Some symptoms back even on Azith

[kim]

EAMom,

 

That's funny. I have an unfilled script for steroids here for suspected poison ivy for my oldest son. He had a rash near his mouth. Dr. said probably poison ivy, we'll put him on steroids. I was like "no thanks." She asked why and I told her that he had a tic syndrome and steroids could make it worse. She said "oh, no problem we'll do a steroid burst so it will be over by the time he goes to school on Mon." Well, our tics don't usually go away in a day or three when an episode hits, but whatever. We never did use the script (just a reminder... I don't consider the boys PANDAS).

 

I have listened to poor Michelle go thru this for so long. I took my youngest to a walk in clinic on a weekend for suspected strep. It was. I asked Dr. if he had a problem with zith and he said fine.

[pmoreno]

EAMom,

 

That's funny. I have an unfilled script for steroids here for suspected poison ivy for my oldest son. He had a rash near his mouth. Dr. said probably poison ivy, we'll put him on steroids. I was like "no thanks." She asked why and I told her that he had a tic syndrome and steroids could make it worse. She said "oh, no problem we'll do a steroid burst so it will be over by the time he goes to school on Mon." Well, our tics don't usually go away in a day or three when an episode hits, but whatever. We never did use the script (just a reminder... I don't consider the boys PANDAS).

 

I have listened to poor Michelle go thru this for so long. I took my youngest to a walk in clinic on a weekend for suspected strep. It was. I asked Dr. if he had a problem with zith and he said fine.

 

From what I understand, steroid bursts are more diagnostic tools to prove that the children would respond (with something decreasing the inflammation in the brain). However, I hear it's very temporary (well, at least it was for Gaby - she had a dramatic improvement after 5 days of it, but that only lasted 1 or 2 days - then she was back to the same PANDAS situation) Steroids are a real problem as long term treatments and if they only work temporarily as long as you're taking them, then I guess, what's the point.

 

As far as the zith goes, Gaby has been on it for 4 days now and although she is generally mild mannered, she had some serious outbursts during these days (one was where she was quietly playing with her stuffed animal and all of a sudden she whirled around and shrieked out loudly "stop it" at the air). This is not typical of her PANDAS picture. Some people who have posted here have described some aggressive behavior on zith - they might be right. I decided to try it only to rule out that maybe the augmentin wasn't working. So far I have not seen any improvement in behavior on the zith versus the augmentin, so I believe that Dr. K was right when he said that he didn't think her behavior was indicative of a current infection, but rather just residual fallout from the past and part of the very slow long healing process. Pat

[lss]

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep?

 

Linda

[amy s]

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep?

 

Linda

 

My dd actually did not test positve for candida after 6 full months of daily antibiotics, but...she was only on PEN VK at the time and now she is on augmentin. Also I was not giving a probiotic during the PEN VK time period, just yogurt daily. Now we do give a very good probiotic plus daily yogurt.

 

As far as my pandas dd getting symptoms after being around sick child with stuff other than strep.... I really don't know. But she had symptoms so many times that were unexpected...I really don't know what she was in contact with. I know of ONE time for sure when she had 3 positive strep kids in her classroom and that very day had an extreme exacerbation of symptoms but that was the only one I was able to pinpoint for sure. Still, the teachers contacted me whenever anyone had a fever and was sent home so I could try to track it. But it was hard because she constantly had symptoms. It WAS episodic but many times I had no idea where the fluctuations were coming from. I know one time she was exposed to a kid with chicken pox and did not have any different symptoms than she was already having. hope that helps.

[EAMom]

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep?

 

Linda

 

Just strep so far (that we can tell!).

 

We have not been tested for Candida though...

[michele]

I've often wondered if the ADHD symptoms are due to the antibiotic or the PANDAS. It is a vicious circle. We have used Nystatin in the past and I saw little improvement. However it could be some candida. Our lab work from Great Plain showed high amounts last year.

 

My son gets the symptoms when he is around another child who has strep. However he gets the symptoms when he is ill with fevers and virals too. So I don't know if that means virals can bring it on? Or was he exposed to strep? Again very hard to track. Last year the school called with strep in the class. This year, new school and they make no effort despite I have asked. My son was exposed again over the weekend to a neighbor who stayed here and ended up positive for strep Mon. He is coming off a twelve week PANDAS episode from Oct. 1st. Now I will wait to see if he gets bad again. His doesn't come on immediately. First he gets sick(which he did over the weekend)When he is sick with the fevers he is much calmer for those days . Then he gets horrible behaviors, then the tics and choriform movements, then the obsessions and stuck on ideas, then the mood behaviors and tics and hyperness, attention trouble and handwriting last for about 12 weeks. It seems to follow this process. Howver the moods and adhd seem to stay around afterwords and he never completely recovers. Each episode leaves him a liitle worse.

