Stephanie2

The Light - 8 Weeks and Holding!

I'm sorry I don't know. Maybe try googling...

Yes..I think getting the tonsils out definitely helps some kids, but it is not a universal "cure". There are some kids that seem to get less strep once they get their tonsils out. There are other kids who get their tonsils out and it turns out that their tonsils are shriveled/infected (despite long term antibiotics) or large/infected, so the tonsilectomy gets rid of that "nidus" of infection. I found out a high school classmate of mine has a son with PANDAS. He isn't 100% but getting her son's tonsils out a few years ago helped immensely. He's 10 now. Thank you both for this feedback. Still on the backburner as far as interventions go, but so far I'm not feeling it in my "gut", ya know? But hey, if we could even eliminate only 1 or 2 infections per year, maybe it would be worth it.

Michael, my son is still dealing with lots of adhd on his remedy. I think a lot of it is yeast, but I think some of it is just neurological which will probably be cleared up once they get up into the LM potencies of their remedies. pandas is gone, even the propensity to contract strep seems to be gone (chronic exposure now for 7.5 weeks in the house with no pandas problems for my 6yo). gonna pm you about a couple other things.

Aye yi yi, Pixiesmommy! That's a lot of strep! And a lot of interventions! I am so sorry! I thought I had it bad with one of us always positive! I will pray for you... And by the way, you add to my resistance to remove tonsils. Just doesn't seem worth it. I almost wonder if it is counterproductive for some people.

Sigh...yes...strep is our nemesis. Actually, ds6 seems to be staying clear of it this winter (hasn't had an active infection since Dec. and hasn't had pandas symptoms since Jan.), and I pulled out my 3yo from school b/c it seemed as though he was bringing it home. But we are still working at eliminating this last one that I think he got at school.

Vickie, I agree about the azith. In fact with this particular infection we did a sensitivity test after the azith did not work and it came back resistant to azith. Thanks for starting the poll. The more info the better.

Also, not all docs interpret it this way, but if DHPHPA (beneficial bacteria) is elevated, that can also indicate clostridia, even when HPHPA is not elevated. Once when my son's DHPHPA was elevated, we gave flagyl and the clostridia symptoms did go away.

The other thing is - are our kids developing "carrier status" and are in need of something like the addition of rifampin to the other abx? I really don't want to go the route of tonsillectomy, seems like no one benefits long term...

Everywhere I look (and I belong to 4 different message boards pertaining to pandas - 3 mainstream, 1 homeopathy) I am hearing about a TON of ongoing infections that are not remitting with multiple abx, and TONS of infections that are being contracted while on multiple antibiotics. I am in touch with one mom who literally has done 8 different abx in the last 3 months with no clearing of strep. And I'm not talking about remaining pandas symptoms, I'm talking about actual remaining strep infections with positive rapids and positive cultures. All of these threads I am referring to have positive cultures involved. Did I miss these threads before, or are they really all popping up all of a sudden? I am wondering if the universe/God is trying to tell me something, or is it that a real problem is developing all of a sudden, similar to MRSA or something. I am on the fence between continuing to clear strep with abx with my 3yo or abandoning abx all together and placing this situation in my homeopath's hands and closing my eyes and praying for the best. She said that the homeopathic remedy is going to keep bringing it back up until it has all been dealt with, so what's the point of continuing abx? He has been on 2 abx recently and still has strep (azith and augmentin). And although my 6yo has not contracted this infection after 8 weeks of exposure (assuming b/c of his homeopathic remedy), I just have to wonder when it is going to hit him and I am just playing russian roulette by allowing the strep to go on (not that I seem to have a choice here). Then I will really be in trouble if he gets it. BUT I seem to really be in trouble right now either way I go! I know most of you don't do homeopathy and don't know much about it. What I am really asking is: 1. Does anyone else feel that yes indeed there are more reports about resistance lately? 2. Does anyone have any idea as to what is going on with that? 3. Does anyone have any advice for me!????? And I have my own chronic sore throat to deal with (comes back each time one of the kids gets strep, but I never get a positive culture, but it remits with antibitiotics! maddening!). I am truly at a loss here and I feel like I need to make a decision and stick with it.

