coco

Stephanie, that is great information. I am going to do as you suggested. thanks very much! coco

I have not heard that. I've just been googling it and there seems to be no warning about extended use. I will try it for a month in conjunction with the other probiotic stuff and see how she does on it.

I am going through the same balancing act with my daughter. I do think she suffers from too much yeast...she's been complaining lately of an itchy tush...which is a sign. I went to our local health food store and the guy who owns it is like the Ghandi of all things natural. Anyway, I started my daughter on Kefir, which is a fortified goat's milk drink that you can buy flavored. I have her drink that which acts like a welcoming blanket for the probiotics she takes a few hours later. I was told that the Kefir makes the probiotics more effective and last longer and kind of "hugs" them as they enter the stomach. He recommended a good liquid probiotic as she can't swallow pills. He also recommended oil of oregano (drops) for a month, then switch to garlic oil (drops) for the next month and keep switching back and forth so she doesn't get too used to it and it works more effectively. He also to me to try and end the day with some probiotics as it can sit in the stomach overnight and have a lasting effect. Oh, the Oregano Oil and garlic oil are supposed to be natural anti-fungals. I will report on any success we have...this is all new to me as well!!

Dear Coco, I feel like I could write a book on impetigo. The sores you are talking about really, really sound like impetigo. It starts out itchy for them and my son tells me that the skin is tingling, and then this very red sore appears. The sore or sores look like a very perfect circle on my sons mouth. Then they turn a honey color and they look like they have these lines across the sore from left to right that look almost like a scrape. They sometimes ooze just a little bit, sorry I know this sounds so gross. My son, when he gets them cannot stop opening his mouth as wide as he can and it cracks them open again and prevents healing. He also will lick the sore, it kills me. It becomes a new tic! Once I finally got one cleared up on one side of his mouth and then the next day another showed up on the other side. I almost screamed when I saw it because I could not believe it. He really looked like a clown that had two red circles painted on either side of his mouth. They are usually about the size of a dime. I have tried neosporin, bactroban, even went to a dermo and got a steriod cream, that did not help all all, it just irritated the heck out of it and made him fuss with it even more. Now I now more and the only thing that clears it up for him is oral antibiotics. I just know after reading so much on this forum that my son has a nasty strep infection SOMEWHERE in his body! I really think it is an immunity issue now and I think that the skin has been so broken down there that he is now really suceptible (sp) to these sores. I had one cultured recently and they did not show strep on the lab report. But my ped said that there is never enough on the skin to show a positive result. What did show up on the lab report was candida albicans. That is yeast right??? They never even called me to tell me those results. Do you think it is because we all have yeast on our skin? I still have so much to learn. Thanks, I hope that helped a little. Do these sores sound similar to the ones your daughter go under her nose? I feel for you and for her... they sort of do. of course, as soon as I heard "impetigo" I googled pics of it -- freaked out a little because those people look like they live in third world countries it is sooooo bad! -- sorry! But I found one that was of just a nose, and it looked like my daughter's. it's interesting you mention yeast...i was thinking about starting her on some oil of oregano for a month, then switching to garlic oil for the next month and rotating to help with possible yeast. i will ask her immuno about this as well. i also have a lot to learn! I'm beginning to think my kid even has strep in her hair!!

We have done ivig with dr k in chicago in august. we just did another 10 days ago and will be doing monthly for the next 5 months. Insurance is covering 80% beacuse she has SAID in additional to pandas. We got some really good bounce from the first one, many things got a lot better, but others are very stubborn...questioning rituals, and some, but much reduced oppositional defiant. Much of the vocal tics and compulsions are 80% better, but we still have night incontinence. Anxiety is lessened, but we still have a ways to go on that. I could go on. She's had this for most-likely 7 years, so I don't know what to expect in terms of a full recovery. We are just pleased the dial is moving, and that gives us hope for future changes. She caught a cold several days before we did the second ivig, and I have yet to see any changes as a result of that. In fact, we backslid to a point I thought it was all coming back. Right now she is over the cold and we are back to where we were before she got sick.