 

I finally lost it in the ped office yesterday. I took 3 of them in for a throat culture because everyone has sore throats. The nurse didn't want to culture the baby and I jumped on her and said yes you will! I dropped off two articles on Azith. Then I begged and complained about the past 12 weeks of an episode and how he has been exposed and I don't know what to do for him. I asked why we couldn't try Azith if he is on Omnicef already? I said taking these kids to all these appointments and therapies is too much for me to take. Now the baby showing soft neuro signs with hyptonia and apraxia. I questioned the vaccine amounts she got on one visit(5), when I had asked Dr. to take it slow. Only problem I was with the Nurse practitioner. She said she will consult with the Dr. who I spoke to on Mon. I told her not getting enough support here. That this is a real disease and Dr's better figure this out because the families are suffering. Basically she gave me a handout on support to keep things in perspective was her words and sent me out the door. No antibiotics all the quick cultures were negative. 2 hours of psychiatrist Mon, 2 hrs of psychologist on Tues, PT Tues, Wed. OT then back to the Dr's in the PM was too much to take with all these sick kids who are all moody. I think I am run down. Today it is Speech therapy and Orthopedic Dr. in the afternoon. How do people deal with this if they end up having two kids with these neuro issues? Sorry to rant....

 

 

 

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep?

 

Linda

[Worried_Dad]

Michele, you're not ranting. You're venting... and we all know that you have every right to do that, to relieve the pressure!

 

We saw the same pattern you're describing with our son. Non-strep illnesses also triggered symptom exacerbations, I assume because it stimulates the immune response, which leads to more basal ganglia inflammation. We saw the same "time lag" you describe: PANDAS symptoms didn't explode immediately, but a few days after the non-strep illness. And just like you said, every flare-up gets worse, and the recovery isn't as complete afterward. That's one of the main reasons we opted for IVIG - just felt like we were losing a little more of our son with each flare-up.

 

Since IVIG, we've had a bunch of bugs come through the family (we have 2 other kids who bring stuff home for school / daycare), but our ds has had much milder flare-ups and quicker recoveries. Hopeful sign!

 

Hang in there... and try other docs if the ones you're seeing aren't taking this seriously. We went through a LOT of different docs before we found a couple who "get it" and keep an open mind. Shouldn't be this hard to get help for sick children... but I guess it is when it comes to PANDAS.

 

Good luck!!!

 

 

I've often wondered if the ADHD symptoms are due to the antibiotic or the PANDAS. It is a vicious circle. We have used Nystatin in the past and I saw little improvement. However it could be some candida. Our lab work from Great Plain showed high amounts last year.

 

My son gets the symptoms when he is around another child who has strep. However he gets the symptoms when he is ill with fevers and virals too. So I don't know if that means virals can bring it on? Or was he exposed to strep? Again very hard to track. Last year the school called with strep in the class. This year, new school and they make no effort despite I have asked. My son was exposed again over the weekend to a neighbor who stayed here and ended up positive for strep Mon. He is coming off a twelve week PANDAS episode from Oct. 1st. Now I will wait to see if he gets bad again. His doesn't come on immediately. First he gets sick(which he did over the weekend)When he is sick with the fevers he is much calmer for those days . Then he gets horrible behaviors, then the tics and choriform movements, then the obsessions and stuck on ideas, then the mood behaviors and tics and hyperness, attention trouble and handwriting last for about 12 weeks. It seems to follow this process. Howver the moods and adhd seem to stay around afterwords and he never completely recovers. Each episode leaves him a liitle worse.

 

I finally lost it in the ped office yesterday. I took 3 of them in for a throat culture because everyone has sore throats. The nurse didn't want to culture the baby and I jumped on her and said yes you will! I dropped off two articles on Azith. Then I begged and complained about the past 12 weeks of an episode and how he has been exposed and I don't know what to do for him. I asked why we couldn't try Azith if he is on Omnicef already? I said taking these kids to all these appointments and therapies is too much for me to take. Now the baby showing soft neuro signs with hyptonia and apraxia. I questioned the vaccine amounts she got on one visit(5), when I had asked Dr. to take it slow. Only problem I was with the Nurse practitioner. She said she will consult with the Dr. who I spoke to on Mon. I told her not getting enough support here. That this is a real disease and Dr's better figure this out because the families are suffering. Basically she gave me a handout on support to keep things in perspective was her words and sent me out the door. No antibiotics all the quick cultures were negative. 2 hours of psychiatrist Mon, 2 hrs of psychologist on Tues, PT Tues, Wed. OT then back to the Dr's in the PM was too much to take with all these sick kids who are all moody. I think I am run down. Today it is Speech therapy and Orthopedic Dr. in the afternoon. How do people deal with this if they end up having two kids with these neuro issues? Sorry to rant....

 

 

 

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep?

