Shouldn't I know what to do now?

[peglem]

Enough denial! This is really an exacerbation, and I don't know what to do about it. It started @ 2 weeks ago w/ her LD IVIG. She just finished 5 days of prednisone....ugh! I hate this! Last night we had several hours of calm, so I thought the pred had made it better, but this morning was very bad. So, guess I'll take a few hours to feel sorry for myself and then figure out what to do.

[sf_mom]

Peggy, not knowing all the details of this current episode I am highly suspect she is reacting to IVIG..... I would not treat in the near future and let things settle before doing another treatment at the larger 1.5 dose.

 

What dose antibiotics is she currently on and how much does she weigh? I highly recommend considering upping her antibiotic for 14 days to she if she improves. Myself and others have seen improvement within 48 hours post IVIG with the higher dose antibiotic.

 

 

 

 

Enough denial! This is really an exacerbation, and I don't know what to do about it. It started @ 2 weeks ago w/ her LD IVIG. She just finished 5 days of prednisone....ugh! I hate this! Last night we had several hours of calm, so I thought the pred had made it better, but this morning was very bad. So, guess I'll take a few hours to feel sorry for myself and then figure out what to do.

[earnestfamily7]

I can relate to "shouldn't I know what to do by now".... as I have been going through PANDAS exasperations with my son since 2006... but honestly I get totally freaked out ever single time!and now with 2 of them going through it- my brain goes into overlaod! I know what to do in theory... but for me what really scares is me is the holy *** feeling of helplessness as you see your child slipping from you. For me it is a maternal instict to panic and then I set out on getting them on the right antibiotics....and getting them back to baseline - all the stuff you know...

 

With my daughter she had only a small window that was "good" while on steriods. We were told that often it means the infection is strong and fighting.... remind what antibiotics is she on?

 

I hope the steroids calm things for you in the long run and that you can get a repeat IVIG down at a higher dose in the coming months. Remember you are on the right path you just hit a nasty hole in the road!

 

Hugs

steph

[Fixit]

I hear ya sister!!!.....Maybe it's just exhaustion...stick a fork in me...i'm done.....i want someone else to be in charge!!!

 

 

Enough denial! This is really an exacerbation, and I don't know what to do about it. It started @ 2 weeks ago w/ her LD IVIG. She just finished 5 days of prednisone....ugh! I hate this! Last night we had several hours of calm, so I thought the pred had made it better, but this morning was very bad. So, guess I'll take a few hours to feel sorry for myself and then figure out what to do.

[peglem]

Well, what brought her out of it last time was a course of rifampin coupled with augmentin, then we followed up with an increase in her zith dose, starting with5 days at 500mg/day, then 500mg every other day, which she is still on. I don't want to bring the augmentin back on board because it causes awful yeast issues for her, no matter how much probiotic we use. I guess I need to get back with her pediatrician on this. I tried to make an appointment last week and the phone triage nurse informed me that "We do not treat behavioral problems at this office." She must be new! She did pass a message to her doc though, and he called me back and prescribed the prednisone.

 

SFmom- I don't have any stockpile of abx, so I'll have to find a way to get more.

Edited April 27, 2010 by peglem

[peglem]

Thanks, nice to know someone else knows exactly how I feel here!

I hear ya sister!!!.....Maybe it's just exhaustion...stick a fork in me...i'm done.....i want someone else to be in charge!!!

 

 

Enough denial! This is really an exacerbation, and I don't know what to do about it. It started @ 2 weeks ago w/ her LD IVIG. She just finished 5 days of prednisone....ugh! I hate this! Last night we had several hours of calm, so I thought the pred had made it better, but this morning was very bad. So, guess I'll take a few hours to feel sorry for myself and then figure out what to do.

[dcmom]

Peg-

 

so sorry.

 

We have typically done a month long steroid burst. If she reacts decently to steroids- see if your doc will consider it. It was like a week long dose, and then tapering off over the following three weeks. It has either helped us long term, or at worst given us longer term reprieve- to get you closer to the date where you can try the high dose ivig.

 

I wish you could try pex- is there any way a local hospital could give it a try with light sedation?

 

Hope you get some relief soon...

[norcalmom]

Hang in there. Didn't you say that your immuno (or his brother) ordered the higher dose IVIG? How long do you have to wait to do it? For us the advil is at least as effective as upping the dose on our Azithromycin. Fish oil is also anti inflamatory, so can't hurt to give a little of that too. there are a number of studies on effectiveness of fishoil (high DHA ratio fishoil) on treating adhd. We use the Carlson liquid lemon flavor. got to keep it cold - I put a "floater" on top of lemonade (1tsp). better than taking huge pills - you need too many of them. Can't taste fish at all, but makes it oily. Its better in strawberry smoothy. This probably won't do anything, but might make you feel better.

 

I know that feeling of needing to DO something to fixit. We all do. Hang in there and keep us posted.

