Please help if you can - SO scared

[swim]

Sorry to post this topic again, but I am just about as scared as I have been in the last 7 years and don't know what to do. Looking for any feedback that might be out there.

 

Our ds12 has been in a bad backslide for about 3 weeks. We are seeing increased tics and OCD for no apparent reason (no known illness currently). We switched him to clindamycin about 24 hours ago because we had a really good 4 months last year after he had clinda prior to T&A. Thought clinda might help. Well, after 24 hours his tics are the worst they have been in about 6 or 7 years. He is in constant motion. I am wondering if we could be seeing a herxing reaction maybe from extreme dyeoff of something - maybe we are reaching something intracellular since clinda is supposed to be stronger than the other abx.

 

Logic tells me there is no way a stronger abx (we had done keflex and amox) could be letting something make him worse. Could this be like reaction to IVIG where you get worse before getting better?

 

So desparate right now. Doc not available until later tonight. When I left message for the doc, the nurse might as well have just kicked me in the gut because she said she has never seen a reaction like this to clinda. Of course I know he probably doesn't even know what PANDAS is, but it hurts to hear neg feedback when I have no idea what is going on. Argh ..........

[LNN]

If you lived in New England, I'd tell you to look at lyme/herx. Have you done testing for things other than strep? Lyme, mycoplasma, etc... have you tested ASO/AntiD Nase B titers lately? It would seem "something" is causing the backslide and a reaction to an abx is a clue, even if it's not obvious yet.

 

You can try a charcoal pill once a day, away from abx. It helps my son with lyme symptoms the way mortin did when he was sick with strep. I found it at a local health food store but you might also find it at a local pharmacy/CVS. Try to stick with it for a week. His response over time will tell you a lot.

 

Try to take a breath. It will not always be this way. Believe in your own ability to get to the bottom of this...

[Fixit]

Sorry to post this topic again, but I am just about as scared as I have been in the last 7 years and don't know what to do. Looking for any feedback that might be out there.

 

Our ds12 has been in a bad backslide for about 3 weeks. We are seeing increased tics and OCD for no apparent reason (no known illness currently). We switched him to clindamycin about 24 hours ago because we had a really good 4 months last year after he had clinda prior to T&A. Thought clinda might help. Well, after 24 hours his tics are the worst they have been in about 6 or 7 years. He is in constant motion. I am wondering if we could be seeing a herxing reaction maybe from extreme dyeoff of something - maybe we are reaching something intracellular since clinda is supposed to be stronger than the other abx.

 

Logic tells me there is no way a stronger abx (we had done keflex and amox) could be letting something make him worse. Could this be like reaction to IVIG where you get worse before getting better?

 

So desparate right now. Doc not available until later tonight. When I left message for the doc, the nurse might as well have just kicked me in the gut because she said she has never seen a reaction like this to clinda. Of course I know he probably doesn't even know what PANDAS is, but it hurts to hear neg feedback when I have no idea what is going on. Argh ..........

 

Swim...i feel your pain....

idk if its herxing but it certainly can be...that is the scarey part....

if your ds has not beed on something strong in a while it could definitley be getting some bad bugs in there...

the other side is it could be yeast...clina is very strong.....

 

just from reading your post...if it were this very minute...and the desire to throw fuel on the fire is so tempting...

do simple things that you would do anyway...give him some sach balardi..and some aciphidol;us (sp)....wait 2 hours then give some charcoal or benoite....then 2 hours later more probiotics.....

i really suggest you keep giving the probitotics...it took me a long time to realize how often an how much....

and we are all on them...and will continue even when not on abx's

 

that is just my thought for now.....the body is just one big eco-sytem....prayers on their way!

[lismom]

Sorry your going through this. I feel your pain. My son 13, has been having the worst tics he's had in 2 years. He's been on zith. I have tried different things. Some made it even worse, which was flagyl, because I thought maybe was having one type of overgrowth. Stopped that, and have noticed tics get slightly better after giving a dose of grapefruit seed extract in pill form. Just started this because I read about it helping yeast. I'm puzzled like you. But I thought I would try the gse because I know with my son the gut is involved in this somehow. I am switching to Omnicef. Only day 1 do don't know about that yet.

 

Our tics are bad facial, mild neck and body. Maybe try addressing the possibility of yeast. I know this intensifies tics. If it is yeast the clindamycin will make this worst. I'm to afraid to take him off abx completely, so I'm going to try one thing at a time. Kathy

[Worried_Dad]

Hang in there, Swim. Whether it's GAS, Myco p., Lyme, or some other infection / co-infection combo, it does seem that many kids experience the "it gets worse before it gets better" symptom pattern. So maybe, in a way, it's a good sign: the storm before the calm?

 

Praying for you and your ds.

