steriod burst questions

[amy s]

Hello to all.

 

I am in the pre planning stages regarding doing a steriod burst with dd. As most of you know one of the criteria as to whether or not IVIG will work is if there is

'measurable clinical improvement following steriod burst'. I would like to hear the stories of those who have tried it with their child, including to what lengths they had to go to get their doc to give it a try and also I am concerned about the 'clinical' improvement part of that. Does it need to be medically documented by the personal pediatrician that improvement took place or what?

 

Also, I have concerns that the current medication my dd is on is masking her symptoms of pandas. (She's been recently increased x 2 of both meds she takes). What if the clinical improvement isn't enough due to the medications? She still has meltdowns at school (had to leave early yesterday) and a few times per day having her ocd stuff going on. Hand tremors are still there and hand licking movement is still there, but much less, but most everything has finally calmed down. I admit I am terrified to take her off the medication right now. We have been through ###### and back and are just getting stable. I think her doctors would think I was medically neglecting her if I just decided to wean her off the meds. I mean, it was really bad and either she is just starting to get to a theraputic level or the Pandas is waning in it's natural course, but either way I am terrified to try taking her off them. What did others do? The severity of my dd's case is such that I can't imagine going back to no medication. Yet I HATE these meds. I mean, if the steriod burst works and we trot off to chicago to get ivig, that's great. But what if this ISN'T pandas with my child? I'd be insisting on medication changes that would destabilize her again. But at least then I guess I'd know, right? I'd know that I'd tried everything, right? Are these the things that went through your heads prior to the IVIG and even the steriod burst?

 

 

Thanks for your communications...

 

Regards,

amy s

[Pudgeo]

Hi Amy,

I'm not sure I can answer all your questions...but the meds are a band-aid for the true symptoms. THis is how I always look at it. The meds are not solving the real problem. I did IVIG with my son (only 3 so far) and I'm sure my Dr would have preferred to just put my son on meds instead of the IVIG(much cheaper). Hopefully with the IVIG you can get rid of all the symptoms and not have to medicate!

There was a lot of questions if my son had PANDAS and now they are saying it is an "encepalitis type disorder" either way you look at it the kid has anxiety & OCD he never had before and IVIG works for both conditions!!

I feel IVIG is pretty safe and will hopefully help your daughter enough that you can wean her off meds..

Sarah

[myrose]

Amy, I am in kind of the same boat with you. But in my daughters case...all her symptoms are completely gone. So for me to just think about taking her off from topamax puts a big pit in my stomach!!!! On the other hand I want and need to know if she was diagnosed corrrectly. This Pandas thing scared me now alot. The more new information comes out, the more I wonder about my daughter and the possiblility of having Pandas. I wish we could just all know for sure what the right thing to do is. I am going to pray for now...I am going to pray really hard that whatever I do will turn out to be the very best for my daughter. What else can we do????

I hate the topamax as well, but like you, it got so BAD that I myslef couldn't go on any longer without being able to help her. Its hard to think back through everything even today! Gods speed to you and I will add you to my prayers tonight and ask that you find the guidance you need as well. Please keep me posted.

Oh, if your daughter is still experiencing symptoms while on meds.....maybe they are not working for her so my question would be why to keep her on them? What is she on? She is on two meds??

[lss]

Hi,

 

I just joined this forum and have lots of questions. I was wondering if anyone knows if this Dr. K in Chigaco has had any of his research or work on his PANDA patients published in any of the medical journals or is it soley "lay mens" published. Has anyone on this forum seen him and had results doing either the IVIG or PEX? I have had a difficult time trying to find a doctor in Dallas and am to the point of going anywhere I have to for my son. I also have heard of Dr. Murphy in Florida. Has anyone gone to her?

 

Linda

[Chemar]

Hi again Linda

 

I know nothing about DrK other than that which I have read here,

but do have personal experience with Dr Murphy, as my son was under her care for 6 months in 2000. Although we have a family history of Tourette Syndrome, the dramatic onset of severe symptoms in my son in late 1999 just after his 10th birthday made me suspect some "trigger" and when I learned of the strep connection to tics and OCD etc, I decided to have that tested, even though my son has no history of ever having had strep. My son was not classified as PANDAS but we did stay under Dr Murphy's care as my son bonded with one of her psychiatric interns, who greatly helped him in dealing with the severe interactions of tics and OCD that he was suffering at the time.

