To Ronna, Cheri, Allison, more questions about antibiotics/yeast

[brett]

Hi to all, thank you Cheri and Ronna, Allsion and momonamission. You have no idea how all of this information is helping me.

 

To answer the question about the blood tests, the neuro took the blood but put Jesse right away on amoxicillin. One week later, both of the anti-strep titers (anti DNAseB and ASO) came back in the normal range. Thus, after one week of amoxicillin, being that the blood tests were normal, the dr. said take him off the antibiotics, which we did. A week later, as they sypmtoms had not improved, the dr. said, put him back on let's see what happens type thing, the blood tests being normal can't automatically rule out PANDAS (he is the 2nd neurologist to tell me that by the way). So back on the amoxicillin, but only 2 days this time. The reason we took him off after only 2 days is because Jesse seemed to get much worse on them! And in retrospect looking back on the one week he had on them, he got much worse that week too! Mainly during that one week, he was much more hyperactive, many more vocal tics; for the week he was off the amoxicillin, no hyperactivity, no vocal tics. Then, 2 days back on, a lip licking tic appeared that gave him the worst rash around his mouth (which could have also been caused by the antibiotic too perhaps?), and again more hyperactivity. After just one day off the amoxicillin, no more lip licking, rash completely gone by the next day. Coincidence? I have to think no.

 

So my dr. friend did give me a prescription for Zithromax. Now I am trying to decide if it is worth a 5 day course to see if anything improves. I will p/u the prescription tomorrow. I did get the probiotic (culturelle it is called, lactobacillis it says on the box) to give him one per day, I read somewhere that it should be given 2 hours after the antibiotic? I would like more information re: the yeast issue if someone could help me. Is there a specific test that can be done for this? Is there a specific treatment that can help with yeast? I have found a natural dr. practice near my home and will be calling tomorrow for an appointment to discuss my son and to go ahead and do the IGg food allergy testing. Should he be tested for anything else, such as mercury or yeast? I think this is worth pursuing as my son (and of course this is ultimately my fault) does not have a good diet at all. I am willing to try natural supplements, but first I want to try the 5 day course of antibiotics as well as food allergy testing.

 

I am also taking the advice many of you have advised: no screens for a week, starting tomorrow a.m. This should be interesting as we all watch a decent amount of tv! But my son is up for it and willing to try because he is so depressed and confused re: what is happening to his body. He is suffering and it is agony to watch. However, I sat behind him on Sat. a.m. and watched him watch wrestling on tv, his body was all over the place, out of control, it really seemed like he got worse while watching that stuff. No more of that show!

 

So I think I understand different things that can happen this week. If in fact my son has a yeast issue I assume once he is on antibiotics again he may get worse. In that case I will take him right off of the Zithromax. I also can assume that if it is PANDA he will show a change for the better on the antibiotics. So I am ready for all situations. If anyone can get me some info about the yeast, testing, treatment, etc., I would really appreciate. Thank you all. Brett

[Jeff]

Hi Brett, Just wanted to add my two cents regarding tics. Both of my daughters and I have tics. We've never been diagnosed, but it's in the family. We have been able to keep them to a bare minimum merely by eliminating artificial colors and flavors from our diets. The artificial colors especially have a direct impact on our tic levels. If you read through some of the threads on this board, you'll notice that most of us have seen a connection with those additives and the tic levels.

You mentioned that your son's diet isn't all that great. If he eats a lot of artificial colors and flavors, you might want to replace those with natural alternatives... For example, many cereals that we eat are loaded with that stuff (Trix, Lucky Charms, etc), and many "juices" that we drink (Hawaiian Punch, Kool-Aid, etc). We're also just coming off of Halloween, so there might be a lot of candy in the house that normally is not so available (Twizzlers, Skittles, M&M's, ring pops, etc). Read labels and look for things like "Red 40", "Yellow 5", etc. You'd be surprised at the number of children who react to those additives, and in so many different ways.

Look for "all-natural" foods, or even "organic" - more expensive, and not always as good tasting, but the effects can be very dramatic. My girls' tic levels went from "bad" to "nearly gone" within a few weeks of removing those from their diet. It can be a big effort at first, but gets much easier.

For more info, you can check out the Feingold organization website at feingold.org

 

Best of luck...

Jeff

[ad_ccl]

Hi Brett,

 

I fully understand why you are trying the new antibiotic. In my experience we saw a difference in 3 days - over time though with extended use of full dose antibiotics - I think yeast did become a problem. My son was on full dose antibiotics for almost 5 months with no probiotic.

