nicklemama

At the moment, I think I'd pay since bloodwork was ordered on Mar 9th and I've been trying to get the results ever since. I've surely paid for the testing though. I'm feeling your pain.

I am so sorry to read your son is in his current situation. We are looking at the PET scan to help us get insurance approval for IVIG (that's all dependant upon either Dr K or Dr C approving of it). My worry is the PET scan will be normal. My son is definitely not his worst now, after abx. Its been 18 months since his first episode of PANDAS. There were some truly awful days, weeks, months. Things aren't nearly as bad as they were. I totally understand your psych visits. We're still there. We've had a visit to the psych ER, where my son collected himself and appeared just fine and we were questioned like we were child abusers, then he was sent home. This was before we knew about PANDAS. My heart goes out to you and I hope you find the treatment that will get your son back to the life he once had.

Telya- Did your son have the Cunningham test and if so was it in the PANDAS range? Just curious about how the PET scan and Cunningham test might correlate. Was your son in exacerbation when he had the PET scan? We have an appt w/ Dr K in two weeks and an appt w/ Dr Chugani in May. After 5 months of abx, my son is doing much better, although he has started up the eye tics again and still has some ocd, anxiety and intrusive thoughts. We are considering IVIG for our son.

Once you have read Cure Unknown, you will forever question the CDC, the researchers and their motivation for the particular research. FluMist set off my DS's first major exacerbation. I have no faith that anyone really wants to know that.

We've been wondering ourselves about IVIG. I resisted it when DS was first diagnosed. I kind of wish I had just gone for it. I wanted to see if abx would be the ticket. Well, 5 months later, its not. He did great the first two months on abx. Now, he see saws. We've had changes in abx. I don't really see much difference. Right now, he is functional. I know kids here who are much worse off then he. He's always been able to function at school, although I don't know how. His attention and hyperactivity were small problems. His behavior before abx was nearly intolerable at home and it kept us from doing so many things as a family. I think I have a mild form of PTSD from living through the exorcist behaviors. When I think I see them gearing up again, its nearly more than I can bear. Its been nearly 1.5 yrs since his first episode. I've come to the conclusion that we need to act now before its too late. DS is 7. I do not want these behaviors to become ingrained in him. We are seeing Dr K in 3 weeks.

Those are PANDAS behaviors in our house. My DS was not like that before PANDAS. When he's having a hard day, even warnings don't work. When things are going well, a warning of 5 min for bed or to get off the Wii or whatever, works well. He'll say "okay mom". On a bad day, he will stall, ignore and then get upset when you really push him. My dh is much less tolerant than I. He wants to just tell him to get off the Wii or go upstairs and have our son comply. DS simply is not capable of that anymore.

Boy, what I'd give to go back to those days, as I'm sure everyone would! My DS was such a good sleeper.

Can't go. Live out of state. Would you mind posting a summary of his talk?

I don't think the dose is enough for a boy of 12. My DS is 7 and we give him 0.5mgs each night. It helps him go to sleep but doesn't keep him asleep. I amy look into the Kirkmans timed release. In the search for answers to figure out what was wrong w/ my son, we've seen two neurologists, pediatrician, child psychologist, child psychiatrist and neuropsychologist. Every one of them okay'd the melatonin. I've been told I could go as high as 6mg but we've never gone higher than 0.5mg at a time. Even if my son wakes during the night, he will go right back to sleep about 99% of the time (I know because he's getting into our bed). On that 1% of time where he can't get back to sleep, I get up and get another 0.5mg tablet.

I'm actually mulling over in my head if I even have RA or not. I definitely have the joint symptoms. I take plaquenil and it keeps it in check, mostly. I have a mild case of RA. I am also what is called sero-negative. My bloodwork has never shown any indication of RA. I do not have the RA factor. My sed rate is always normal. I don't show signs of inflammation through tests like those for C Reactive proteins. ANA normal. I was diagnosed in 1997. My diagnosis was made on clinical symptoms (don't we all know that!) because of the lack of evidence through my blood labs. Hmmmmm......

Am I understanding this correctly? Mycoplasma is found in 50% of RA patients? What happens if myco is eradicated from those RA patients? Do they no longer have RA? Is it even possible to eliminate myco in RA patients? Is the mycoplasma carried by RA patients infecting their PANDAS kids? I have RA. I just had titers drawn for ASO antiDNAse B and mycoplasma IgM AB and IgG. My dh's were all negative. We don't really know what is causing my DS's PANDAS. He is negative for strep and myco. Cindy

Boy, can I ever commisurate.

Yes, we have seen that. My son did that. Hugged everyone. He's not been doing it for a while now.

Baloney on the negative titers and not being PANDAS. My DS is living proof that you can have VERY low titers and still have PANDAS. Abx has helped tremendously. I'd be VERY careful w/ SSRI's. My DS was 6.5 when Celexa was prescribed (before we knew about the PANDAS) and he became suicidal. See if your lyme doctor can help you. Give the neurologist a try. You never know. You might get help there. I don't have any good track record on getting neurologists(other than the PANDAS experts) to help. We've seen two of them locally and got no where. We are actually waiting on lab results to see if my DS made any antibodies to his pneumococcal vaccines. Move on from your pediatrician for help w/ PANDAS.

