sptcmom

Thanks so much Mary. Thats the info I was looking for . Personal experience beats everything else. That makes so much sense. I will do that. Am going out to get Kids Calm in about an hour. Jodie

Jodie - I am not aware of the magnesium / ABX problems. We have been using calcium-magnesium supplements for several years. I don't recall hearing about a problem with ABX before. Let me know if you hear more, or perhaps others will chime in here! Kim DH just emailed me this one http://www.umm.edu/altmed/articles/magnesium-000968.htm Now Augmentin liquid contains magnesium stearate as an inactive ingredient. Its supposed to act as a medicine lubricant of sorts. Go figure.....

Thanks Kim. BTW do you know about the magnesium not being good for ABX connection? I'm confused totally about it. Jodie

Yes, I sent the blood out yesterday to Igenex. Now the wait is agonizing. I hadn't heard of Igenex prior to IVIG and ofcourse all his multiple Quest Western Blots were negative. Arrgghh! Dr Jones told me to start him on Zith 100mgs twice a day. I think I will go ahead. Seeing Dr Jones on Aug 25th thank GOD!! Now MAGNESIUM- I have the baby calm BUT doesn't magnesium interfere with antibiotic absorption? Thanks so much

DS8 is currently 11 weeks post IVIG, got over two strep exposurs at camp and still has two loose teeth. 7 days ago he started complaining of left leg pains mild which resolved with motrin once a day since then. We had 14 vials of blood drawn last friday for retest, Igenex etc. Monday night he had poor sleep with restless legs, muscle twitches. Yesterday midafternoon severe leg pain mostly muscles in his left leg, walks with a bad limp, knee is hyperextended, muscle tone looks low in left leg only. DS also complains of occasional chest pain last few days. I emailed Dr K. He said to do short term iron supplements and see what happens. DS has been on Augmentin 600 ES Twice a day for 20 days now. Is it still possible to get Rheumatic fever? He did have exposure at camp , twins with strep and I pulled him out within two days when I found out.This was July 21st. His symptom rampup from the exopsure halted early last week and he then got the leg pains and chest pains( occasional). Any thoughts? Thanks so very much- Jodie

Hi Amy VERY acute and astute observation indeed. I did infact notice this this last time I had to up the dosage. When the 1st bottle was nearing the end I think, his tics ramped up and subsided with the new bottle. I will keep an eye on this. I refrigerate mine as do you I'm sure but still seems to be wearing off. I wish DS would take pills already but he just can't poor little guy.

My DS had decreasing Ferritin ( stored iron) levels. We got our IVIG with Dr K. We spoke to him at length while there. Dr K strongly advised us to stop any iron supplements and to eat iron rich foods instead. He said Iron supplements increase the risk of infections in a child with PANDAS. So we stopped supplements a few weeks before IVIG (as soon as I spoke to Dr K for the 1st time)and have since been doing an iron rich diet. Please do email Dr K again to verify if you like.Iron rich diets can easily be googled and those will give you info on what to add on like vit c rich foods to help iron absorption and what to stay away from like carrots, lots of cjeese etc as vit A and excessive calcium will hinder irron absorption. Also animal (heme) iron is better than vegetarian iron.

Each child is different. Most children I've heard do experience flipping. We had it day one after IVIG (1st day) and things continued for 3-4 weeks post. It wasn't suicide period just anxiety because its hard to watch the little ones suffer. DS was 95% symptom free before IVIG and we still went ahead with the procedure so it was hard. Dr K infact likes to hear of herxing/flipping- says IVIG is doing its job. Ds's anxiety was waaaaay down post IVIG so it was bearable. I agree, just be prepared, knowing that if theres no reexposure, your child is actually recovering. I would suggest doing bentonite clay or charcoal to get those toxins out faster. That was wonderful advise SF Mom Wendy gave me and I saw an immediate difference the morning after. We saw stuff come back from when DS was 33 months and it was a revelation of sorts. A breathing whoosing sound tic we thought was allergy related came back on the plane ride back home two hours, and it hasnt returned yet. We know DS has had Pandas since 22 months probably right after MMR at 18 months and all 4 Prevnar failures. I didnot take Dr K's advise of putting DS back in school and exposing him to grups of children right away. Diana P.'s story is very compelling and I went that route and kept DS home for 4 weeks and then tried camp for 2 hours a day. Got reexposure anyways- twice, pulled him out and he's on the mend now. I wish I had totally followed Diana P.'s suggestion and kept him home all summer. GOODLUCK!

ILADS gives me a few docs in my area in NJ but they all have bad reviews except one. Dr David Dornfeld- DAN doctor and Lyme literate in Middletown/Shrewsbury in NJ. He is not accepting new patients since his associate moved to another state but he's gettng a new associate in October so things should improve.This doc has fair to good reviews for his people skills and very knowledgeable, excellent DAN doc, PANDAS literate, and overall not a bad deal if you want local followup care or immediate care in NJ. There is another one in the Flemington area. Will ask the Pandas mom near there and post later.Flemington guy doesn't take insurance but Dr Dornfeld does.

