What is going on!

[Dedee]

Last week I thought I had it all figured out when I found that my daughter had peri-anal strep. I took her to the ped and she gave us Augmentin (dd never had that before). I was really excited thinking this must be the reason she had been doing so poorly and now maybe we would get some relief. Well, we did start seeing improvement after the first day and actually had about 2 really good days before all ###### broke loose. She was horrible all weekend.....raging for long periods of time, crying over everything, etc. So the kids were out of school today and she stayed home with her brothers. She called me at work wanting permission to do something and when I said no she started having a fit at home. She kept calling me over and over and finally I had to stop answering the phone because I was going into a meeting. While I was in the meeting, my son texts me a picture of my daughters bedroom window which was broken because she had thrown the phone at it when I didn't answer her call. Nice. So I had to call my husband to go home and deal with things. I just can't figure this out! What is making her deteriorate so badly? I guess I am mostly just venting. I just don't know what to do. I'm not sure I can wait another month for the appointment with Dr. B. I was looking into a LLMD that I had a lead on, but they are out of the office till Wed. I was hoping maybe by some miracle, I might be able to get in there sooner. This is just about more than I can handle and still work a full time job. Unfortunately, I can't quit because our health insurance comes from my job. I usually try not to have these pity parties, but I can't seem to shake this one. Thanks for listening. If anyone has any words of advice, I would greatly appreciate hearing it.

 

Dedee

[colleendonny]

Oh, no. I'm sorry. I do not have much advice, bit maybe you could set up a phone consult with Dr. B or one of the PA's? I'm not sure if insurance covers the phone consults...

Does your DD have Lyme?

What area do you guys live in?

[eljomom]

Hi Dedee-

I am also sorry I don't have advice either I can say that I totally relate to that let down after thinking "this might be the golden egg!" We've had that on a couple occasions, but it never amounted to anything for us. I also will say that when we first started trying abx for pandas, we did a month of augmentin, and I believe it made my dd worse too. I think I just read another post about this from a parent here recently too. Some will say "it is a herx, your child has LYME," but I"m a bit skeptic of that. I do think that some of these abx do have affects on glutamate---thinking augmentin is one of them, and wonder if that isn't part of our kids doing worse on it. I wish I knew more, and am so sorry that you are feeling that oh-so-familiar feeling of dangling off the edge of a cliff by a thread....

[tpotter]

Hi Dedee-

I am also sorry I don't have advice either I can say that I totally relate to that let down after thinking "this might be the golden egg!" We've had that on a couple occasions, but it never amounted to anything for us. I also will say that when we first started trying abx for pandas, we did a month of augmentin, and I believe it made my dd worse too. I think I just read another post about this from a parent here recently too. Some will say "it is a herx, your child has LYME," but I"m a bit skeptic of that. I do think that some of these abx do have affects on glutamate---thinking augmentin is one of them, and wonder if that isn't part of our kids doing worse on it. I wish I knew more, and am so sorry that you are feeling that oh-so-familiar feeling of dangling off the edge of a cliff by a thread....

 

 

In addition to abx, we have also been seeing a holistic chiropractor and LLMD. I think the whole thing combined has made a huge difference. Not that we don't have set backs, but not to that degree at this point. I think the biggest difference was when we added in the holistic chiropractor who does applied kinesiology (muscle testing,) and tells us what to take based on that. He has been so right on about so many things. This may also explain the glutamate issue, as we take gluatamate based on his recommendation. I know that sptcmom has mentioned this a lot too (via ART). What supplements are you taking, and how do you determine what to take?

[hawks]

This can be such a puzzle to figure out. Just wanted to let you know that I will pray for your daughter and family.

[MomWithOCDSon]

Hey DeeDee --

 

Two thoughts:

 

1. There was another thread a while back about Augmentin causing some behavioral issues in kids. Did you see that one? Now why, I can't imagine. But maybe it's just not the right abx for your DD?

 

2. On the other hand, maybe it IS the right abx and your DD is experiencing a sort of "herx" type reaction to it getting through to whatever microbe was lying in wait?

 

Can you hang in there a couple more days and see if some of this subsides? Do you have anything on hand you could give her to calm the waters in the meantime? Valerian? Something stronger via prescription, maybe?

 

As ridiculous as it sounds, too, I'd go after inflammation as heavily as possible since she's raging so badly. Try to break the cycle of the BBB being open, the "nasties" getting through, the behaviors continuining and stoking the inflammation, the BBB being open, the "nasties" getting through . . . etc.

 

Hang in there!

