Stephanie2

When my sons had their ear tubes put in, they both came out of the anesthesia very disoriented and crying and almost terror stricken. I don't know why they reacted that way but I saw some other kids doing that, too. I do think it is a common reaction to the anesthesia. But I do have to say that you have me worried b/c my DS2, who's pandas is not very well controlled at the moment, is scheduled for abdominal surgery next week. I was also told not to give ibuprofen (in fact all of our pandas crutches will be gone for a few day!), so I am not looking forward to it. I am very concerned that he is going to go into a very bad exacerbation for one reason or another... And as far as the night terrors are concerned, my DS5 used to have them when he was taking singulair. As soon as I stopped it he never had night terrors again (unless of course he gets strep, that's usually one of the first signs). Maybe the anesthesia has not completely cleared his body yet... Stephanie

Since Fixit bumped this back up, I will give an update on my son's taper since today was the last day. I would say that there is at least a 50% improvement in obsessions/compulsions. The big compulsion was to pick at his lip and ears until they bled/got infected! This went on for 6 months and with the steroid that is gone. However, we are nowhere near 100% so we will keep moving forward. Tonight I am starting LDN and I am also preparing paperwork for IVIG coverage... Stephanie

Lisa, I pulled my son out of school about 6 months ago to give his immune system a break. I thought that maybe with less strep exposure, things would settle down. Unfortunately, it did not work as planned and I enrolled him again a few months later. Both of my boys have pandas (2 and 5) and actually they both went into terrible exacerbations while they were both home with me (and if I did take them out it was not to places where they would be likely to get sick, and I followed them around like a lunatic with sanitizing gel ). So, they kept getting sick anyway... Just my experience!! Stephanie

Regarding packing lunches for school, I think it depends how far you are going to take the diet and why you are going to do the diet. Are you doing it b/c gluten in general is not good for you or are you doing it because of the opiate-effect it has on the brain? If it's because of the opiate effect, they say that you have to do all or nothing (meaning eliminate every last crumb of gluten, the slightest exposure will wreak havoc for a week or so). If you are going to be THAT strict about it then you will find that much of the food they serve at school does have some percentage of gluten, even a plain hot dog with no bun. Also, if you are doing it to eliminate opiates, you may want to consider going casein and soy free as well. Don't mean to overwhelm you even more, just thought you should know!! Stephanie

I was reading the "rage" thread and it really got me thinking about my boys. DS5 has never had "rages/aggression" with pandas, they are more like "meltdowns/crying". However, DS2 seems to have more rage/aggression linked to exacerbations. I know that he became very aggressive with a clostridia infection, but I think that is gone now. DS5 tested negative for myco p. Do you think that it is likely/possible for DS5 to have tested negative in the past week and for DS2 to be positive? Maybe I should have him tested... Stephanie

Thanks for the support and yes thank God we have a place to vent when a bad day hits. I work so hard to remain positive and look at the progress we have made (and there has been a lot of progress), not the progress that has NOT been made. I have a ton of confidence that my boys will one day be very normal, even better than normal with all they have to overcome. But on a day like that where my own flesh and blood little neices and nephew are running around happy and healthy, it's hard to not understand why they got the good genes (or in my nephew's case, maybe he was spared BECAUSE of my boy's problems b/c my SIL stopped the vaccines after watching my boys go downhill). I would NEVER want it any other way and I truly mean that. I love my brother and SIL and never want to see them go through what we have been through. BTW, I have to mention here that my 5 yo has been in such a good place lately and he was so good and happy at the park that day. He was interacting so nicely with my neices and he was just all smiles. I had such mixed emotions sitting there watching him so happy and my 2yo so miserable. I feel blessed that we are finally getting somewhere. It's just that this severe presentation of pandas with my 2yo is very new and it is hard to watch my second boy go through this...only so much suffering one mommy can watch, ya know? Stephanie

