bronxmom2 Posted September 7, 2009 Report Share Posted September 7, 2009 I know this is something we are all eerily familiar with, but... My son was in an exacerbation; a week ago he started zithromaz (our first time trying zithromax); he improved steadily for 4 days. Days 4-5 he was great. Now the last a few days he seems to be... getting worse again. Why would that happen. We are seeing Dr. L. on Sept. 18. Link to comment Share on other sites More sharing options...
EAMom Posted September 7, 2009 Report Share Posted September 7, 2009 I know this is something we are all eerily familiar with, but... My son was in an exacerbation; a week ago he started zithromaz (our first time trying zithromax); he improved steadily for 4 days. Days 4-5 he was great. Now the last a few days he seems to be... getting worse again. Why would that happen. We are seeing Dr. L. on Sept. 18. Hi Bronxmom2, What dose is your son on? is he continuing the Azith. daily? Are you doing advil? Link to comment Share on other sites More sharing options...
Kayanne Posted September 7, 2009 Report Share Posted September 7, 2009 I know this is something we are all eerily familiar with, but... My son was in an exacerbation; a week ago he started zithromaz (our first time trying zithromax); he improved steadily for 4 days. Days 4-5 he was great. Now the last a few days he seems to be... getting worse again. Why would that happen. We are seeing Dr. L. on Sept. 18. Just some ideas that I am throwing out: Maybe the recovery is like a sawtooth--as mom md described the recovery from PEX--ya know, two steps forward, one step back... Azithromycin is anti-inflammatory, so hopefully it is addressing any brain inflammation...and when you're talking about the brain, I believe you need to consider that the details of symptoms and recovery are going to unique in every case. Maybe you are seeing symptoms of yeast overgrowth...this thread might be helpful: http://www.latitudes.org/forums/index.php?showtopic=4748 Link to comment Share on other sites More sharing options...
bronxmom2 Posted September 7, 2009 Author Report Share Posted September 7, 2009 Treatment dose, 300 mg/day Yes, I'm giving him an adult advil tablet (200 mg) every morning. Sometimes (when I see the crazed look in his eyes) I give him 2. Too much? Thanks! Link to comment Share on other sites More sharing options...
bronxmom2 Posted September 7, 2009 Author Report Share Posted September 7, 2009 he is taking probiotics but all I can get him to take are the chewable kind.. won't do the liquid/powder/kefir which I suspect might be better... won't even eat yogurt. Link to comment Share on other sites More sharing options...
EAMom Posted September 7, 2009 Report Share Posted September 7, 2009 I would certainly give him 200mg advil twice daily (morning, night) but I wouldn't give him 400mg at one time. (How much does your son weigh?) I am also a big advocate of culturing family members to check for carriers. I would even culture your baby/toddler. (If a doctor gives you a hard time just lie and say best friend or classmates have strep and family members have sore throats/toddler has been acting cranky etc.) Our younger dd is a carrier (cultures positive and has no symptoms) and our PANDAS dd definitely reacts to this, even on Azith.. Link to comment Share on other sites More sharing options...
ShaesMom Posted September 7, 2009 Report Share Posted September 7, 2009 he is taking probiotics but all I can get him to take are the chewable kind.. won't do the liquid/powder/kefir which I suspect might be better... won't even eat yogurt. Have you tried the Good Belly brand of drinks. They are really Good!! Link to comment Share on other sites More sharing options...
dcmom Posted September 7, 2009 Report Share Posted September 7, 2009 bronxmom2- Don't give up. First of all, my dd stabilized after a few days of antibiotics, but it took her almost 30 days of treatment dose to have a major improvement. After that we went to prophylactic. She did have a 4 day exacerbation when a boy in her class came down with strep! Oy- this disease is so frustrating! Don't give up, and don't base whether the zith is working on a couple of days- give it time... Link to comment Share on other sites More sharing options...
