peglem

Emma1 and anyone on Zithromax, can I have more info on your use of Zithromax? My son has been sick for 4 months now. The only thing that seem to help some was Zith. He had one 5 pack and then on day 11 was right back where we started. I pleaded for more and had to be approved by insurance and they only gave me 15 pills right now. He has been on it for six days and it took five of those to see any sign of improvement. Not 100% but better then he was. My big question is were you on 250 a day for a while? Did it take a little time to see more improvement? I believe my son has strep somewhere in his body, was never treated long enough and strong enough. Help, I want to make sure I am doing this right. Thanks, Kathy. My daughter's doctor was worried about liver problems on zith, but when other antibiotics failed, here's what he worked out: 5 days of 250mg of zith, then 7 days to get it out of her system, then 5 days on again, etc.. At first we would see sx returning on @ the 4th day off. Over time it started lasting to the 5th day off and at this point, about 18 months into it, we see no sx in between dosing periods. I am thinking about switching back to penvk (I think the zith has taken out the biofilms, my daughter had chronic strep), but, I like having the 7 days off to fight yeast.

I don't know what kind of supplements your child is on, but zinc can increase appetite.

Maybe I'm misunderstanding, but isn't it expected that antibiotics will render strep tests negative? And isn't the purpose of taking the zith precisely to keep those strep tests negative?

You're right that lamictal is sometimes prescribed for bipolar, but it is technically an antiseizure med. My daughter has been on lamictal for nearly 2 years now and it has really helped...we had tried many ssri's and antipsychotics in the past. All of those either made her worse or had no effect at all. She was put on lamictal by a neurologist for suspected seizures (or possible migraine). It has really reduced some pretty severe ragey behaviors and she just seems to feel better overall. While I hate the idea of her being on it, things had gotten very, very bad before we tried it and my daughter was absolutely miserable. Now I'm kinda afraid to try taking her off it.

My daughter is on both as well. Here's the reasoning: The zith kills off the good bacteria in the intestines (it kills the bad stuff too) which severely deceases the competition with yeast for food in the intestines. So, yeast overgrowth is likely... The Nystatin kills the yeast.

Valerian root is very effective for my daughter but it smells and tastes VERY nasty. My other daughter calls them "butt pills."

So sorry to hear what your son and you are going through. My daughter is autistic and nonverbal- I know when something is wrong, but most doctors don't know what her "normal" is so jsut attribute problems to her condition. It makes me feel so horrible- I know if the same thing happened to a typical child they'd be trying to figure out what happened. Although, even typical children with PANDAS are frequently dismissed as mentally ill. I was just wondering if your son was swabbed for a strep culture when he was sick in January. I'm asking because many of our kids do not present with typical strep symptoms and sometimes doctors will assume its a virus w/o actually checking. Then they try to check later by doing a blood test for titers- but it is not at all uncommon for PANDAS kids to have low titers, even though they've had a recent srep infection.

Epstein Barr=mononucleosis. And its a virus, so antibiotics won't help. I'm not diagnosing, just saying what else could cause those symptoms. When my oldest daughter got mono, I thought it was strep until we took her to the doctor. Strep test was neg. so he tested for EB- positive.

But, even for full grown adults- therapeutic dose (the z-pac) is 500mg the 1st day and 250mg/day after that. Zith builds up in your tissues and can be bad for your liver. I'd be very careful about giving too much.

I think the pain itself is something that can trigger an anger or rage episode. The body is designed to amp up for self defense when it is under attack. The pain itself could trigger a fight or flight response.

My daughter is on prophilactic abx. Lamictal is famous for keeping people up at night. I give her evening dose early in the evening for this reason. Also give melatonin and valerian at bedtime. Even so, last week she had terrible issues with night waking...resolvd by increasing CLO. Do you think the Lamictal is responsible for the nightmares or strep or something else? We got the chronic strep under control before we tried Lamictal. Sure hope the field trip goes well for your daughter. The rages can be so much worse in a public place, the "normal" ways of dealing with them aren't available in those settings.

What helps my daughter is 2 things- First of all lamictal (anticonvulsant/mood stabilizer). She first went on that because of suspected seizure activity. It did get rid of those episodes that we thought were seizures. I don't know if the mood stabilizing effects are what reduced the rages or if the rages were brought on by fear response to the seizure episodes and therefore were reduced when episodes were gone...but didn't someone else's child improve on an anticonvulsant? We had tried numerous SSRIs and some antipsychotics. SSRIs did nothing and the antipsychotics made things worse. Keep in mind that all the SSRIs were tyried before we had her strep under control. The other thing we do is CLO with bethanechol. Here is the info I brought to her doctor to get him to try the bethanechol: http://www.autism.com/treatable/supplement/megson.htm This especially helps with sensory processing. Again, I don't know if rages were reduced because the better sensory processing reduced rage triggers or if it is a direct result of the medication. For sure, though, it helps her to regain control more quickly when she does go into rage mode and it lessens the severity of the rages. If you do end up using an antipsychotic (is abilify one?) there was a study done using bethanechol to successfully ameliorate the SEs of antipsychotics as well. Allie's psychiatrist uses it with some of her patients for that. (not the doctor who prescribed it for us, though) It just now popped into my head that maybe the abilify quit working because its blocking the cholinergic system....let me know if you want me to find the study about bethanechol and antipsychotics.

I believe it is possible to buy zith over the internet w/o a prescription.

