need advice about DD 10

[bulldog24]

Here it is 5am and I cant sleep. So much going on.

 

My son ds 6 has severe PANDAS but doing much better, about 80% functioning! Woo hoo!

 

We just saw dr b 2 weeks ago. I suspected my.DD 10 had a mild case of PANDAS as well, so.brought her too. Dr. B agreed, drew a bunch of blood.. He put her on augmentin for a month, a steroid taper for a stuborn sinus infection.

 

We dont see dr b for 4 more weeks.

 

Any way she seemed better. But 4days into steroids we had to stop. She was a wreck.

 

She got to baseline quickly. Then seemed better than baseline.

 

But now she seems to be getting worse. She can not control her temper. An example...

i was chnging my 7m old and need a paper towel. I asked her nicely to grab me one. She flew off the handle. She said I am tired of doing everything, I wish I wasnt born.

 

That lasted about an hour of ranting and tears.

 

today i was going to get her a fish. But her riding lesson was late 1 hour, so plans changed. Couldnt go to pet store. She went ballistic. Calling me a liar etc etc. We just got in the car from the lesson.

 

I am going to call dr. B office tomorrow to see what else I could do or if blood work yields any info.

 

She doesnt have many other pandas signs, but this is so not normal.

 

Shes on

Omegas,vitc probiotics

 

Waiting for mag, bvits and multi to arrive

 

I guess i could do ibuprofen.

 

What do you guys think?

[Kimflow]

Bulldog,

Could the antibiotics have changed her flora just enough to make her have some yeast growing.....needing glucose to feed the yeast bugs and not her brain and causing mood swings?

My only idea but wanted to try and give you some support.

Kim

[fightingmom]

This is exactly what happened to us and we alsOnhave sinus infections that will not quit.

 

My son was on the steroids and turned into an emotional, crying disaster. On day 5 I took him off. Within 24 hrs he was great and we had about 9 days I think of an angel child. It was wonderful! My son was back. Well he went from wonderful to monstrous and has been raging for 3 days.

 

When do you go back to dr b? Our appt is not this Thursday but next.

[fightingmom]

Sorry just read you go back in 4 weeks.

 

I did do ibuprofen and it worked. Posted in my thread that started out positive but turned into my rant....

[LNN]

There's a bacterial infection called MARCONS that you may want to research. MARCONS stands for "Multiply Antibiotic Resistant Coagulase Negative Staph". Here's an article that gives a brief overview http://ezinearticles.com/?Why-MARCONS-Prevent-You-From-Killing-Lyme-Bacteria-and-How-You-Can-Stop-Them&id=3662317

 

Ignore the references to lyme - not trying to suggest that. But you tend to only see MARCONS discussed on lyme forums, so it's hard to not get a discussion about the two at the same time. If you search on Shoemaker+MACRONS you can find additional info. There's a nasal spray that's pretty effective called "BEG" spray. I don't have personal experience with it, but many on the lyme forum do. I believe it's a prescription available from some compounding pharmacies.

 

You can also try X-Clear or any other nasal spray that contains Xylitol (found in health food stores). Xylitol prevents bacteria fron adhering to the soft nasal and throat tissues and multiplying. Many gums also contain xylitol (tho that wouldn't reach nasal passages).

 

The article above also makes reference to using a combo of common herbs like garlic and tumeric. Garlic also fights yeast and tumeric is anti-inflammatory. You can get garlic pills which are tasteless and small and pretty inexpensive. I get mine in the vitamin isle at the grocery store.

[bulldog24]

Thanks. Llm what about my daughter makes you think this? I have never heard of this.

[LNN]

The "stubborn sinus infection" and negative response to prednisone.

 

I know Dr B feels that abx plus prednisone is helpful for sinus infections. His thinking is that as long as the sinuses are inflamed, they trap gunk that breeds bacteria and makes it harder for the abx to get the upper hand.

 

But we had a similar experience to yours (not the same degree of anger but an unpleasant response) and like you, I pulled the prednisone after only a few days. My DS had great responses to prednisone before the incident I have in mind, so to me, prednisone wasn't appropriate for whatever we were dealing with at the time. Unlike you, my DS had been on augmentin and Dr B switched him to zith, thinking maybe the augmentin hadn't done the job. The switch made DS worse. So I went back to augmentin and things eventually calmed down. But to be perfectly honest, I'm not sure we were dealing with a sinus infection at all. DS was dx'd with lyme later that year.

