What's next after Augmentin?

[MJMama]

Hi everyone!

 

I appreciate the input when I posted recently regarding the rages that our DD (5 years old)

was having. I think it's almost time to come to terms with the fact that the Augmentin is

not working. She can go almost a day where the behavior is back to normal and the facial

tic is mild or non existent but then it's right back to square one....yesterday she raged

for 45 minutes because I wouldn't let her wear her new dressy shoes out in the mud after

the hurricane (yes, I know I'm SO mean!) We talk about it afterwards and I think she is

telling the truth when she says she doesn't know why she gets so upset and violent...

 

We're half way through her 3rd 10 day rx of Augmentin, before that she was on 10 days of

Azith and before that 10 days of Amox. We also give her Advil and culturelle probiotic.

 

Have most of you seen a significant improvement if there was going to be one on the antibiotics

before this long? Is there anything else we can try - homeopathic or OTC that might make

it work better? Dr. T had said the next step might be steroids but I'm not sure how long

she would need to be on the Augmentin before they move on to something else.

 

She starts kindy tomorrow (was supposed to be today but Irene had to drop by) and since

she gets so incredibly tired I'm really worried about how she's going to do...hoping for

the best but preparing for the worst.

 

Thanks! Kathy

[mama2alex]

I would encourage you to test for a range of infections, including mycoplasma pneumoniae, Lyme/coinfections, staph, strep and chronic viruses. The fact that the Augmentin hasn't helped doesn't mean there aren't ongoing chronic infections at play, and its important to determine which ones in order to treat them. Also, if there are current infections, its probably best to treat those and make sure they are gone before considering steroids, as these can suppress immune response (that's how they decrease inflammation).

 

We had our son on Zithromax for 8 months, then tried Augmentin, then back to Zithromax, with no significant improvement. We also tried IVIG and saw an improvement, but only temporarily. It wasn't until we adressed the specific infections (Lyme, Bartonella, staph) with targeted, rotating combinations of antibiotics that our son started to get better and stay that way.

 

Its a long, slow process, and we've been at it for a year now, but our son is doing SO much better. No more rages, mood has evened out, coordination is improved, OCD is very mild now (was severe and debilitating), sleeps through the night now, separation anxiety is pretty much gone, fatigue is better, muscle strengh is much improved.

 

 

Hi everyone!

 

I appreciate the input when I posted recently regarding the rages that our DD (5 years old)

was having. I think it's almost time to come to terms with the fact that the Augmentin is

not working. She can go almost a day where the behavior is back to normal and the facial

tic is mild or non existent but then it's right back to square one....yesterday she raged

for 45 minutes because I wouldn't let her wear her new dressy shoes out in the mud after

the hurricane (yes, I know I'm SO mean!) We talk about it afterwards and I think she is

telling the truth when she says she doesn't know why she gets so upset and violent...

 

We're half way through her 3rd 10 day rx of Augmentin, before that she was on 10 days of

Azith and before that 10 days of Amox. We also give her Advil and culturelle probiotic.

 

Have most of you seen a significant improvement if there was going to be one on the antibiotics

before this long? Is there anything else we can try - homeopathic or OTC that might make

it work better? Dr. T had said the next step might be steroids but I'm not sure how long

she would need to be on the Augmentin before they move on to something else.

 

She starts kindy tomorrow (was supposed to be today but Irene had to drop by) and since

she gets so incredibly tired I'm really worried about how she's going to do...hoping for

the best but preparing for the worst.

 

Thanks! Kathy

[eljomom]

How did you test for staph??

[dcmom]

Hi MJMama-

 

Sorry you have to be here, dealing with this.

 

I have two daughters with pandas. One diagnosed very quickly, one after several months.

 

I will say, that although initially both recovered after 30 days of antibiotic- since then, we have had to use immune modulating treatments to stop the autoimmune process.

 

I don't know your story. Did your daughter have strep? If so, are you sure it was cleared?

 

You are in pretty good hands with Dr T, all I would say is to push him to not settle for less than 95 to 100%.

 

My personal new protocol for my girls, which we did this spring, is a course of clindamycin to clear the strep, and then a round of steroids to stop the autoimmune process.

 

Talk to Dr T- he will help you sort it all out.