Michelle, i just wanted to share our experience with risperdal. My daughter had very explosive rages before we got the strep under control- I'm talking major self injury/aggression, to the point where we feared she could no longer live with us. The risperdal seemed to help at first. Appetite increased and sleep was better. After a few months though, she was just as bad, if not worse....we weened her off and she had 2 of the most terrific weeks ever (then the strep came back). Something most psychiatrists do not take into account is that antipsychotics are anticholinergic- they block acetylcholine. The nerves that modulate and dampen the body's fight or flight mechanism are cholinergic nerves. Also the nerve to muscle connections are cholinergic. Risperdal has been known to (and is infamous for) a SE called tartive dyskinesia- which is a movement disorder of the facial muscles (tics) and often includes uncontrollable tongue writhing. This is not likely to happen on a low dose, but I question the wisdom of giving this particular med to someone who already has a movement disorder. Maybe there are people who have been helped with risperdal...but I've never heard of a patient who sang its praises. I'm no more anti drug than your average parent, really- if you're at the point of no alternatives and are so tired of your child being miserable no matter how hard you've tried to fix things, I think the psych meds are worth a shot...but I don't understand why psychiatrists push the risperdal so hard. Its not the wonder drug they believe it to be.

Ooops- double post

Melanie, its called RDI (relationship development intervention). The focus is o developing the neurology to function in a dynamic world. My complaint with most autism therapies/treatments is they focus on static skills. Like for social skills, teaching how to greet people. the problem with that is social relationships and interractions are always changing- they can't be learned in a rote way. If you're interested check out: http://www.rdiconnect.com/

We saw Allie's dr. yesterday- She's not been feeling well (fluid behind ears, but no infection). Anyway, I was talking to him about this new treatment we've started (for the autism, not the PANDAS) that works on developing the frontal cortex functioning. Anyway, he said puberty (my daughter is 14) is a good time to work on that because the adolescent brain is undergoing developmental changes and that makes it easier to effect neurological change. He's also checking her pituitary hormones to see where she is on her way to menstruation. I'm not getting the labs done until next month anyway, when she's due for her 6 months labs anyway.

My daughter is 14 1/2 and still has not started...But I think its as they near 100 lbs. We really have had to work at getting my daughter up to 85lbs. She seems to fluctuate between 80 to 85. But last year we were stuck 73 to 78 so there has been progress. Pat, why do you say menstruation will make a world of difference? How does that change things? I've been worried that starting her period would just trigger more episodes- I certainly get more irritable with mine.

With most abx, we saw improvement w/in about 48 hs, but with zith, it was almost immediate and pretty dramatic- w/in @ 5 hours. But still, the strep would be back @ a week after finishing the zith (2 to 3 days after others). After going prophilactic on zith, she hasn't been tested for strep. Ideally, I'd like to stop the zith and see if the strep comes back. I'm thinking that after 18 months of proph. zith, we may have cleaned out the biofilms and perhaps she could move to an abx that would just prevent new infections from the outside. I think before she was being reinfected from internal sources and that's why we could never get rid of it completely. Yet, I'm kinda afraid to mess with it. Definitely don't want those horrors back! On the other hand, the good bacteria in the body will also form biofilms that can be good for the body (especially the gut) so I guess I need to make a decision that I can be comfortable with.

I haven't noticed a reaction to red dye in my daughter either. The dye free tablets are just what the pharmacy has always given to fill the prescription.

Oh, I know, you were just trying to get them to understand the severity of his illness and the impact it is having on him. But, see, she may mean well, but the end result is the same. She's turned it around to where SHE is the manipulator and the controller of everything here, instead of considering that these changes in your child are due to a real illness. That shows a huge lack of respect for you and you child- thinks she knows better than you. She may be a whiz bang teacher with children who are neurologically intact, but treating a child who simply can't help it as though he can is just going to make his problems worse-not help. He needs understanding and accommodations, not just to be successful, but to feel successful. And where is he to go with the problems he is having with other kids when she accuses him of making things up and he winds up getting into trouble when he seeks her out for help? Whether she is a good person or good teacher is irrelevant here- she is mishandling this particular situation for the simple reason that she refuses to listen to you. She is a paid, trained professional- she should know better. She really reminds me of those doctors who have decided they know it all and refuse to listen. The result is your child doesn't get the help he needs, the help that she is paid to provide.

Michelle, that teacher sounds like a big bully! She doesn't get it, won't consider it and is controlling the info that goes to the principal and others about what is going on in the classroom. NO WAY would I be sending her notes so she can discipline your child for stuff that happens at home. None of her business! They want to use the "good papers" they chose to show that he can do that kind of work, but just isn't trying most of the time. Oooh, I'm so angry about this- its just so wrong and unfair. Which, y'know, as adults we can deal with, but its not fair to your child and that's too horrible. The really terrible thing is you won't get much help from government agencies to enforce IDEA. They may schedule an audit of the school and your child's case, but the school will just get all their ducks in a row and make it look like they are just victims of a crank call from a parent who can't even control her own child. And yes, this is why so many parents give up on getting the school to help and just home school.

My daughter's zith is pill form, dye free. Pliva is the manufacturer.

I experienced the same thing with my daughter- behavior (mostly OCD) was her only symptom and I was always able to tell when she had strep based on her behaviors. Just for fun , we tested her a few times when I didn't think she had strep and she did come out neg. on those. Her ASO & antiDnase were low.... all the specialists (ENT, Immunologist, Rhumatologist) said, no she's just a carrier. I finally just said, "Fine-maybe its not PANDAS, but whatever it is, antibiotics makes it better." So, prophilactic antibiotic was prescribed on a trial basis- good results and now she's on them long term. She did have the T&A, which did not have any effect on the chronic strep w/ behavioral symptoms only.

My daughter has had 2 MRIs- both showed nothing. An 8 day VEEG showed chaotic brain waves but no seizure patterns- although the neurologist said it was consistent with a person who does have seizures and there were episodes that looked like seizures. They went away when with anticonvlsants.