An integrative medicine doctor does bloodwork/urine/stool, whatever, to try to get to the root cause of chronic illness. They test for things that a traditional MD would not. For example, here are the things that my MD found: (almost) anemic, low magnesium, low CoQ10, low DHEA, low testosterone, low progesterone, borderline thyroid issues, high blood sugar. They also interpret the lab results differently than a regular MD. For example, I was not "officially" anemic or diabetic by Quest Labs reference range, but he said I was close and that I would not feel better until we got the iron way up and the blood sugar way down. Most MD's would look and see that I was "within range" and would blow most of it off. I feel so much better since having these things corrected. I no longer have the severe allergies I used to struggle with, I no longer have asthma (flares maybe 3 days per year instead of daily), and I no longer have severe PMS, I no longer get sick EVERY time the kids get sick, etc...Oh, and I manage stress SOOOO much better than before! And to give you an uneducated answer to your question: I don't see why you can't have narcolepsy and RLS. RLS usually occurs at night and narcolepsy usually occurs during the day, right? Just a guess... Stephanie

We have a strong family history of pandas (both of my boys, and I suspect my neices and my cousin's son, have it) and also of RLS...who knows maybe there is a connection. I will say this. I have RLS. It got very bad when I was pregnant. However, since I have treated my low iron levels it is basically gone unless I go a few days without my supplements. Maybe you should go see an alternative/integrative medicine doctor (a reputable one) and have a ton of bloodwork done. That has done wonders for my health overall... Stephanie

strictly venting here and I have to preface this with the fact that I LOVE my neices and nephew as if they were my own...truly But...spent the whole day with SIL and her kids. We both have 2 year old boys only 3 months apart, mine has severe pandas, hers is relatively healthy, mind and body. Mine has speech delay, hers is talking in full sentences. Mine is sensory sensitive (sound, tactile), hers was a trooper about getting sunscreen on and running through the fountains today. Mine has multiple tantrums, meltdowns, aggression and chronic whining. Hers is easy going and compliant. Mine has an abnormal gait and low muscle tone, hers is robust and strong. Mine ran away from the group, hers fully interacted. Mine fixated on DVD's in the car, hers whined just a little in the car. Hers would eat his own french fries at mcdonalds, mine HAD to eat MY french fries or there would be #### to pay. Mine requires multiple hernia corrections in a couple weeks and screams bloody murder when I change his diaper b/c of it. Hers is fully potty trained. Mine needs me to hold his ears in the public restroom (no easy feat when I am the one who has to go - and if I let go for a second he has a meltdown), fixates on the potty, the soap dispenser, the water, hers just goes potty and moves on. Mine requires every second of my attention, hers allows her to sit back and take fun pictures of them... I could go on and on...it was just so sad to see my son suffering today when he should be "running in the fountains" and enjoying being alive! He is a miserable little baby and it breaks my heart to see my boys suffer so much! I have a hard enough time dealing with the lack of normalcy in this house, but to be slapped in the face with the sharp contrast of my boys and her healthy kids was more than a little depressing today... please don't get me wrong. I am so happy to see my nephew happy and healthy, and I think it is in part b/c I begged her to stop vaccinating in light of what has happened to my boys. she did stop vaccinating and I tryly believe that is why he is thriving. It just hurts...

Wow, Peg! Awesome news! As another mom who has struggled with autism in both kids (mild and undiagnosed), I can relate to the "halt of development". I don't think my 5yo's development has been affected very much, he tends to just keep on plugging between exacerbations. But my 2yo is very severe in his exacerbations and it does appear that he has very few words during those times (but then again he also has chiari malformation that waxes and wanes, clostridia, yeast, mitochondrial dysfunction, hypotonia and the list goes on and on). Our DAN has found many underlying issues, but I really believe that PANDAS is a huge piece of the puzzle for him. He is just blessed that big brother brought the whole thing to our attention so that we could get on top of it early. It will be so interesting for you to watch her development from here on out. BTW, my son (5) asks many why questions when he is not in exacerbation. It's like he is trying to soak up all the knowledge he missed while he was "gone". What a huge milestone! Stephanie

with some of the worst supps I put them into a little chocolate syrup or maple syrup (I know, oh so healthy). Also, apple juice or grape juice with some stevia to sweeten it. Stephanie

We used lidocaine on both of my boys on their last blood draw and it really helped, my 5 yo did not feel the needle going in. There were no problems with veins... Stephanie

Something that really helped me when I was starting out with my kids is the yahoo group titled: GFCFkids. There are thousands of well informed members...for example if you need the name of a gluten free toothpaste, etc, you just post the question and you will get lots of responses. I was overwhelmed the first couple months but I do believe it is one of the key things that pulled my 2yo out of autism so we just kept on plugging and now it is basically second nature. Best of luck!

