Anyone used injectable Steriods?

[Dedee]

As you all probably remember, my daughter is in a major PANDAS flare and absolutely refuses to take any medication by mouth at all. We can occasionally sneak a probiotic in a milkshake or something but nothing on a regular basis or she gets suspicious. She is getting bicillin injections because we can't get her to take antibiotics. I believe she needs steriods because we arent seeing much imporvement after her antibiotic shot one week ago. We got her "OATS" test back yesterday and one of the elevated levels indicated prolonged inflamamation or chronic illness. I know there is no way we can get her to take steriods so I wondered about getting her an injection. Her other elevated levels indicated major yeast overgrowth which is no real surprise to me. We are trying desperately to get probiotics mixed in anything we can (that wont kill the probiotic) and hope she doesn't notice it. If she thinks it taste different at all she refuses. There is no trying to logic with her and explain that she will feel better. My physician says that while her brain is "sick" she is really incapable of understanding that sort of logic. I suppose so, it's just so frustrating because I know she could get better quicker with the help of some good supplements.

 

But for now, I would be happy trying steriods as we have never tried them before and I believe she may see some results. If anyone has any experience with injectable steriods or opinions I would love to have feedback. As always, thanks so much for your support and input.

 

Dedee

[dcmom]

We did solumedrol, IV steroids, at 7 mg/kg x 4 doses over 4 days for both girls this January. Both were at crisis point with pandas. For both it did take them out of crisis, yet has not brought them to 100% (the stomach virus went through all 4 of us, and seemed to cause an increase in pandas, right after treatment- so hard to tell exactly).

 

It was well worth it IMHO- as both girls were debilitated by OCD, anger and depression. Both are now happy much of the day, yet struggling with 2 OCD issues each (which are getting in the way of their lives), but we can actuall function as a family, and enjoy life/time together.

[KeithandElizabeth]

Hi Dedee:

 

I personally think that it is critical for you to rule out an infectious disease before using steroids as a treatment. I do think that steroids can give a short term reprieve, but can suppress the immune system thereby creating a more difficult time in the long term when your child's body needs to fight the infection.

 

Have you ruled out all chronic infections? I think that it is possible that if your child is still symptomatic, there might still be an underlying infection.

 

Elizabeth

[Dedee]

Her strep titers came back elevated, but we haven't gotten the rest of the results (except OATS). Still waiting to rule out others. Those should be back any day now. We are waiting not so patiently.

 

DCMom - When you did the IV steriods, was that at home, or did you do an outpatient sort of thing? I pray we get the rest of our results soon. It's going to be a long week-end......

 

Dedee

[dcmom]

Well, we were with a new doc- who wanted to rule things out, so we did it inpatient with an MRI and VEEG. The steroids were SO well tolerated, and literally took about 20 minutes to infuse the dosage (the did IV pepcid as well- to protect tummy). I do not see why this couldn't be done same day- and if we ever do it again- that is what we will do.

 

A much higher dose 30 mg/kg is done a lot for MS- outpatient, I think.

[dcmom]

I like the IV because although it is high dose- it is a very short term- steroids become most problematic when you are on them long term.

[momofgirls]

Dee Dee,

I understand the need to find relief when your child is struggling but I really think Elizabeth makes good sense in that it is so important to rule out chronic infections before going this route. Others may disagree but I can speak from personal experience in that steroids gave my daughter relief last year this time. We did them 3 months in a row. I thought they helped but soon after finishing the taper symptoms returned and even stronger. Ulitmately 10 months later my daughter was diagnosed with lyme disease, bartonella, and mycoplasm. I wish I would have ruled out underlying infection because it is generally accepted by any doctor treating infections that steroids do long term harm to the underlying disese. We THOUGHT we had ruled out lyme untill running the IGENEX test which was positive. I hate to push everyone down the lyme path but sooo many kids are coming up positive and benefiting from treatment, I think it is worth looking into prior to doing any immune suspressing treatments.

[dabel]

I agree with Elizabeth and Momofgirls. I have given my son steroids several times and saw great relief temporarily. The first few times we just did a five day burst. When I saw him slipping last fall he was put on a 20some day taper. He is now in a really bad place and I wonder if it is not because of this. We have since found out that Lyme,among other infections, is at play here and steroid use can allow it to really take hold. My son is also refusing ANY treatment and it is soooo frustrating!

[Guest pandas16]

I had 30mg/kg when I was 10 years old. I had 900mg over 3 days- no taper. This put me in remission from PANDAS for 10 + years.

 

I was told not to use steroids unless I absolutely needed them. I was told especially not to use the bursts because steroids long term at a low dosage can induce a lot of negative side effects. Feel free to PM me if you have any questions.

Edited February 11, 2011 by pandas16

[smartyjones]

There is no trying to logic with her and explain that she will feel better. My physician says that while her brain is "sick" she is really incapable of understanding that sort of logic. I suppose so, it's just so frustrating because I know she could get better quicker with the help of some good supplements.

Dedee

 

 

dedee -- i know i am veering from what you originally asked. . . are you familiar with the book The Explosive Child? there is a technique of repeating back what the child says to help defuse an explosion. i have found it very helpful for my ds to keep a situation from getting out of hand when he is explosive and incapable of understanding reason. i have also found it helpful in trying to gain insight into where he is coming from.

 

he did have a time that he was having severe classic contamination ocd and refusing to eat. at this time, nothing was working. so i do understand when you are just not able to get anywhere but wanted to mention it to you b/c it may be helpful in trying to figure out some way that you can get meds/etc into her.

 

basically, you just repeat what she says and when it feels right, throw in a "why", "what would be better?". at first, it's best to keep your tone flat but as you do it more, you can be silly, incredulous, questioning. if you said, "i'd really like for you to take x b/c i think it will really help you feel better", she says "no way, i'm not taking that", you "you're not". then whatever she says, you repeat, she "it tastes terrible", you "it tastes terrible". she "i'm never taking it" ; you "never . really? never?" you -- "do you think there's anyway it wouldn't be so bad?" her, "absolutely not" you "absolutely not?" somehow through this see if she will lead you to some solutions.

 

i know it seems like it would be totally annoying but when someone is unreasonable, they don't seem to notice how annoying it is. my ds is only 6 and he seems to feel reassured that i understand where he's coming from when i'm simply repeating what he's said.

 

i'm not sure where you'll get. my ds has said some surprising things when we do this. however, it is most helpful when he's unreasonable and i just need him to stop being unreasonable, not that i need him to do something.