ptcgirl

Just ordered a kit for my dd. Was SO tempted to order one for me, but hubby convinced me to save the $.

Very Interesting! I'm trying to figure out how to find a good dr or info on LOW homocysteine and +mthfr c677t. Our llmd and pandas dr's don't know anything about them. I found an interesting article on it by Kara Fitzgerald http://www.drkendalstewart.com/wp-content/uploads/2011/09/Significance-of-Low-Plasma-Homocysteine.pdf and so I ordered Vital Detox Formula that has MSM, Glutathione, N-Acetylcysteine, and taurine in it. Does anyone have any info on this stuff? Feel like I'm trying to be a doctor here because I can't find a dr that knows anything about it. Ugh. My DD is doing pretty well right now (about 90%), I hate to mess anything up, but feel like if there is an imbalance it needs to be addressed. Thoughts? Advice?

I feel your pain and understand your frustration. We also had a similar situation. DD's dr convinced us to keep pushing Zoloft and then (when it stopped working) abilify to the max. Each time they would help a little (or not at all) but then it would go down hill until the point where our dr told us, "we can't do anything else after this." That is when we decided to go ahead and try IVIG. I'm so glad we did. At 12 yrs old, she was on 200mg of Zoloft and quite a bit of Abilify. She had severe OCD and depression. We were really scared. She'd suffered with these off and on for five and a half years. To make a long story short, the IVIGs (notice plural form) are working. She is only on 37 mg of Zoloft and no other psych meds now. She still has mild OCD but it is MILD and livable. She no longer is withdrawn. She enjoys being around others. She doesn't want to die. I have my daughter back. Ivig is the reset button. Abx treat the infections. Make sure that the staph infection is under control. Check for candida (blood test for yeast) and any other type of infection (mycoplasma, Lyme, co-infections, sinus infections, etc) you can think of. Then, if your child isn't better, reset with IVIG. You will know when to reduce the psych meds. Don't worry about them now. When your child is doing better, slowly decrease the psych stuff. Try otherwise to be calm and systematic. It is a long road, but worth it. Good luck.

We were thankfully covered by insurance, but I noticed on the insurance statement the cost was $13k per day (DD has two days per infusion). However the amount paid to the provider is much less. I think about $5k per day. Have you asked for a "cash rate" or the same rate that the insurance companies pay? I know that a lot of drs will do this for other things (not sure about IVIG, but it is worth asking!). Good luck. My DD has had 5 IVIGs and they are very helpful. Make sure that you have treated all underlying infections (Lyme, co-infections, mycoplasma, yeast, etc) before starting IVIG.

You are NOT alone. Plz try to remember that here you've found others with the exact same scenarios. I was in your shoes just last year. DD was on max allowed of Zoloft, abilify with its crazy side effects (dd started lactating! And stopped having periods!). Dd just continued to get worse psychiatrist said there is nothing else i can do. Had already been diagnosed with Pandas years prior by Dr Murphy but just didn't know what to DO wih it. Didn't want to travel all over the place to get treatment. no one in our state of GA does real treatment. To make a very long story short, dd started Ivig wih dr b in CT (yes, we travel from GA). Nothing short of a miracle. Had to address Lyme too and mycoplasma and yeast, but she is so healthy now. Seriously she's just about perfect. No more abilify. Very VERY small dose of Zoloft and will likely stop it within a couple months. My child is BACK. Do not give up. Your can get your child help. It may cost you a lot of $, travel, and trials but your child can be healed or at least greatly improved. Hang in there and don't give up!!!

KaraM thank you for sharing that! Landsmom, Dr jones is extremely kind and patient. He will answer any questions that you may have. He is the only dr I've ever been to that we didn't feel rushed. Expect bloodwork to be taken right away. Lots of it!

I have to agree with Dee Dee, although I've been in reactive's situation too. My hubby has ADHD and a decent amount of anxiety/OCD. When my dd developed overnight OCD we were shocked but doctors looked at family history and kinda nodded along that this was bound to happen. We tried a ton of psych meds. Seriously to the point of which her psychiatrist said he couldn't do anything more. That was nearly a year ago. My dd was 12 and had severe OCD, couldn't even go to school one day a week, was suicidal, unsocial and distant from everyone except me(mom). Im so happy to tell you that after many abx, five ivigs, ending and lowering all psych meds to nothing or nearly nothing, my dd now 13 is healthy physically and mentally. She is vivacious, happy, extremely engaged and social. It is miraculous healing. I believe God led our daughter to healing. It is not impossible even when there is a genetic predisposition. Don't give up. There is hope.

My DD is 13 now. At 9 yrs old she had a T and A removal. It was amazing. She was 100% for nine glorious months. Then she got Lyme and some coinfections. Everything came back. It was awful. It was worth having it done. I would do it again but it doesn't mean it would be forever. Just my two cents.

I agree with S & S that yeast may be the issue. We couldn't figure out what was still causing some symptoms with my DD after loads of abx and IVIG. Turns out high Candida was the culprit. Diflucan (a month's worth!) and Nystatin (daily while on abx) has taken nearly every single symptom away. Truly miraculous (thank God!). I will always make sure to have her checked for Candida each and every time blood is drawn. VERY significant for my PANDAS kid.

Absolutely one Ivig can make a huge difference. After the first one there was an enormous change in my dd. It is like hitting a reset button. Keeping her from getting sick again is the real challenge. The abx should help with that. Was she on the abx when she started the second flare

I was about to make a comment on the thread about the Pandas Network provider list and it has been locked. Huh? How did that happen?

