Stephanie2

Good idea to do so! that's where I first detected the presence of strep in my 2 year old! Stephanie

I agree that you should add probiotics now before complications set in. Each of my boys (ages 2 and 5) take 400 bill cfu's per day (200 am, 200 pm), one to two hours away from antibiotics. It's a pain in the rear, but I wish I had done it a year ago. My kids had to develop yeast, klebsiella and clostridia infections before I got on board with the probiotics. These infections caused worse symptoms than pandas...severe aggression, etc. Not saying this will happen to your daughter, but why chance it? Here is the product we use: www.customprobiotics.com (D-lactate free formula) Best of luck to you and congrats on your success! Check out this website: www.pandasresourcenetwork.com Stephanie

Hi Melanie, Personally, it seems to me that with a cleaning they are releasing all sorts of bacteria into the bloodstream from the mouth. Could be a bit of an exacerbation if you ask me. Who knows, really? I think when I bring my son to the dentist I will also bring some ibuprofen!! Stephanie

I'm glad I could help in some small way. My boys have brought me to my knees (literally) so many times and I know what you mean about knowing that there is hope...sometimes it is all that gets us through the hard times.

Not to mention, soy can have an opiate effect on the brain which can increase tics However, my kids are on a lot of dietary restrictions and I have a hard time getting calcium into their little bodies! So I make the exceptioin with soy yogurt. I don't know maybe I should try cultured coconut yogurt (still has the strep in it but not soy). It's so darn expensive, though!!

The good news is that once these things are treated you will see a changed child. We have dealt with almost all of that and my kids are SOOOO much better now that their yeast/clostridia/strep, etc has been/is being treated. A lot of room for improvement!! Yay for good docs! and yes those peds can really be persuasive which is why we, as mothers, turn our heads when they inject our kids with the poisons that gets all this illness going to begin with And i'll end with that as i could go on all night about regular docs and peds and their &*%# vaccines!! Stephanie

Interesting...I think the jury is still out on this one. Our DAN practitioner does not think that s. thermophilus is an issue, but I feel like i notice some more tic-y behavior after my son eats his soy yogurt these days. I am still trying to see a definite pattern. After reading this, I am regretting that I put yogurt in his lunch box for gymnastics camp today

According to our pediatrician, most young kids get impetigo from strep. In our case, impetigo caused the worst pandas episode yet in my ds2... Stephanie

try www.pandasresourcenetwork.com Go to "healthcare provider info" it gives a good explanation about the ins and outs of pandas and how he can have an exacerbation even without evidence of strep, etc. Is there any chance he has gut yeast/bacteria from chronic abx use? That is what makes my boys most aggressive (ds5 had klebsiella per stool analysis, and ds2 had clostridia - both needed vancomycin to come out of the rages). Stephanie

Yes, we made a very big deal about how hard he worked and now he gets to go to kindergarten and he was so proud and excited to be the center of attention and get so much positive attention yesterday! I asked him how he felt on stage (he looked nervous), and he said he felt excited to graduate and "when do I get to go on stage again, mommy?"! Love to see my little boy lovin' life!! Only part that was sad is that daddy was not able to make it (out of town for work)...he would have been so proud. Stephanie

seems like it for my 5yo but not for my 2yo... Stephanie

It is antifungal, antibacterial and antiviral (possibly antiparasitic, not sure). I use it for almost everything! Works almost immediately. I even used it recently when I caught my son's stomach flu. I felt achy and fatigued and within an hour I felt so much better so I continued to use it for a couple days. Works well for sudden onset pandas for my boys (anti-inflammatory and kills strep - I have never tried it long term but it helps us get by until I come up with plan . Stephanie

Yes, it would probably help athlete's foot as it is also antifungal. However, I would gamble to say that if you/someone has athlete's foot, you also have it elsewhere in your body and you should probably also take it internally to kill all the yeast. BTW, make sure you get a good brand, they don't all work. I use Oreganol brand. Stephanie

Trust me I do plenty of projecting and fretting about the future. But I have learned to put my trust in scott and it has given me a lot of comfort that he seems to be able to pull us out of most crises!! Every day is different around here, but the overall trend seems to be moving upward, so that's what keeps me going... Stephanie

