Second IVIG today. One day "booster" I believe they are calli

[saidie10]

Been a while since I have posted. Life is crazy with two young boys (one with PANDAS, one who might have it) and having a retail business during the holiday season makes for a busy, tired and stressed out Mommy.

 

Sitting at Christus Santa Rosa in San Antonio today while Cooper receives his IVIG. After first two day IVIG in August he slid back for two weeks then had 4-6 really amazing weeks then we had in home exposure to strep from little brother and tics and behaviors reappeared. We are trying a one day IVIG and will spread them out 4-6 weeks apart and just see how things go. I am hoping this will help keep his immune system strong until we get his brothers tonsils out in January. Keeping it out of the house will have to help!

 

Dr. Cunningham is coming to the hospital to work with my sons doctor and his staff in February with regards to PANDAS so I am excited to try and come over and meet her!

 

Feeling blessed today to have a great doctor and his staff is so wonderful. Truly forward outside of the box thinkers which is what we all want, right? Blue Cross Blue Shield of Texas approved 6 months of monthly IVIG if needed. Feeling very thankful for that although 20% out of pocket will still hurt and the deductible starts over in January. Oh well, I will go broke I guess trying to help him and that's just the way it goes!

 

Blessings to all and hope the holidays bring lots of good news, good health and speedy healing...

 

Cindy

[kimballot]

So happy to hear you found a place that is moving forward!! Best wishes!

[Fixit]

 

Blessings to all and hope the holidays bring lots of good news, good health and speedy healing...

 

Cindy

 

Same to you Cindy!!!

[pandasstl]

We consulted w Dr. K this week and he also told us no more than 1 HD IVIG (the 2 day one), only a booster though he didn't say what the dose was (I guess we'll find out after he gets our bloodwork). I am interested in the dose though, what dose are they recommending for your child's "booster".

[Worried_Dad]

Very interesting. I wonder what has changed the PANDAS docs' perspective on this? In summer of 2009, Dr. K strongly recommended that we proceed with 2 more HD IVIG's (full 1.5 g/kg over two days each time) 28 days apart to "knock the PANDAS out" for our ds, who was in absolute crisis at the time. Those were rounds 2 and 3.

 

I've seen several folks post about Dr. K meeting with Dr. Swedo on this topic. Is that what changed his thinking on multiple IVIG's? Confusing, because (as others have pointed out) I believe Dr. S used multiple rounds of IVIG with some of her original SC / PANDAS study participants.

 

Guess we're all blazing new trails through the PANDAS jungle, eh?

 

 

We consulted w Dr. K this week and he also told us no more than 1 HD IVIG (the 2 day one), only a booster though he didn't say what the dose was (I guess we'll find out after he gets our bloodwork). I am interested in the dose though, what dose are they recommending for your child's "booster".

[pandasstl]

Yes, I think it is very new thinking. Dr. K said he met with Swedo last week and discussed the issue. I don't know if it was specific to our son's history or if a different type of case may cause him to prescribe IVIG differently. I hate that about this disorder--but I am thankful we at least have a direction to go in--our son is 60-70% better, that was never going to happen on the psych meds he was on.

[norcalmom]

Does anyone know what Dr S is using in her current study?

[Fixit]

i wonder if he's seeing more cases where 1 isn't enough...but for some reason is leary to do mulitple hd ivigs...so kinda came up with a mid-level concept

[norcalmom]

Can't speculate on seeing more cases where one isn't enough..I'm hoping its because all the docs that are doing slightly different things are sharing information about what is working best for them!

 

Personally I think some kids need more than one, but for some one is enough. But how do you know? Do you wait for a relapse - or just prescribe 3 right off the bat? Is there a benefit to 4 week spacing, or is 12 better? What about ivig in exacerbation vs out of exacerbation? Does recovery look different for those two groups? There are so many ways to think about doing another one and how to know when is the right time for it.

 

We decided to wait...I wanted to retest (cunninghams and immune panel) and to get tested for Lyme and Myco P ,which we didn't do before first ivig. I'm glad we waited. I still see some things improving. But DS wasn't in an exacerbation prior to his ivig, he was in a relatively good place. I am hoping cunningham and other tests come back normal and we can switch his antibiotic, which might be enough to knock that last bit of OCD out.

 

But if his cunningham test comes back still in pandas range, we might consider another ivig . I know its just a study, but the correlations between these antibodies and symptoms is enough proof for me to want to get those antibodies under control.

[Fixit]

Personally I think some kids need more than one, but for some one is enough. But how do you know? Do you wait for a relapse - or just prescribe 3 right off the bat? Is there a benefit to 4 week spacing, or is 12 better? What about ivig in exacerbation vs out of exacerbation? Does recovery look different for those two groups? There are so many ways to think about doing another one and how to know when is the right time for it.

 

 

I completely agree....i hope the docs are as open to all the variables as we would like them to be

[saidie10]

Everyone is still learning for sure and I am so glad we found a doc who is willing to ask for help and seek advice and opinions of others!