That interview was amazing. I haven't heard of the movie but am interested now!

FYI: restless legs can be a side effect of SSRIs too. Not sure if any of your kids r taking these.

Well, I'm glad I'm not the only one thinking that it was odd for him to be left off of the list. It appears to me to be a personal situation between whomever owns the website and Dr B. This situation hasn't made me upset with Dr B. Truly I'm more concerned with now being able to believe anything that Pandas Network is putting out. What else is being left off because of their own agenda? I know how much Dr B has helped my child. To the bottom of my soul I'm thankful that we were blessed to be able to see him and receive his treatment. It just hurts to see someone specifically set out to lessen him and his worth to this community. Unless there is a reason of course. But it surely isn't what was written to me by them. Very odd behavior from this organization.

Hi guys! Yesterday I received an updated list of PANDAS providers from PANDASnetwork. Dr. B wasn't on the list which shocked me since I expected him to be one of the top on there. I emailed them and asked them why he wasn't included. I figured it was a mistake. Here was their response, "lists providers that follow the current NIH/NIMH recommendation for IVIG usage. We reserve the right to omit any provider from the website's public list." Ok.... Clearly it was purposeful. As I'm looking over the list, there are MANY providers that don't follow the current recommendations from NIMH. Then, that last part sounds almost defensive? I don't get it. Not trying to stir anything up, but wondering if there is info that I don't know about Dr. B or something. We've had only a wonderful experience. My child is extremely close (probably close: 90-100%) to being healed from his protocol. I'm confused. Not sure if one of you runs this site, volunteers for them, or knows something.

That's a bit unnerving.... I wonder if others have the same issue?

Oh crap! I forgot about giving florastor at the same time as nystatin and diflucan. It will negate the probiotic, right? Pooh! I've totally been doing that. Benadryl is only as needed -- probably every few days for help with sleep or allergies. DD and I both are insomniacs (which when she is in a flare becomes terrible!). I think we will start the odorless garlic and switch the probiotic to Truflora, Theralac or Ultimate Flora (anything I need to know about these?). Apparently, I've wasted a whole month of probiotics.... Nothing like flushing $$ down the drain. I really appreciate all your insights, everyone. My DD is having another fantastic day. It is nothing short of a miracle seeing how well she is. My dad was in tears last night when he came to visit. He is an atheist and said to me (I am a Christian), "Keep going to church. Looks like you got your miracle." Not trying to throw religion in this -- just how completely amazing this experience is for all of us. So thankful. I will to continue to pray for all of the children with PANDAS and also that mine will stay well.

Yes, be very careful with talking to insurance companies. They are very bad about not covering IVIG. Our Dr. is able to handle it and gets it pushed through for us. I was worried about IVIG too, but it turned out to be awesome for my kid. She has very little side effects (slight headache). She looks forward to getting them done. The infusion center where it is performed is nice and she's able to just hang out and use her computer for two days. Very relaxing to be honest.

My daughter gets IVIG every 8 weeks and it is a crucial component to getting her well. I say component because I don't think for mine that just IVIG would have worked. She is on abx and goes through ERP/CBT. Both of these are just as important as the IVIGs for my daughter. Also, be sure to check for Candida (yeast). It was the missing puzzle piece for my child. Given the long term history of abx use for your child, it may be part of the puzzle for you.

I think it is a mistake giving just the one. I read something about giving too much and decided to just do the one. How many do you give a day? She is 13 and about 130 lbs, so she is fine on adult dosages. How much should I give her? I've asked our drs and they really don't give a lot of credit to or info about probiotics. They just say to have her take one.

Your son sounds a lot like my child did preIVIG last year. She was in a very deep, dark depressing place with OCD. I was seriously worried that she would kill herself and wondered how long I would get to have my child. The first and biggest improvement after IVIG for her was mood. She became HAPPY again. The tears stopped. We still had battles for the next 9 months but the mood has stayed consistently better and that really helps. She became social again and wanted to live. She had Lyme prior to IVIG and was treated for it (still showing negative now). Herxed majorly -- sounds a lot like what your kid went through. I would absolutely get a good Lyme dr. We see Dr. Jones. Also, yeast (candida) became a big player in our world. I HIGHLY recommend that any child taking as many abx as mine, yours, or just about any kid from this forum, get tested for cadida. It caused a significant flare for mine. Good luck! I hope he feels better soon. Please let him know he isn't alone in all of this. Neither are you. : )

Yes, use advil. Hope you start seeing the good results sooner than later.

I just checked on the link above and over $10k was given so far. AwEsOmE! But he really needs more. Please consider contributing to his fund. He was instrumental in healing my child. He may be the one who helps your child too. It was easy to donate as it comes from your paypal or credit card. They take any amount. Even $1. I sure hope he stays in business and is able to train some younger drs.

Any news on Dr Jones? I haven't heard anything in the last couple of days....

Yes, mycoplasma is a big one in the PANDAS world. It sounds like you are on the right track with finding a new pediatrician and you are seeing a PANDAS dr. Azithromycin knocked out mycoplasma for my DD and it hasn't come back (thank God), but I know of a child that it just won't go away. I hope his is easily treated. This forum is extremely helpful for info. I know it has helped me. Good luck on your journey into the PANDAS world. It is a wild ride....