P_Mom

Sarah, Hi.......I read about your son getting IVIG on Sunday... I will keep you in my prayers for all to go well and to have great results. IVIG is something we are considering for our PANDAS son, so, could you please let us know how it goes?! I also read you will be doing four rounds...how far apart will these be spaced? Will you chleate first? Do you have enough time for that before IVIG? Sorry so many questions but I am very interested in this process you will be taking. Stay in touch! Kelly

Sorry..a bit off topic, but, Cheri... could you tell me what kind of symptoms/issues your son had that led to his diagnosis of Crohns? Thanks!

Hello EVERYONE, I though this was an important thing to post as it talks about titer levels and how they do NOT need to be elevated for PANDAS. I know a lot of people and doctors are stuck on this idea and I think it is unfortunate because a lot of our kids are being misdiagnosed and not properly treated. Anyway, this comes straight from the NIMH and the PANDAS study by Susan Swedo in the 90's. http://intramural.nimh.nih.gov/pdn/web.htm After you click on the link, go to recent publications and scroll down to the publication that talks about the study of IVIG and PEX for PANDAS children. On the second page, second column, it talks about how the kids were at baseline before the study started. All children were diagnosed with PANDAS based on sudden start OR sudden worsening of symptoms, etc., SOME children had high titers, some had NEGATIVE titers, all were very ill at time of entry, even the ones with negative titers. The height or even absence of titers had no relation to the favorable outcome of threatment for these kids! Also, PANDAS is a spectrum disorder, some kids having primary Tic disorders, some primary OCD, or some both, it does not always included OCD. I hope everyone is doing well. I just really thought this was important and I hope this will clear things up for some people. Kelly

Emma, In general...it is my understanding that he starts with and tries to stick with Keflex. Supplements that he recommends are as follows: Ester C 500 mg Vit. E 100 mg Folic Acid 400 mg Fish oil 1000 mg B6 20 mg Hope this helps. Kelly

Cheri, I have been working with Dr. Kovacevic from the onset of PANDAS via e-mails and telephone. He has been extremely kind and helpful to us...I do believe that the members are aware of him. The descriptions of the clinical cases are right on. When I found the site months back, I just gasped in disbelief when I read those clinical cases and because of the fact that I had finally found a perfect description of my son. I have been in touch with the NIMH and also Dr. Murphy....I personally believe he is the best Doctor to see as far as PANDAS goes, he has definitely been the most helpful to us, and I have been in contact with PANDAS Moms who have taken their children to see him......and he helped them beyond words. Kelly

Hi All, I know it always helps to post when we have found a good product..I found a great fish oil and I am excited about it! I have been looking for one for a bit now...had to resort to poking holes in the Nordic Naturals to get the oil...then..my kids could only tolerate a little (taste)..so, they never got an adequate daily dose. For PANDAS, Fish Oil is highly suggested (or another good source of Omega 3's,(flax) ) I found Carlson for Kids the Very Finest Fish oil for kids on-line. I received it..it has NO fish taste, and I tried it straight! It taste like a mild lemon oil..the kids are clueless! It won awards...has high EPA compared to DHA (recommended), straight liquid so no capsules to mess with, and it is high quality with no contaminants (mercury, etc). It runs about 24 bucks a bottle, not too bad, but, definitely worth it! If you are looking for one for your kids...this comes highly recommended. Kelly

Long but great read on the whole sulfate issue............... http://www.newtreatments.org/fromweb/sulfur.html

Interesting stuff, Kim. On reading that, I came across this.... To investigate the immune-mediated response in TS, and its relationship with streptococcal infection, we measured serum levels of soluble intercellular adhesion molecule-1 (ICAM-1), vascular cell adhesion molecule-1 (VCAM-1) and E-selectin in patients with TS, compared to healthy and diseased controls. Soluble VCAM-1 and sE-selectin were significantly elevated in children and adults with TS, and sVCAM-1 was higher among anti-basal ganglia antibodies (ABGA)-positive adults with TS. No correlation of adhesion molecule levels to clinical severity or anti-streptococcal antibodies was observed. Children with Sydenham's chorea and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) showed an increased level of sICAM-1, but not sVCAM-1 and sE-selectin. These results provide initial evidence for a role of adhesion molecules and systemic inflammation in TS, and support the hypothesis of an ongoing immune-mediated process in this condition. Could this begin to explain the difference in TS and PANDAS?? They are so similiar..I was beginning to wonder if they were one in the same. I guess not.............

Well, I can tell you what our ENT did. He could visuallly check his tonsils,(which he said were huge), but, to check his adenoids he first sprayed a numbing liquid up my sons nose, then he inserted a tiny rubber line with a tiny microscopic camera on the end of it up my sons nose, and then down his nasal cavity to look at the adenoids. We could watch what the camera was seeing on a t.v. monitor, it was pretty cool, actually. I was shocked to see were the adenoid was totally blocking one part of his airway...we would have never known...his clogged nose was alwyas due to allergies.(we were told) He tolerated it well, it does not hurt, just feels a bit funny. He liked the fact that he could see the inside of his nose on the screen.