Last night my ds5 graduated from preschool, on stage in front of HUNDREDS of parents (140 graduates)! He did not cry, he did not tantrum, he sang his songs and he walked very normally across the stage and accepted his diploma! This is such an achievement for us b/c in the past he did nothing cry for me the whole time while on stage. There have been times that my husband and I have had to drag him out kicking and screaming (which has lead us to skip these type of events when we just don't have the energy for the drama). Just to recap, my son had IVIG in March (1 mg/kg) and then I increased his spironolactone 3 weeks later. He had about 5 weeks of remission of symptoms and then caught strep (I believe...fever, nausuea, sudden onset of pandas symptoms - did not get a culture just increased his zithromax immediately). Complete remission of symptoms within 24 hours, then a couple weeks later mild symptoms started to return so did a 3 day steroid burst, and that leads us to today. Not sure how far the steroid will take us but for now I am enjoying having a long break from pandas. Unfortunately, we have hard a more difficult time with my ds2. He has had ongoing infections for 6 months (staph, clostridia, enterobacter, yeast). He seems to be healing from the infections finally, but his pandas symptoms are still there. We did a steroid burst recently which remitted the symptoms fully for 5 days and then they came slamming back...not sure where we are going next with him but I am lining up the paperwork for IVIG just in case. For now I manage him with spironolactone, augmentin, ibuprofen, oil of oregano and curcumin (among other things that are not pandas-related). Stephanie

I mix 3 drops in about 1-2 tsp. of water and I add a little stevia (natural sweetener). I (and my boys) have actually grown to tolerate the taste. I syringe it into their mouthes and they don't even complain!! Stephanie

Very interesting, SF Mom. My 2 year old also has low WBC. I will have to bring this to the docs attention and see what he thinks. Anyway, both of my boys recently had staph (oh, and so did I ). My 5 yo still has it in his gut (per stool analysis). I do feel that it caused my 2 yo's worst pandas episode yet. Stephanie

Peglem, I am so glad you are seeing an improvement. Also, I wanted to say that when my 5 yo had IVIG in late March of this year (1 mg/kg), exactly 3.5 weeks post ivig is when he suddenly woke up a new kid! It was really amazing. However, I still don't know exactly what did it. The day before the sudden turnaround I increased his spironolactone (anti-inflammatory, immune modulatory) so I was assuming that is what did it. However, our DAN practitioner felt that it was a combination of both. He said that in his experience, the kids start to respond to IVIG right around the 3 week mark. I guess time will tell for us. Best of luck and keep us posted! Stephanie

My sons are on many of the same supplements as these other posters and then some (they both have ASD issues). But I did want to mention that we have had really great success with the following probiotic: www.customprobiotics.com (d-lactate free formula). Each of my boys (ages 2 and 5) get 200 billion cfu's in the am and 200 in the pm (1-2 hours away from abx). Stephanie

I am going to answer in all caps within your message:

Thanks for the update SF MOM! I will be following your story, as there are not many of us on this forum with "little ones" who have pandas. It will be interesting how they fare as they get older. For now, glad you have some peace in the home! Stephanie

All I can say is that my family (including my husband at first) thought I was crazy when I decided that my 5 yo had pandas over a year ago. Then when it was clear that my 2 yo had it, they REALLY thought I was losing it! Now one year later they are both being treated and are better off (not perfect yet...). Listen to your gut and don't let your family stop you from moving forward. YOU gave birth to these babies and God gave YOU the mother's instinct. The rest of them can kiss it!!! Stephanie

If you add it to cooking, do it sparingly (1-2 drops) b/c it is very strong and also you don't want to overdose your family!! Stephanie

Have you ever attempted biomedical interventions for your son (DAN protocol)? If not, now may be a good time. A typical PANDAS doctor will not look at things like yeast or bacteria that can be created in the gut with long-term antibiotics. I cannot say enough about our practitioner, Scott Smith, with www.icdrc.org Both of my boys have either been on the spectrum (or very close) and they are doing SOOO much better. My 5 year old is the closest to being 100% neurotypical than he ever has been. My 2 yo is fully recovered from autism but still has issues with pandas. Scott (and our previous DAN doctor) have worked miracles in my children. My boys get yeast and bacteria from the antibiotics. We, too, have to give antifungals (diflucan, ketoconazole) and sometimes vancomycin (5yo developed klebsiella, 2 yo developed clostridia, both of which cause OCD). They are both on high-dose augmentin for pandas. They each take 400 billion cfu's of probiotics daily, which has made a tremendous difference in their ability to tolerate the antibiotics. We also use spironolactone, which works a little like steroids, however it is safe to use long-term. It is anti-inflammatory and immune modulatory. This has made a remarkable difference in my 5yo and a decent difference in my 2yo in terms of pandas symptoms (also helped to bring about more speech in my 2yo). My 5yo has also received one IVIG and we may be doing more soon. Both of my boys have been responders to steroids. Best of luck! Stephanie

My 5 yo had 1 gr/kg IVIG in late March. We had turning back of pages with some of his tics that we had not seen in awhile - especially a cough-sniff thing he used to do. Within days of IVIG it started and then it took 2 months for it to slowly fade and go away... I am sorry you are feeling paralyzed...I know the feeling. My husband usually has to be the one to talk me down and pick me up!! Stephanie