Hi Judy, It's a little difficult to give you an assessment and many labs have different numbers and norms. It really does take a good immunologist to interpret the results and explain how those numbers affect your child. I know it is very frustrating and we all get better deciphering those numbers as time passes. sigh. With that said, my dd's numbers were: ASO titers 295, and the norm should have been 170 or less. The DNASE was 960 and should have been below 200. Her CamK was 188. She also failed the tetnus, and 13 or 14 pneumo strep serotypes. Also failed 2 or the 4 IGGs. I hope that gives you bit of a perspective.

We have been working with Dr. Bouboulis in Darien for the past 4 months. We did our first ivig in chicago with dr k and our second with dr. b. We think very highly of him and he was a great referral from Dr. Leckman at Yale who we also saw. He's about an hour from NYC.

Hi Char, My dd is 9 and was 58 pounds. She took 5 1/4 ml of prednisolone, liquid form of prednisone. that was according to dr. k. good luck!

Ok - here's a question for all of you: My daughter recently had a mild cold, missed 2 days of school, developed nasty clusters of cold sores on the end/inside/and under her nose...looks like about 6 of them all together, honey colored and crusty (gross, I know). Then we saw a backslide in behaviors for about 10 days and she's getting better now and sores are disappearing. The same thing happened to her over the spring, then horrible behaviors occurred and it took FOREVER for those nose sores to go away. This time, because she has beenon Azithro they went away pretty fast. I spoke with Dr. K about this and he thought it could be impetigo caused by strep, not cold sores. Another Mom also told me her daughter has had 3 small bouts of impetigo on her daughter's nose as well. Has anyone else seen this with their child? Just makes me nuts to see that this strep is oozing out of my kid at just about every orafice!!

fuelforall, Do you believe that your child's learning disability is a result of the Pandas, or in addition to the Pandas. My kid is the same as yours.

YES!!! I totally agree!!!! coco

Hi All, My dd9 has been on augmentin, 250 mg daily, she is 58 lbs, since 6 weeks prior to first 2-day ivig with dr k. in August. After ivig still remained on 250mg daily of augmentin. We had consulted with local immuno (because of distance) prior to and since then for sebsequent local follow-up. He went through her blood results in detail and diagnosed her with SAID (Specific Antibody Immune Deficiency). She failed tetnus, 13 of 14 pneumo strep, borderline fail lymes, and failed 2 of 4 IGG subclasses. He switched her from Augmentin 250 to Azithro 500 daily. We just did #2 IVIG last week. My dd has had this pandas undiagnosed for years, and I think I realize that Azithro is better for intracellular strep, which my daughter may have. What do you all think about this? And should I even ask to increase the Azithro amount...so many new happy stories about these higher doses. BTW, my daughter is seeing sawtooth improvement, but could be better. Am I asking for too much too soon? We've been in the soup for sooooo long! Thanks!!!! Coco

My daughter was on prednisolone for her 5-day burst, and I believe it was 1 and 1/4 teaspoons, she weighed 52 lbs. We saw an immediate response after day 1. However, after 4-5 days following the completion of the burst she began to backslide. We were able to get another script for the following 3 weeks until we did ivig...it was only merciful...and we were all crazy by then. However, it took a good 6-7 days to see the same type of change in her that we got the first time we did it. I don't know why, but it scared us because it did not seem to be working as it first did. Additionally, both times it never cleared everything up...some things were very obvious, but others symptoms still persisted. We were on 250 mgs of Augmentin at the time until we got ivig. I hope this helps. Keep hanging in there... coco

Thanks. I wonder what is up with Dr. Leckman. Hi - We saw Dr. Leckman in August, prior to seeing Dr. K. for our first ivig. We were "interviewed" at length for about 4 hours at Yale by him while one of his staffies played with our daughter. He believes in Pandas, but I don't believe he has seen a full-blown pandas case until my daughter....oh, lucky him! Anyway, he did not offer too much, other than verbal support, and told us we were probably doing the right thing making the trip to Chicago. Yale does not do ivig for Pandas at this time. Dr. Leckman was trying to get research funding for a study on pandas, but the cash never came through, so that's why I think he's kind of done. There may be other politics. He was very helpful to us giving us abx and pred until we could do ivig, so I will always be very appreciative of that, since no other blockhead doctor was willing to up to that point. Sorry for the sarcasm...I'm a bit tired today. Anyway, i send him updates on my daughter periodically, per our agreement.