Have you had her checked by an ENT? My son was always plugged up, he has allergies so we always thought that his allergies were the cause. On being checked by the ENT, he had 100% blockage of his left nostril airway from his adenoid which contributed significantly to his "clogged" nose.. he still gets a bit stuffy from his allergies...but is much better since tonsil/adenoid removal.

Tenex is a prescription medication mainly used to treat high blood pressure.

I had the same concerns with my sons, they were always covered with bruises from the knee down. I asked my doctor about this..he said it was extremely commom in kids and he sees it all the time. Kids are hard on that area of the body, he said it is nothing to worry about. He said if your child started to bruise easily and frequently in other areas of the body..those not so prone to bruising..then there may be an underlining medical issue to address.

Cheri...I believe what you suggested is true and possible...God created a perfect body...over time, we are the ones who have screwed it up!

Okay, I understand that. Bummer though.

I think we have a miscommunication, Cheri. No, I didn't mean that you could diagnose the Cause of a kids tics by observing, but, that you can recognize the kids ticcing from TS as opposed to ticcing from other reasons. I know you have been dealing with this for a long time, and I value your opinion and do not doubt you when you say that. What I am extremely intetested in is when you say..."having been in the company of kids who tic for a variety of reasons, I tend to be able to recognize those who have TS." What is it that stands out about these kids? What can you see and recognize In the TS kids compared to the others who tic for different reasons? Yes, all kids with TS tic, that is what TS is, and, no, not all PANDAS kids tic..but many do...what I am asking.... is there a difference in the tics themselves? I was always told and thought "tics were tics" regardless of the cause, and that you couldn't determine if a child had TS , PANDAS, etc., just from observing the tics. Is it something in their behavior? I am just so curious because this is huge to me! Also, I just want to be clear that when I talk about antibiotic use I am strictly referring to PANDAS cases. I have not nor would not suggest it for use in any other cause of tics, etc., I know it is not the answer to everyone's tics. I only have experience with PANDAS and that is what I post about. I think most of you have noticed that by now!

Thanks...that was beautiful and oh so true...thank you God for our kids...tics and all.

Yes, gotta run right now but I'll check in later and post you the link! Kelly

That is interesting, Cheri. So when my PANDAS child is ticcing from PANDAS, you would be able to tell he was not dealing with TS by observing his tics? Am I understanding you correctly? How? I think this would be very helpful to a lot of people on here that are wondering what they are dealing with...I would be extremely interested myself. Thanks!!!!!

This quote from an article on PANDAS basically sums up the reason I put my kids on long term Penicillin.............. "Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder."

I'd say it really depends on what you view as the worse evil. For ME, a brain being attacked is hands down the worse evil for me as far as antibiotics or PANDAS goes...I'll take the antibiotics any day over what PANDAS can do..sometimes leading to a change of baseline brain functioning for these kids and then having permanent issues. As far as resistance...we were told by the NIMH that PenVk is basically good for nothing anymore except strep, so, resistance is no issue with this antibiotic. Plus, I agree with ad-ccl, there are many antibiotics available in this day and age.......not saying it couldn't happen, but, the chance of our kids getting something that a different, stronger antibiotic won't take care of is slim. These antibiotics that our kids take are basic antibiotics (especailly Pen VK)...there are many stronger ones available. No difference between PANDAS tics and "normal tics." Tics are tics. My sons immune systems are overly active, a little supression is good for them. The broader antibiotics do have a tendency to kill the good guys as well as the bad guys....that is why you supplement with probiotics. I am not saying I am thrilled to have my kids on antibiotics..of course I wish things could be different, but, for me I just will not leave them without some protection from PANDAS...... keeping their brains protected is my #1 goal. Yes, immune systems get stronger over time and as they fight illness, but, these kids immune systems are "overly strong." But, if you feel uncomfortable and don't want to interfere with that, then just don't do it..it has to be something you feel comfortable about. Also, although my younger sons symptoms came on strong over a couple days (not overnight), my older sons was sudden, too, but much milder. PANDAS can present a little different in each case..I do believe there are "degrees" to this, as well as degrees to their response to antibiotics...every case is different. Kelly

She has injury to the white matter of her brain? What exactly do you mean by that?

I read the posts you were referring to and it sounds to me like the "anti-basal ganglia" tests are what they call our ASO and AntiDNAase B titer tests. Just the same with these tests being negative and kids still having PANDAS.......same goes for ASO and AntiDNAase titer.

