Second time doing steroids-no relief this time

[FallingApart]

I have been absent from the board for a bit because things are very bad over here. We are trying hard to get PEX scheduled with Dr. L for DD but are having a hard time with the scheduling. DD is an absolute mess and seems to be getting worse every day. We went out to see Dr. L last week and she prescribed steroids while we are waiting to get in for PEX. This is our second time on steroids and the results are night and day different.

 

DD was on the 5 day dose last time and showed improvement immediately. Those 5 days were amazing. We are now on day 7 of our 30 day RX and we have seen no improvement at all and instead have seen our symptoms increase a ton! She is on 5ml 2x/day for 7 days and then will go to 4ml 2x/day etc. I'm pretty sure she was on the 5ml dose this past summer for the 5 days when she improved immediately. She weighs 42 pounds.

 

Does anyone have thoughs as to why it would work one time and not the other?

[sf_mom]

I can't say why the steroids aren't helping this time but I was wondering about dose of daily antibiotic and which type? Our son is exactly 4 weeks post IVIG and complained of a sore throat about a week and half ago so we took him to urgent care for rapid/culture and both were negative. We started to see a flair in his symptoms so as ADDED protection we upped his antibiotic and symptoms went away within 48 hours! I'm fairly positive it the higher dose of antibiotic that is helping. I plan to lower the dose again in a couple of days to see if there is a flair of symptoms again. You might try upping the antibiotic in addition too the steroid temporarily to see if it helps.

 

So sorry to here things have been so difficult for you lately.

 

-Wendy

[EAMom]

Yes remind us of what abs (and dose) you are on. Worried dad's son is finally responding (after multiple IVIG's and 2 years of PANDAS) to a high "Saving Sammy" dose of Augmentin. A good dose of Azith. is another possibility if you haven't tried that.

[peglem]

My daughter responded well to a five day course of prednisone, but got ill immediately afterwards. That makes me wonder if suppressing the immune response allows pathogens to gain strength during the suppression. I really don't know enough about exactly how prednisone works, but I'm hesitant to try again unless I'm sure she doesn't have something (strep) brewing at the time. On the other hand, would love to have another 5 days of symptom suppression.

[thereishope]

Each episode is different so it may be a different response time for each episode as well. How close did the episodes occur? That could affect how long it takes to see any improvement.

[Kayanne]

We didn't see a lot of improvement until the end of week 4 with our dd6's steroid treatment. At the end the improvements were so dramatic--she went from 70-75% improved to 97-98% improved in a matter of three days!--So hang in there, if you are not seeing any real adverse reactions from the prednisone, then I would continue until the end.

 

She is on 5ml 2x/day for 7 days and then will go to 4ml 2x/day etc

If you have 5mg/5ml then you are only giving your dd 5mg 2X/day--which seems very low for a first week dose. If you have 5mg/ml, then you are giving 25mg 2X/day--which seems to be in line with Dr. Latimer's prescription for our dd.

 

There are several different concentrations of liquid prednisone/prednisolone. Look on the pharmacy label or the side of the bottle. Our prescription from Dr. Latimer called for 5mg/ml of prednisone. After the third pharmacy, we were given 5mg/5ml of prednisolone. We were aware of the concentration change, so we just adjusted the mls accordingly. However, we didn't know that we were given prednisolone instead of prednisone.

 

I have asked four doctors, including Dr. Latimer, and they all said that they are equally effective, and my google searches have come up with the same information, but my gut is telling me that the concentrated liquid Prednisone Intensol 5mg/ml that we used as a refill (because the pharmacy ordered the correct prescription for us)---at the very end with only three doses left, made a huge difference--that is why we requested to extend the prednisone.

 

Does anyone have thoughts as to why it would work one time and not the other?

 

What is Dr. K's dosing for the 5 day steroid burst? If his is significantly higher?...then that might be what is happening...are you using the exact same medication as before?

 

~Karen

[T_Mom]

We have only ever used the pill form of prednisone--

 

if steroids were successful once for your child, I would be certain to compare the dosage from the first to the second time--

 

I believe that Dr. K had told us it could take up to three weeks to see an effect ("sudden and obvious"--if Ps) -- but that may be my faulty memory, you would have to ask him directly to be sure. Hope things turn around very soon--

[FallingApart]

Hmm, well, now I don't actually know what the dose is. I just looked at the bottle and it says 15 MG/5 ML. We are supposed to do 5 ml 2 x/day for 7 days, then 4 ml for 7 days, etc. I don't actually know what the dosage was the first time around. Our ped prescribed the steroids the first time and this time the rx was written by Dr. latimer. But our ped does has been involved in all the Latimer proceedings and is aware of the dosage.

 

We are currently on 200 ml of Zithromax daily.

[T_Mom]

Hmm, well, now I don't actually know what the dose is. I just looked at the bottle and it says 15 MG/5 ML. We are supposed to do 5 ml 2 x/day for 7 days, then 4 ml for 7 days, etc. I don't actually know what the dosage was the first time around. Our ped prescribed the steroids the first time and this time the rx was written by Dr. latimer. But our ped does has been involved in all the Latimer proceedings and is aware of the dosage.

 

We are currently on 200 ml of Zithromax daily.

 

If you want to track the prescription strength a call to the pharmacy may do it--and a short chat with the pharmacist on duty to compare the prescriptions this time and last. I hope things get better soon--

[Kayanne]

Hmm, well, now I don't actually know what the dose is. I just looked at the bottle and it says 15 MG/5 ML. We are supposed to do 5 ml 2 x/day for 7 days, then 4 ml for 7 days, etc. I don't actually know what the dosage was the first time around. Our ped prescribed the steroids the first time and this time the rx was written by Dr. latimer. But our ped does has been involved in all the Latimer proceedings and is aware of the dosage.

 

We are currently on 200 ml of Zithromax daily.

 

15mg/5ml = 3mg/1ml

 

right now you are at 15mg 2x/day

 

next week it will be 12mg 2x/day

 

When Dr. L wrote our script, it was for 5mg/1ml---a little more concentrated than what you are currently giving--I would double check with the pharmacy that they got the concentration correct, and if you are taking prednisone or prednisonlone...although a quick google can tell you that.

 

What is your daughter's age and weight?

 

My dd6 was given 10mg 2x/day for the first week, 5mg 2X/day for the second week, and 5mg/day for weeks 3 & 4--she was about 42lbs at the time.

[T_Mom]

It seems that if the first steroid burst you did was the "5 day" was that with Dr K or according to his protocol I assume. I would guess this may have been higher than now--but you would need to check, and then compare the results.

 

Personally, I think Dr K has the right idea with a strong 5 day--and would want to go to his recommended dosage per weight of the child at some point in the steroid burst, and if your doctor wants you to taper as well all the more better in our case.

I really think the strength of the first dose compared to what you are on now is worth checking into--unless things turn around right away.

[coco]

My daughter was on prednisolone for her 5-day burst, and I believe it was 1 and 1/4 teaspoons, she weighed 52 lbs. We saw an immediate response after day 1. However, after 4-5 days following the completion of the burst she began to backslide. We were able to get another script for the following 3 weeks until we did ivig...it was only merciful...and we were all crazy by then.

 

However, it took a good 6-7 days to see the same type of change in her that we got the first time we did it. I don't know why, but it scared us because it did not seem to be working as it first did. Additionally, both times it never cleared everything up...some things were very obvious, but others symptoms still persisted.

 

We were on 250 mgs of Augmentin at the time until we got ivig. I hope this helps. Keep hanging in there...

 

coco