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Thank you Tammy--boy, can I relate. Hope your son continues to do well- sending out PV's----- Yes, I am giving ibuprofen 2x a day- I try to go without, no way we can. It does make a difference. We are in the process of booking the IVIG right now- looks like next Monday/Tuesday- I have to arrange child care for my other 2- although after last night, my in-laws are willing to drop whatever/take days off to help out in any way they can- so, next week. Thanks for the support. Just having a place to write this helps.

Is this how it is with you? You keep it together, push foward, plan for the recovery, work, and with this, keep the emotions at bay. Then those emotions come forward. My dd5 has been having the psychotic breakdowns- where she rages, cannot control her body, fights, spits, attacks, can't control what she says: I hate you! You're rude! Stupid! My DH and older son left last night to go to my MIL's. My dd5 has her breakdown. I can't get her off the floor for bed. My dd3, NT, is terribly abused, often. I leave her on the floor. I break. I call MIL's house, sobbing. I am scared. I am scared of brain damage. I think my NT dd3 is going to pick an abusive husband. Someone on here once said: It's like living with an alcoholic- you never know. Whole family is sick. I'm losing it- DH gets on the phone. I can't do this anymore. I need help. I am planning everything- 1st IVIG upcoming weeks- did the steroid- meanwhile, trying to keep her functioning in real life- I am terribly afraid most all the time. Time passes. Put PANDAS dd5 to bed- she 'snaps out' talking charming, she doesn't remember! Asks: why didn't you brush my teeth? You forgot to comb my hair! I am scared for her brain. She falls asleep, with melatonin I had to force her to take earlier in her rage. I watch the Autism One conference DVD 2010 of Dr. B and Lynn Johnson. When she talks about her son with PANDAS, how it's not 'just sneezing 25,000 times a day' like with her daughter, but the exorcist moments, not knowing, how they spent $200,000 in 18 months trying to get this beautiful boy help, he doesn't fit the pysch. boxes correctly, he moves to another home because of the effect on the family... My whole 'keeping it together' part is crumbling fast.

Hi- I have been doing bio-medical with my dd5 for about 1 1/2 - 2 years now..started GFCF diet, saw some improvement, and she became nutrionally sound- variety and healthy diet. Tried different things throughout, many, many things made no difference or had a worsening effect, quickly pulled. She had stomach issues (yeast overgrowth) and I thought Enhansa might be a good idea for more healing- (did NOT know about PANDAS) I started her slow- just like the instructions it comes with- waiting the proper time for increasing slowly the dosage- what I saw: Increase in talking, better conversations (my dd5 does not have any language delays, not autistic, but has always been wracked with anxiety.) She was more outgoing, my painfully 'shy' girl at the time. Better, regular like clockwork, normal bowel movements (less inflammation in her gut, she has always run constipated) When we got to the highest dose, I also added extra vitamin C - I got a huge viral pull out of her body- a chicken pox rash (no kidding) started on her torso, and it took 4 weeks as it worked itself down her entire body- I kept her on the Enhansa high dose throughout, my thinking I want this viral whatever to come all the way out-- when the pox cleared and left after 4 weeks, I ramped back down the dosage for a few weeks, and then pulled her off. I feel my daughter has had untreated PANDAS for years- that has influenced what we 'see' with other supplements--how she is, really. I recently bought more Enhansa- I plan to use it again with her sometime- but right now, we are heading to our 1st IVIG- maybe 3 or so months after that, I will introduce it again. From my research on it, and testimonies, it is either a big Wow for some (I felt it was for us, the biggest, after Azithromycin and ibuprofen) or, not.

My dd5, is 40 pounds. Our Dr. had my compounding pharmacy make Augmentin SR (slow release) capsules, 250 mg morning, 250 mg at night. We couldn't do it- within 3 days, it wrecked havoc on her tummy (but her tummy is not in great shape to begin with) she cut down on eating, drinking, poo'ing, and slid under the kitchen table at dinner time when I pulled it. Back on Azith. My point? (sorry) A compounding pharmacy can make what you need/easier. ETA: Corrected dosage.

Sorry, also wanted to add: Enhansa itself can cause serious die off in some kids- that is why it is best to go very slowly with it- Did you start both at the same time? Then it's hard to tell what is what. Here is Enhansa fact sheet, where it talks about die off: http://www.leesilsby.com/enhansa.php HTH.