I have always wondered if I "believe" in the whole microbial strep exposure thing, meaning the kid reacts without actually contracting strep. Well, the experiences in my house in the last 7 weeks have certainly confirmed that this is very real. Both of my boys are pandas. My 3yo had strep untreated (long story) for a total of 5 weeks. The whole time this was going on, my 6yo was NOT on antibiotics (we have been doing homeopathy). There were 24 hour periods here and there where the following would happen: mild baby talk, mild fears, stomach aches and leg cramps and a mild cough tic. These are all his "early" warning signs that strep is in the house or he has an infection). The most amazing thing is that he would come home from school an within about an hour of being around his brother, these symptoms would crop up, one at a time. And by the end of the night he had all of them. But the next day they would be gone. Like I said this happened about 3 or 4 times. At one point about 3 weeks into the exposure, I was so darn curious about this, I took him into the ped to have a strep test done. Both the rapid and 40 hour culture were negative. He never did get infected. Yay for his homeopathic remedy, but my point to this is that it was so obvious that he was reacting to his brother (and me, I think I also had it for a few weeks there). In the past, these types of "reactions" would be almost as severe as the infection itself.

I often feel when I am talking to peds that I am talking directly to the AAP. I think in some ways they "work" for the AAP, liability reasons perhaps? So if the AAP doesn't fully embrace infectious agents causing psychiatric symptoms (and lets face it they don't otherwise they wouldn't be so opposed to the biomedical movement within the autism community) then the peds will not accept it either. Just my wild guess here!

Gotta wonder how much the EMF's play into the disturbance of the balance of things like this. Also, I noticed the chapter on magnets. Interestingly, I was told by my homeopath not to expose myself to magnets on a regular basis b/c it will interfere with my homeopathic remedy (also energetic). There is so much we don't know and can't see... Interesting... How is the other stuff going?

Sounds like you may have acted quickly enough. Here's to escaping the beast! Cheers!

My son used to respond that quickly to azith as well. He would be almost 100% within 24 hours. My younger son never responded that quickly to azith. I can sympathize with the whole carpool situation. I have reason to believe that the little boy that we carpool with not only has a problem with strep, but with pandas as well. He has had OCD since Sept when both of my boys had strep, and he himself had an ear infection. He also has autism (in my and his teacher's opinion). I mentioned the strep/OCD connection in passing to his mom and of course she looked at me like I had 10 heads. I worry all the time about the exposure, but at the same time, the boy sitting next to him could just as easily have it, ya know? BUT, since yours is a definite exposure, I guess it is best to play it safe until the child is better.

As many of you know I have been trying to get my boys of abx for quite some time b/c of the damage they have done to their guts (and not to mention the resistance issue, the prophylactic abx was not even preventing strep/pandas). I had a few ppl plant the seed of homeopathy with me and off I went b/c I had nothing to lose at that point. You may remember my post a few weeks back: ds6 was exposed to strep by ds3 for 5 WEEKS! He was not on any antibiotics or herbs, only his homeopathic remedy which was selected by our homeopath based on his specific pandas symptoms. The remedy worked. This is the first time he has been exposed to strep by a family member and not either contracted the strep or had a severe pandas reaction to it. There were a few nights that he had some very mild symptoms: mild fears only at bedtime, mild baby talk and stomach aches. No OCD, no emotional lability, etc. He was his usual happy self. One night I actually added in a strep nosode just to be safe, and those mild symptoms left by the next day. Another time I did not give the strep nosode and the symptoms still left by the next day. Point is that the homeopathy prevented symptom flare better than any abx ever has. And I'm not joking you that his little brother literally sneezed in his face, drank from his cups, all while positive for strep for 5 straight weeks! Almost too good to be true! I'm still dealing with a strep infection in my little one, 7 weeks later. He contracted the strep before we started his remedy. I am hoping that his remedy will prevent future infections like it did in my 6yo. Just throwing that option out there (sorry if I already mentioned it in the last thread, honestly can't remember).

I highly recommend Scott Smith in NJ: http://www.pandasresourcenetwork.org/about-the-foundation/medical-aamp-scientific-advisory-board.html

I still don't know what to think. I remember back when my 6yo (4 at the time) had hives for 6 months. It started after being sick (prob had strep looking back) and did not end until 6 months later when he got strep and I gave an antibiotic. But at the same time as the antibiotic he started the gluten/casein free diet, so I can't say for sure what put an end to the hives for him.

