Update - now reacting badly to abx

[momcap]

I'm wondering if anyone has had a similar experience or can shed any light on our experience?

 

DS7 was sick in August - sinus infection, followed by strep throat (positive culture), followed by sinus infection. Our whole family ended up sick with sinus infections and strep throat. DS had 5 different courses of antibiotics over 2.5 months because the infection seemed to move to a new place instead of clearing. Everytime we tried an antibiotic he had a miraculous transformation from OCD, ODD, mood disorder, GAD, SPD, and chronic pain, to perfectly normal and happy. We saw a little boy we didn't even know existed underneath all the difficulties. Most amazingly his chronic pain and sensory processing disorder just disappeared. He has been miserable and difficult since birth, so there was no sudden onset here, just obvious major exacerbations, which are sudden and dramatic. We also started investigating PANDAS during this time, and found high ASOs in the 500s, CamK 176 & anti-dopamine I at 4000.

 

So, we had labs suggesting PANDAS and amazing transformations with each abx, but these transformations ended abruptly when the antibiotics ended (penicillin, zithro & amoxil all worked the same). I was able to convince our pedi to prescribe prophylactic amoxicillin (not my first choice, but I was happy to get what I could get). DS was doing amazingly well on it. The principal and teacher called to ask what we were doing because he was a different kid. Amazing! Then we got ahold of a PANDAS doc, recommended on this forum and moved him over to Augmentin. That was an overnight disaster. Literally overnight, we had a raging, aggressive, manic, crazy child. We held on for a month as the doctor strongly suggested, but ended up pulling DS from school as he was not functional and was incredibly aggressive. He punched a boy in the head, was throwing children around at recess, kicked over his desk, cursed at his teacher, etc. What a nightmare!

 

Within 24 hours of the end of Augmentin he went back to the calm and happy boy we never knew we had. Then PANDAS doc says to try Biaxin. (Myco-P labs are not available in Canada, so we're going forward under the assumption that he might have myco-p.) This is day 3 on biaxin. Again, he's miserable. This seems like a complete 180. Aug-Nov he was 100% better on abx. Nov-Dec he's 100% worse on abx. What on earth is going on? Has anyone had a similar experience? We are also looking into Lyme. I'm not sure if there is anything else we can or should do at this point, but would appreciate knowing if anyone else has experienced this.

 

Thanks!

[Fixit]

i have personally not had this experience....but will do my best...

(not much of a christmas mood here...with new reality of 3 panda boys)anyway...

 

1 it could be herxing...

2 the dose could be wrong....

3 have you tried going back to the abx's that worked...some children do better on on different abx...so you may have to return to prior type

4 i would not jump the gun yet...but i think at certain ages and after numberous infections(jmho and experience) that it becomes autoimmune...so regardless of abx, dose, type...something more may be needed....ie ivig, pex, steroid

5 now that you have done several abx for extened period of time...if you wanted to try...i would feel safe in trying a steriod taper..(i don't like bursts)(i'm not a doc...just my experience..i think always a taper, even if it's a week long taper)...just keep an eye on yeast as steroids can reeealllly kick it up big time and that can be a whole other problem

 

hope this info holds you till someone else can offer something

[dcmom]

I tend to agree with fixit- do what works.

[LNN]

One simple experiment you can try is to give activated charcoal for a few days. If it's some sort of herxheimer reaction where a bacteria is being killed off and releasing toxins, the charcoal will absorb some of the toxin and might give you some relief. In the US, you can get charcoal over-the-counter at any health food store without a prescription.

 

The charcoal is like a sponge and will absorb things indescriminately. So I'd start with only one pill a day, taken as far away from your antibiotic schedule as possible. You don't want it to absorb the abx. So maybe one capsule at lunchtime? Also only start with one. Charcoal can be binding and too much can cause constipation. So increasing liquids would be a good idea just to ward off any problems.

 

It may not help. It won't tell you which bacteria you're fighting. But it would be a quick "test". An improvement in say, 3-5 days, would indicate that your new antibiotics were actually doing their job and the behavior you're seeing is "just" a herx reaction. There are other supplements that are recommended to help the body "detox", but the charcoal would be an inexpensive way to test the herx theory.

 

The good news is that you've seen the boy who's really inside and others have too. Hold on to that and know in your heart that you can get that boy back.

[Stephanie2]

I agree with the activated charcoal test. Try that and let us know what happens. For my 6yo, he is a changed child within20-30 minutes of 2 AC capsules (if there is an active intestinal infection, which can be caused by high dose antibiotics).

[mom love]

I was thinking exactly what LLM wrote about having found your boy inside. You now have hope. That's a huge step, try to keep that in mind with the setbacks.

 

LLM's information about the charcoal sounds really good to me. I had not realized that about charcoal. I have been wondering about the possibility of herx or yeast in my dd 8. LLM and Stephanie, do you think it could soak up yeast in the gut as well? How would I give it if my dd does not swallow pills?

