of the burst of prednisone, she was doing small motor skills without frustration, was calm, lost about 80% of the OCD, wasn't crying, no terror, was eating fine, pupils back to normal, lost the grey skin tone, no panic, could go to camp without worry (before she was hanging on me for dear life), riding her bike, no reassurance questions, etc. It came right back about 24 hours after our last dose (we only had 5 days). It was a decisive moment for us. By the way, we were very resistant to steroids too, but we got "lucky"with a case of Poison Ivy that swelled her eyes closed. Maybe find yourself a patch

[saidie10]

Our daughter just calmed down. I know some don't see this for a while, but within a day of the burst of prednisone, she was doing small motor skills without frustration, was calm, lost about 80% of the OCD, wasn't crying, no terror, was eating fine, pupils back to normal, lost the grey skin tone, no panic, could go to camp without worry (before she was hanging on me for dear life), riding her bike, no reassurance questions, etc. It came right back about 24 hours after our last dose (we only had 5 days). It was a decisive moment for us. By the way, we were very resistant to steroids too, but we got "lucky"with a case of Poison Ivy that swelled her eyes closed. Maybe find yourself a patch

 

Just making sure I understand what you mean by "decisive moment for us"? Is that because it was obvious that the steriod burst worked to help with the PANDAS symptoms thus indicating for sure that it was indeed PANDAS and that IVIG would help with recovery? Just trying to understand all of this!?!?!?

 

Brandy - so glad your appt went well. Keep my updated on the appt with the pediatrician! If I hear from the immunologist in San Antonio I will let you know!

[Megs_Mom]

Our daughter just calmed down. I know some don't see this for a while, but within a day of the burst of prednisone, she was doing small motor skills without frustration, was calm, lost about 80% of the OCD, wasn't crying, no terror, was eating fine, pupils back to normal, lost the grey skin tone, no panic, could go to camp without worry (before she was hanging on me for dear life), riding her bike, no reassurance questions, etc. It came right back about 24 hours after our last dose (we only had 5 days). It was a decisive moment for us. By the way, we were very resistant to steroids too, but we got "lucky"with a case of Poison Ivy that swelled her eyes closed. Maybe find yourself a patch

 

Just making sure I understand what you mean by "decisive moment for us"? Is that because it was obvious that the steriod burst worked to help with the PANDAS symptoms thus indicating for sure that it was indeed PANDAS and that IVIG would help with recovery? Just trying to understand all of this!?!?!?

 

Brandy - so glad your appt went well. Keep my updated on the appt with the pediatrician! If I hear from the immunologist in San Antonio I will let you know!

 

We were told so many times that she did not have PANDAS. We were at the height of our third major episode, and were at a loss. We were just starting to consider PANDAS again, and trying to figure out who to go to. We already had an appt with Dr. L for a month later. I had heard about the steriod burst, but could not imagine "experimenting" with her and steroids to see if she had PANDAS (I did not understand the treatment for PANDAS at the time either). It was the moment that drove us to Dr. L, convinced us to do the Cunningham test, and the moment I always go back to as the second that I knew for sure.

 

After that, it was just a matter of finding enough other evidence to treat her, waiting for the appts, and deciding on the treatment plan. Meg has responded really well to abx, and any blips are so far minor, so we have not moved to IVIG. It remains on the table. Right now, she is about 99.5%. I'm really picky , so I'm not sure if I'd ever say 100%, but I can't imagine a kid being happier with themselves than she is now.

[Tenacity]

Brandy,

 

I wouldn't worry too much about precisely what to expect. Keep an open mind. And watch, compare, keep a record... I'm no expert, but from what I've gleaned so far from my own experience and from others' is that many factors (not all of them fully understood!), including age, size, type and severity of illness, how long the child has had the illness, etc. may play a role in how kids respond to the steroid burst.

 

I'm new enough to the forum, so that I'm not yet familiar with your story and the stories of the other parents who have responded to your question so far. I'm guessing my child might be older. My child is 11, and was very sick, but not correctly diagnosed, for a long time, then had a terrible reaction to a flu shot, developed violent movement disorders, lost the ability to read/write/draw, and became mute. I've read many stories of fast, dramatic transformations following steroid administration, and I believe them and am inspired by them -- but it appears, in most instances, these are patients younger than my son, who are fortunate enough to get a correct diagnosis earlier on in the course of their illnesses. Nevertheless, my son did have a "positive" response to his steroid burst, even though it was really just enough to whet our appetites for more, and not a complete "conversion."

