IVIG is great

[tpotter]

OMG....my boys are actually fighting over who's fault something is. BUT, my 15 yo is insisting that it's HIS fault, and my 17 yo is insisting that it is HIS own fault! The funniest part is that my 15 yo has NEVER accepted responsibility for anything being his own fault.

 

My 17 yo is also saying that he is having "a great day," and that he "feels really good." I am just seriously praying that this continues...particularly since last night my 15 yo ended up in the ER, because of pancreatitis.

 

Yes, pancreatitis in a 15 yo. They think it's all the meds he's on, because typically it's caused by gallstones (ruled out), and drinking (and I assure you he's not drinking.) They were going to transfer him to a local hospital for children, but we all agreed we'd just keep on eye on things, and keep hydrating him, because he was feeling slightly better when he left after being hydrated and given pain meds.

 

The 2 abx he's on (azith and doxy), as well as his 2 seizure meds, that he's been on a long time are the suspects. They think that when we added in the doxy, it may have thrown him over the top. The ER doc does NOT think that it was the IVIG, and Dr. B. who called me back agrees. His LLMD also called me back (I called both from the ER, and was very pleasantly surprised they both returned my calls), said to stop the doxy, because it was the last one started (3 weeks ago.)

 

He's still having a fair amount of pain, but he drank a ton of fluid today. But, the positive moments are so wonderful, I had to post (actually my boys both said: "we know you're going to post this", and started laughing

[peglem]

Oh, wow! Thanks for posting, you made my day!! I mean sorry for the pancreatitis, but golly, it still sounds better than PANDAS symptoms!

[Fixit]

OMG....my boys are actually fighting over who's fault something is. BUT, my 15 yo is insisting that it's HIS fault, and my 17 yo is insisting that it is HIS own fault! The funniest part is that my 15 yo has NEVER accepted responsibility for anything being his own fault.

 

My 17 yo is also saying that he is having "a great day," and that he "feels really good." I am just seriously praying that this continues...particularly since last night my 15 yo ended up in the ER, because of pancreatitis.

 

Yes, pancreatitis in a 15 yo. They think it's all the meds he's on, because typically it's caused by gallstones (ruled out), and drinking (and I assure you he's not drinking.) They were going to transfer him to a local hospital for children, but we all agreed we'd just keep on eye on things, and keep hydrating him, because he was feeling slightly better when he left after being hydrated and given pain meds.

 

The 2 abx he's on (azith and doxy), as well as his 2 seizure meds, that he's been on a long time are the suspects. They think that when we added in the doxy, it may have thrown him over the top. The ER doc does NOT think that it was the IVIG, and Dr. B. who called me back agrees. His LLMD also called me back (I called both from the ER, and was very pleasantly surprised they both returned my calls), said to stop the doxy, because it was the last one started (3 weeks ago.)

 

He's still having a fair amount of pain, but he drank a ton of fluid today. But, the positive moments are so wonderful, I had to post (actually my boys both said: "we know you're going to post this", and started laughing

 

Well it sounds wonderful....like a Hallmark Holiday Special...

2boys with misteriuous illness...receive crucial medical intervention...on the road to recovery as their lives return to normal they have a managable er visit, but their brotherhood comes alive with self-depricating banter.....!!!

 

I'm glad the docs replied so rapidly and that your boy will be well...and i am glad you are seeing the healing so quick!!!

[dcmom]

Enjoy your boys! And keep the good news coming

(pancreatitis aside)

[tpotter]

Well it sounds wonderful....like a Hallmark Holiday Special...

2boys with misteriuous illness...receive crucial medical intervention...on the road to recovery as their lives return to normal they have a managable er visit, but their brotherhood comes alive with self-depricating banter.....!!!

 

 

CUTE!

[mom md]

We went to the park today to take our holiday picture. My son (3 weeks out from IVIG) turned to me and said..."this is fun!" Never have I ever heard him say that taking family pictures was fun. In fact, last year in a flare when we took them he was in a rage with a dark look in his eyes. It was actually a very pleasurable experience...and I have proof on film!

[kimballot]

:) :D :) :D

[Megs_Mom]

So thrilled for you - what a great story!

 

MDMom - yay!!!

[JAG10]

YIPPPEEEE!!!!

 

Okay, question....