 

I know every doctor has abx they prefer. In my family, zith seems pretty ineffective for sinus issues. Amox works pretty well for us and if we need big guns, I ask for ceftin (which is wicked expensive so I ask sparingly). But if you're dealing with a sinus issue and not seeing improvements, I'd consider either a different abx or wonder if you were dealing with something other than a straight-forward sinus infection. Which is what made me think of Marcons.

[EAMom]

You can also try X-Clear or any other nasal spray that contains Xylitol (found in health food stores). Xylitol prevents bacteria fron adhering to the soft nasal and throat tissues and multiplying. Many gums also contain xylitol (tho that wouldn't reach nasal passages).

 

 

Xlear is WONDERFUL

 

get the one in the glass bottle, not the one in the plastic bottle. I've heard the glass bottle one does a better job of spraying.

 

http://www.amazon.com/Xlear-Nasal-Spray-1-5-liquid/dp/B000M4W2E6

 

I used it recently when I got a sinus infection (from the flu). The doc has recommended saline nasal washes, which were unpleasant and did nothing! The xlear was so soothing! It has xylitol and grape seed extract in it. Both are anti-bacterial. After I sprayed it into my nose I would lie to the side or on my head (not really, I would put my head upside down, not the rest of me) and I could feel it move into my sinuses.

 

Around here you can get it at Whole Foods and CVS...I'm sure many other places too.

[EAMom]

double post

Edited April 2, 2012 by EAMom

[HanHan]

Hi, I don't have any advice to offer you but just to say I know how you are feeling. My daughter started to go downhill last week and it hasn't stopped. She has been so explosive and I don't know what is causing it. We started her on a new supplement last week-collidal silver- i wonder if that could be it. Anyway, I feel your pain. Hang in there.

 

Here it is 5am and I cant sleep. So much going on.

 

My son ds 6 has severe PANDAS but doing much better, about 80% functioning! Woo hoo!

 

We just saw dr b 2 weeks ago. I suspected my.DD 10 had a mild case of PANDAS as well, so.brought her too. Dr. B agreed, drew a bunch of blood.. He put her on augmentin for a month, a steroid taper for a stuborn sinus infection.

 

We dont see dr b for 4 more weeks.

 

Any way she seemed better. But 4days into steroids we had to stop. She was a wreck.

 

She got to baseline quickly. Then seemed better than baseline.

 

But now she seems to be getting worse. She can not control her temper. An example...

i was chnging my 7m old and need a paper towel. I asked her nicely to grab me one. She flew off the handle. She said I am tired of doing everything, I wish I wasnt born.

 

That lasted about an hour of ranting and tears.

 

today i was going to get her a fish. But her riding lesson was late 1 hour, so plans changed. Couldnt go to pet store. She went ballistic. Calling me a liar etc etc. We just got in the car from the lesson.

 

I am going to call dr. B office tomorrow to see what else I could do or if blood work yields any info.

 

She doesnt have many other pandas signs, but this is so not normal.

 

Shes on

Omegas,vitc probiotics

 

Waiting for mag, bvits and multi to arrive

 

I guess i could do ibuprofen.

 

What do you guys think?

[KaraM]

Our stories are similar in many ways. My dd has/had Major PANDAS symptoms. But my ds only some minor things...never officially diagnosed with PANDAS..no OCD or tics...just emotional lability. But last winter we thought he may be causing a strep exposure exacerbation in my dd. He was constantly getting sick, always congested, sore throats, etc. So we brought him to Dr. B., too. He diagnosed him with sinus infection and put on Biaxin and steroid burst. (My ds had been Zithromax shortly before for the strep, but Dr. B. thought that the strep was in his sinuses and the Zith was not reaching it). My son had a very intense reaction after a couple of days on the medication. We got scared that it was result of the steroid but I now think it may have a been a herxheimer reaction. We discontinued the steroid, but continued the abx until we saw DR. B a month later. By that point ds was doing much better, but dd was not. So Dr. B. ordered testing for LYme and co-infections. Both were positive for Bartonella and ds (not PANDAS dd) was very suspicious for Lyme (and just this past January was actually positive for Lyme).