 

I do not offer my son's steroid experience as "typical," by any means, but as one example in the spectrum of possible meaningful responses. In a nutshell, @ three weeks post-steroid-burst, he was nasty-acting, felt hideous, nauseous, could not eat, and could not even get out of bed. Then this passed, and he began to look and act more healthy than he had in months, though he remained mute, and at about 5-6 weeks post-steroid he drew a couple crude stick figures, after 5 months of no drawing at all (and he loves drawing, in fact he was unusually good at it before he fell ill). Then the positive effects disappeared.

 

Each child is unique. But changes -- of any kind -- can be important diagnostic clues. (Wish all the doctors understood this!...)

 

Tenacity

[bgbarnes]

Brandy,

 

I wouldn't worry too much about precisely what to expect. Keep an open mind. And watch, compare, keep a record... I'm no expert, but from what I've gleaned so far from my own experience and from others' is that many factors (not all of them fully understood!), including age, size, type and severity of illness, how long the child has had the illness, etc. may play a role in how kids respond to the steroid burst.

 

I'm new enough to the forum, so that I'm not yet familiar with your story and the stories of the other parents who have responded to your question so far. I'm guessing my child might be older. My child is 11, and was very sick, but not correctly diagnosed, for a long time, then had a terrible reaction to a flu shot, developed violent movement disorders, lost the ability to read/write/draw, and became mute. I've read many stories of fast, dramatic transformations following steroid administration, and I believe them and am inspired by them -- but it appears, in most instances, these are patients younger than my son, who are fortunate enough to get a correct diagnosis earlier on in the course of their illnesses. Nevertheless, my son did have a "positive" response to his steroid burst, even though it was really just enough to whet our appetites for more, and not a complete "conversion."

 

I do not offer my son's steroid experience as "typical," by any means, but as one example in the spectrum of possible meaningful responses. In a nutshell, @ three weeks post-steroid-burst, he was nasty-acting, felt hideous, nauseous, could not eat, and could not even get out of bed. Then this passed, and he began to look and act more healthy than he had in months, though he remained mute, and at about 5-6 weeks post-steroid he drew a couple crude stick figures, after 5 months of no drawing at all (and he loves drawing, in fact he was unusually good at it before he fell ill). Then the positive effects disappeared.

 

Each child is unique. But changes -- of any kind -- can be important diagnostic clues. (Wish all the doctors understood this!...)

 

Tenacity

WOW! Tenacity I can't even imagine- no my son is not as severe as your child and he is younger- he just turned 8. I am very hopeful we will be able to improve his percentage recovery by the time school starts. I am also very impatient- I want recovery NOW! as we all do. We have been probably been dealing with this for more than 5 years and only finally got a diagnosis so I am happy to finally have a diagnosis and a plan of action. Thanks for the input!

Brandy

[norcalmom]

Hi Brandy,

We have a conference call with Dr K in 2 weeks. I am wondering what he presribes for a burst. I have a scrip from local doc I ahve not filled for 15mg prednisone (?? times per day don't recall...I think 2 or 3) for 5 days. I was thinking of doing it before my phone conference with him ..becasue if we do IVIG we too want to do it in summer and still have a few weeks before school starts.

 

I don't want to do this 5 day burst if he is going to tell me ds has to do one that is his dosage.

 

Thanks - glad to hear you had a good confernce - any words of wisdom for us?

 

Kerry

[bgbarnes]

Hi Brandy,

We have a conference call with Dr K in 2 weeks. I am wondering what he presribes for a burst. I have a scrip from local doc I ahve not filled for 15mg prednisone (?? times per day don't recall...I think 2 or 3) for 5 days. I was thinking of doing it before my phone conference with him ..becasue if we do IVIG we too want to do it in summer and still have a few weeks before school starts.

 

I don't want to do this 5 day burst if he is going to tell me ds has to do one that is his dosage.

 

Thanks - glad to hear you had a good confernce - any words of wisdom for us?

 

Kerry

MY son is 70 lbs and we are doing 30 mg 1x a day ( in the am) for 5 days. 1mg per kg of weight. Hope that helps. I would do it before you talk to him and track the changes and your observations from days 6-21. He wants the report on day 21. It will save you a couple of weeks and get you to IVIG sooner!