 

Momcap, I would say you could try the charcoal. If that is not something you can get or are uncomfortable with that idea, if I were you, I would go back to what was working, with the amoxicillan. Herx or not, those are some severe changes your child has had.

 

My nonpandas child had frequent urination for a long time, and in an effort to avoid having missed an infection, our doctor gave him 2 weeks of augmentin and he became much worse on it. Perhaps there is a dye or something in it that affected him. Perhaps it was a herx, I don't know but we did not want him on it for any longer. Our conventional pediatric urologist actually told me that children can have strong sensitivities to dyes and food additives in liquids (and foods I assume as well) and that alone can cause frequent urination (once all other things like UTI infections and urinary flow problems are ruled out). I did some research on that and salicylate sensitivity came up almost all the time with my search of dye sensitivity in the bladder. Our son had had alot of dyes and blueberries and pineapples all in a short amount of time. We have stopped all antibiotics and eliminated all dyes and most salicylates and he is better now. That could change tomorrow, I know, but perhaps some children have these sensitivities that eventually affect their immune systems that then contribute to the onset of pandas or pitands etc. For now, I believe my son is better on no abx and no salicylates. BUT he has normal titers.

 

With your child's high strep titers, I would say you definitely need to keep up an antibiotic for a long while. You could ask your pandas doc about full strength amox instead of prophy dose for a while to try it. Let us know what happens.

[momcap]

LLM - I didn't know about the charcoal. Thanks so much for that idea! I will definitely give it a try if I can get it here. I'll check the health food store when it opens tomorrow. And I will let everyone know how it goes. Fixit - I agree with all of your points (although IVIG and PEX sound scary). I will bring them up with the PANDAS doctor during our next discussion. Hopefully the charcoal works and we will know the abx are killing off something.

 

Thank you so much everyone for your replies! You have lifted my spirits! Merry Christmas!!

[LNN]

do you think it could soak up yeast in the gut as well? How would I give it if my dd does not swallow pills?

I don't know as much about yeast as some members. So it's only my guess, but I think the yeast would have to be killed off before the charcoal would have any effect. I don't think it's effective in actually killing the yeast by itself. The charcoal would be effective at mopping up as the toxins (from yeast and other bacteria). But charcoal will also absorb nutrients, antibiotics, supplements...so timing is important. It also absorbs moisture, thus take care to avoid constipation by drinking and not taking too much charcoal. Mentally, I think of it as swallowing micro sponges.

 

My daughter may be having yeast issues (test results due this week) and our doctor had her take Theralac TruFlora - which is a probiotic that supposedly kills yeast. It's not a probiotic you're supposed to take every day. She took 1/2 a capsule for one week, then a full capsule for one week and now will take one capsule twice a week prophylactically (to take a 1/2 capsule, you empty half the contents then put the capsule back together). It seems to have helped and for a few days we had some ramp up in emotional issues - a charcoal taken mid-day seemed to help. If your dd won't swallow a capsule, you can open the capsule and sprinkle the TruFlora into a food. Probiotics might be a little less effective when taken with food, since the stomach churns up more acid with food and that can kill more of the probiotics before they make it into the gut. So I'd probably suggest taking with a light snack or maybe a smoothie/drink yogurt rather than a full meal.

 

As for the swallowing pill issue - I'm not sure if there's a good way to get charcoal ingested outside a capsule. No expert on this, but I think of charcoal as a sponge and this makes me think if you mixed it with something, it would absorb the moisture in the food before it ever hit the gut. But I could be wrong. An alternative is bentonite clay, which is a liquid and can be mixed with things. But it may change the texture of things and I don't know if it has a taste.

 

Pills for the younger crowd has been a topic many times. Two things helped my kids. First, we practiced swallowing tic tacs, or in some cases, one Motrin (if your child is old enough for a 200mg dose). No biggie if these get spit out into the sink (unlike precious antibiotics). The second thing that helped was both of my kids take a sip of water first, and then put the pill in their mouths and swallow. This is the reverse of how most adults take a pill. But adding the pill after the water seems to keep the pill from dissolving on the tongue and tasting bitter.

[LNN]

I'll check the health food store when it opens tomorrow.

 

I would think it would be easy to get - you could even ask your pharmacist. It's one of those things that I think can be used for poisoning when it isn't safe to induce vomitting. But if you can't find it locally, you can probably order it online. I wouldn't think it would be a cross-border issue or safety concern. I really hope it helps! Wouldn't "Relief from pain" be an awesome christmas gift for you and your son!

[philamom]

I think Bentonite Clay (we use Great Plains Detox) works the same as activated charcoal. You can mix a tbsp daily (or every other day) with applesauce. It can be purchased online and at some health food stores.

[sptcmom]

Augmentin liquid contains aspartame and clarithromycim (biaxin) liquid contains phenylalanine. So those can cause an adverse reaction in some kids.

Also Biaxin is a strong macrolide plus antiinflammatory. It can cause a good strong Herx reaction.