[MJMama]

Thanks guys! I really don't know what I would do without these forums. Our pediatrician initially said, "oh they

do that sometimes when they're not feeling well" about the tic (near constant facial grimace) and the sudden to the

day change in behavior! I love 'em but they had never even heard of PANDAS!

 

DD has tested negative for mycoplasma and lyme but I don't think she's been tested for staph or other stuff. She

has SUCH a hard time with the blood draws but I guess it's what we need to do to get her better! I am starting

to think that it's not just plain strep since she is SO unbelievably tired, she's sleeping right now. She sleeps

from 8pm to 7am with no problem but I picked her up from daycare today at 2:45 and she yawned all the way home so

I had her take a nap. It will not prevent her from going to sleep at 8 even though she is napping from 3:30 to 5:15.

If we let her skip the nap when she's tired, she will with certainty have a huge meltdown/rage. It seems to happen whenever she gets

too tired or hungry. These days she is eating a TON too, way more than usual. She is a tiny little thing but lately

is eating more than I do at a meal....Ham, mashed potatoes, mixed veggies, bread w/ butter...for example. She's not

a sweets girl so we don't usually do desserts but she will sometimes top that off with a piece of fruit and then

have a glass of soy milk before bed. These are good sized servings too.....now I'm starting to wonder if I should

cut back on the portions, oh I don't know, she's probably just having a growth spurt but now I'm analyzing everything!

 

We will consult with Dr. T this week. I think he's doing a great job for these kiddos but we've had a hard time getting

in touch with him and I'm also a little afraid of having to do more bloodwork....

 

Thanks again for your support and oh man I need to hear about kids that get better....even if it takes a while I can

deal with that but in the thick of it it's easy to think that we'll never have our sweet little one back!

[LNN]

We've been on this road for 3 yrs. My son tested completely negative on a standard Western Blot lyme test but had many positive bands on an Igenex lyme test (which is a specialty lab that looks for markers other labs don't). It wasn't until starting a lyme/bartonella protocol of multiple antibiotics that he turnd the corner.

 

As for the rages and cognitive behavior therapy, I would use the search bar in the upper corner and search for old conversations, putting "cognitive behavior therapy" in quotes or "erp". Here's an intro thread http://www.latitudes.org/forums/index.php?showtopic=7056&st=0&p=56657&hl="edgar"&fromsearch=1entry56657. if it strikes a chord, you can send me a PM and I'm happy to discuss what we did and maybe give you additional ideas. Rages used to be a huge issue for us. CBT helped a LOT.

[lfran]

Extreme exhaustion can be caused by hypothyroidism. It certainly was for me. You may want to have that tested the next time you have a blood draw. You want a measure of at least TSH, free T3 and free T4.

 

 

Thanks guys! I really don't know what I would do without these forums. Our pediatrician initially said, "oh they

do that sometimes when they're not feeling well" about the tic (near constant facial grimace) and the sudden to the

day change in behavior! I love 'em but they had never even heard of PANDAS!

 

DD has tested negative for mycoplasma and lyme but I don't think she's been tested for staph or other stuff. She

has SUCH a hard time with the blood draws but I guess it's what we need to do to get her better! I am starting

to think that it's not just plain strep since she is SO unbelievably tired, she's sleeping right now. She sleeps

from 8pm to 7am with no problem but I picked her up from daycare today at 2:45 and she yawned all the way home so

I had her take a nap. It will not prevent her from going to sleep at 8 even though she is napping from 3:30 to 5:15.

If we let her skip the nap when she's tired, she will with certainty have a huge meltdown/rage. It seems to happen whenever she gets

too tired or hungry. These days she is eating a TON too, way more than usual. She is a tiny little thing but lately

is eating more than I do at a meal....Ham, mashed potatoes, mixed veggies, bread w/ butter...for example. She's not

a sweets girl so we don't usually do desserts but she will sometimes top that off with a piece of fruit and then

have a glass of soy milk before bed. These are good sized servings too.....now I'm starting to wonder if I should

cut back on the portions, oh I don't know, she's probably just having a growth spurt but now I'm analyzing everything!

 

We will consult with Dr. T this week. I think he's doing a great job for these kiddos but we've had a hard time getting

in touch with him and I'm also a little afraid of having to do more bloodwork....

 

Thanks again for your support and oh man I need to hear about kids that get better....even if it takes a while I can

deal with that but in the thick of it it's easy to think that we'll never have our sweet little one back!