I had every possible blood test run, a detailed history spreadsheet and written...I even sent a video of my son and his rituals- don't know if he saw it but he said he did not need anything else from me- just the steroid burst. Have you done the circulating immune complex yet?

 

Good luck!

Brandy

[gremlin44]

I just had an in person consult with him today. Already had a PANDAS diagnosis for my son, wanted to see if he would be a good candidate for IVIG.

 

He told me that parents can decline the steroid burst. Because I want to get this done before school and give my son a few weeks to recover/"turn back the pages" before he starts 2nd grade, I did decline. IVIG is scheduled for Aug 6/7. He was not upset or pushy about the steroid burst in any way.

[bgbarnes]

I just had an in person consult with him today. Already had a PANDAS diagnosis for my son, wanted to see if he would be a good candidate for IVIG.

 

He told me that parents can decline the steroid burst. Because I want to get this done before school and give my son a few weeks to recover/"turn back the pages" before he starts 2nd grade, I did decline. IVIG is scheduled for Aug 6/7. He was not upset or pushy about the steroid burst in any way.

Wow-Good to know!!! I would love to avoid it if possible and gain the time to do IVIG sooner. Definitely a consideration- now do we start it today or not! I am trying to get our immunologist to do the IVIG here with Dr K protocol- so we shall see!

Thanks!

Brandy

[kimballot]

Brandy - glad to hear things went well with Dr. K - So happy that you are moving forward!

 

We saw improvement in handwriting, bedtime separation, idependence in homework, and decrease in rages. Overall, a happier kid.

 

We have not done IVIG yet, but many families are reporting steroid bursts just before and after IVIG to decrease symptoms. Could you start the steroids and then do IVIG right near the end of the burst- or could you shorten the burst (taper more quickly) if you get IVIG approval? Perhaps others have experience with this or a call into Dr.K would be good to check.

 

Please keep us posted!

[TessaKrista]

Can any pediatrician order the cunningham test?

[kimballot]

Can any pediatrician order the cunningham test?

 

 

The Cunningham test is not (yet) an FDA approved test for PANDAS, so it is not done with a doctor order and it is not covered by insurance. Parents on this forum and other forums have been supportive of Dr. Cunningham's efforts and have supported a PepsiRefresh grant that we just won (you may have read about that) to help fund Dr. Cunningham's work.

 

Dr. Cunningham is taking subjects into her research study, but she asks that you reimburse the cost of the blood test (I believe it is $400). Basically, the lab sends you a kit and you find a blood lab to draw the blood - then they send it off with an ice pack and you wait very patiently for a few weeks until the results come in.

 

The Cunningham test looks at whether the child's blood serum activates neurochemicals (Cam Kinase II) in brain cells. Kids with PANDAS have a higher level of activation than kids without PANDAS.

 

For more info check out Pandas resource network at http://www.pandasresourcenetwork.com/research-programs.html

[bgbarnes]

Brandy - glad to hear things went well with Dr. K - So happy that you are moving forward!

 

We saw improvement in handwriting, bedtime separation, idependence in homework, and decrease in rages. Overall, a happier kid.

 

We have not done IVIG yet, but many families are reporting steroid bursts just before and after IVIG to decrease symptoms. Could you start the steroids and then do IVIG right near the end of the burst- or could you shorten the burst (taper more quickly) if you get IVIG approval? Perhaps others have experience with this or a call into Dr.K would be good to check.

 

Please keep us posted!

Thanks kimballot!

Right now I am trying to get our local immunologist who does IVIG to adapt to Dr K's protocol- 1.5mg instead of his standard 750mg- Dr K agreed to talk to him. If I can do it locally and he is in network ( I have United Healthcare) it should be so much easier!!! I am not even sure I will try to get pre-approval since UHC covers PANDAS for IVIG. I would rather do it with the assumption that they will pay for it since it is in their paperwork and fight them if they end up denying it- need to study my plan.

Hoping for good results!!!

Brandy

[norcalmom]

All great info. Thank you!

No we have not doen the ciruclating (whatever) test yet. Bummer. Didn't know to ask immunologist for that one. Does Dr K always require that or is it something about your ds case that makes him recommend that one?