Just wanted to chime in a little (welcome) When my dd5 was clinically dx'd with PANDAS, our Dr. also wanted to start with Omnicef- I gave it for 7 days, and wasn't seeing really anything- my intuition coupled with obsessive reading, wanted Azithromycin. I asked for it, got it, gave it dosed for treatment body weight, along with ibuprofen, and had some huge Wows! After 7-8 weeks, we started to back track quite a bit- then tried Augmentin SR 2x a day, my daughter's gut could NOT handle it- stopped after 3 days, we are back on Azith. (and I can't seem to stop giving ibuprofen, it helps so much) We did a 4 day steroid burst- things were not good while on the steroid, but now that we are off, I am seeing improvement... Watch out for yeast, (we give an anti-fungal) and probiotics are a must... Hang in there! I have used Enhansa before, and thought it was another Wow for us at the time (did not know about PANDAS then)

I'm happy for you Becky, the hope and having a plan is wonderful :-)

Yes, thank you so much. You did great! My dd5, nearly 6, we are now in the process of booking her 1st IVIG- could come in the next week or so. Your post was very helpful to me- I would be grateful if you continued with updates-- Sending PV's---

You are fortunate. And I know there are some others who are fortunate. I'm sorry, don't mean to sound negative. I tried to educate/bring PANDAS to our insurance Dr.'s. I had CamK test, written summary with strep timeline, symptoms, etc. They point blank told me: We offer free throat swabs, but only give a treatment course of antibiotics if the culture is positive. Point Blank. Do not understand PANDAS, nor care to. If we change our insurance for our family of 5, which means I may or may not get help from new insurance Dr.'s, it would be a crap shoot, it would cost us an extra $300+ a month. And, I just don't have the fight in me anymore. I would rather pay my $250. for 30 minute fee with our cash only PANDAS Dr. who gets it, who actually helps and understands how to treat my daughter. Yes, that means I pay full price for prescriptions at a compounding pharmacy, and I will be paying cash for our IVIG- but I am going to do it through Corham Center, which is close, and really is not a crazy price. (But cannot do more than 1, maybe 2 way down the line if necessary.) I think it all depends on the insurance company, and the individual Dr.'s themselves- I actually like my Ped. for my kids, but his hands are completely tied as to what he can or cannot do (HMO)

Our daughter had an adverse reaction to the varicella vaccine as well. She developed shingles and then within months, a PANDAS exacerbation. I often wonder if the varicella vaccine is somehow linked to PANDAS as PANDAS cases seemed to spike once that vaccine was introduced. It may just be me wondering, but I'd be curious to know if there was is an immune trigger in that vaccine that leads to PANDAS onset in our children. Because of this reaction and PANDAS, she will no longer receive vaccines either. I think we will stop vaccinating our son as well since PANDAS can run in families. It's been a difficult decision to make. Maybe an interesting tidbit: A year ago, (did not know PANDAS) I put my dd5 on Enhansa (curcumin supplement) got to the highest dose, and chicken pox broke out on her torso, and for the next 4 weeks, it slowly moved down her entire body. No fever, they didn't itch. Took her to a Dr., he looked and said: 'Wow! Looks exactly like chicken pox!' She was fully vaxed. I do not vaccinate anymore.

I don't even know if I should contribute here, I'm such a 'newbie' All I do know for sure, is that each of our children's illness is not the same. I believe in my heart, and also after testing, that my dd5 is true PANDAS, left untreated for years, and it is all auto-immune at this point, affecting her brain. CamK 175. We have been on anti-biotics for 3 months now. Currently on the last day of a steroid burst. We do not have immune panel defientcies. In my heart, I am quite certain we do not have lyme (no ticks ever, not in tick area, she has been sheltered, DH and I have never had a tick, never had a pet.) We have exposure to strep as an infant, with untreated fevers and jump off head growth chart, documented strep again at 2 years of age- everything down hill after that- I have spent years and $$$$ trying to help and figure out my dd5. Our insurance, HMO, is a tightly shut closed door. I am working with 2 PANDAS specific Dr.'s for consultation. We will be getting our 1st IVIG in the next few weeks- getting it set up this next week coming- We are paying cash for it. We will do this 1 IVIG, and wait it out- with continued use of antibiotics after. We cannot afford to do several. I frankly don't want to do more that 1. I have to learn to be patient, but at the same time, I am going forward to treating. Like all of you, our family has been deeply affected. And, my little 5 year old girl truly, truly suffers. After this IVIG, and continued antibiotics, and some natural remedies I also have to implement, we will wait out the year, and see where we are--

Thank you for posting! Wonderful to hear :-)

This is interesting. We don't have 'standard' tics, but breakdowns/rages where she loses control of her body- hitting, kicking, spitting, the light swearing over and over (can't remember medical term for this) at age 5, it is: you're stupid! you're rude! Stupid! :-(