[norcalmom]

mycoplasma can cause a herx reaction as well. Often benedryl 30 minutes prior to giving antibiotics is given as treatment for herxing. Look on the lyme board for herxing remedies. I got the benedryl recommendation from an expert on chronic infection - specifically mycoplasma, and it was aslo recommended ont he lyme board for herxing. Thinking of you-

[swim]

Thank you for the replies - makes me feel not so alone in all this ... Have not tested titers lately. Our ped doesn't really use the titers to diagnose - goes more by the symptoms. Going to stay away from flagyl for now as an option if clinda doesn't work. Before we knew about PANDAS, we treated DS for systemic candida - that was about 6 years ago and it took about 2 years to get his gut back. I'm hoping the probiotics we're using are protecting him from going through that again, but it certainly is something we need to face head on and consider (wish I could ignore it). May try the grapefruit seed extract, but I do realize things could be awful if there is a candida problem and the gfs causes too much dyeoff. Thank you all again ... you are my support group

[swim]

mycoplasma can cause a herx reaction as well. Often benedryl 30 minutes prior to giving antibiotics is given as treatment for herxing. Look on the lyme board for herxing remedies. I got the benedryl recommendation from an expert on chronic infection - specifically mycoplasma, and it was aslo recommended ont he lyme board for herxing. Thinking of you-

 

Thank you for the benedryl suggestion. I've read about mycoplasma, but haven't seen any symptoms in DS. Any feedback on whether PANDAS kids have tested positive without any mycoplasma symptoms - kind of like testing positive for strep without symptoms?

[mom love]

Swim, I will tell you that myco p can present without typical symptoms like strep. My dd very surprisingly tested positive for myco p after a sudden onset of a very bad motor tic. We got a list of bloodwork from someone who saw Dr. Bouboulis and our doctor did it all for us. Doc put her on zith strep dose and she was back to 95% better in 5 days. That said, she has slipped over time and has gotten worse, esp lately. Doc added omnicef for 2 wks to see if it was exposure to strep, no improvement, then we added augmentin for 10 days and no improvement. We have now just switched to biaxin on advice of our doc. Only on day 2. We too have gut issues I believe. She is constipated etc. I have added one pill of oxy powder (mixed in water for her) and she did have a soft, normal bowel movement the next day. But it is hard to fit that in as it has to be given 6 hours away from medications (according to website)so I haven't been able to fit it in again with giving 2 abx and being in school. Swim, I am really sorry things are so bad right now. I really do understand. I am holding on to my faith as tightly as I can and believe I will be brought to a better place. I am praying for you and your child.

[swim]

Swim, I will tell you that myco p can present without typical symptoms like strep. My dd very surprisingly tested positive for myco p after a sudden onset of a very bad motor tic. We got a list of bloodwork from someone who saw Dr. Bouboulis and our doctor did it all for us. Doc put her on zith strep dose and she was back to 95% better in 5 days. That said, she has slipped over time and has gotten worse, esp lately. Doc added omnicef for 2 wks to see if it was exposure to strep, no improvement, then we added augmentin for 10 days and no improvement. We have now just switched to biaxin on advice of our doc. Only on day 2. We too have gut issues I believe. She is constipated etc. I have added one pill of oxy powder (mixed in water for her) and she did have a soft, normal bowel movement the next day. But it is hard to fit that in as it has to be given 6 hours away from medications (according to website)so I haven't been able to fit it in again with giving 2 abx and being in school. Swim, I am really sorry things are so bad right now. I really do understand. I am holding on to my faith as tightly as I can and believe I will be brought to a better place. I am praying for you and your child.

 

Hearing your reply helps me decide we need to test for possible myco p. I know there was terrible respiratory illness with myco symptoms going on around here in Oct/Nov, but DS never seemed to catch it. Maybe he did catch, but did not show symptoms just like he is with strep ... Do you happen to know the name of the test to indicate myco p? Thank you for your info and I hope you also see improvement soon with the biaxin. We have not tried that one yet ... My thoughts and prayers are with you too

[NewBeginnings]

We were shocked when our son tested positive for myco p. He had no typical symptoms of it, but his titers ended up being very high.

 

Ask that they test him for both IGG and IGM titers on the mycoplasma pneumonia test. Apparently the IGM window is a hard one to catch, but for our son his IGM has been high for a few months now.

 

Also, when we changed his protocol to treat the myco p, it brought back his tics and then some. He went from no tics at all to lots of them and it lasted for 14 weeks. Then they finally settled back down. Now we see them every 6 weeks as the myco p flares. You can mark it on your calendar, they restart on that 6 week cycle, lasts for 5 days and then gone again.

 

The change in your son's meds could be triggering the tics and ocd.

 

I hope you get some answers soon.

Edited January 27, 2011 by NewBeginnings