Beyond worn out

[wornoutmom]

I am just heartbroken right now. We did the steroid burst 3 weeks ago when ds had his first rage attack in 3 weeks after "not feeling good". He made slow but steady improvement over the 5 day burst and day 6 was great. Things were creeping back again a bit and he started complaining of feeling dizzy and lightheaded. Took him to ped, who felt he might be experiencing some steroid withdrawl side effects. About 2 days later (Saturday) the OCD started ramping back up and my dh was diagnosed with a double ear infection. I grabbed the left over Omnicef and started giving it to ds right away ( he had been off biaxin for 2 weeks) My younger (non-pandas) ds was sick with a cold on Monday and by Tues. ds was down for the count. Wed. I took him to urgent care and they diagnosed a nasal/sinus infection and gave him a Z-Pack. He's had 2 doses and I swear the PANDAs is getting worse. He says he is crawling out of his skin, he can't focus, he's going crazy,he wants to die, and he cant even do the simplest thing without his brain driving him crazy. Needless to say he is not in school - can't get off the couch. He is despondent that this is back again and feels like his whole life is ruined.

 

I am worn out, stressed, depressed, worried and exhausted. I had a thought this a.m. that maybe the Zith was making him worse? He has not been on this particular abx in years, but the Omnicef didn't seem to be helping after 5 days (re: his physical health) and he's already done 40 days of Biaxin and the doc is worried about being on this longer due to chance of c.dif. Has anyone experienced Zith actually making symptoms worse????

[smartyjones]

Has anyone experienced Zith actually making symptoms worse????

 

 

i'm so sorry to hear, wornoutmom, that this is happening. i know how utterly deflating that is when you think you're on the right track only to have a setback. we can only hope that it is a minor setback.

 

we did have a terrible experience with zith. i do feel we're in the small minority b/c most do seem to have positive experiences with zith. yes, i'm willing to grant that it could have been a 'worse before better' experience - but i'm not sure under what circumstances i'd ever put him back on zith.

 

it was when we were just first figuring things out - he had very high titers and a positive culture. the ped at the time (fairly useless and we then got rid of them) basically just threw him on a 5-day course of azith. they chose it b/c he's had allergic reactions to other abx previously. they totally didn't believe in pandas, thought all was unrelated. "you'll find the strep and the behaviors are unrelated" was the quote. even his bad experience with azith. he had shown some improvement - we had seen a naturopath and were trying some things - possibly due to that. once we got the test results, they prescribed azith. all previously troublesome behaviors came back with a vengenance - extreme separation anxiety. he was hiding behind chairs when my dad and stepmother were here and he has a nice relationship with them, has always known them. we finished the 5 days - i can't remember when the troublesome behaviors started. it did seem to go away a few days after finishing.

 

we got a new ped. he put him on 30-days of keflex. within a couple of days, he was 100% back to pre-pandas self. i am a huge believer that some kids do better or worse on certain abx.

 

silly me - i thought he was cured. after about 4-5 weeks after off the abx, he relapsed. so i so feel for your feelings of downspiral.

 

what goes down, must go up - right? good luck.

[justinekno]

I don't mean to hijack the thread but my son (10 yrs and weighs 70lbs) has been on zithromax (200mg) for the past 5 days and we have had not seen improvement but have seen some bad behaviors surface. It has not changed the eye tic frequency either. I am about ready to pull my hair out. I would be interested to see if anyone else has experiences like these with zithromax. We saw slight improvement on Penn, the Augmentin was useless and now the zith is sending us backwards. What is happening.

 

Has anyone experienced Zith actually making symptoms worse????

Edited May 14, 2010 by justinekno

[mama2alex]

We haven't had problems with Zithromax for our son, but I had a bad reaction myself a few years back. It was different - I felt very sick, then threw up, then had to sleep for several hours - but it certainly is possible that your son is reacting to the Zith or something in it (ours has a red coating, so could it be the red dye??). Maybe you should call your doctor and say you think your son might be having a bad reaction to it, could you try Augmentin or something. It doesn't hurt to switch and see if that makes the difference. Hope you and Justinekno both get this sorted out quickly!

[Stephanie2]

Yes, I have had zith make things worse, but before I get to that I just wanted to mention that I have heard that here in S. Florida I heard that there is a zith-resistant strep going around (lovely since both of my boys are on prophylactic zith).

 

Anyway, back in Dec. on day 2 of a Z-pak my son went insane. We later found out that the zith exacerbated a klebsiella infection that he had going in his gut (due to ....too many abx!). So C. diff is not the only thing these kids can get. In fact, both of my boys had c.diff at one point and the behavioral side-effects were NOTHING compared to klebsiella. My son was the worst I had ever seen him with kleb!! VIOLENT aggression, his body went wild and when we tried to stop him he would try to overturn furniture, throw everything inthe room he could get his hands on, and attack anyone within reach. For absolutely NO REASON! We would ask him why he was so angry and he would say, I don't know! Then we would have to hold him down for 30 minutes to make him stop attacking everything. Worst thing I have ever been through in my life!! Had my husband and I, his grandparents, etc. weeping...