I might call your local labcorp (your tech) and tell her you understand that is the labcorp policy, can she please double check that if you bring you dd in, it will be done? The test kit has instructions on how the blood is to be drawn- it needs to be spun (I hate talking about blood, sorry) it requires 2 vials. My dd5 has also had a lot of bloodwork over the last couple years- and much more this month alone. I hate it. Like you, we do have a special tech for our labcorp., who adores my daughter. But it is such an ordeal, as you know. Good luck---

Our local LabCorp did it for us- I spoke to their national customer service person, and the exact policy was: if you are having another test at the same time (paying labcorp for it) then they will do the Cunningham test. I had an order in for a CBC ($29 bucks, I think) I paid for it, but did not get it done, I thought it was too much at one time (2 vials for the CamK test) so they shelved it for me, I have it pre-paid in their system, for whenever I want to go up and get it done (the CBC) Anyway, we have a great tech at LabCorp by our house, who knows my dd5- she even packaged up the Cunningham test and sent it out for us--- HTH

Yes, intrusive thoughts and fears have at times kept my dd5 up for hours- I now give melatonin at night about 20 minutes before bedtime- she can fall asleep in her own bed now, with her door wide open and hall light on, but lately she is waking in the middle of the night, coming in our bed. Anyway, the melatonin helps us a great deal. Also, epsom salt baths.

YES, she does have a lot of OCD. Thank you :-)

Hi- I've read quite a few back posts on these (Buster's a certified genius) but if anyone has any comment, I would so appreciate it-- DD5's CamK score 175. Just got back the 2nd part of the test- everything was smack in normal range, the only thing 'outstanding', I guess, was Anti-Dopamine 1 Normal range 500-2000 Normal mean- 1056 DD5's - 2000 So even that is in range. Any thoughts? Thank you!

Fantastic news! Great, just great :-)

We have done immune panel work-ups (2x, last one within this month) and my daughters are all in range-I spent all last week trying (again) with my insurance company (HMO) and it is a CLOSED door. We have had grown cultures and blood draws on all the family here to check for carriers. We feel like she has suffered untreated with this for so long- my DH refused to participate in the Yale study- so we are willing to pay cash, we are so worried about our girl. I don't know what else to do. Starting a steroid today.

Hi, I don't really have any advice, but I can relate to what you are going through. My dd5 is in a bad, bad way right now. Antibx and ibuprofen are no longer 'taming' it. Just had a 3 1/2 hour rage where she attacked (hitting, kicking, biting) everyone in the family/with horrid name calling, it was awful. We are doing a steroid for the 1st time starting tomorrow (I was going to wait until Friday, but can't take this any longer. I am scared for her.) We are going for IVIG. We have to pay cash. One PANDAS Dr. I conferred with suggested 2.0 Our DAN! that treats PANDAS says 1.5 We cannot afford to do multiple IVIG's. I am also wondering if we should go 2.0 the first one...

May I please ask: are you on prevenative dose of Azith. after IVIG- 1x or 2x a week? Or are you on treatment dose for the year, every day? Thank you, Sarah

Just to quickly add, didn't make clear in my previous post: My dd5 is also REALLY suffering. I would never go so fast so drastic if it wasn't the case (duh, like all of us here) And she has been suffering for a long, long time :-( I can see us doing IVIG as quick as next month. Have dicussed it at length with our Dr.

Not sure I'm qualified to answer this, but, we got official Dx 3 months ago- but my dd5 has a strep timeline from an infant exposed to active strep in daycare, followed by a jump off the growth chart for head growth, up to hospital for unexplained fevers that never got figured out- and then a documented strep infection at a little > 2 yrs. old- things went rapidly downhill after that- she has been untreated for years. Her CamK is 175. We have done immune testing, etc. So far we've been on: Omnicef (no real impact at all) Augmentin SR (hated it!) Azithromycin Azith. is the winner, we've had Wows! with it, but cannot get her to a baseline- ibuprofen has a large impact on her- We are doing a 4 day steroid this weekend for the 1st time(she's off school for 4 days) I have looked/researched IVIG hard. Depending on what the streoid brings, I believe it is our next step. And soon. From what I've learned so far, every child's path is different here-

Also, the United States genetically modified our wheat (GMO) and it contains 15% more gluten than it ever did-- we have messed un-naturally with our food sources, and the human body (DNA) doesn't know what to do with it/hasn't caught up. I was told that much of Europe doesn't want our wheat. Remember that old TV commerical where the woman with the ominous voice says: 'It's not nice to fool with Mother Nature!'