 

The test we did was the great plains oat test. Claire also posted about a spit test - if you do a search on that - you spit in water first thing in the morning before eating or drinking, or brushing your teeth - and if the spit has stringers (like legs) there may be yeast - if it floats in one glob it is fine ( I think) If you do a google search you will be able to find more info as well -including pictures. I think chemar may have put in a link once to a site - so you could also do a search here for spit test. Marie has also mentioned just the look of white on the tongue being an indicator - we all probably remember this from when our kids were babies - only one of mine ever had yeast - and his whole tongue was white.

 

For treating yeast - I think probiotics is one way - reducing sugar is another - and nystatin seems to be the prescription route - Marie has also mentioned something she uses in a recent post - can't remember the name off the top of my head.

 

For Mercury we did a hair test for heavy metals - I think there has been some discussion about it not being the best test - due to how kids excrete the metals - I can't help you on this one - but again - if you do a search on this site you should be able to get some info.

 

Probiotics should be given 2 hours after before or after antibiotics - I always wait a little longer to be sure. Antibiotics kill both good and bad stuff - probiotics helps make sure the good stuff remains. Very basic explanation.

 

Your son may still have PANDAS even if he gets worse on antibiotics - he may have issues with yeast and have PANDAS - so don't rule it out - in the end the diagnosis in a way does not really matter - what matters is you get the the route cause of it.

 

I saw you had posted a question to Claire - just to let you know she does not post here anymore - other than on a rare occasion - we all miss her tremendously - I know I do. She was an incredible support to me - and I credit her as well as others from this site for getting us on the right track. She has moved on to focus more on her own busy life - I can only imagine the countless hours she spent helping others here - and taking away from her home time. We are lucky that her posts are all accessible - so I would just keep reading and learning.

 

When you say your son does not have a good diet - does that mean he has a limited diet? My son had a terrible diet - until we went off the foods he was allergic to. He eats quite well now - willing to try new things. I am amazed how much he has changed in his eating habits since last year.

 

The no tv is definitely worth trying - Claire always cautioned about trying too many things at once, as the kids/parents may be unsure if tv was actually the trigger - if they get better off tv and on supplements for example - the kids/ parents may assume it is just the supplements that have helped. Although - sounds like your son is on board - and I understand wanting to do everything at once to make this all go away.

 

Glad you are hooking up with a naturopath - it really helps to have some guidance - I liked just knowing doses were correct etc.

 

Looking forward to updates.

[brett]

Hi to Allison (and to Jeff as well), thank you for your replies. Right now I am reading a lot of info from this site and just trying to gather info. It can be overwhelming! I did start no screens today and will do that for a week. I did get a prescription for Zithromax, but am holding off just a few days so we are closer to the end of the week/weekend so I can observe him while he is not at school. He is taking the Tenex still. He is stable right now but still losts of jerking/tics. I will do the yeast spit test in the a.m. I am trying to do one thing at a time. I did find a natural dr. near my home and will call to inquire about food allergy testing. They also do the mercury testing. I have the info for the Great Plains Lab in case spit test comes back positive for yeast. When I sais his diet was bad, I meant a lot of junky food/candy, not so many fruits and veggies. Again, my fault of course for not being more diligent! I will do a no sugar diet next week, no candy, chococlates, cereals, etc., to the best of my ability and see if that helps. I am waiting on any type of supplements as I do not want to add too much too fast and would like to see the natural dr. first.

After 3 weeks of this I have come to learn that I have to live with this and go slow to see what works. Thank you so much for your help and support. Brett

[Jeff]

Hi Brett, Like ad_ccl says, be careful not to try everything at once. Even one change can be stressful... trying so many at once would be extremely stressful.

If and when you do focus on his diet, don't feel like you have to eliminate all sugars and all candies. For us, sugar is not a problem.... it's just the artificial colors and flavors. Look for somewhere to buy all-natural candies, buy all-natural/organic cookies and cereals, etc. Even many flavors of Breyer's ice cream are okay (the black and white boxes, usually). Don't feel like you have to put a stop to all sweets - just find natural replacements. Most people who follow the Feingold program are not concerned about sugar, and are able to find many sweets and candies to satisfy our sweet tooths!

Squirrels-nest.com is a good place to order natural candies on-line. She might be really busy this time of year, but keep it in mind. Otherwise, just go to an all-natural store, or go down the all-natural aisle of your grocery store and look for things to replace what your son is eating now. If you have a Whole Foods store in your area, that would be a GREAT place to go shopping. You can buy nearly anything there without worrying about artificial additives.

If you have any specific questions, I'd be happy to try to help.

Jeff