 

Anyway, it doesnt' sound like your son is that bad off, but he could have some kind of bacteria going on, or even yeast. Is he taking diflucan? How is the probiotic situation?

 

Stephanie

 

I am just heartbroken right now. We did the steroid burst 3 weeks ago when ds had his first rage attack in 3 weeks after "not feeling good". He made slow but steady improvement over the 5 day burst and day 6 was great. Things were creeping back again a bit and he started complaining of feeling dizzy and lightheaded. Took him to ped, who felt he might be experiencing some steroid withdrawl side effects. About 2 days later (Saturday) the OCD started ramping back up and my dh was diagnosed with a double ear infection. I grabbed the left over Omnicef and started giving it to ds right away ( he had been off biaxin for 2 weeks) My younger (non-pandas) ds was sick with a cold on Monday and by Tues. ds was down for the count. Wed. I took him to urgent care and they diagnosed a nasal/sinus infection and gave him a Z-Pack. He's had 2 doses and I swear the PANDAs is getting worse. He says he is crawling out of his skin, he can't focus, he's going crazy,he wants to die, and he cant even do the simplest thing without his brain driving him crazy. Needless to say he is not in school - can't get off the couch. He is despondent that this is back again and feels like his whole life is ruined.

 

I am worn out, stressed, depressed, worried and exhausted. I had a thought this a.m. that maybe the Zith was making him worse? He has not been on this particular abx in years, but the Omnicef didn't seem to be helping after 5 days (re: his physical health) and he's already done 40 days of Biaxin and the doc is worried about being on this longer due to chance of c.dif. Has anyone experienced Zith actually making symptoms worse????

[wornoutmom]

I was able to reach dr T and he advised to take him off the Zith and put him back on the Biaxin, since it also covers sinus infections and has a higher anti-inflammatory property (and he responded well in the past to it). We're supposed to wait 48 hours and if there is no positive response or a worsening we will switch to Augmentin. He was unsure about the specifics of why things may be getting worse but mentioned different properties and the red dye (I have never noticed any connection with this in foods for my son though). He also mentioned he knew exactly what my son was talking about when he said he felt like he was crawling out of his skin. Thanks to all for responding. It really really helps to know others have seen something similar. Its so hard to whittle out if this is how PANDAS operates or if it might be the med or if I am just going plain crazy. My son was able to finally get off the couch and go to lunch with me and go to school for a half hour to talk to his caseworker and counselor. He actually spent quite a bit of time this morning trying to figure out how to describe what he is going through to me. In the past he has been unable find words, is reduced to moaning and losing all control into a rage/terror attack. This morning he said he was trying so hard not to let it get to that point - that he didn't want to go through that again. It was all he could do keep from scratching his eyes out and he was afraid he was going to end up back in the psych hospital. So if I have to see a silver lining, he is growing more aware and seems to be working to hold onto some control. His hope has returned with the Biaxin script since it helped him so much in the past. Here's saying a few little prayers that this will help him and I can start trying to re-mend my (once again)broken heart....

[wornoutmom]

stephanie"

 

How did you find/test for the klebsiella? We have no gut issues at the moment ( i swear he has a stomach of steel these days with all these pills!) Ds is not that bad off right now, but trust me we have been through MANY of those episodes so I understand the horror and heartbreak there. I am giving him 55mg of Kal Acidophilus probitic-4. has 500 million organisms? too much? too little? I have told the docs what I am giving and they just nodded or warned me not to over do it? He wont eat yogurt or drink anything.

 

 

 

Yes, I have had zith make things worse, but before I get to that I just wanted to mention that I have heard that here in S. Florida I heard that there is a zith-resistant strep going around (lovely since both of my boys are on prophylactic zith).

 

Anyway, back in Dec. on day 2 of a Z-pak my son went insane. We later found out that the zith exacerbated a klebsiella infection that he had going in his gut (due to ....too many abx!). So C. diff is not the only thing these kids can get. In fact, both of my boys had c.diff at one point and the behavioral side-effects were NOTHING compared to klebsiella. My son was the worst I had ever seen him with kleb!! VIOLENT aggression, his body went wild and when we tried to stop him he would try to overturn furniture, throw everything inthe room he could get his hands on, and attack anyone within reach. For absolutely NO REASON! We would ask him why he was so angry and he would say, I don't know! Then we would have to hold him down for 30 minutes to make him stop attacking everything. Worst thing I have ever been through in my life!! Had my husband and I, his grandparents, etc. weeping...

