within 2 hours of augmentin, crying from toe joint pain

[Kimflow]

Short version:

autism 7 years, PANDAS diagnosis March 2012, Tonsillectom/Adenoidectomy May 30th, now in PANDAS flare even though IV ANcef during procedure and po antibiotics following T/A. IVIG supposed to be last week of June, Yesterday, CD 57 came back at 24 which was ordered after Western Blot had 41 and 66 come up positive.

 

Finished Rifampin (which seemed to be the one that finally worked or stopping PANDAS/strep symptoms) and this am, went on Augmentin again which was to be until IVIG for PANDAS/Syndenhams Chorea last week in June. For us, that is now on hold until we coordinate treatment for Lyme.

 

SO this am I gave him his first dose of Augmentin. Within 2 hours, he started to complain of pain in right foot. He said HURT and as I tried to make it better and look for why it hurt, he continued to be in more and more pain. He never says HURT unless it is severe pain. He pointed to bottom of his big toe and by this time, tears were streaming down his face.....I put him in Epsoms salt bath to distract and detox. I ran cold water over it to distract. Once I started to think about it.....coupled with the CD 57, I got activated charcoal in him. Then in about 15 minutes, he was due his Lortab that he was given for tonsillectomy pain so that got us out of the woods.

 

I am just learning Lyme. I do know they say it hides in joints. Could this have been Lyme die off for those of you who have children who can talk about their herx symptoms???? I shoudl mention that during the failed courses of amox, keflex, 5 days of zithromax, ........I woudl notice that he would have horrible exacerbations of his chorea with the initial dosing of zithromax for about 5 hours after dosing and also saw this happen during hte first days of augmentin which he was on for PANDAS before DR. L switched him to Clindamycin and Rifampin. And agian not so coincidentally, I think they may use Rifampin, Zith, and Augm. for Lyme.

 

Thanks for any thoughts. I just went through an introduction on PANDAS board in March and now here introducing us. Everyone has been so so helpful sharing all their experiences. has made our road move much more precisely and swiftly because of hte information shared. ThanksKim

[hugs2day]

Hi Kim,

Foot pain was common with my youngest DS7 for years (started around 3) as he had pandas and now I realize Bartonella and it went untreated I didn't know he had bartonella until after the pandas episode and a year of treatment with Azithro. But a couple of months ago we added Bactrim to his daily zithro to start treating BART and the joint pain is rare now, but he has lots of itching. Activated charcoal, a long list of supplements and milk thistle seems to help I see no difference with epsom salt baths but I give them to him anyway. Mag oxide helps to keep his bowels moving and that seems to detox him as well. Ibu helps. He does seem a little wobbly in the morning I have read BART will give heel pain. He also developed a lace faint rash after starting bactrim. He uses Flagyl on the weekends. He looks better than he has in a long time. More energy, more speech but he still gets anxiety and increase in ocd with loose baby tooth. I read that lyme lives in root of teeth or something like that also read that strep lives on teeth. So the teeth thing is still a mystery to me (lyme or pandas or both or unknown pathogen)but that seems to be his most common trigger when we have set backs.

 

The joint pain used to be severe like you are describing. I would make him comfortable and treat with hot water bottle, elevated feet/ ibuprofen, etc. Sometimes brushing his feet helped too and massaging and also rubbed arnica into his feet. I also use LDN transdermal on the top of feet. I still see joint pain in him occasionally seems it moves around now sometimes knees sometimes hips sometimes heels but no where near as severe and not very often.

 

I feel for you and your son, I know its tough with autism/ pandas and now lyme. I am in the same boat. email me if you like anytime. Your a great mom and I know your son is going to improve so quickly with your amazing efforts. Your really moving fast and so on top of his care. Take care.

 

I'm sure others will have some more longterm experience, advice and hope for you soon. Stay strong!

 

Short version:

autism 7 years, PANDAS diagnosis March 2012, Tonsillectom/Adenoidectomy May 30th, now in PANDAS flare even though IV ANcef during procedure and po antibiotics following T/A. IVIG supposed to be last week of June, Yesterday, CD 57 came back at 24 which was ordered after Western Blot had 41 and 66 come up positive.

 

Finished Rifampin (which seemed to be the one that finally worked or stopping PANDAS/strep symptoms) and this am, went on Augmentin again which was to be until IVIG for PANDAS/Syndenhams Chorea last week in June. For us, that is now on hold until we coordinate treatment for Lyme.

 

SO this am I gave him his first dose of Augmentin. Within 2 hours, he started to complain of pain in right foot. He said HURT and as I tried to make it better and look for why it hurt, he continued to be in more and more pain. He never says HURT unless it is severe pain. He pointed to bottom of his big toe and by this time, tears were streaming down his face.....I put him in Epsoms salt bath to distract and detox. I ran cold water over it to distract. Once I started to think about it.....coupled with the CD 57, I got activated charcoal in him. Then in about 15 minutes, he was due his Lortab that he was given for tonsillectomy pain so that got us out of the woods.

 

I am just learning Lyme. I do know they say it hides in joints. Could this have been Lyme die off for those of you who have children who can talk about their herx symptoms???? I shoudl mention that during the failed courses of amox, keflex, 5 days of zithromax, ........I woudl notice that he would have horrible exacerbations of his chorea with the initial dosing of zithromax for about 5 hours after dosing and also saw this happen during hte first days of augmentin which he was on for PANDAS before DR. L switched him to Clindamycin and Rifampin. And agian not so coincidentally, I think they may use Rifampin, Zith, and Augm. for Lyme.

 

Thanks for any thoughts. I just went through an introduction on PANDAS board in March and now here introducing us. Everyone has been so so helpful sharing all their experiences. has made our road move much more precisely and swiftly because of hte information shared. ThanksKim

[NancyD]

It sounds like Bartonella to me too. Foot pain is a common sympton. I'm guessing your DS is experiencing herxing from the Rifampin, which is frequently used to treat Bartonella.

 

My foot pain got worse after starting Rifampin and then it got better. Finally disappeared. I found Epsom salts baths helped, as well as saunas and aleve (for me, ibuprofen for DD16). DD also did bentonite clay.

 

Diet has worked wonders -- i eliminated all dairy, cafeine, sugars, simple carbs. Eat mostly vegetable-based diet, protein, fruit. Very difficult to get a child or teen to eat this healthy.

 

Be sure to support liver and adrenals with supplements and don't forget to detox, detox, detox.

Edited June 2, 2012 by NancyD