 

So, some kiddos immediately get worse after IVIG for a few weeks, flipping pages, herxing, whatever you want to call it. Some kiddos don't, some kids get better right away and it lasts for a few weeks and either continue to improve or then have up and down bumps a few weeks later, plateau, slide with immune challenges, ect.

 

Do you think the ones that see immediate, noticeable improvement that lasts a few weeks...do you think those kids don't have the underlying infection going on? But more auto-immune and need a more consistent level of immunoglobulin to maintain their improvements? I'm saying...if you pre-ivig eradicated the infection and that is when you saw the flipping/herxing behaviors, then post IVIG saw improvements without further "worsening" of any symptoms, would that lead you to believe the infections could be gone and you are dealing with a remaining auto-immune component?

 

I know some of you out there don't believe there is an auto-immune component without infection; noted. This question is for those who believe you can have auto-immune dysfunction even after you have eradicated all infections in the child.

[mom md]

YIPPPEEEE!!!!

 

Okay, question....

 

So, some kiddos immediately get worse after IVIG for a few weeks, flipping pages, herxing, whatever you want to call it. Some kiddos don't, some kids get better right away and it lasts for a few weeks and either continue to improve or then have up and down bumps a few weeks later, plateau, slide with immune challenges, ect.

 

Do you think the ones that see immediate, noticeable improvement that lasts a few weeks...do you think those kids don't have the underlying infection going on? But more auto-immune and need a more consistent level of immunoglobulin to maintain their improvements? I'm saying...if you pre-ivig eradicated the infection and that is when you saw the flipping/herxing behaviors, then post IVIG saw improvements without further "worsening" of any symptoms, would that lead you to believe the infections could be gone and you are dealing with a remaining auto-immune component?

 

I know some of you out there don't believe there is an auto-immune component without infection; noted. This question is for those who believe you can have auto-immune dysfunction even after you have eradicated all infections in the child.

Yes, I agree with this thought. I have always felt our disease had more of an autoimmune component than an infectious one. He was "cured" immediately with PEX. When his immune system was challenged with H1N1 he started making antobodies and flared. We have responded very well and quickly to steroids and IVIG. His ANA was also 1:640 when he was diagnosed.

[melanie]

ditto mom md

[tpotter]

I also agree. Interestingly, both my boys have already started treatment for Lyme. Both herxed pretty badly when starting on doxy last month. But, we had to just stop the doxy on my 15 yo, because of the pancreatitis the other night (he's still in a fair amount of pain, and is on a liquid only diet.) We're hoping that it was the doxy that caused it, because otherwise we don't know what's going on.

[PhillyPA]

Doxy is brutal. I was on it for two months last year for an eye infection. That stuff ripped apart my body inside. So harsh. On the positive side, my eye infection cleared up and my skin looked great! I've kept some and whenever I find myself breaking out, I pop a doxy for a week or two. It still is so brutal. Even after I go off of it it takes my body a full month to get back on track.

[dut]

Hi - just thought it worth a quick mention - there is an autoimmune pancreatitis. It isn't usually acute but our kids aren't 'usual' :-)

 

It normally presents chronically but good news is that unlike the usual pancreatitis it is more treatable and responds well to steroids. Not saying this is what your son is dealing with but thought it was worth throwing out there, in case you hadn't heard of it/considered it.

 

:-)

[tpotter]

Hi - just thought it worth a quick mention - there is an autoimmune pancreatitis. It isn't usually acute but our kids aren't 'usual' :-)

 

It normally presents chronically but good news is that unlike the usual pancreatitis it is more treatable and responds well to steroids. Not saying this is what your son is dealing with but thought it was worth throwing out there, in case you hadn't heard of it/considered it.

 

:-)

 

 

I'm checking that out right now. He has had tons of episodes of unstoppable nausea, and I asked his pediatrician yesterday if maybe this was a chronic problem, not acute. She wasn't sure. I am also planning to take him to the hospital for probable admittance today if the pain doesn't ease up. His neck is stiff (but when I push, he gets chorea in it), and he has been fighting a very low grade fever since yesterday. The pediatrician put him on a completely liquid diet, and the child is miserable. But, I'm going to spend a few minute checking out this autoimmune issue, before I head out for 2 hours of work (after which I check back with him, and if he's still not well...) I'll forward whatever I find to the pediatrician, and see what he has to say about it.

 

Interestingly, he was on steroids 2 days prior to 2 days after IVIG, and it was after that that the symptoms came on. He felt GREAT until then.