[sf_mom]

Our son is 47 pounds... 500 m.g. azithromycin. Several others, same size, same dose and its helping. I'd definitely try and up Azithromycin once you talk to your Dr. She should perk up within 48 hours... or at least that has been our experience as well as others.

 

FYI: Lyme or co-infections issues are treated with much higher dose antibiotics than what is typically prescribed for PANDAS.

 

-Wendy

[peglem]

Hang in there. Didn't you say that your immuno (or his brother) ordered the higher dose IVIG? How long do you have to wait to do it? For us the advil is at least as effective as upping the dose on our Azithromycin. Fish oil is also anti inflamatory, so can't hurt to give a little of that too. there are a number of studies on effectiveness of fishoil (high DHA ratio fishoil) on treating adhd. We use the Carlson liquid lemon flavor. got to keep it cold - I put a "floater" on top of lemonade (1tsp). better than taking huge pills - you need too many of them. Can't taste fish at all, but makes it oily. Its better in strawberry smoothy. This probably won't do anything, but might make you feel better.

 

I know that feeling of needing to DO something to fixit. We all do. Hang in there and keep us posted.

Last time we tried fish oil it gave my daughter tummy pains and awful gas. No prob getting her to swallow pills- she even handles those big old augmentins! Been giving lots of ibuprofen, except while she was on the prednisone.

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[sf_mom]

Karen,

 

I am no Dr. but I do tend to trust my instincts. We went up and down on the dosage sooooooo many times and saw immediate improvement every time we upped to 500 m.g. of Azithromycin. I wouldn't hesitate going back to 600 m.g. per day if it was working for you. BUT, make sure you are protecting your son's gut flora with high dose probiotics. Remember, we are the one's giving our son 1.5 trillion units, 1 1/2 cups of bentonite clay and high dose b-12 daily without a problem.

 

We are holding our son at his current antibiotic level until he is completely symptomless for 12 weeks and then we will lower amount slowly pending no increase in symptoms.

 

 

-Wendy

[melanie]

Karen,

 

I am no Dr. but I do tend to trust my instincts. We went up and down on the dosage sooooooo many times and saw immediate improvement every time we upped to 500 m.g. of Azithromycin. I wouldn't hesitate going back to 600 m.g. per day if it was working for you. BUT, make sure you are protecting your son's gut flora with high dose probiotics. Remember, we are the one's giving our son 1.5 trillion units, 1 1/2 cups of bentonite clay and high dose b-12 daily without a problem.

 

We are holding our son at his current antibiotic level until he is completely symptomless for 12 weeks and then we will lower amount slowly pending no increase in symptoms.

 

 

-Wendy

 

 

Peg

 

I know this is hard really hard.Dannys 1st few IVs werent good at all.What are they using?Is it gammunex? I just posted something about different IVIGs.Ourmd isnt going for the higher dosage no matter what so Im giving up.Hes doing better since the gammunex and now Im thinking about the other one.My md treats tons of autistic patients and knows her stuff.I wish I could help more.Your always there for me and danny.

 

Your friend,

 

Melanie

[peglem]

Karen,

 

I am no Dr. but I do tend to trust my instincts. We went up and down on the dosage sooooooo many times and saw immediate improvement every time we upped to 500 m.g. of Azithromycin. I wouldn't hesitate going back to 600 m.g. per day if it was working for you. BUT, make sure you are protecting your son's gut flora with high dose probiotics. Remember, we are the one's giving our son 1.5 trillion units, 1 1/2 cups of bentonite clay and high dose b-12 daily without a problem.

 

We are holding our son at his current antibiotic level until he is completely symptomless for 12 weeks and then we will lower amount slowly pending no increase in symptoms.

 

 

-Wendy

 

 

Peg

 

I know this is hard really hard.Dannys 1st few IVs werent good at all.What are they using?Is it gammunex? I just posted something about different IVIGs.Ourmd isnt going for the higher dosage no matter what so Im giving up.Hes doing better since the gammunex and now Im thinking about the other one.My md treats tons of autistic patients and knows her stuff.I wish I could help more.Your always there for me and danny.

 

Your friend,

 

Melanie

She's been getting gammugard. I talked to the immuno the other day about brands. He likes to use privigen (I think that's right- privi something), because he says its put through finer filters, and since they can't screen for prions, there is a small chance of mad cow disease passed through IVIG- privigen, he says has a better chance of that not happening. I don't know what was ordered for her 1st IV, but I know the infusion center had to call the doctor because they didn't carry the brand that had been ordered, so we were given the gammugard.

Allie is doing okay this afternoon, but, that's between erruptions. She's either just fine or the switch gets flipped and she's suddenly possessed.

[kim]

Peglem,

 

I ran across this quite by accident, but I thought it might be helpful for those of you dealing with IVIG. I am so praying for strength for you and your Ddaughter

 

This say last updated 2007...so not sure if there are changes to any of this?

 

http://www.ashp.org/s_ashp/docs/files/DSho...pdatedDec07.pdf

 

Intravenous Immune Globulins (IVIG) Side-by-Side Comparison