[butterflymom]

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Edited October 7, 2015 by tampicc

[LNN]

My son's worst rages were when he was on tindamax. A thought would pop into his head and he had to act on that thought immediately. For example, "Mom, let's get in the car and go buy me that Nintendo DS". "But you haven't saved enough money yet and it's 30 min before dinner and I'm not about to get in the car and get you a DS". "But we NEED to. We NEED to go NOW!" "No." "You are the WORST mother ever! I HATE you! Now get in the car and drive me to the store NOW!" 45 minutes of kicking, screaming...and then it was as if it had never happened.

 

For us, yes, it was certainly a herx response. We eventually had to stop the tindamax. But it's happened with other abx as well, to a lesser degree. Omnicef kicked butt for awhile but we were able to slog thru it. If you decide to push thru for awhile longer, you can try to 1. give stuff to mop up toxins (many dying bacteria release toxins, not just lyme) and 2. reduce inflammation.

 

For detox, we use milk thistle to cleanse the liver (the liver and kidneys are the major detox organs) and resveratrol, which helps with detox and inflammation. I am really liking both of these. We have also at times used bentonite clay or activated charcoal to mop up/bind garbage in the intestines and we use 200 mg/daily magnesium to keep BMs moving, to keep the junk moving out of the body. Lots of water helps clear the kidneys. Some people like lemon water.

 

Another thought would be to pulse the augmentin for a few days - one day on, one day off, or reduce the dose - maybe half a pill - to see if you get relief. It's an alternative to stopping completely.

 

I hope it passes quickly.

[missionmom]

Is she on any probiotics to control candida/yeast build up during a course of antibiotics? One of my DS was way out of control emotionally whenever the candida was out of control. This would be followed by a heavy brain fog and achey flu-y feeling for a couple of days as the probiotic crowded out the bad stuff and created a die-off reaction. Hope whatever it is calms quickly.

[momcap]

I can't count how many times DS broke his bedroom window, his brother's window, the playroom window. It started when he was 3!!! One time he put his hand right through the window and had some pretty serious cuts. I hear your "pity party" and I sympathize completely. You need a safe place to vent where people can listen and really get it. I can't imagine how difficult it must be to have to work at the same time that all of this is happening. Hang in there. You will get to the right doctors and you will get the help your DD needs. You're doing an amazing job so far and she's lucky you're her mom!

 

My DS8 raged non-stop for the entire month that he was on Augmentin. I don't know if it was a terrible herx or if it was a bad reaction to the medication. We were working with Dr. T and we didn't know he had lyme at that point. As soon as we stopped the augmentin he calmed down. But then we tried a month of Biaxin and he raged again. Only this time he got strange rashes, fevers, and grossly swollen joints. That's when we realized it was lyme - no history of tick bite, we're not in a lyme endemic area, and we had no clue! But his lyme test came back positive and he's responding amazingly well to lyme treatment. He's gone from non-functional last year and missing most of grade 2, to functioning well, caught up academically and making friends this year. He's not the same kid.

 

He also gets extremely agitated on bactrim. I don't know if these meds are doing a good thing by hitting the infections hard, or if it's just a bad side effect of the meds. But either way, we have to be able to survive during treatment, so we made changes to different antibiotics that he tolerates better. Also, having a good detox plan has helped tremendously - we use some herbal detox combos from Nature's Sunshine.

[Dedee]

Thank you so much everyone. Last night wasn't too bad. She was mostly very humble because she knew she had done a really bad thing and I think was very afraid of my reaction. That wont last long. LLM, your description of a conversation with your son is almost identical to some of the incidents that we have. So frustrating. I have her on milk thistle for detox but havent heard about resveratol. I may try that. She is on Gutpro 50billion units for probiotics and I try to get her to drink lots of water, but I doubt she gets enough while she is in school. I'm going to try to stick it out on the Augmentin I guess. The ped only gave me a 10 day supply so I will see how things go after that. I just really think we need to have more testing. There must be something else at play here or this myco / strep combo is really doing a number on her. I just can't get to another doctor quick enough. I guess you all know how that feels. Thank you all so much for being here for me and your kind and supportive words of encouragement. You all are my rock!

 

Dedee

[Mary M]

Dedee,

So sorry to read your story...we met at the meeting in Indy. Recently, our dd started a full range of supplements based on blood work and urinalysis with a MD who also specializes in holistic medicine. We are now just over 3 weeks into the supplement regime, continuing on prophy dose abx, and we are seeing quite positive forward movement in function. So, perhaps finding just the right supplements...oh, and dietary changes (the testing suggested which foods to avoid) along with abx could bring some future relief...but, as we all know...our kids deserve relief immediately! So, the LLMD may be a great next step.

Mary

from Michigan