Thanks so very very very very much everybody for your invaluable thoughts and info. Ds has leg pains today and a belly ache, woke up early and is coughing. I just put him back to sleep. Will call Dr Jones again today and beg. Doing Igenex today or friday.

Just a related thought/info I remember reading here that Band 41 is a double star band for Igenex. So if band 41 is positive on Quest western blot testing then it was probably a false negative ruling for Lyme with Quest. I spoke to Dr Jones the lyme doc yesterday and he said that only Band 41being positive was of no significance. I am confused. I am going ahead and doing the Igenex testing anyways. Its curious why hardly anyone has come up negative on Igenex testing Sometimes conspiracy theories swirl in my head for no reason LOL!

Ds 8 had this problem oth in 1st and 2nd grade. Both homeroom teachers complained to me and I just treated for urinary tract infection with homeopathic meds which seemed to help so I presumed it was UTI indeed. I wish wish wish wish I had investigated further. The good news is that with IVIG it went away. I mean we did flipping the pages of increased urination for a few days but its gone currently.

Hi I haven't been posting much since last two weeks DS had two strep exposures at camp and was ramping up with OCD, hyperactivity and new tics.Exposures on July 19th (possibly week before), I found out July 21st and upped meds. Dr K suggested doubling up meds which I did.We saw hyperness go down, no add on of anymore symptoms. Over the weekend we decided to go the anti magnetic fields route. We pulled out our wireless router, all plugged in stuff, cell phones, replaced cordless with regular phone. The Wii wireless sensor and the TV remotes are still there- don't have an alternative yet. Added Oliveleaf extract and oil of oregano two days ago. DS has two loose teeth since Saturday. Been using a natural antiseptic mouthwash from Wholefoods Market and coating the two loose teeth with clove oil 2x/day. Then two days ago the tics have been really bad along with some new ones also sensory stuff- smells/sniffs his hands hard, sniffs his tennis raquet etc. Says "Im a big sniffer now mom".... I am TERRIFIED he's going to sniff up germs and God knows what else. Called Dr K. he says to further up the meds even more another 10 days and then if not better to do a steroid burst. We've never had a steroid burst before.Just Augmentin, Biaxin and IVIG. I am very confused 1) how does upping ABX help with tics? 2) Doesn't steroid burst first improve symptoms and then they come back very bad? 3) Is it safe to do steroid burst while still taking full strength ABX? 4) when the heck do I decide if the IVIG failed and we need a new one? Dr K instructed me in his email to just up meds yet again, observe and let him know after a week. I doubt he'll entertain followup emails and I am going nuts trying to figure this out. I'm so sorry if I'm being repetetive. I haven't slept in days. This last weekend my mom the gynecologist and almost 80 years old revealed a ton of my past medical history for the first time and its VERY significant for PANDAS from age 5 to age 14 and I've been trying to deal with that blast fromt the past but thats a future post. Please help....... Jodie

How about the doc who diagnosed your child with Pandas? An immunologist , hematologist and neurologist can do IVIG in children as far as I know. There are also infusion centers, local hosp ER, local VNA etc who can do IVIG but you obviously need a doctor's prescription, advice etc. IVIG is serious intervention as I'm sure you've read up on so having a good doc on your side is imp. Without naming names, a lot of healthcare professionals are poised at the right place at the right time and do consider that to be an enormous financial opportunity and the financial drain is happening to all of us Pandas parents, what can tell ya.......One doc has even started ignoring phonecalls from "old" patients and picks up only if its a new number which means a new, larger financial opportunity (.Gone are the days where scientists used to invent cures for the sake of science and benefit of humanity. All Pandas treatments come at a VERY large premium unfortunately. No one charges at cost like a true researcher should if your insurance doesn't cover.

The fish oil we use is from Cod Liver (Nordic Naturals). Would that cause shellfish allergies? I'm confused as to why would that be the case. I mean fish are fish and shell fish are crustaceans, different genetic makeup, genus and species I think. Anyways I would def consult your doc. DS has a huge buying problem anywhere and everywhere. We try to keep it confined to the dollar store LOL.

Im sitting here reading all this and crying. I am right there with you. We're 10 weeks post IVIG but have had strep exposure twice and two loose teeth. It was going well and then at 8 weeks post we had this hiccup. I am afraid to death of sending him back to school. My DH thinks DS is fine with the prophylactic abx but those didn't work at all when ds had the two exposures. Dr K asked me to double up which would've been only 500 mgs of augmentin so I just did augmentin 600 ES twice a day on my own and it helped. We still see a ramp up with new tics, behaviors etc. Whats the point of low dose abx if they don't really work with exposure. I am planning on sending him to school with full strength abx right now.

Thanks so much Wendy, Phasmid. I do plan on Igenex in 2 weeks and all titers too. I want to check on strep titers and myco especially. Phasmid- have you ever seen age regressed behavior? We've had that since forever, tantrums, can't resolve conflicts in school without crying etc. The immature child seems to be a part of PANDAS from what I understand. So does the child ever get age appropriate?