Are you sure he does not have strep?

Two weeks ago my son developed hives around his mouth after eating eggs. He then was breaking out when he ate things that had traces of eggs. I had to pull all of this from his diet. Today, he broke out in hives after eating...Annie's Organic Gummy Bunnies. I mean, COME ON! He has had allergic reactions before to peanuts and walnuts (in fact the walnut reaction was anaphylactic and covered his entire upper body including his tongue and lips, had to go to ER, do steroids, yada yada). Later his IgE food panel showed NO ALLERGIES! ALL of these reactions occured surrounding strep and the use of azith. All this time I have been suspecting some hypersensitivity (serum sickness, perhaps) from the azith. I am now wondering if it is the strep itself creating these reactions. I asked the ped about this and she has heard of hives with strep. But what I REALLY want to know is if you smart and experienced moms have seen this with strep and/or azith??!! Going for a culture tomorrow to see if the augmentin did not clear the strep (by the way, how about all these posts recently about multiple abx not clearing strep!? Getting a little scary!). Azith did not clear it a few weeks ago.

It hit me today that a week ago I made the following changes with his supplements: increased fish oil, and started high doses of Vit E and Vit D. I believe all of these have blood-thinning potential, and with his predisposition to belly issues, plus the augmentin... Guess I have discontinue all of this for a week or so. Follow up to make sure the blood is gone, etc...

I have had several comprehensive stool analyses done. One of them showed elevated Eosinophil X Protein. I did not further investigate, just went on with the DAN protocol to decrease overall inflammation. He definitely has tummy issues, has since the age of 4 months. I will try the aloe, good idea. What is DGL? Some kind of digestive enzyme? I probably need to drop an email to the DAN doc about this.

My 3yo has been on azith for 5 days, and when that did not clear the strep, he was then put on augmentin for 2 weeks. During the augmentin course, he developed (what I believe to be) a clostridia infection, diarrhea, reduced appetite (only wanting to consume carbs). He also developed a strong smell on his body that wouldn't even go away even after bathing. I assumed ammonia was elevated and I started some alphaketoglutaric acid and the smell went away. Yesterday was his last day of augmentin and today in his BM I discovered long strings of blood covered mucous (oh, I hope no one is eating while reading this!). It was still very soft, so I don't see why it would be blood from straining. Has anyone seen this? Could this be due to damage in his GI tract? Also, anyone know what I should do? I flushed the BM b/c I didn't see any point in having it tested for blood, it CLEARLY had red blood in/on it. I was thinking about collecting his next stool and taking it to the ped and maybe also sending some stool in to Genova for a microbiology analysis. Any other ideas? Oh, and by the way, I have a feeling that the augmentin did not clear the strep. I will have a culture done tomorrow. I don't see how I can give another abx with blood in stool, though. Always something!

I don't want to put words in his mouth, but Scott is a little more conservative about long-term high-dose abx b/c he has seen up close and personal the damage that this approach causes. As far as bipolar vs. pandas, your child sounds classic pandas. Either way, whether the bipolar is caused by pandas or some other cause, Scott should be able to help you.

I had this happen once with my 3yo, back in Sept. The rapid was a faint line. It was apparent by his sudden-onset, thought, that he definitely had something and Augmentin did a good job of pulling him out. Our ped later explained why she felt that this happened but I can't remember what she said. Something about the strep being "dead cells" meaning that since he had been exposed to azith that week (his usual prophylactic dose), whatever grew back from that was only able to show up on the rapid. I know I am butchering this and I meant to post this on the forum that day to let people know. The other thing is that we did once get staph aureus show up on my 6yo's culture. I am sorry, I don't know what type of culture was ordered but it was ordered a year ago by the local allergist. My 3yo had a staph infection of the skin at the same time. Also, my 3yo's culture came back with enterobacter species of some sort. What a mixed bag that was! All this to say that I do indeed think you should consider this positive for strep. I'm not sure, though, how you will get the sensitivity test. Our recent sensitivitiy report indicated resistence to erythromycin, and they assumed resistence to azith based on that (same class), which would be a correct inference since azith had failed earlier that week.