So I would check those out and yes the detox test is a very good idea. Strong herxs are considered good overall but need to be controlled with adequate detox and drainage. If inspite of detox the herx isn't controlled then a lower dose maybe indicated, something the little body can handle. Liver drainage support with Livertone is a good idea. Milk thistle can interact with Biaxin so stay away from that one for liver support. Vegatables like cauliflower, cabbage, brussells sprouts. broccoli etc also hlp with liver detox pathways.

[Cristo]

I'm wondering if anyone has had a similar experience or can shed any light on our experience?

 

DS7 was sick in August - sinus infection, followed by strep throat (positive culture), followed by sinus infection. Our whole family ended up sick with sinus infections and strep throat. DS had 5 different courses of antibiotics over 2.5 months because the infection seemed to move to a new place instead of clearing. Everytime we tried an antibiotic he had a miraculous transformation from OCD, ODD, mood disorder, GAD, SPD, and chronic pain, to perfectly normal and happy. We saw a little boy we didn't even know existed underneath all the difficulties. Most amazingly his chronic pain and sensory processing disorder just disappeared. He has been miserable and difficult since birth, so there was no sudden onset here, just obvious major exacerbations, which are sudden and dramatic. We also started investigating PANDAS during this time, and found high ASOs in the 500s, CamK 176 & anti-dopamine I at 4000.

 

So, we had labs suggesting PANDAS and amazing transformations with each abx, but these transformations ended abruptly when the antibiotics ended (penicillin, zithro & amoxil all worked the same). I was able to convince our pedi to prescribe prophylactic amoxicillin (not my first choice, but I was happy to get what I could get). DS was doing amazingly well on it. The principal and teacher called to ask what we were doing because he was a different kid. Amazing! Then we got ahold of a PANDAS doc, recommended on this forum and moved him over to Augmentin. That was an overnight disaster. Literally overnight, we had a raging, aggressive, manic, crazy child. We held on for a month as the doctor strongly suggested, but ended up pulling DS from school as he was not functional and was incredibly aggressive. He punched a boy in the head, was throwing children around at recess, kicked over his desk, cursed at his teacher, etc. What a nightmare!

 

Within 24 hours of the end of Augmentin he went back to the calm and happy boy we never knew we had. Then PANDAS doc says to try Biaxin. (Myco-P labs are not available in Canada, so we're going forward under the assumption that he might have myco-p.) This is day 3 on biaxin. Again, he's miserable. This seems like a complete 180. Aug-Nov he was 100% better on abx. Nov-Dec he's 100% worse on abx. What on earth is going on? Has anyone had a similar experience? We are also looking into Lyme. I'm not sure if there is anything else we can or should do at this point, but would appreciate knowing if anyone else has experienced this.

 

Thanks!

 

You said that he got better on amoxil, so go back to what worked with him. Too bad about the doctors that put him on other stuff that made him worse. It could be the herx that people talk about. It could be the dyes. It could be that his body works best with amoxil. My ds7 was on azithromycin last year for a few weeks, and he ended up having some weird terror attack when he woke up one day or something at the end of those weeks, and I pulled him off the azithromyin that day. Naybe it was the herx effect then. I don't know....but it was weird. He tells me now that he thinks that he was still asleep. He remembers the rage. So he raged after a few weeks on the antibiotics, which freeked me out. He raged that morning, and then never did again. It was a sign to me that he had enough of the antibiotic for his body.

 

He stopped with the sinus infection, the extremely loud breathing at night, with the chest pains, with the strep, with the coughing after a few weeks of high dose azithromycin. My son cannot be on biaxin, which is in the same family as azithromycin. So who knows... Maybe go back to amoxil. If it worked...do it again. That's what I do now. Azithromycin is my choice, not any other one. It is the one that works. It kills off all kinds of things like sinus infection, pneumonia, strep, ear infections etc. My son cannot be on amoxil because he gets an itchy rash. So, azithromyin is the only way to go. What does your mother instinct tell you? What kind of stuff have you gathered from this forum to help you decide?

 

This forum helped ds7's mother, who used this forum in the summer to figure things out.

[Cristo]

Augmentin liquid contains aspartame and clarithromycim (biaxin) liquid contains phenylalanine. So those can cause an adverse reaction in some kids.

Also Biaxin is a strong macrolide plus antiinflammatory. It can cause a good strong Herx reaction.

So I would check those out and yes the detox test is a very good idea. Strong herxs are considered good overall but need to be controlled with adequate detox and drainage. If inspite of detox the herx isn't controlled then a lower dose maybe indicated, something the little body can handle. Liver drainage support with Livertone is a good idea. Milk thistle can interact with Biaxin so stay away from that one for liver support. Vegatables like cauliflower, cabbage, brussells sprouts. broccoli etc also hlp with liver detox pathways.

 

Does the generic amoxil and the other ones you've used, have dye as well? I just discovered that the generic azithromycin liquid doesn't have the red dye that the brand name has.