 

Anyway, it doesnt' sound like your son is that bad off, but he could have some kind of bacteria going on, or even yeast. Is he taking diflucan? How is the probiotic situation?

 

Stephanie

 

I am just heartbroken right now. We did the steroid burst 3 weeks ago when ds had his first rage attack in 3 weeks after "not feeling good". He made slow but steady improvement over the 5 day burst and day 6 was great. Things were creeping back again a bit and he started complaining of feeling dizzy and lightheaded. Took him to ped, who felt he might be experiencing some steroid withdrawl side effects. About 2 days later (Saturday) the OCD started ramping back up and my dh was diagnosed with a double ear infection. I grabbed the left over Omnicef and started giving it to ds right away ( he had been off biaxin for 2 weeks) My younger (non-pandas) ds was sick with a cold on Monday and by Tues. ds was down for the count. Wed. I took him to urgent care and they diagnosed a nasal/sinus infection and gave him a Z-Pack. He's had 2 doses and I swear the PANDAs is getting worse. He says he is crawling out of his skin, he can't focus, he's going crazy,he wants to die, and he cant even do the simplest thing without his brain driving him crazy. Needless to say he is not in school - can't get off the couch. He is despondent that this is back again and feels like his whole life is ruined.

 

I am worn out, stressed, depressed, worried and exhausted. I had a thought this a.m. that maybe the Zith was making him worse? He has not been on this particular abx in years, but the Omnicef didn't seem to be helping after 5 days (re: his physical health) and he's already done 40 days of Biaxin and the doc is worried about being on this longer due to chance of c.dif. Has anyone experienced Zith actually making symptoms worse????

[justinekno]

My husband had klebsiella bacteria recently. He was given Tannalbit and a prescription for Bactrim and Nystatin. The dr also put him on high dose probiotics and S. Boulardii. He used to lose his temper very easily and now I notice a sense of calmness with him. I never connected it to the klebsiella. Interesting.

Edited May 14, 2010 by justinekno

[Stephanie2]

First we did an Organic Acid Test which looks for markers in the urine which indicate a yeast or bacterial infection. When high hippuric acid showed up, the doc said that means bacteria but he didn't know which bacteria. So then we did a stool analysis and klebsiella showed up. We treated it with vancomycin, a broad spectrum antibiotic. BTW, my son did not have a stomach ache or diarrhea. Nothing to indicate bacteria in the gut. Just the behavior (hmmm....kind of like those pesky asymptomatic strep infections that only show up in behavior ). Our doc said that gut bacteria will cause OCD but not tics. Strep causes both. And I think yeast can cause tics but not OCD.

 

Anyway, I don't know what kind of MD you are seeing but we see a DAN doctor. They specialize in all this kind of stuff. I would bet that many of us on this board have these issues due to the amount of abx our kids are consuming, and then we just think the abx are not working...

 

Your probiotic amount sounds good but I have never heard of that brand. Maybe it is not good. Does it have Lactobacillus rhamnosis in it? Important for keeping away bad bacteria. A few of us on this board use Custom Probiotics. Very reputable, used by many autistic kids.

 

Stephanie

 

 

stephanie"

 

How did you find/test for the klebsiella? We have no gut issues at the moment ( i swear he has a stomach of steel these days with all these pills!) Ds is not that bad off right now, but trust me we have been through MANY of those episodes so I understand the horror and heartbreak there. I am giving him 55mg of Kal Acidophilus probitic-4. has 500 million organisms? too much? too little? I have told the docs what I am giving and they just nodded or warned me not to over do it? He wont eat yogurt or drink anything.

 

 

 

Yes, I have had zith make things worse, but before I get to that I just wanted to mention that I have heard that here in S. Florida I heard that there is a zith-resistant strep going around (lovely since both of my boys are on prophylactic zith).

 

Anyway, back in Dec. on day 2 of a Z-pak my son went insane. We later found out that the zith exacerbated a klebsiella infection that he had going in his gut (due to ....too many abx!). So C. diff is not the only thing these kids can get. In fact, both of my boys had c.diff at one point and the behavioral side-effects were NOTHING compared to klebsiella. My son was the worst I had ever seen him with kleb!! VIOLENT aggression, his body went wild and when we tried to stop him he would try to overturn furniture, throw everything inthe room he could get his hands on, and attack anyone within reach. For absolutely NO REASON! We would ask him why he was so angry and he would say, I don't know! Then we would have to hold him down for 30 minutes to make him stop attacking everything. Worst thing I have ever been through in my life!! Had my husband and I, his grandparents, etc. weeping...

 

Anyway, it doesnt' sound like your son is that bad off, but he could have some kind of bacteria going on, or even yeast. Is he taking diflucan? How is the probiotic situation?

