Stephanie2

I have read that before and I have thought about it at times that I try to accept my life for what it is right now. With that said, in terms of pandas I think the "middle east" is more fitting than holland! My life feels like an on-going war that just won't end!

Thanks for posting this. I have read this or a similar post on the TS board and it really interested me. I have been unplugging our Wi-Fi when not in use but I have not switched our phone, although I intend to. I also want to get in the habit of turning off our cell phones, although my husband uses his for work. Maybe I can get him to "forward" it to our home phone while he is home. I think I heard that there was a study correlating Wi-FI with ADHD. Don't know what study it is, just heard about it from our previous DAN doctor. Stephanie

Congrats, what an awesome feeling to beat this awful illness! My son has a horrible time getting his hair washed and b/c of that I keep it relatively short and only wash it every other day or so. When I do wash it, I let him hold a wash rag over his eyes and tip his head back. He still cries/screams but he "lets" me do it which is progress for us. He used to bat my hand away... My 2yo, on the other hand, will NOT take a bath when he is in acute exacerbation. I have to bath him standing up, crying and clawing to get out the entire time. When not in exacerbation, he LOVES his bath and cries when I take him OUT!!! These crazy kids! Stephanie

Hate to say it but my son has had that as a tic twice now and it lasted about 6-8 weeks each time. It was definitely a tic. He did a throat clear and then a sniff. Just watch. My brother's kids have pandas, I just know it but if I insist on it at this point they will think I am obnoxious! If it ever gets bad again, I will insist that they get their girls tested for pandas (titers, cunningham, etc.). But for now I am allowing them to be ignorant to it b/c ignorance is bliss (although I do think one of my neices would greatly benefit from tx right now, but not a crisis at this point)! Lucky for them my boys have paved the way...they can get a quick dx and I already have the perfect doctor lined up. BTW, I think it is common for kids to get transient tics as they are growing up so maybe that is all it is. Stephanie

Welcome to the group! I wish you success on your journey! Anyway, my DAN doctor says that the kids don't react to the strep in probiotics, but I'm just going on personal experience that my son did react to a strep probiotic. I will read that link... Thanks, Stephanie

That's just awful that your son is pulling out his eyelashes! I'm so sorry! Anyway, here is my philosophy. During our first year of marriage, my husband and I realized that I had horrendous PMS and that was the source of many of our monthly arguments. Once I realized that I had this "anger/depression" problem the week before my period, I was better able to see it for what it was - MY problem, not my husband's. Knowing that what I was feeling toward him was due to hormones, I no longer took everything out on him (at least I tried ). Fast forward to my 5yo son's diagnosis a year ago. When he has sudden onset pandas and he feels terrible about everyone around him, I explain that it is pandas that is making him feel so sad and angry at everyone. I think it helps him to know that there is a reason for his feelings and that mommy and daddy are working very hard to make it go away for good. It makes him happy that I am consulting all kinds of doctors and trying all kinds of "medicine" to make him better. He has full trust in me that I am going to get to the bottom of it (no pressure there!). In fact, one night I was on this forum and he woke up and came out and sat by me on the couch. He said, "what are you doing, mommy?" and I told him that I was reading about pandas and he said, "you are a very good mommy"! I just felt for him that it meant so much to him that I was doing that! They are so much smarter than we think! Anyway, my mom thinks it's terrible that I told him he has pandas b/c she thinks that it gives him "license" to act bad, but he absolutely does not make excuses for his behavior. Every once in awhile he will say he did something b/c of pandas, and usually he is right. But I always tell him that there are still boundaries that are not to be crossed even if it is due to pandas. I tell him that he needs to be strong and act right even when it is hard. Do I make accomodations? Definitely, buy I make sure he knows there are certain things that are never ok... I'm not sure if that answers your question. I just feel that it is best to let them in on what is going on so that they don't blame themselves or others for how they feel. Now my 2yo is a different story! I hope that I never have to tell him!!

Here is some info about the use of spironolactone for immune modulation: http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf It has greatly helped my 5yo. Stephanie Dr. thomas Lin in irvine Ca. He was great. What is spironolactone? IVIG is our last resort. He said we can try to get the approval while he is taking steroids. I am really afraid of the steroids but Im assuming he knows what he is doing.

