IVIG and solumedrol outcomes

[Nick12]

My son recently had his first IVIG treatment (July 15&16) and one month later received solumedrol (steroids) as a follow up. We were so hopeful and yet are doing horribly.Still OCD, but now not sleeping, agitated and impulsive on top of everything else.

Has this happened to anyone else? If so, I am wondering how long it took for things to subside. I am also wondering if we may still see any benefit from the IVIG since it has now been 6 weeks and are hoping the side effects from the steroids may be masking any improvement. Feeling so worried and defeated.

[Chemar]

Hi and welcome to the forum

 

I am just bumping your post up so others can respond

[LindaMW]

I see your post made it.

 

I am also bumping your post. Hope someone can give advice.

 

Linda

[JAG10]

Hi Nick12,

 

You can definitely see improvements after 6 weeks. It is not uncommon to see a worsening of symptoms before improving. Dr. K refers to this as "flipping back of pages" like you are seeing the symptoms of the course of the child's illness in reverse like flipping the pages of their story. This can go on for up to 12 weeks. You should checkout his website at www.webpediatrics.com

 

This is a tough journey. Perhaps if you feel comfortable sharing more of your child's story, folks can offer more comfort?

 

Hang in there!

Jill

[T_Anna]

Thanks for the link Jill (Dr.K).

 

Very interesting about the teen onset and how they become home bound definitely what happened to us.

 

T.Anna

DS15

[Nick12]

Thank you for sharing. My son has suffered from PANDAS for five years now. Often we have gone through long stretches of a "remission". Despite being on every antibiotic (augmentin caused even more behaviors) this past year the episodes have been much more severe and debilitating (OCD, panic attacks,) that we finally received IVIG. Although symptoms worsened temporarily, they seemed to be subsiding. However, the solumedrol has made like almost unmanageable. My son rarely sleeps and is so hyper and impulsive when he is awake that I fully regret that part of our treatment.

It was helpful to hear about the "turning back of pages" as I am often seeing OCD behaviors that I haven't seen in ages.

[LNN]

I had two thoughts after reading your posts. First was that your son might've developed a yeast infection sometime during this treatment protocol and perhaps what you're seeing isn't PANDAS but yeast. Yeast infections cause my son to be very hyper, unfocused, impulsive and most definitely increases his OCD. You can do a blood test for candida antibodies but candida isn't the only yeast. So if it came back positive, you'd have a smoking gun but if it came back negative (my son's did), it might not mean there wasn't some other fungal infection. We eventually did a stool test and found Sacc. Boulardis,, which is Brewer's Yeast and is generally a "good" yeast - lots of kids on the forum take it as a helpful supplement. But for whatever reason, Sacc B makes my son very hyper, impulsive and edgy. He's been on diflucan for a week and his behaviors have gone from a 5 to a 0.5

 

The second thought I had is that after my son's one and only HD IVIG, he totally tanked. My son had "classic" Pandas, flares from confirmed strep infections. But we couldn't keep him in remission, so we eventually did IVIG. When he didn't follow the script and instead went thru 10 weeks of he**, both our Pandas docs agreed that some other infection was involved. My son turned out to have lyme, but other infections can also keep PANS brewing - mycoplasma, bartonella, chronic viruses...So if a few weeks from now you're still tied in knots, and yeast doesn't turn out to be the issue, consider exploring other infections. My son has Pandas - is still susceptible to strep infections, but also had a second infection (lyme in his case) that kept things stirred up. For us it wasn't either/or, it was both.

 

Finally, I'll mention methylation as a topic you might want to think about, only because when you're a parent searching for clues, I think it's good to have multiple sticky notes of topics to explore, in the event there's more than one culprit on the loose. Methylation is your body's way of using vitamins, minerals, proteins and amino acids to make all the cogs turn properly, help your body create energy and most importantly for Pandas kids, it's what helps the body turn food into neurotransmitters. Some of us get our kids to 90% and then can't seem to get that last bit back. Finding and treating methylation problems can help the body get past that roadblock that antibiotics alone can't remove.

 

For the immediate sleep issue, you may find melatonin, gaba or valerian root helpful. These calming supplements work best if taken about an hour before you actually want him to be asleep.

[Dedee]

I am so sorry for what you are going through. You say that your son has had PANDAS for 5 years. It would be helpful to know what sort of testing he has had done. My daughter had IVIG twice before we got a diagnosis of Lyme and bartonella. She had only been on single antibiotic therapy. It frequently takes combination antibiotic therapy to see a difference. My daughter was positive for Mycoplasma IgG and IgM and was later diagnosed by an LLMD with Lyme and Bartonella. My first thought for a child who has been on several types of antibiotics and still suffers after several years is that there is a deeper more virulent infection involved than just strep. I would suggest seeing an LLMD for more testing. They are very knowledgable about the use of antibiotics for the treatment of all sorts of infection.

 

Dedee

[Nick12]

Thank you. Other than the strep, his testing also showed an old infection of bartonella. He currently takes Azithromycin and cefdinir or ceflex every day. It seems the steroids are causing him to be "over the top" right now (I never got to go to sleep last night as it took him until 5:30 am to fall asleep and only for 3 hours). So many others post the benefits of the steroids... I was hoping for the same. I am hoping the steroids will run their course and we will still get to see a benefit from the ivig.