 

Linda

[lss]

Worried Dad, Michele,

 

I thought it was just me imagining that my son's tics and dilated eyes, temper were from something else. A friend of his at school was not feeling well, had a temperature, but his mother (who is a dr) gave him tylenol and sent him to school, of course by the end of the day my sons tics were back. I just don't understand why parents send sick kids to school. So now I'm, wondering if the Kavanice we are giving my son is doing any good and also if I should start the antibiotics again. I was giving the antibiotics with yogurt to counteract the yeast, but we found out he is allergic to dairy, eggs, gluten and caisin. Any suggestions.

 

Linda

[Diana]

 

 

Michelle - your son has an AUTOIMMUNE DISEASE - PANDAS is that. So, some kids are more sensitive and any illness will aggravate the PANDAS-like reaction - my son included. Your son needs to stay on antibiotics. Or he needs to get IVIG. That is the whole story. Dr. Kovacevic or Jim Leckman at YALE could advise your pediatricians. Give their phone numbers to your doctors! It should work. diana

[Worried_Dad]

Hi, Linda:

 

This is just one (non-medical person's) perspective... but I'd say that prophylactic antibiotics are critical for these PANDAS children. Our son was on amoxil for almost a year: during that time, his symptoms smoldered, waxed and waned, but no major explosions. Then our local docs advised us to stop the antibiotic because it had "no proven benefit" for PANDAS. Within a month, things went downhill, and then we had an overnight explosion of OCD and emotional lability that was way worse than anything we'd experienced before that!

 

Like you, we do probiotics to try to counteract the abx (augmentin now for us). After the nightmare we went through after stopping the abx, though, we're very careful to make sure our son gets his augmentin every day.

 

Hope that helps. Good luck!

 

 

Worried Dad, Michele,

 

I thought it was just me imagining that my son's tics and dilated eyes, temper were from something else. A friend of his at school was not feeling well, had a temperature, but his mother (who is a dr) gave him tylenol and sent him to school, of course by the end of the day my sons tics were back. I just don't understand why parents send sick kids to school. So now I'm, wondering if the Kavanice we are giving my son is doing any good and also if I should start the antibiotics again. I was giving the antibiotics with yogurt to counteract the yeast, but we found out he is allergic to dairy, eggs, gluten and caisin. Any suggestions.

 

Linda

[EAMom]

Linda,

 

Okay...so that's the reason why I'm *not* doing food allergy testing on my dd. My PANDAS dd (like many kids) is pretty limited in what she'll eat (picky eater semi-vegetarian who doesn't like vegatables). The last thing I want to do (esp. after PANDAS anorexia nervosa) is tell her she needs to restrict what she eats...

 

Have you noticed a positive change with the new diet? How long do you have to wait to see if it is helping?

 

Anyway, if you do decide to go back to dairy, then Kefir (kind of like a milk version of yougurt) is supposed to be very good as a probiotic source (you can make it into smoothies). Trader Joes, Whole Foods, Safeway around here all carry it. Also, Whole Foods has a vast selection of probiotics (pills etc.)

 

I completely 110% agree with Worried Dad and Diana. I would never dream of taking PANDAS dd off antibiotics...unless we did IVIG. Even though my dd had a mild flare up in Oct. (b/c sister was strep positive) while on abs, I cannot imagine how bad things could have gotten if PANDAS dd was not on abs. IMO to wait to put her on abs after she gets strep if a bit like closing the barn door after the horse is already out. Dd's bad episode last spring took 3 mo. to get under control (once we found out about PANDAS/strep) including 6 days in the hospital for malnutrition, 4 different antibiotics, weeks of missed school (nothing compared to Worried Dad's son I know, who has missed more than a year), and immeasurable amounts of stress (whole family), and not to mention costing thousands of dollars (6 day hospital bill alone was $58K...thankfully most of it covered), time off work...

[pmoreno]

I'm a little down right now. Gaby's been on zith for 5 days now - tommorrow will be the last. I didn't see any positive changes at all. I think I may have been giving her too much probiotic (they recommend 1/2 to 1 teaspoon and I've been giving a whopping tablespoon, mainly because I've been so concerned about yeast. I hope I'm not causing more problems for her that way. Also on the probiotics it states that it contains maltodextrin - the powder seems to be pretty sweet. I wonder if that would bring on more yeast problems?

 

When I put her to bed tonight she took longer than usual to fall asleep (about 1 1/2 hrs). I stroked her hair, her back, said her prayers with her over and over and just when I would start to relax and think she was dropping off, she would stir and then she would say something like "what do you do if you're tired?" or is it okay to go to sleep now? At one point I touched her face and it was wet. I asked her if she was crying (because I hadn't heard any noise) and she said "yes" and I asked why and she said very quietly "I'm scared". That frightens me more than any loud angry outburst. Pat