This was the presentation of PANDAS for my son. What we did not realize was we were interrupting an ocd or keeping things from being "just right". After 6 months, we saw a psychiatrist who diagnosed Intermittent Explosive Disorder. Well, that certainly sums it up. We placed our son on lamictal and it did help. It took the explosions of hitting, kicking, biting, scratching, spitting down to a level of more verbal assaults and redirected his anger at a bean bag chair. He was also in therapy at the same time trying to get to the root of the problem. We haven't seen a bad explosion since Sept 2010. Starting abx really helped put out the anger. When I see inflexibility and irritibility, I call our doctor. We've had a couple of abx changes. One thing I came to recognize is that if things didn't go exactly as he thought they were going to then, BOOM. He could not tolerate surprises or any change in the agenda. He had such inflexible thinking. He never had a problem at school. To this day, I cannot tell you how that could be.

I can relate. We missed my DS's ocd during his first major exacerbation. I thought ocd was washing your hands frequently, checking, pulling out your hair. My son was hoarding sticks. It was fall, the willow tree was losing limbs. He hoarded so many sticks they filled a 4'x 8's 3' high wooden play structure. He would climb up the ladder and fill his "fort" full of sticks. Then, he started cleaning. I knew that was ocd. When things are not good, he counts everything. He constantly adds numbers. He does that what we call weird talk like you mentioned "Are there any cracks water can't get through". He comes up w/ all kinds of similar type questions. He builds things w/ Legos and then won't allow them to be taken apart. His list of obsessions and compulsions was lengthy at its worst. He's also got a compulsion to tell me how much he loves me. He also tells me he needs me to tell him I love him or he needs me to hug him. I'll stop here. There's so many, I have to write them down to remember them all.

Irritibility, anger and raging/tantrums were the first symptoms my son had. The ocd's showed up not long after. He started hoarding things and cleaning, even his classroom at school. Would not play at all. Since diagnosis (one yr after onset) the anger and raging has disappeared. When he gets a flare up, we see some irritibility.

Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome. Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read. My child has: Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections. Never tested for strep until post diagnosis. Strep and mycoplasma titers normal. What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation He appears to be reacting to strep exposure. Two playdates w/ kids recovering from strep (found that out post play) and he exacerbated for a couple of days. Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? Cam K 144 Anti D1 2000 (2x mean) Anti Tubulin 2000 (4x mean) What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came latertics didn't come until a yr after 1st untreated exacerbation How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5separation anxiety, anxieties, fears, sleep disturbance 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+obsessions, compulsions, tics, rages, adhd, dialated pupils, phobias, fears, reassurance questions, regressive behaviors, nightmares, separation anxiety, depression, irribility, emotional lability, loss of social skills List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. Started biaxin, 250mg bid, for 60 days. Returned nearly to original baseline. Put on azithromycin 250mg for 30 days, prophylactic dosing only twice a week. Went downhill. Placed on Augmentin 500mg bid for 45 days, too many strep exposures at school, started exacerbation after making gains when first on Augmentin. Switched to azithromycin 250mg sid three days ago. We'll see. No other treatments thus far. Thanks for your input and time.

You are not alone! My friends son had some behavioral issues during/after a strep infection. He was hyper and silly. She told me she googled strep and behavioral issues and PANDAS popped out everywhere. I really raised my eyebrows when she was telling me this. Her neighbors daughter had strep and also had some kind of behavioral issues. They went away in both kids after standard abx treatment. I'm waiting for a reoccurrance and a phone call. I see it everywhere too. I am on a parenting board where a mom was telling about her son vomiting but no other symptoms and he kept vomiting once or so a day for quite a few days. I told her to have him checked for strep. She did. Rapid test negative. Culture turned up positive a few days later.

Antibiotics decreased the ocd. High dose antibiotics. Wilma, 8mg of lamictal is a tiny drop. Its nowhere near a therapeutic dose. My 7yo, 55lb son takes 50mg, twice a day.

I have no experience getting IVIG covered but I will let you know there are differences. We have BCBS PPO in Michigan. We also don't need a primary care or referrals. We have in network where the dr agrees to accept the payment in full from BCBS and out of network, where our particular policy pays only 60% of reasonable and customary, so you would be out 40% of the cost BCBS contracts for plus pay anything over that amount that the dr or hospital charges. You've got to read your policy to know. Also, dh's employee is a huge national corp and it self insures and pays BCBS to administer the policy. Each company can choose or refuse riders to the policy and tweek the policy to fit their needs.

My dh had his ASO and DNAse tested at his annual physical this year. Negative. My physical is next week and I plan to have it ran for me.

My husband is German. I am Irish, English, Native American. Our son(adopted) is Russian.

Interesting. I think my son may be hyper immune. He's never had a typical strep infection, only one ear infection per year, never tested for strep w/ ear infection. Never gets sick. His immune markers are all normal except IGG 4 which is high. He did really well on biaxin. He's currently on augmentin. Other than lack of strep documentation, his presentation was classic PANDAS. Too bad nobody recognized it at the time.

My son is 7, weighs 55lbs. He has been taking 500mcg (0.5mg) for 1.5 yrs. I was told he could take up to 6mg. That seems a lot. He doesn't need anywhere near that much and we won't up it until we see the need. I buy the 500mcg chewable tabs at Trader Joes. He likes the minty taste. Cindy