I'm sorry for your diagnosis. I have two boys, one was considered a borderline kid when it came to autism and the other we think had autism until we intervened (never brought him for a dx but pediatrician was concerned, etc.) Anyway, when I learned that my boys had pandas, I too felt overwhelmed, as if I didn't have enough on my plate! But then I realized that PANDAS is part of what has brought them to the spectrum in the first place and by treating it they each act more neurotypical. Each child is different, but I would say that by treating PANDAS my 5 year old went from an asperger-type child to a child who acts quite normal with his peers. Same type of effects with my 2 year old. I hope that you can get on top of this for your son. You are in a good place with this forum! BTW, do you have a DAN doctor? Ours is very good with PANDAS... Stephanie

Quite often I give my kids ibuprofen just to figure out if what they are doing is pandas related. The only time that ibuprofen has not dramatically improved the situation is when their aggression, anger, meltdowns, etc are due to gut bacteria and not pandas/autoimmune issues. Really helps me to figure things out, especially in my 2yo b/c with him it's hard to tell if it's terrible two's or what. I have learned that with him there is no such thing as terrible two's. There is always a reason for his meltdowns (pandas/bacteria). Once we treat it he goes back to being my little angel baby. Anyway, good thing we have ibuprofen, huh? Stephanie

peglem, that's what I would think, but I don't ever see a correlation between his chiari symptoms and his pandas. But as he gets older (and hopefully verbal) maybe I will see a correlation. They both wax and wane, but not at the same time. Stephanie Hi, Stephanie, Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on. Hope your older boy is feeling better. Michael Just a thought...it seems to me like inflammation would worsen chiari symptoms, wouldn't it? I mean, it seems to me that it would crowd the cerebellar tonsils even more than they already are.

www.customprobiotics.com not found in stores...just in case you are interested Thanks I'll try to find in health food store. Andrea

It could be part of the problem, but make sure you get him on another probiotic! We use Custom Probiotics (D-lactate free formula). It has made a huge difference in both boys in tolerating the antibiotics. Stephanie

Yes, Olive leaf should work, too. Also, Olive Leaf is very good for strep. Many parents use this exclusively to control pandas... I have heard that olive leaf causes yeast. i don't quite understand that since it also treats yeast. i am assuming you have to rotate herbs so that the yeast does not become resistant. It took a few weeks for the warts to go away, but that was taking the Oil of Oregano internally and not topically. I really think you have to take it internally to really wipe them out. Stephanie

My son seems to get worse tics from zyrtec, but the tics seem to improve with claritin... Stephanie

Just wanted to say that my son's addiction is fishing in the lake in our backyard. I mean this past weekend he fished for 11 hours one day, only stopped to eat (don't normally allow this, but we had nothing else to do). Coincidentally, or not, by the end of the day I noticed many pandas symptoms crop up and then when I was tucking him in - BAM - sore throat, nausea, mild fever! I started zithro right away... Point is...I do notice that when his pandas is under control, it is much easier to "avoid" fishing without a fight or meltdown. Personally, I think it is OCD related. Stephanie

Regarding fever and calm, I have heard that when a child has a fever the body's immune system is busy doing what it is supposed to do (fight an infection) rather than wreaking havoc by attacking the body (autoimmune). This is a very unscientific explanation, but that is what I heard. We have that same effect... Stephanie

My 2yo son's inflammation problems show up as diarrhea, gas and issues with digesting food (tested very low on all aminos, etc.). His stool analysis showed his Eosinophil X protein to be very high. Don't know much about that but doc said it can be caused by many things including celiac. I had him tested for celiac but he was GFCF so it would naturally come back negative. Yes, he is always bloated but he is always on those darn antibiotics! I think most of the bloating stems from yeast. I get it under control and then another abx comes along... I have never had a KUB, maybe I should. He poops twice a day right now, seems normal consistency and color. His tummy is slightly bloated. Should I be concerned? Good luck with the MRI results and let me know how it goes. Don't freak if there is Chiari (or anything else). At first, it felt like a death sentence but it has turned out to be a really benign problem for my son. He has had some issues in the past but I think he may be growing out of it, which can happen with some kids. I was told no contact sports for him...hope he doesn't mind! Stephanie