 

I honestly cant say where Dr Murphy is now in her protocol for PANDAS treatment as this was 8 years ago, and also because my son was not treated for PANDAS, but for Tourette Syndrome with co-morbid OCD.

Her approach then was to continue him on the antipsychotics and SSRI medications that his diagnosing neurologist had prescribed because of the severity of his tics and debilitating OCD. However, when the side effects from the meds became worse and the benefits remained hardly noticeable, both she and her associate immediately assisted us to safely withdraw him from the meds and provided support and guidance for the alternative route that we wanted to pursue

 

I really liked her as a person and found her very open minded and genuinely caring. As she was associated with a university hospital I also did not feel "fleeced" by the cost of seeing her

 

I did give Dr Murphy's new contact info on another thread ...here it is again:

Tanya Murphy, University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

 

 

 

 

Hi,

 

I just joined this forum and have lots of questions. I was wondering if anyone knows if this Dr. K in Chigaco has had any of his research or work on his PANDA patients published in any of the medical journals or is it soley "lay mens" published. Has anyone on this forum seen him and had results doing either the IVIG or PEX? I have had a difficult time trying to find a doctor in Dallas and am to the point of going anywhere I have to for my son. I also have heard of Dr. Murphy in Florida. Has anyone gone to her?

 

Linda

[galien407]

Hello.. Newbie here. The initial question in this thread doesn't appear to have been answered.. although I'm still figuring out how to negotiate this site. Anyhow, What have people experienced with the steroid burst? We completed our 5 day burst on Sunday, now on day 7 (Mon).. no response. My son is almost 11 y.o.; DNASE of 1920. Dr. K said he might not respond to steroid burst for 3 weeks. Just looking for the responses of other kids and a little reassurance that we still might see something! Thanks!

[Worried_Dad]

Hi, galien407:

 

Per Dr. K, we did a 5-day prednisone burst for our 12-year-old son. Saw improvement almost immediately, but it only lasted about 4-5 days. (Mostly that was because our psychiatrist prescribed a couple of psych meds just before our phone consult with Dr. K that completely put him over the edge.)

 

With the older kids - like your son and ours - I think it's common for the steroid burst and IVIG treatments to take longer to show results and to work more slowly. Hope you do see improvement soon. If the steroid burst helps, then Dr. K has found a high correlation with successful IVIG.

 

Good luck!

 

 

Hello.. Newbie here. The initial question in this thread doesn't appear to have been answered.. although I'm still figuring out how to negotiate this site. Anyhow, What have people experienced with the steroid burst? We completed our 5 day burst on Sunday, now on day 7 (Mon).. no response. My son is almost 11 y.o.; DNASE of 1920. Dr. K said he might not respond to steroid burst for 3 weeks. Just looking for the responses of other kids and a little reassurance that we still might see something! Thanks!

[lss]

The only problem with the steriod burst, is that anytime a person takes prednisone, the condition or ailment is suppressed, not necessarily eleminating the problem.

 

Ls

 

Hi, galien407:

 

Per Dr. K, we did a 5-day prednisone burst for our 12-year-old son. Saw improvement almost immediately, but it only lasted about 4-5 days. (Mostly that was because our psychiatrist prescribed a couple of psych meds just before our phone consult with Dr. K that completely put him over the edge.)

 

With the older kids - like your son and ours - I think it's common for the steroid burst and IVIG treatments to take longer to show results and to work more slowly. Hope you do see improvement soon. If the steroid burst helps, then Dr. K has found a high correlation with successful IVIG.

 

Good luck!

 

 

Hello.. Newbie here. The initial question in this thread doesn't appear to have been answered.. although I'm still figuring out how to negotiate this site. Anyhow, What have people experienced with the steroid burst? We completed our 5 day burst on Sunday, now on day 7 (Mon).. no response. My son is almost 11 y.o.; DNASE of 1920. Dr. K said he might not respond to steroid burst for 3 weeks. Just looking for the responses of other kids and a little reassurance that we still might see something! Thanks!