Both of my boys at times have rages. With DS5 it was linked to a klebsiella (gut bacteria) infection. With DS2 (tantrums/severe aggression) it is linked to strep and ESPECIALLY clostridia infection. Vanco takes the rages away if not strep related. By the way, these things developed due to long-term high dose abx, so in treating pandas we ended up with much worse problems. We have those infections under control now. DS5 tested normal for myco, did not have DS2 tested for myco.

Amber, we are kind of in the same place right now with our 2 year olds. I don't remember what I told you last, but here are some thoughts. When you added ketoconozole, do you think that clostridia (or any other bacteria) moved into it's place? I know that happens with my 5yo sometimes. Remember that bacteria can also cause OCD. Also, I had an appt with Scott yesterday and he told me to give some apple cider vinegar with ketoconozole b/c the acid will help to activate the keto (not true for diflucan). Also, does she have a virus or something that may be triggering the pandas behavior? It's not always strep... My 2yo is a terrible mess right now. We are tapering off the steroid and his OCD (severe) seems to be coming back. I dont' know if his speech delay is a curse or a blessing with OCD! He just points at things and whines ALL DAY LONG. He tells me where to sit, what to eat, what DVD to play (and wants me to switch it 1000 times a day), etc...it literally never ends. Sometimes I just put my foot down and say "no!" to all this, but it just results in a tantrum/aggression or he just keeps on whining. I literally can't win when he has OCD and I can't get a darn thing accomplished! Some other things that Scott recommends for the OCD (temporary measures, of course): ibuprofen, tryptophan, tenex. This is what I did today so that he would calm down and take a nap: 1 tsp ibuprofen, 500 mg tryptophan (increases seratonin which decreases OCD) and an herbal blend I get from Whole Foods called Calm Child (probably similar to Kid Calm). With that triple whammy he took a deep breath, let me rock him and went to sleep in his crib without crying. If this isn't enough, now he needs a TRIPLE hernia correction (two inguinal and one abdominal) in a couple weeks. It will be just lovely to mess with his meds for several days. I don't know what kind of mess he will be in...ugh! I think I am headed for the fast-track to IVIG with this kid! For now my 5 yo is well-controlled with his 125mg of azith...THANK GOD!!!!!!

I would be doing chiropractic adjustments if it were not for Chiari. DS2 has Chiari (no surgery) and we don't know if my DS5 has it but I do suspect it sometimes. I am afraid to have them adjusted. The one chiro I talked to about it (he's a neurological chiropractor) said that he can avoid manipulating the neck, but I still don't want to ttake the chance, especially with DS2. So, each of my kids are on about 20 supplements/meds each (doing DAN protocol). I have to tell you that you don't have to buy the supps at your docs office. I get much of our stuff from iherb.com. very cheap, good brands, free shipping. Some stuff that helps with pandas: Curcumin, Fish Oil (1000mg of DHA), and anyting that helps the immune system. Oh, my boys are on the gluten and casein free diet and it has helped, but it is no match, in and of itself, for pandas... Stephanie

Just wanted you to know that our doctor says that the steroid HAS to be given in the morning for maximum efficacy in terms of reducing inflammation for PANDAS. Stephanie

LOL LOL LOL LOL Love it!

This is the first tiime we have done a steroid taper in my house, previously all bursts with both kids, which were successful. My 2 yo has definitely responded (not screaming bloody murder at bedtime, not picking his lip and ears until they bleed, just less all around compulsions), however he is just so cranky! I already posted about this, but am looking for more feedback (don't mean to be a forum hog! it's just that I can usually figure out what is going on with my boys, but right now I am stumpted). So here are my question: 1. what have your kids acted like while on the steroid taper? 2. how quickly did you notice improvement in pandas symptoms? 3. what were your kids like right after the steroid taper? 4. how long did the effect last? 5. any exacerbation of yeast/bacteria? Thanks!