Oh, ok. Well, Ihope things get better. BTW you mentioned something about a QEEG for your son. Have you ever had an MRI? My 2 yo has Chiari Malformation which was detected via MRI. I hear from many sources that Chiari can cause sensory issues. In my son it causes light sensitivity, used to cause tactile defensiveness and causes occassional headaches. He has also had times of ataxia (could hardly walk for 36 hours back in Nov.). He is doing well right now and does not need surgery at this time . My 5yo has never had an MRI but he has had severe sensory issues come and go so we have considered having him checked for chiari. Just don't want to rock the boat by having him put to sleep right now (besides what would I do, have him go through brain surgery for SID? probably not, so we are on hold for that right now). I have to say, though, that pandas more than doubles his sensory issues. Just a thought. Stephanie Hi, Stephanie, Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on. Hope your older boy is feeling better. Michael

My 2 yo had strep in his gut at the age of 15 months, the time of his very first exacerbation. Found out by stool analysis... He had diarrhea, but I think other things were causing that. Stephanie

BTW, could the stomach/constip/diarrhea be from the abx? Are you giving enough probiotics to combat the abx? Stephanie

I don't think you need the ER, but I guess call the doc in the morning. I would say it is probably viral if he is on high-dose abx (like the stomach flu??). Or could be some bacteria that the abx does not cover. You can rotate and overlap Tylenol and Ibuprofen if one alone does not cover the fever. I think they say: tylenol, then ibuprofen 3 hours later, then tylenol 3 hours later, then ibuprofen 3hours later, etc... Hope this helps, Stephanie

Sounds very much like my 5 yo. His pandas episodes began at the age of 18 months. My 2yo started with pandas at age 15 months. Before that he was a little colicky due to reflux, which looking back I wonder if he just had pandas from birth, since he was pretty much exposed to strep right out of the womb from my older son. Anyway, my 5yo had VERY bad sensory processing disorder. Just like you said, very tactile defensive, but then would be very sensory seeking at the same time. Hates loud noise, but then makes lots of noise. Now that we have his pandas more managed, his sensory defensiveness is next to nothing which is HUGE! However, he is still quite sensory seeking and I 'm still trying to figure that out. Some other things that disappeared: ODD, anxiety, depression, irritability, separation anxiety, urinary frequency, anxiety around bowel movements (he was in pullups until age 4 yrs. 10 months). If your son does have pandas and you are able to get it under control, I would bet that 90% of the symptoms/problems that you are describing will disappear. My son is SOOO much better and I am pretty sure he will manage in a mainstream classroom this fall when he starts kindergarten. BTW, you said that you went to a biomedical doctor, are you referring to a DAN doc? Our first DAN doc did not pick up on my son's pandas and when I picked up on it, he did not know how to treat it/refused to treat it. I found one who did and we are so much better. Best of luck to you! Stephanie

If you don't mind, who is your doctor? Is it a DAN doctor? Many DAN doctors (if they are knowledgable about PANDAS) use the following for immune modulation: spironolactone, actos, LDN (low-dose naltrexone) and/or IVIG. We are using IVIG and spironolactone (and prophylactic zithromax, of course). Getting some good relief with those in both of my boys (actually, one of my sons is only on spironolactone and he is doing ok). Stephanie

Michael, I guess that means "no dice" on the spiro, too? Stephanie

I'm sure you will get some very good explanations, but in my experience it took about 2 solid months of studying the threads on this forum before I could understand it all. I would suggest going to the following website and click on "about pandas" and then on "healthcare practitioner" to get a pretty good explanation on how it all works: www.pandasresourcenetwork.com The woman who started this website is the mom of "sneezing girl" who was on the Today Show a while back. Our doctor is on the medical advisory board... BTW, my big "a-ha!" moment came when my sons' doc explained that many of the kids go on to react to anything that stimulates an immune response (allergies, viruses, bacteria, even a bad sunburn!). Before he explained that to me, I was going around chasing down positive strep tests and antibiotics and I couldn't understand why his symptoms were so up and down all the time. And that is why so many kids need to move on to IVIG and other things that regulate the immune system. Stephanie