thereishope

I'm sorry, but he may just be in denial. Yes, all kids have "quirks" but when you add up all of them and then see connections, well....it's no longer a matter of just being a child. Does Dr Cunningham write out a script for the draw? If she does, then you could go to any lab (for example Lab Corp).

Quirky is the exact same word I use. My son doesn't have any fine motor problems at all. It's actually a little funny you mention hoarding garbage and tags. My older NON-PANDAS son does that. Now that I know more about OCD, I am nipping that in bud now. I see so many things in a different light than I did a year ago. Also, even when my son was in the middle of PANDAS episodes, he behaved well at school. Not very social, but behaved well. Everyone's stories end up melting together for me. Can you once again explain why your husband does not think your son has PANDAS or will not entertain the idea?

Has he ever visited this forum? If you emailed him a link and asked him to view it, would he? However, you may have to go through and edit some of your own posts if they show him in a negative way (don't know if any do). Don't want to cause more drama than what it is already there.

Does anyone have a child that heals naturally w/o IVIG or PEX and have their Cam Kinase numbers while healed ? My son has healed naturally 3 times so far, however, I have not done blood draws on him since he is petrified of doctors now and I have to be protective of him regarding that. So, I do not know if his Cam Kinase numbers are. I know that may be beneficial to others to know if the numbers go down w/o intervention, but I just can't do that to him yet.

I'll post the info here so others will know if they are interested... I just contacted pandas network (www.pandasnetwork.org) to give my story and that got the ball rolling. Here is a slightly revised copy copy of the intro to that email.... I had a little time to meet with Dr. Cunningham at University of Oklahoma last week. She is a very gracious, southern belle -- very kind and caring and clear that the usefulness of her research is to help the patient. Period. I met Kathy Alvarez who runs our tests (Adida was out of town) and they are thrilled that we have reached out to them because it makes their work at the microscope "come alive" and they understand better the worth of their research. They asked about all the families very specifically, how everyone is improving. I did my best to inform!! Dr. Cunningham gently reminded us to email our stories to them for those of us who have not (me included). Especially outlining the onset, what was occurring at the time of the blood draw. Email Kathy Alvarez and she'll be graphing our symptoms and the results in the future. I asked if she would like us to do the CaM Kinase test every 3 months or so for a year --- to give the study a clear picture of our progress. She said that would be great but there simply is no funding yet so we would have to pay the $200 each time. It is up to each family. Madeleine thanked each of us for entrusting her with our child's results. She is trying very hard to advocate for us with Swedo, the NIH, Leckman, worldwide researchers. Attached is a memo about my visit. I speak of things in very general, simple terms --- but you'll get the point. I go back to work next week......so sorry if it takes me awhile to respond to emails. More parents are getting involved with expanding the website, responding to website emails, etc. --- but it all takes volunteer time! in days with precious few free time hours.

I would never be able to afford to fly there and pay for an appointment. So I am thankful for the info people provide from those visits. She does sound great! I'm sure in due time, she will write her own book.

I have yet to read, but many say he had undiagnosed PANDAS. Here's the link to Cory's blog (the boy in the book).... http://ificanhelp.com/corys-blog/

One more reason for chronic sore throats can be if you simply sleep with your mouth open. It hurts from drying out. If I find myself sleeping with my mouth open for a day or two, it can literally take a week or longer for my throat to feel better again. Try your best to be aware to sleep with your mouth closed.

I guess you can say a strep carrier is infected with strep but never gets symptoms of it and would never even know they had it. Strep and the person co-exist peacefully.However, they are fully capable of spreading strep to other people. If you are a strep carrier, a rapid and/or culture should come positive when you have your throat swabbed. Even when you feel completely healthy. I believe a lot of the time with strep carriers, they have to get a different antibiotic other than the normal penicillan or amoxicillan to erradicate it. I can't remember the name off hand. Even as an adult, getting strep once or twice a year does not make you a strep carrier. Nor would they even say that warrants having your tonsils out. If you are deemed a strep carrier, having your tonsils out would be the first step. T and a surgery is suppose to lower your chances of getting strep by 80%. Meaning, a 20% chance you get strep if exposed.