You are very good! Yes it may be clostridia. He has had it twice, once recently. He is being treated with vancomycin. We are down to our last pills of vanco, I hope all #### doesn't break loose when I stop it! I am going to give him some OLE to try to keep it at bay. Always something!

We see a DAN practitioner down here in Florda. My 5 year old has made tremendous progress under his care (and he is pretty severe). However, our first DAN doctor could not /would not treat pandas. It really depends on the experience of the DAN doc that you choose. Do you mind telling me who it is? You can PM me if you want. Stephanie

These posts about family members make me so &*$# mad!! My mom is one of the doubters and so is my aunt who I used to be close to. They have made me feel like one of those Maunchausen By-proxy (sp?) moms. They tell me to just relax and bring my kids to the park and to the beach! They think that if I just provide them a "nice life" they will be happy, healthy and grow out of it! INSANITY! I would like for them to try out a trip to the beach with my kids when they are in a pandas episode! My kids have many health issues besides pandas. Recently we found out my 2yo needs surgery for an inguinal hernia. No one in my family is even phased by this stuff anymore b/c they think I bring it on myself. LIKE I CAN OR WOULD GIVE MY CHILD A PAINFUL HERNIA so that I can get attention! I wasn't even the one who found it, my husband was...they don't care, somehow it is my fault. It is crazy that this illness can create so many walls in families. If they truly understood the suffering that was going on behind closed doors maybe they wouldn't add to it. I have half of my family avoiding us b/c my kids are a handful at family events and the other half getting pissed off b/c we can hardly make the time to see them. I can't win and I just feel more and more alienated each day. Funny how my husband's family is fully supportive. Maybe b/c they live closer and have seen things up close and personal... OK, I'm done venting! Stephanei

Personally, I would rather deal with the IVIG side effects while on vacation than sending my boys off to school like that. You make a lasting first impression on the teacher in August/Sept, ya know? But that is just my preference, everyone is different, everyone here is dealing with different severities of this disease. Also, as I have found with my boys, they both respond so differently to treatments. I am planning to possibly do IVIG for both sons this summer, as well. It will be intersting to see how they each respond. I know with the one IVIG tx we have done so far with ds5, he did get worse for 3 weeks then we saw a sudden drastic improvement at 3.5 weeks (1 mg/kg). Next will prob be higher dose. Best of luck and keep us posted!

I just can' t figure out what is going on in my house! I think I need to talk to our DAN, but in the mean time I am looking for any thoughts on what is happening. Recently, both of my boys stopped responding to Augmentin, right around the same time (also, my husband and I had very bad sore throats at the time - did not get cultured just started a Z pak right away). So, I called their DAN practitioner who decided to switch them both to azith for 14 days. Well, within 3 days my ds5 started doing fabulous, but my ds2 seems to be going downhill, despite the fact that he also started a 20 day steroid taper. I am wondering what the heck is going on! Also, DS2 broke out in a terrible yeast rash as soon as we started the steroid so the DAN gave him ketoconozole. the yeast rash went away, but behavior continues to plummet. Could it be that the azith and the steroid are exacerbating his previous clostridia infection, or some other bacteria? I will say this. His one 'classic' pandas symptom of picking his skin is completely gone. So i am really wondering if something else besides pandas is going on here. Thanks, Stephanie

Amber, I would not think the the symptoms you listed are due to autism. the way i see it, autism is basically social and communication deficits. what you listed is more OCD. So, when you take away the pandas, she may still have some social and communication deficits (which may be helped by some other biomedical things) but she won't have the OCD/tantrums, etc that are so debilitating for the family. My friend's little boy was dx'd with mild-moderate PDD-NOS and he is lightyears ahead of my sons in terms of mental stability. My boys presented with ASD issues at one time (like I have described before) but their most debilitating problem has been pandas all along. And yes, I do think that pandas does affect social/language to an extent, but in my boys I dont' think it was the sole cause of these things. stephanie