 

So I have two possible theories...it could be, like LLM said, that a different antibiotic is needed. Or it could be a possible herx related to Lyme or other infection die off.

 

I tried to look back at some of your posts to see whether you had done Lyme/coinfection testing (I believe you Lyme yourself, isthat right?). I don't want to harp on it if you feel you've thoroughly explored.

 

Kara

[fightingmom]

You can also try X-Clear or any other nasal spray that contains Xylitol (found in health food stores). Xylitol prevents bacteria fron adhering to the soft nasal and throat tissues and multiplying. Many gums also contain xylitol (tho that wouldn't reach nasal passages).

 

 

Xlear is WONDERFUL

 

get the one in the glass bottle, not the one in the plastic bottle. I've heard the glass bottle one does a better job of spraying.

 

http://www.amazon.com/Xlear-Nasal-Spray-1-5-liquid/dp/B000M4W2E6

 

I used it recently when I got a sinus infection (from the flu). The doc has recommended saline nasal washes, which were unpleasant and did nothing! The xlear was so soothing! It has xylitol and grape seed extract in it. Both are anti-bacterial. After I sprayed it into my nose I would lie to the side or on my head (not really, I would put my head upside down, not the rest of me) and I could feel it move into my sinuses.

 

Around here you can get it at Whole Foods and CVS...I'm sure many other places too.

 

The xlear was recommended to me here. I bought it less than a week ago and have been using it religiously since and I have to say, it's helping me. I stopped taking the cipro that was prescribed for my sinus infection because it was making me feel weird. I was getting weird sore muscles or aches all over. First the top of my foot, then my neck, then my shoulder, then my arm. It was bizarre. Happened to me once before and I think looking back it was also cipro that did it. I had forgotten about it. Anyway, point being, I have been battling a sinus infection and I already feel like I can breathe more clearly and am don't have the pressure around my nose and between my eyes that I was feeling for a long time. It was $13.99 at Whole Foods. Probably cheaper at Amazon, but I wanted to buy it quickly. I bought for my son, too. Though he probably only has been using once a day.

[EAMom]

You can also try X-Clear or any other nasal spray that contains Xylitol (found in health food stores). Xylitol prevents bacteria fron adhering to the soft nasal and throat tissues and multiplying. Many gums also contain xylitol (tho that wouldn't reach nasal passages).

 

 

Xlear is WONDERFUL

 

get the one in the glass bottle, not the one in the plastic bottle. I've heard the glass bottle one does a better job of spraying.

 

http://www.amazon.com/Xlear-Nasal-Spray-1-5-liquid/dp/B000M4W2E6

 

I used it recently when I got a sinus infection (from the flu). The doc has recommended saline nasal washes, which were unpleasant and did nothing! The xlear was so soothing! It has xylitol and grape seed extract in it. Both are anti-bacterial. After I sprayed it into my nose I would lie to the side or on my head (not really, I would put my head upside down, not the rest of me) and I could feel it move into my sinuses.

 

Around here you can get it at Whole Foods and CVS...I'm sure many other places too.

 

The xlear was recommended to me here. I bought it less than a week ago and have been using it religiously since and I have to say, it's helping me. I stopped taking the cipro that was prescribed for my sinus infection because it was making me feel weird. I was getting weird sore muscles or aches all over. First the top of my foot, then my neck, then my shoulder, then my arm. It was bizarre. Happened to me once before and I think looking back it was also cipro that did it. I had forgotten about it. Anyway, point being, I have been battling a sinus infection and I already feel like I can breathe more clearly and am don't have the pressure around my nose and between my eyes that I was feeling for a long time. It was $13.99 at Whole Foods. Probably cheaper at Amazon, but I wanted to buy it quickly. I bought for my son, too. Though he probably only has been using once a day.

 

Just make sure you don't use each other's bottles!

[fightingmom]

 

Just make sure you don't use each other's bottles!

 

 

too funny you should say that, I took a sharpie and wrote our names on each and even on the caps! lol

[bulldog24]

Dr b moved our appt up and told me ibuprofen.