DS8 had an acute onset textbook PANDAS in March. We have been treating him with abx and are 10 weeks post IVIG with DR K. DS has the following behaviors (on top of everything else) 1) repeats catch phrases from books he reads (aloud) or TV shows (Suite Life, Zeke and Luther etc) 2) Has imaginary conversations pretend play like with characters of the show- makes up his own little show and talks to himself on the toilet, sitting down anywhere he feels hes alone and can do this 3) Reads the book or whatches the episodes over and over again 4) He's able to snap out of it instantly when spoken to or when he's finished his business on the potty etc. 5) he does it everywhere he can carry a book with him, back seat of the car, restaurant... 6) memorizes entire episodes of shows and repeats that often- plays all the characters himself- I mean enthusiastically, with gusto full on stage performance even on the potty 7) perseverates on catch phrases and laughs after each repetition- " thump, sock! " hee, hee and so on. 8) Even without a book or TV on, he recalls and repeats on and on and on......... Its very scary to watch him go into this world so effortlessly. He would rather just lay down and do that with a book in hand. I am constantly hearing him chit chat, repeat phrases, read over and over and over again. Its driving me nuts! bonkers! I simply don't know how to stop this. Nothing that I say seem to make a difference. he has also age regressed last two weeks- so very immature and childish , 8 going on 4 about understanding explanations. Almost like he doesn't even hear why I don't want him to not go to camp for a week ( we were exposed to strep at camp last week). he simply carries on about missing the show prep, swim practice blah blah. Is this part of PANDAS do you guys find ? Should I expect improvement with IVIG and full strength abx? Anything else I can try to help him? Do any of your children have similar issues? Its seriously weird behavior and his friends look at him like he's from Mars when they're watching a show together on a playdate.Any information will point me in the right direction. Thanks so very much Jodie

Very interesting. Actually tpotter could use it for her insurance woes. However this study is a low level study- a case series. Its going to take a heck of a long time to see randomized controlled studies with good evidence. Our kids will probably participate in a large study soon I hope. Thanks so much for posting. its very interesting to see the connections.My son presented with leg spasms, muscle atrophy, leg shaking, limping for a whole year and all the darn specialists were going down the ortho route, some neuro but no one did any strep titers. Oh well......

Just bullet points daily and I would use basic abbreviations. It will give him all the info he needs and save you time to talk more. I'm assuming u r having a phone consult.

This question isn't directed to me but wanted to let u know- we have BCBS. I deal with insurance companies on a daily basis at work. Most of the time its also the plan one is on that matters. The more comprehensive a plan the better ones chances are. I've heard of Oak Brook surgical returning parents money upto 6 months after IVIG when they've been able to get reimbursement after appeals. The best I've seen to date with regards to pediatric therapies (PT, OT, SLP), MRIs, procedures, IVIG etc is CIGNA. The reps will actually converse with the docs to come up with the best possible codes. Again the more cadillac of a plan you have, the bigger a client your company is and the better the care and attention you get from the agents but Cigna is by far heads and shoulders above the rest both for my patients and the IVIG stories Ive heard. Encephalopathy is fine if specific, its the NOS code being used that kills the deal. Not otherwise specified is the diagnosis code, so it can't really have a very specified Rx option with IVIg and thats why its rejected. Plus so many many many many IVIGs being done by Dr K with same codes and all that billing coming out of just one facility- sooner or later the insurance companies were bound to notice it was bound to happen. I was told that those codes maynot work for Dr K so much anymore. Lots of luck to you.

Its different for each child but most seem to go thru the process with old symptoms coming back, passing thru the body kind of. Some last hours, or some go on for days.Dr K says its a good sign that IVIG is doing its job. We had old old symptoms from 5 years ago come back and blow my mind. We had thought those to be a respiratory issue at that time esp since it went away. Don't be scared, just be prepared. Things do get better after the first couple weeks. Dr K says most seen are not new but we may not have seen them at home. He said many children are able to control mild urges for OCD at home but let go at school, sight unseen. I think we've seen a couple new to us but most of his tics, and ocd that are flipping are old stuff. DS was recently exposed to strep at camp and thats thrown us for a curve but Dr K asked us to double up his abx and we're struggling with the ramp up right now. 10 weeks post IVIG. Jodie

Mati's mom- Dr K distinctly said that DS could have flare ups when exposed to viral infections, vaccinations and of course strep is a given. So, pink eye by itself could certainly cause flare ups. We had two kids on Ds's bus with swine flu and it was really bad for DS with flare ups.

PANDAS diagnosis (there isnt even an ICD 9 code for it I don't think) is not very recognized if at all. Very much like what Sensory Integration issues were and in many places still are with insurance companies. Many therapists still use motor apraxia codes to get that covered. A related diagnosis code is used by most doctors- Dr K I believe uses encephalitis etc. We used an immune deficiency code since Ds actually has one as per his bloodwork and that helped. I agree about Dr B- I've heard he seems to manage esp since hes an immunologist per se.