Steroid Response

[dcmom]

DD age 9 is being treated for pandas. Her ocd has been getting worse since a bout with H1N1 in November. She did a steroid burst in December- and she did beautifully. It took about 2 weeks, but she was back to herself 100% (eating, sleeping, no anxiety, happy, etc). Then two weeks later she came down with a cold, and pandas came roaring back. It is probably worse now than ever. She has been on the steroid burst for a little over 2 weeks- with no improvement.

 

Any thoughts? Help!

[dut]

hi - what dose is your dd on and how much does she weigh? Dr T suggested we use the medrol pack next time round, don't know if that would make a difference. He also mentioned IV steroids to us.. said that they can be more effective.. but the conversation went no further than that so don't know any more than that about them.. just thought I'd mention it...

[Kayanne]

I'm so sorry you are going through this....

 

Is it possible to continue the steroid...you know we didn't see any great results until the end of week 4....on the "taper dose" of 5mg/day.

 

What supplements are you giving to your daughters? Perhaps, you might consider insitol and or a supplement to increase serotonin...

 

Equally important are good quality multivitamins....the B vitamins in particular.

[sf_mom]

What is Dr. Latimer's perspective? Honestly, if the steroids and antibiotics aren't helping its time to start thinking of other more aggressive options. BUT, I do come from the perspective of attacking the 'BUG' hard.

 

-Wendy

[dcmom]

Thanks everyone- this stinks! I am still holding out a bit of hope for some relief in the next couple of days....Last time was so great!

 

SF Mom- I am ready to take her in tomorrow for plasma pheresis (it was a miracle for her sister)- but we have some insurance issues. They still haven't paid- somewhat of a post denial pending medical proof.... I need to get that resolved, and then hope for them to pre approve another.

 

But- I can't take this much longer...

[EAMom]

Would it be easier to get coverage for IVIG than PEX? That would be another option if insurance doesn't pan out.

 

How is her sister that got plasmapheresis doing?

[thereishope]

I'm sorry you're going through this. Are you sure it's just a cold? What are her symptoms? What antibiotic is she on?

[FallingApart]

dcmom, this is exactly what happened with us with our DD. Our first steroid burst (5 days) was a miracle and the second (4 weeks taper down) had no effect. We went to PEX 3/4 way through the failed second burst. Then PEX didn't work for us either. It was a very dark time for us. We don't have any explanation for why the steroids didn't work the second time. I would love to know why they didn't work. DD has a cold right now and the ped wants to have her do 5 days of them if she tanks with this exposure. DH and I are pretty nervous to try any steroids again.

 

Will your insurance approve IVIG? If so, I think you know, this is the route that is working for us. I am all too familiar with how bad this is when the steroids don't work. In fact, we had what seemed to be "roid rage" from the prolonged use of them on top of everything. It was horrible!!!

 

Dr. L told us to give it time, but time didn't work for us. We did all 4 weeks and saw 0 improvement. I would love to hear if she has additional thoughts when you update her on your situation.

 

Good luck!

[sf_mom]

Geez...... I know your heartache over insurance issues I've got two more that potentially need treatment. I'll say prayer for pre-approval of another plasma pheresis for your family. BUT, don't rule out IVIG, definitely more cost effective but its question of 'HOW MANY' treatments that a child might need driving up the cost.

 

-Wendy

 

 

Thanks everyone- this stinks! I am still holding out a bit of hope for some relief in the next couple of days....Last time was so great!

 

SF Mom- I am ready to take her in tomorrow for plasma pheresis (it was a miracle for her sister)- but we have some insurance issues. They still haven't paid- somewhat of a post denial pending medical proof.... I need to get that resolved, and then hope for them to pre approve another.

 

But- I can't take this much longer...

[dcmom]

The sister who had pheresis is in about 90% remission. It was a miracle for her. Hoping, of course, that she stays that way.

 

Caroline has been on daily zithromax. Plasma pheresis makes sense for us. We live 15 min from Gtown, and it worked for her sister. We are not opposed to IVIG, but would rather do the pheresis because it doesn't include a blood product.

 

If things go south for either of them after pheresis, we will certainly look at ivig.

[thereishope]

Could the cold be indoor allergies? Some have posted that allergies are getting to their kids right now. Dust mites I guess are bad this year. Allergies can definitely cause a fare up in PANDAS symptoms.