Be careful with this and don't let it confuse you.............. I too, looked at Chorea very carefully and spoke to two doctors about this regarding my kids. No chorea with them, although I can see how it can confuse people. When it says Chorea flows from one body part to the other, it means a continuos flow.. imagine your child just wriggling about, with no repetitive movements, just wriggling all over, continuosly flowing movements. Tics do change, too, but, over time. Tics are repetive movements that are here for a bit, then can change to another tic that stays for awhile, etc. So, if your child has an arm fling tic, mouth tic, eye blink, neck tic, sustained look etc., they are tics... much different than the movements of Chorea. Sydenham's chorea is rare now because of antibiotics. Sydenham's chorea is a result of rhematic fever, which is also extremely rare these days. Both result from untreated strep. If your child had strep and took antibiotics, chances for rheumatic fever/sydenham's chorea are basically 0. Neurologists are well trained in distinguishing tics form chorea (I'll give them that), so your doctor should be able to clear this up for you. Our pediatrition was also very knowledgeable in differentiating tics form chorea..both said no chorea. I think some docotrs will say chorea after they see unusual movements following strep/illness/vaccines because many, many doctors out there are unfamiliar with PANDAS and just don't know what else they can call it....many doctors only know about chorea with strep, but, there is a whole new ball game out there today.

Something to think about which may help............. As I sat on the couch next to the fire this morning with my cup of coffee hoping to spend a few quite moments alone with God in thought and prayer, my older son came bounding down the stairs with recorder in hand, plopped down next to me shoulder to shoulder, and started to blare out loud, beginner, squeaky tunes right in my ear. Then, my 5 year old came running down too and crawled up in my lap and snuggled with me under the blanket while we sat there together listening to this wonderful music. Ahhhh.............. nirvana. Although I got no quiet time, I was there with my sons and I began to think of a freind from High School, Holly. See, my friend lost her 5 year old daughter to a rare cancer this past summer. She was a healthy little girl when they noticed one day she wasn't putting weight on her one leg.. long story short she was diagnosed with cancer. (her story at www.paytonwright.org) Anyway, her parents had to watch their little girl suffer and slowly deteriorate until she passed this past May. I can think of no heavier burden to bear. What would her parents give to be in our shoes? What would they give to have their daughter here and just "have tics."? I know we have been irritated to hear Doctors say, "just tics." But, really, they are right. They are "just tics." They have no terminal disease. I began to feel ashamed at how "woe is me" I have felt about this at times. Yes, I am not saying it is not hard and heartbreaking, it is. We love our kids and want the best for them and hate to see they have to endure any hardships. But.. we HAVE our kids here with us. We can hold them, see their faces and smiles, enjoy them...hear their laughter, share in their pain. What would parents who have lost their kids give to be able to do that? Then I remembered a news story I saw last night about a dying 10 year old girl who just wanted to see her Dad (in Iraq) before she died. I looked at her little, almost lifeless body lying in a bed waiting..just trying to hold on....... I squeezed my 5 year old tighter to me, and began to rejoice in the squeaky sounds of my sons recorder blaring in my ear next to me. Thank you God, thank-you, thank-you....... thank-you for my kids... thank you for the honor and priveledge to have them here with me, every day with them is a gift and blessing.......tics and all! God Bless you all and enjoy your kids! Kelly

Hi again. I have an 8 and 5 year old. Pen VK is just the improved form of the old standard Penicillin, we give 250 mg twice a day. I do not avoid dietary Omega 6's, you still need them and those foods are important.... I just do not supplement. My kids have no food allergies (IGE), and I do not believe my older son has any sensitivities...my younger son may have some mild ones. I suspect salicylates and I am in an elimination/reintroduction process.(Loose Feingold type diet) I have just received some testing kits from Great Plains... I will most likely get them IGG tested sometime in the near future just to be sure, but, right now there is not much going on, so, I may spare them the blood draw for now unless something comes up. I was "warned" by our allergist about IGG... he said they are not really accurate tests and will most likely show positive reactions to many foods that your kids really don't have a problem with, and then many kids get these beneficial foods removed from their diets unnecessarily. I don't know, I guess I am on the fence with it. If I get it done..I'd probably only focus on any highly reactive foods, and then see what happens....... My younger son is only in preschool and is almost asymptomatic.. teacher knows nothing and has seen nothing. My older son is symptom free, and school is not an issue right now. When he was in episode, I did write a letter to the teacher explaining that he has developed some motor tics and if she notices them to please not say anything to him. I then asked her to please call me if it seems the ticcing is bad or the kids are noticing and saying stuff, or if he seems stressed about it. If that happened and she called, I would probably go pick him up and make up some excuse why I did. She never called, thank God, and when I went in for a class party, I asked her if she ever noticed anything and she said no, never. Getting tired, going to hit the hay! Good night. Kelly