[Indigo]

We were able to get off all psych meds once we started the clarithromycin. Singulair has helped tremendously, almost to the point of the prednisone, at least for part of the day. She still has "break through" days though where the PANDAS symptoms come through and it's awful. But not any different than how she was on risperdal, which did nothing to help her except slow her down.

[galien407]

Thanks for your encouragement, Worried Dad!! I'm praying for a positive response to the steroid burst so that we can proceed with IVIG.. my son has had this problem for 3 years, and it is time to move on!!!

 

[

[galien407]

Ooops!! One more thing for Worried Dad... Did you do Dr. K's protocol for PANDAS with your son? (2 consecutive days of IVIG.) Because of his age or other factors, did he require more than the two initial transfusions? And what kind of results have you seen? Thanks for your help!

Mary

[Worried_Dad]

Hi, Mary:

 

Yep, Dr. K had our son do the standard 2 days of IVIG, but the amount is directly tied to the child's body weight, so he had a larger quantity than Pat's daughter, who had IVIG on the same 2 days (but is much younger). We've seen definite, unquestionable improvement in almost every area but still have a way to go. Our son's OCD symptoms were very severe, and his age (12) puts him at the upper limit of effectiveness for IVIG. So we pretty much expect everything to take longer.

 

In the last few days, we've hit a bit of a plateau. The OCD has kind of leveled off, with no big improvements for a few days, and his original neuro symptoms (muscle weakness, difficulty walking, tics) have returned. Hadn't seen the weakness and twitching in quite a few months, but that's a classic example of the "flipping the pages backward" phenomenon about which Dr. K forewarned us.

 

So we're still very optimistic, but not yet out of the woods. Our son's mood and personality are much closer to his pre-illness self, but the OCD is still a bit disabling at this point. We're just praying like crazy that the progress continues and we see that magical "conversion" moment. Feels like we've been fighting this forever, and if IVIG doesn't work, I don't know what we'll try next.

 

No matter what, I'm glad we did IVIG. It's definitely helped so far, and it gives us hope. We'll keep y'all posted!

 

 

Ooops!! One more thing for Worried Dad... Did you do Dr. K's protocol for PANDAS with your son? (2 consecutive days of IVIG.) Because of his age or other factors, did he require more than the two initial transfusions? And what kind of results have you seen? Thanks for your help!

Mary

[L Haven]

Help! Amy, where is the citation of ". . .measurable clinical improvement . . . steroid burst." from? We're on our way to Children's to meet with the Immunologist, so this is a bit of an SOS. Anyone know the citation? I don't know if he had a steroid burst after, but I will find out.

 

Lena

[P_Mom]

It is on Dr. K's web-site....www.webpediatrics.com

[sf_mom]

Our son just complete IVIG with Dr. K 12 days ago. He is 5 1/2 and we think he was originally exposed to Scarlet Fever a year and half ago with his first mild presentation one year ago (cough/clearing of throat), 2nd episode started June 24th with a strep infection (mostly tics, mild OCD). My son was only on antibiotics at time of 5 day steroid burst in August. Dr. K had him draw a picture prior to burst and 14 days post burst to determine fine motor skill improvement 'it was dramatic'. We did see a temporary improvement in our son but once the steroids wore off symptoms increase. Currently, we do not notice any OCD behavior and only minor tics 'blowing on the back of his hand and a total of three cough yesterday' when he is tired. He had a complete melt down yesterday when he dropped one of his Leggo Cars and it broke into pieces.... he was tired. So far, we are very hopeful.

 

As for Dr. K being published.... He is in the process of publishing his finding after 10 years of treating/studying along with Mayo and John Hopkins. I he has also been consulting with Susan Swedo regarding the findings. He said it should be out sometime this fall or early next year.

 

I'm sure with whatever Dr. you consult 'Dr. K or Latimer' they have a plan of action regarding current medications.