[dcmom]

no- the cold is gone. It was a few weeks ago, and she was to the doctor for it to rule out strep, of course. I think she is just so reactive now, that it stirred her immune system up. She is on daily full strength zithromax.

[Debbie1]

My dd12 has had two rounds of steroids. Round 1 - 60mg for 7 days then a taper - was extremely effective and put her into 100% remission for 6 months. Round 2 - 30 mg week 1, 20mg week 2, 10 mg week 3, 10 every other day week 4 - was less effective. We got to about 70% improved by the end of the month, but then the improvement was not sustainable. We tried augmentin, zithromax, and now omnicef and did t&a surgery. She seems to be improving somewhat on the omnicef, but we are not back to 100% and are considering IVIG for her. We have also discussed an antibiotic combo, which does not thrill me, and IV antibiotics with our treating docs as options. We are giving the omnicef a little more time and then will decide our next step.

 

Here are my questions for you:

 

1) Is the steroid you are using the same dose as round one and for the same duration?

2) Did she have a growth spurt that would require a higher dose?

3) Have you done bloodwork to rule out another infection such as lyme, mycoplasma, etc. (dd recently tested positive for lyme, although we are repeating the test to see whether we get the same result and are doing bloodwork this coming week to test for mycoplasma). These other infections can exacerbate symptoms and make them harder to eradicate. By the way, steroids are contraindicated in lyme.

 

Just adding one more thing - when I asked one of our docs why we did not get the same response to round 2 of steroids, I was told there could be many reasons including the strain she was exposed to.

 

I'm sorry you are going through such a hard time. We all understand how difficult it is.

[lyme_mom]

My dd12 has had two rounds of steroids. Round 1 - 60mg for 7 days then a taper - was extremely effective and put her into 100% remission for 6 months. Round 2 - 30 mg week 1, 20mg week 2, 10 mg week 3, 10 every other day week 4 - was less effective. We got to about 70% improved by the end of the month, but then the improvement was not sustainable. We tried augmentin, zithromax, and now omnicef and did t&a surgery. She seems to be improving somewhat on the omnicef, but we are not back to 100% and are considering IVIG for her. We have also discussed an antibiotic combo, which does not thrill me, and IV antibiotics with our treating docs as options. We are giving the omnicef a little more time and then will decide our next step.

 

Here are my questions for you:

 

1) Is the steroid you are using the same dose as round one and for the same duration?

2) Did she have a growth spurt that would require a higher dose?

3) Have you done bloodwork to rule out another infection such as lyme, mycoplasma, etc. (dd recently tested positive for lyme, although we are repeating the test to see whether we get the same result and are doing bloodwork this coming week to test for mycoplasma). These other infections can exacerbate symptoms and make them harder to eradicate. By the way, steroids are contraindicated in lyme.

 

Just adding one more thing - when I asked one of our docs why we did not get the same response to round 2 of steroids, I was told there could be many reasons including the strain she was exposed to.

 

I'm sorry you are going through such a hard time. We all understand how difficult it is.

 

Debbie,

 

If your son had a positive lyme test it was likely not a false positive. Lyme doctors would treat him immediately b/c he has symptoms and they would not run a second test as your doctor is doing. Clearly this doctor does not know enough about Lyme Disease. I would run to the nearest Lyme specialist (see ilads.org). Do not rely on a doctor who does not treat lyme everyday. They can't possibly know all you need to know about how to treat lyme and the coinfections. You need to read Cure Unknown and you will understand why I am so emphatic about this. Lyme is really serious and you want to totally get rid of it as soon as possible. You are right about steroids being bad for lyme. They lower your immune response. Make sure they test for Bartonella b/c my doctor said that it can cause pandas like symptoms and other neurological symptoms too. Also, one lyme specialist told me that ivig on a patient with lyme is like throwing a glass of water in the ocean. You need to get rid of lyme before it can do any good.

 

Lyme Mom

[mom md]

We had the same response with steroids with a great results after his exacerbation in November but 2-3 weeks later we started to see the symptoms resurface. We have been on steroids now since early Dec and are still trying to taper him off. We were almost off and then had to bump them up for the IVIG and now we are tapering again. Hopefully we will be off them in the next couple of weeks.