T_Mom Posted September 7, 2009 Report Share Posted September 7, 2009 bronxmom2- Don't give up. First of all, my dd stabilized after a few days of antibiotics, but it took her almost 30 days of treatment dose to have a major improvement. After that we went to prophylactic. She did have a 4 day exacerbation when a boy in her class came down with strep! Oy- this disease is so frustrating! Don't give up, and don't base whether the zith is working on a couple of days- give it time... Bronxmom2-- I agree with DCMom, it took us time...one step forward, two steps back on the antibiotics-- I think it is weekly data we should be looking at rather than daily--know what I mean? Take care-- Link to comment Share on other sites More sharing options...
thereishope Posted September 8, 2009 Report Share Posted September 8, 2009 For some reason docs are leary to call people carriers. My PANDAS son, my toddler daughter and my older son ...none get symptoms of strep. They weren't going to swab my toddler because "kids that young, don't get strep". Well, she had it. Also, tell the doctor you want cultures. When my husband went in, he had a fever and couldn't swallow. They said it looked like nasal drainage. When the rapid came back negative, they were going to send him on his merry way. He insisted they culture because of my PANDAS son. Guess what...the culture came back positive. Cultures seem to be common in peds' offices, but not for adults. They tend to trust the rapid for adults.Don't. I would certainly give him 200mg advil twice daily (morning, night) but I wouldn't give him 400mg at one time. (How much does your son weigh?) I am also a big advocate of culturing family members to check for carriers. I would even culture your baby/toddler. (If a doctor gives you a hard time just lie and say best friend or classmates have strep and family members have sore throats/toddler has been acting cranky etc.) Our younger dd is a carrier (cultures positive and has no symptoms) and our PANDAS dd definitely reacts to this, even on Azith.. Link to comment Share on other sites More sharing options...
bronxmom2 Posted September 8, 2009 Author Report Share Posted September 8, 2009 Doctors continue to be taught in medical school that strep is impossible before age 3. It's an outrage! Link to comment Share on other sites More sharing options...
bronxmom2 Posted September 8, 2009 Author Report Share Posted September 8, 2009 I am trying not to give up hope but... as I said, he got better for 4-5 days, then rapid unraveling. Choreic movements. Three emotional outbursts, total meltdowns before 8am Keeps tackling the baby. He once again can't interact with other kids... when he was improving, I offered to watch the neighbor's kids today... but my son can't even be in the same room with them, even though he's begging to be with them... I have to isolate him in his room. These other three kids are so... normal. It's so weird to have kids in the house and not worry about their every move. Also, my husband is no longer a believer... no longer believes anything will help, thinks I'm making one excuse after another... we have started fighting. I'm really heartbroken and sick right now. Link to comment Share on other sites More sharing options...
colleenrn Posted September 8, 2009 Report Share Posted September 8, 2009 With your son on 300 of Zith per day and an increase in symptoms, I would be suspicious that he was exposed to strep. Even though my kids are on daily Zith, when exposed to strep, they have a flareup of symptoms, that gradually get better. Keep on the Zith and I would give Ibuprofen every six hours, so try to get in three doses instead of just two. How much does he weigh? If he weighs 70 # or more, he can have 400 mg of Ibuprofen. If he weighs 60# or more, he can have 300mg of Ibuprofen. If he weighs less than 50#, then stick with 200mg of Ibuprofen. Colleen Link to comment Share on other sites More sharing options...
dcmom Posted September 8, 2009 Report Share Posted September 8, 2009 Bronxmom2 I am so sorry. This is such a difficult disease, it has definately taken its toll on my family. My husband is a believer, but at the same time he thinks I blame everything on pandas. Sigh. Everyone deals with stuff differently, which makes it hard. It has definately come between my pandas dd and her sister, also, which is very painful to see. Could he be exposed to strep at school? Have you asked the teacher and the parents to let you know if their child gets strep. He is on abx, so there is not much more you can do to protect him, but it would be helpful for you to track his ups and downs along with strep exposure. I hope things improve this week for you... Link to comment Share on other sites More sharing options...
thereishope Posted September 8, 2009 Report Share Posted September 8, 2009 This disorder puts such a stress on the family and relationships. You're not the only one who has fights with their spouse that revolve around PANDAS. Mine does believe and knows our son has it. I can't imagine having that negativity in the house. But he isn't patient. It's hard to have an inpatient person around a PANDAS child. Also, all the info and research comes from me. He gets to sit there and be informed by someone and be given a list of instructions. I'd be less stressed if I had that luxury. I am trying not to give up hope but... as I said, he got better for 4-5 days, then rapid unraveling. Choreic movements. Three emotional outbursts, total meltdowns before 8am Keeps tackling the baby. He once again can't interact with other kids... when he was improving, I offered to watch the neighbor's kids today... but my son can't even be in the same room with them, even though he's begging to be with them... I have to isolate him in his room. These other three kids are so... normal. It's so weird to have kids in the house and not worry about their every move. Also, my husband is no longer a believer... no longer believes anything will help, thinks I'm making one excuse after another... we have started fighting. I'm really heartbroken and sick right now. Link to comment Share on other sites More sharing options...
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