Every round has been different with us too. OCD took a very long time for my son to overcome. Has Dr K ever mentioned to anyone if there can residual OCD, even post IVIG, from it being ingrained in them for so long? Even though it surfaced due to PANDAS, it is no longer consider PANDAS behavior? Months after everything else got better, OCD stuck around with my son. Luckily, we have finally overcome it. What has the psychologists said to you? Have you tried CBT or other therapies? How is your son doing?? Don't want to hijack the thread, so I'll (try to) keep it brief. Haven't been posting much lately: my wife and I are emotionally drained (which I know everyone here can appreciate). It's been 3 months since our 2nd round of IVIG in Chicago with Dr. K, 2 months since the 3rd round. Dr. K really expected those 2 rounds, 28 days apart, to do the trick. Just haven't "seen the magic" this time vs. 1st round last October, when we saw about 70% improvement in the first month after IVIG. Slow, subtle improvement this time - maybe 30%. Fearing that his age (13) and the severity of that last exacerbation (on 3/29/09 - worst yet by far) are making recovery pretty tough. And we're scared. Even after that 1st round of IVIG - and even on prophylactic augmentin - he still had a major relapse from what appeared to be an upper respiratory infection. With 2 younger boys in school / daycare, don't know how we'll keep infection away from him this winter. Things would be much less stressful if we had a local doc to help. Our DAN doc who originally diagnosed our son passed away last October. Been searching (fruitlessly) for a replacement for almost a year. Three pediatricians who said they were accepting new patients declined to take him because "they weren't equipped to deal with something like that." Endless series of ped neuros, infectious disease docs, and child psychs who don't even bother to order any tests: after months of waiting to see them, they just tell us it's not PANDAS (although none of them agree on what it is) and we need to see somebody else. Finally have a line on another DAN doc in our area whom we hope will be willing to help... guess we'll see. Have been waiting to post until I had better news. This past week has been better, so maybe we're getting there. We just have a long, LONG way to go to approach anything like normality! I love the positive updates and success stories I read on here. Gives us hope. I pray to be able to share good news someday soon!!!

For those not on the email list, here are the notes Diana took from a recent meeting with Dr Cunningham... NOTES From Meeting with Dr. Cunningham – Sept. 21 CaM KINASE and anti-neuronal antibodies – What do they Look Like? Madeleine wanted me to see the way our CaM Kinase and anti-neuronal antibody tests are run. I was able to look under a microscope at donor brain neurons. The donor neurons are kept in a little vial of fluid in a refrigerator. They are shaped a bit like a pentagon and on each end is a little curved “cupped hand” or small tendril. She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups. When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion. This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity. She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness. A FEW CHILDREN DON’T HAVE A LOT OF SYMPTOMS but have a HIGH CaM KINASE, etc? WHY? She said that is why we are in the study. She thinks that like in ANY ILLNESS, some people develop other mechanisms in the body to arrest the syndrome. If a good study ever were to occur, they would do good measurements of children’s autoimmune systems, their CaM Kinase, etc, and the symptoms --- and probably figure out from there what is happening. But she knows – strep causes CaM Kinase to rise. That treatment with antibiotics or, if needed, IVIG or PEX, makes that CaM Kinase number go down. She also said they have not measured CaM Kinase in regularly occurring strep (no pandas symptoms) and that this is a good control and necessary to do. PROGNOSIS FOR OUR CHILDREN She said in her 30 years of experience with strep and CaM Kinase – where there is PANDAS or Sydenham Chorea – the process can be haulted. It might take a year or two to quiet down the immune system, but if a child does not get further strep infections, things will quiet. Although the graph in her Journal of Immunology study indicates that some of the kids in the convalescent stage did NOT lower their CaM Kinase in a few children – she said, “Please do not read too much into that.” These kids did not get IVIG, were not on constant antibiotics, there were many controls not available to them-----This study’s purpose was to get the ball rolling for the study we’re in now—to prove that there is a correlation of symptoms and CaM Kinase that deserves further study. She did not know of any correlation between PANDAS and any other adult onset illnesses. But it hasn’t been studied. WHEN DOES A CHILD NEED IVIG or PEX or retreatment? Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted. I pointed out that we are seeing that there is a range in PANDAS. Some have very acute pandas onset and others have milder pandas onset with rapid remissions. It is up to each parent to figure out what measures they’ll take to arrest the PANDAS symptoms. In any case, there is good evidence from doctors like Swedo and others that at puberty the syndrome will stop. She did say that when the child is healing from the initial onset -- be sure family members are clear of strep because it is hard for the new IGG cells to do their job if they are around strep and it can re-ignite symptoms until good replication of IGG cells have occurred. FUTURE STUDIES and EDUCATION OF DOCTORS She has applied for a large grant at the NIH but won’t hear back for maybe even one year. She was surprised by my telling her that most of us have a hard time getting any help. Madeleine said she’ll do all that she can to get her paper “out there” and will talk at any University if invited – doing grand rounds at the hospitals to teach about PANDAS. Her talk in June to an Autism Symposium regarding the current studies got a lot of interest from the Europeans. She is headed to Europe next week with Swedo and Leckman to discuss PANDAS. She feels very much that the tide is turning, but that it will take time. That our parent network to explain our stories is VERY IMPORTANT to help doctors build awareness of how to treat and identify PANDAS.