 

Stephanie

 

I am just heartbroken right now. We did the steroid burst 3 weeks ago when ds had his first rage attack in 3 weeks after "not feeling good". He made slow but steady improvement over the 5 day burst and day 6 was great. Things were creeping back again a bit and he started complaining of feeling dizzy and lightheaded. Took him to ped, who felt he might be experiencing some steroid withdrawl side effects. About 2 days later (Saturday) the OCD started ramping back up and my dh was diagnosed with a double ear infection. I grabbed the left over Omnicef and started giving it to ds right away ( he had been off biaxin for 2 weeks) My younger (non-pandas) ds was sick with a cold on Monday and by Tues. ds was down for the count. Wed. I took him to urgent care and they diagnosed a nasal/sinus infection and gave him a Z-Pack. He's had 2 doses and I swear the PANDAs is getting worse. He says he is crawling out of his skin, he can't focus, he's going crazy,he wants to die, and he cant even do the simplest thing without his brain driving him crazy. Needless to say he is not in school - can't get off the couch. He is despondent that this is back again and feels like his whole life is ruined.

 

I am worn out, stressed, depressed, worried and exhausted. I had a thought this a.m. that maybe the Zith was making him worse? He has not been on this particular abx in years, but the Omnicef didn't seem to be helping after 5 days (re: his physical health) and he's already done 40 days of Biaxin and the doc is worried about being on this longer due to chance of c.dif. Has anyone experienced Zith actually making symptoms worse????

Edited May 14, 2010 by Stephanie2

[Stephanie2]

My husband had klebsiella bacteria recently. He was given Tannalbit and a prescription for Bactrim and Nystatin. The dr also put him on high dose probiotics and S. Boulardii. He used to lose his temper very easily and now I notice a sense of calmness with him. I never connected it to the klebsiella. Interesting.

 

Wow, I bet that has something to do with it! If he ever gets tempermental again, send him for a stool analysis!!!

 

Stephanie

[T_Mom]

Wornoutmom--

I wanted to add that on zith we saw initial improvements at one time...and then nothing--at which point we switched to Augmentin. Cam Kinase 180+

 

Personally, I think the "lesser" antibiotics are best to start with and to work up IF necessary--

but, as frustrating as it is, it takes time for the inflammation to be affected. Probiotics of all types, vit C, vit D, rest, etc...(I have started making kefir based milkshakes to sneak it in--plenty of chocolate sauce.)

 

The first time we decided to try 30 days of abx. made such a difference that we continued-- but it was most evident in looking back at the contrast month to month. Here Buster's behavior charting details can help determine what is working and what is not!

 

I had to remind myself to stay the course--and give the treatment time to take hold, we changed antibiotics after a month or more, if nothing improved over a few weeks (3-4), I hope things calm for you soon--very soon. (Have also used Advil for a few days, 200 mg twice a day, when there were increases.)

Edited May 15, 2010 by T.Mom

[smartyjones]

(I have started making kefir based milkshakes to sneak it in--plenty of chocolate sauce.)

 

 

we've been drinking so delicious coconut milk vanilla kefir mixed with OJ. . . so good!!

[lyme_mom]

I am just heartbroken right now. We did the steroid burst 3 weeks ago when ds had his first rage attack in 3 weeks after "not feeling good". He made slow but steady improvement over the 5 day burst and day 6 was great. Things were creeping back again a bit and he started complaining of feeling dizzy and lightheaded. Took him to ped, who felt he might be experiencing some steroid withdrawl side effects. About 2 days later (Saturday) the OCD started ramping back up and my dh was diagnosed with a double ear infection. I grabbed the left over Omnicef and started giving it to ds right away ( he had been off biaxin for 2 weeks) My younger (non-pandas) ds was sick with a cold on Monday and by Tues. ds was down for the count. Wed. I took him to urgent care and they diagnosed a nasal/sinus infection and gave him a Z-Pack. He's had 2 doses and I swear the PANDAs is getting worse. He says he is crawling out of his skin, he can't focus, he's going crazy,he wants to die, and he cant even do the simplest thing without his brain driving him crazy. Needless to say he is not in school - can't get off the couch. He is despondent that this is back again and feels like his whole life is ruined.

 

I am worn out, stressed, depressed, worried and exhausted. I had a thought this a.m. that maybe the Zith was making him worse? He has not been on this particular abx in years, but the Omnicef didn't seem to be helping after 5 days (re: his physical health) and he's already done 40 days of Biaxin and the doc is worried about being on this longer due to chance of c.dif. Has anyone experienced Zith actually making symptoms worse????

Have you had him evaluated for lyme or coinfections. Steroids could make those infections worse and feeling like you are crawling out of your skin can be a sign of lyme. Also azithromycin could make it worse if he is experiencing a die off reaction or herx. Azithroymcin is a lyme antibiotic so a worsening of symptoms would definitely be suspicious for lyme.