nicklemama

I'm going to start a new thread but wanted you to know we've had a lot of success getting the yellow off the teeth after buying aOral B electric tooth brush for kids. I bought one after the last cleaning and his teeth are much less yellow than they would have been by now, three months later. It looks like he has/had ehrlichia.

I hope they blow BCH wide open and expose them. I have no knowledge of anyone actually working on a story. I'm just a lowly parent in MI hoping someone takes the reins and does something.

I am so sorry. I can so relate. I have been there, just not with a 115lb child. If you are going to do psych meds, I would recommend lamictal. Before we knew anything about PANS, our son was seeing a therapist and psychiatrist. We put him on lamictal. It will not completely get rid of the raging but it will tamper it down. The plus is that it is a glutamate modulator, which seems to be "off" in PANS kids. The negative is it will not work over night. It will take you many weeks to work up to a therapeutic dose. We saw some relief within two weeks but got the most after we reached a therapeutic dose. We were desperate. We did not know our son had serious OCD and intrusive thoughts. It has a black box warning about allergic reaction. You have to start low and go slow to avoid a rare allergic reaction. Every psych med has its drawbacks. We felt lamictal had the better safety profile. My best friend has taken it for 15 yrs or more for seizures. It's actually an anti seizure med. it's used in bipolar disorder, too. You may need a neurologist or psychiatrist to rx it. A little insight I've come to understand is when your daughter is dawdling, she' s probably going through some sort of OCD ritual in her mind and disrupting it causes anxiety to go sky high, hence the raging. She may have unfounded fears about you touching or brushing her hair or it may be sensory in nature. We've seen the wide eyed terror look too. My son was on lamictal for about 1.5 yrs. We weaned him off three months after his first IVIG.

My biggest concern is what doxy might do to DS's teeth. He's 9 and has many more adult teeth not yet erupted. Any insights?

I did read about the mortality rate. He's got zero symptoms of acute ehrlichia infection. He has an appt w/ his doctor. I also read you can be infected w/out symptoms. I honestly cannot tell you when he was bitten by a tick. We never knew about it.

You'll be lucky if you can get a rheumatologist to get onboard. I ditched my rheumatologist. I am seeing a DO. I got his name from the Road Back website that is info/support for those with RA (and quite a few lyme patients too) who want to use the AP for rheumatoid arthritis rather than heavy duty meds. AP is the antibiotic protocol developed by Dr Brown in the 40's. You can also google the MIRA study. Its a double blind study of using minocycline for RA. I'm doing really well on it. www.roadback.org

What do you guys think of this? DS tested positive through Quest for both Ehrlichia chaffeensis IgG and Anaplasma IgG. IgM on both were negative and the report says past infection. Still waiting on the rest of the lab results. Had so many things drawn it took two different draws. WB not back yet. This is my PANS 9yo son. Is it possible these results could be skewed by IVIG Nov 29 and 30? Ferritin is still low.

Yes! Since having him on treatment dose abx, we don't see it anymore. (Knock on wood)

My DS took Celexa with disastrous results. If I were to do it over, I would have given him a much smaller initial dose and I might have tried Zoloft over Celexa. But I did not know about PANS when we tried him on Celexa. It took about 8 wks to make him suicidal. He was 6 at the time. I may try that lemon balm for myself. I've about reached my limit on being able to cope with this PANS without pharmaceutical help.

I would ask for mycoP testing. IgM and igG. I have rheumatoid arthritis and found a new doc who discovered I have chronic mycoP infection. As we treat, my IgM is going up at each blood draw. He surmises we are drawing out the mycoP and my body is finally learning to recognize it. My IgG remains high and does not go down which is part of the chronic mycoP dx. I've had RA for 15 yrs without joint damage and without ever having taken any of the big gun RA meds. I am on long term minocycline and azithromycin and it is holding my RA at bay. I started the abx 1.5 yrs ago. Prior I took plaquenil which has damaged my eyesight.

Sickening.

Rant away. I'd like rant about quest but ill stick to the topic. You had her tonsils out even though they looked perfectly fine? Was she having recurrent strep or other infections? DS has an ENT appt to check out his chronically bleeding nose on Mon. I'm going to have the ENT look at his tonsils too, even though he has not had problems with them.

It seems high but I can tell you, my doc upped my vit D from 1000iu to 5000 iu and 4 months later, it has not budged. Mine is in the 50's. I have rheumatoid arthritis and my doc wants it in the 60's at a minimum, so I am to continue 5000iu and twice a week take 10000 iu's. Now, I am an adult but 5000 iu's would not worry me. DS takes 2000ius a day and has for several yrs.

I'm with you Dut. I believe one of the reasons we vaccinate so much these days is due to the fact that parents nowadays take newborns right out into public, expecting the rest of us to vaccinate the you know what out of our kids to keep newborns safe. In the old days, you kept your newborn home. If I could roll back time and have a redo, I'd do things very differently. If I tried to tell others, they'd think I'd gone off the deep end.

I hate to break this to you, but between my DS and myself (I have rheumatoid arthritis), we see three docs who do not take insurance. These docs do not treat us for everyday variety stuff. The sad reality is, if you want an open minded doc who will spend more than 15 min with you, you may very well have to pay out of pocket. Our insurance reimburses 60% for these docs. I pay upfront and fill out the form and submit the receipts. DS's PANS doc does take insurance, fortunately.

You will need to find a new pediatrician, unfortunately. Don't feel bad. It's a common occurrence.

I think a news reporter with an excellent reputation should get on this and see just how many children's parent are being reported to CPS at BCH. This might turn into a big story.

You are in the land of Dr Bouboulis and I would call tomorrow and get an appt. it may take a few months to be seen.

I highly recommend breaking the 500mg tabs in half vs buying the 250mg tabs. They are nearly twice as expensive.

Glad to know you figured it out and have a treatment plan in place!

In my experience with IVIG twice, it takes many weeks to start seeing results. In DS's case, then you see a pretty rapid improvement, stalling for many weeks, then more slow improvement.

I would consider getting into the NIMH Pandas study.

Well to throw a wrench on things.....DS had elevated D1 and normal D2 on the Cunningham. He is primarily OCD. He doesn't tic unless things get really bad. His antitubulin was sky high. He was mildly ticcing when blood was drawn but still had a pretty good OCD going on. He had been on abx for 6 weeks and had a drastic improvement.. This was at dx. DS just started a supplement with tyrosine and 5-HTP in it. It's in cream form and I have to come back later to talk about it. I have to run to book club. It's my night out once a month and I don't miss it, lol.

Wow. I think that's a first reported here. DS has an ENT appt in Mar for chronic bloody noses. His allergist wants it done and says it shouldn't be happening. I'm looking forward to seeing what the ENT has to say.

My son has had stomache virus two or three times and it did not set off a flare. I think you may very well still see the improvement post steroids. It's not instantaneous though. Took a couple of weeks for DS.