I have a feeling, and it's just my opinion, is that if you get the steroid soon after you are infected with strep, you will have better, more consistent results. When my son had his second strep infection, he was very bad off. He got the steroid 5 days into antibiotics. We also caught the strep pretty fast.Overall recovery took about 2 1/2 months.When he got strep the third time, his behaviors weren't as bad as the second. The doctor would not give him a steroid. Overall, recovery that time took about 5 months. One again, we had detected the strep pretty fast. fyi....We never did IVIg. He is 5 years old.

When my son got 5 days of steroids it was pretty soon after his + strep test. I think he was 5 days into antibiotics. At first, it helped him plateau. He did not continue to spiral down. That was good. Prior, he got worse by the minute.Then I began to notice improvement. He did not get worse after it. However, let me add it still took a very long time to fully recover.

It makes you realize that you should not dismiss a young doctor just based on their age and experience. They may have the most updated information out there. They also still have the drive to learn and conquer challenges.

It's not a question but an idea for you....maybe consider installing a "nanny camera". I think you get those at a reasonable price now.

I got that book from the library. When I got it, someone had underlined almost everything in the PANDAS section. You have no idea how much I wanted to find out who had that book before me. Others have said the book "Against Medical Advice" sounds very much like the boy had undiagnosed PANDAS. I have yet had the time to read it.

Amoxicillan is usually the antibiotic doctors start with for infections so they the kids have a stronger one to graduate to, if needed. Yes, it is given to infants and kids for ear infections, but it is also what peds give for strep throat. It isn't just for babies.When my son (almost 6) gets strep, he is given a 10 day course of amoxicillan. Luckily, it kills the strep. So, anyway, that was your doctor's thinking. He wasn't doing his job wrong, he may just need you to guide him along a different path than he is use to if you want something else.

My PANDAS son never had to have one done, but my non PANDAS son had a heart murmur at 2 or 3 years old. The doc said that was very common for that age in boys. They did send us to have it checked out and all was well.

Okay...I'm another one crying. Thank you for posting. Right now I live day to day and it's hard to look at what the future may hold. The hope you're giving us is priceless. Thank you.

Where they are getting all this colostrum from? I mean it's only present for a few days and there's not much when it is being produced. Are the cows getting hormones or something? I don't think it could be human. Women just don't produce enough. With my first son, he was premature and I pumped milk for him. I got one ounce of colostrum on the day he was born and the nurses were amazed by that amount. That was a lot.

I wanted to send you some reassurance about your son. All 3 of my kids do not get strep symptoms. Only one has PANDAS. Obviously keep a close eye on your son, but do know he may not have the same disorder as your daughter. It's the worse thing to have a silent predator (strep) that won't veen show itself in the classic way. We are always left wondering what to do w/o always going to the doctor. I freak out more because my boys share a bedroom.

You daughter and my non PANDAS son have a lot in common. You could totally bribe him with school supplies When Target puts out the school supplies over the summer it's like Christmas to him.

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How old is he? My 5 year old is horrible with doctor appts, esp if he's in a PANDAS episode. When he's in an episode, it takes 4 nurses and my husband to hold him down for a throat swab. Last time he was not in an episode, so he actually opened his mouth for it but then postal afterwards with hitting, spitting etc. I can't even imagine a blood draw. I've found I give him warning but not a lot. I tell him day of about the appt. Sometimes I tell him at home, but wait until he has his shoes on. Sometimes I wait until he's buckled in the car. You want to give notice but not so much that the anxiety has a chance to really build. I feel so bad saying this, but with my son I thik if I had to get a blood draw he'd not really have a choice but to scream. I'd try to get it done in a peds' office or peds' outpatient where they might be more understanding. If you can get a room close to the exit that might be good too. Make sure you have all paperwork done prior to going for the draw so you can soley concentrate on him afterwards or bee line out of there. I always promise a treat after a doctor appt. I think it's so I don't feel as guilty, but he does aways make sure we follow through on the promise as well.

I think for arthritis, Aleve actually works better than Ibruprofen. However, I know some parents say that Aleve isn't as effective for PANDAS. Wonder why.