My immuno told me not to revaccinate my 9 year old daughter with prevnar/pneuovax...much too dangerous and not worth the risks. My daughter in addition to pandas has been diagnosed with SAID, Specific Antibody Immune Deficiency, failed the pneumo strep 14, tetnus, borderline fail lymes, and failed 2 or the 4 IGG subclasses. I would err with caution.

I think that the Prevnar connection is a very valid hypothesis, especially given the age of our children and the explosiveness of this disease, and I, too, believe it was rushed to market without proper testing. I live in CT, so I am not as sure that is was a particular lot # of the vaccine, but rather the vaccine itself and the vulnerability of the blood-brain barrier in a percentage of these babies/toddlers. I think it may be a culprit is the rise of autism/developmental issues/PDDnos/tics/OCD/Pandas, etc., that our elementary schools are plagued with and is on the rise. There is some connection. You guys are awesome. Let's keep digging. coco

Hi All, A relative of mine is looking for a Pandas believing immuno/infectious diseases doc in the Knoxville, TN area. If you have any leads, please let me know. Thanks! Coco

Yes, Vickie!! I do the same thing!!! LOL!

Dr. Leckman won't "treat" pandas kids. He referred us to an excellent immunologist in Darien, CT one hour from NYC. His name in Dr. Denis Bouboulis. We did first ivig in Chicago with Dr. K in August and just completed our second with Dr. B today. He is very compassionate, believes in pandas and does emails and phonecalls. He consulted with Dr. K for an hour to learn more about his protocol, etc. We are Dr. B's third pandas case. The nurse who attended to us today was sweet...I asked her, "Do you know much about Pandas?" She said, "Nope, but I am learning very quickly." She was treating 2 others pandas kid at the same time.

I agree that the more shows that feature pandas for ANYONE to hear and learn will be able to inform and educate others. My daughter was diagnosed with pddnos at age 5 but even the doctors "diagnosing" her said that she did not meet all the criteria but had to "put down something" for her to receive services. For years we have been to doctors, specialists, pschys, DANs, neurologists, etc. and only an ALLERGIST mentioned possible pandas to us this year because he attended a medical conference where sue swedo was a speaker. Now our daughter's health, life and future looks completely different. She is like a different child after ivig and will be receiving ivig monthly. Every time I hear that commercial that Mariska Hargitay does the voice over for that says, "The chances of your child being in a broadway play, 1 in 11,000 -- the chances of your child being diagnosed with autism, 1 in 166" I want to scream, AUTISM is pandas!!!! Talk about PANDAS! Tell the parents if your kid has been diagnosed with pddnos, developmental delay, autism, CHECK FOR PANDAS!!!!!! It makes perfect sense and yet the connection is not being made to the public. Thank God for all you super parents!

Hi! Yes, I do understand what you are explaining so well! It's a beautiful thing! My daughter also experienced self-inflicted diet restrictions, and to see her eat with gusto and ask for more makes my heart flutter!! The other morning she ate and eat sandiwch with 4 poached eggs on it! And this was a kid that could survive on air and pretzels prior to ivig and abx. In just 8 weeks she has gained 6 pounds!! yahoo! Don't get crazy over the setbacks (well, I guess we are all crazy anyway!!) but things will go up and down as our children heal. My daughter just had her second ivig treatment today and we are praying for continued progress. coco

Peglem, You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you! Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed. Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly. Coco Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin! Anyway, I finally have some real hope that we'll be able to do things that will help her... Peglem, I can tell you that about one week post ivig, my daughter's launguage popped....longer sentences, bigger thoughts articulated, more back and forth on topic conversation...we were shocked to hear some of the things that she said. Ex. at dinner my husband asked her if she wanted more cranberry sauce and instead of the usual yes or no, she replied, "No, but thanks for asking!" I am encouraged and I agree wholheartedly with your prior statements. I feel like shouting to every parent, DON'T SETTLE FOR THAT ANSWER!! coco

hi bmom, my immuno told us that even if you do pex, it would be wise to do subsequent ivig monthly for a period of time to boost the immune system. He went into pretty big detail about it, but it all made great sense. coco