nicklemama

You need to knock it out. It can reek all kinds of havoc on your body. It is a known cause of rheumatoid arthritis which I have had for 15 yrs. found out in Oct 2011 that I have chronically high mycoplasma IgG titers. Started treating it with azithromycin and minocycline. 15 months later I still have high titers. That said, I no longer take RA meds. The abx is keeping my RA symptoms at bay. Who would have thought?

We are very happy with IVIG. DS has had two. First one in May 2011. He improved in ways we hadn't even realized we're amiss. Got pneumonia this past Nov 2012. It really set him back and we saw behaviors we hadn't seen in a long time so he IVIG #2 in late Nov 2012. It takes time to see improvement. Weeks, if not months. We started seeing improvements from this IVIG a few weeks ago. He's doing really well right now. I am going to be more proactive this time around and get him on a steroid burst or taper after any illness where he starts flaring. I have an appt for him to see a new local doctor I think is going to help us. We cannot afford IVIG each year. That's our unfortunate reality.

LLM- I don't have complete trust that it will never be disclosed. I addition, I can't see far enough down the road for DS. Lastly, it's his info and if I upend a can of worms and it comes back to him as an adult in any negative way, I'm the responsible one. Still, I'm thinking about doing it. I'm just trying to see all the angles before I pull the trigger.

My son has high IgG subclass 4. Its not been checked since Dr T checked them all 2 yrs ago. I'm about to ask a new doctor we are seeing in two week to run these again. Dr T told me it indicated allergies. It was 129 but the range goes to 121 at the lab where it was done. My son does not show any signs of pancreatic autoimmunity. He's rarely sick. I never checked into what this meant. One more thing to do. Should have also said none of the other markers were elevated.

dcmom- I'm glad you brought this up. I read Brain on Fire and I kept asking myself why she was able to get a boatload of IVIG, IV steroids, etc..... for a new disease and here we sit still fighting over treatment. Now mind you, I'm glad Susannah got her treatment. antiNMDAR receptor encephalitis can be fatal, but dang it, no one knows what really causes it either. Infection is one thought. Now doctors accept the treatment her very out of the box thinking doctor used on her. Why can't it be like this for PANDAS?

Welcome! I think you should prepare yourself to expect just about anything. In my experience, a few days of antibiotics is too soon to see anything but maybe tiny improvements. Dr T diagnosed my son 2.5 yrs ago. My son had PANDAS for about 2.5 yrs before diagnosis, the last yr before diagnosis was very rough. It took about a month to see good improvement but after a week or so, we were asking ourselves if we were imagining small improvements or were they actually occurring. My personal opinion is that it's better to catch it early and healing takes less time and maybe is more lasting but you can make major improvements years later, it just takes longer and you will probably see ups and downs as your child gets sick.

I'm back and forth on 23 and me. I have some concerns about the insurance aspect of uncovering genetic mutations and /or susceptibilities.

Approved for adults? Oh that's great. We all know it will be used off label and US kids will now be at risk for vax induced narcolepsy. I'll just be sitting around waiting until the parent reports start rolling in. I wonder what's in the flumist they aren't talking about.

We don't seem to be doing anything for the 1298. I need to do some more research on it. The biomed we see is highly in demand and while he wants to see DS every 3 months, he's booked out for 5 months. I have an appt to take DS to see someone else in couple of weeks. She has an asd child and is a trained ped doing biomed. I heard her speak about PANDAS at a biomed for asd kids conference. She's no expert but she's willing to learn. I'm going to to test her lol. I have a big list of questions. Only had to wait a month for an initial appt which will last an hr. she does phone consults in 15 min increments and she is local to me in that it is a 45 min drive. DS is not asd but that conference was very informative and I got to listen to the top biomed docs in my area.

Oops, he is not getting b3. I typo'd for b6 then added it to the end. For those not familiar, p5p is a form of b6. I'm glad you caught my error. I had read about niacinamide and have been wondering if it would be good to give to DS for its anti inflammatory properties. Guess I now know the answer! I am working with a biomed doctor who tested DS and came up with this plan. I'm not as good as LLM is in figuring out all this. I guess I should proof read lol. I see I had already put b6 down. Oh, we'll, can i blame it on PANDaS mom brain.

DS is taking B12 shots, B6,B3, methyl folate, zinc, alpha lipoid acid, fish oil, vit d, vit c, vit e, p5p.

My son is compound heterozygous and PANS. We've been treating MTHFR for 10 months. I do not see it helping the anger and rigidity. The only thing that has helped is IVIG and abx.

Having lived in Germany, I can say you don't hear all the scare tactics of flu season. The govt doesn't have a close relationship to big pharma. The govt regulates the price of drugs sold by pharma. People are much more likely to use homeopathic and natural remedies to cure their ills. Children are not vaccinated at nearly the rate, frequency, and extent of children in the US. I wonder how they manage to have greater life expectancy and lower infant mortality rate? Ok that was sarcastic.

Guess what number two? DS who is now 9 and never known to have had strep but has had pneumonia was adopted from Russia. We redid his vax' s due to questionable records. At 6 months of age, though, he hadn't had all that many.

I voted for you. My DS was diagnosed w/ aspergers just a few weeks before the pandas dx. He no longer fits the criteria for aspergers since pandas treatment.

Will not ever do flu shot or mist ever again. Flumist sent my son into first PANS episode.

DS9 is like this when flaring. I cannot relate it to exposure. He will only like who he likes, keeps a small circle and won't let anyone else in. Period. He will not play with other kids or allow them to join in. He wants to control the playing and gets mad if he can't. When he's doing well, he has no issues w/ friends and makes more friends. Then, he closes the wagons, so to speak, when he gets sick again. He does okay at school but comes home and complains about the same kids over and over when he's not well. He and another boy were having a hard time getting along at school. DS complained about him daily at recess and in the classroom. They had one particularly bad day and the teacher notified me and moved DS away from this boy so both could have peace. Since then, all has been well, no complaining. When I volunteered at school for the class holiday party, I was able to observe this boy and he has his own issues. No big surprise. DS does not do well w/ kids that have issues, probably because they don't observe personal space, which drives DS crazy, and they want to be in charge, also. You can't have two bosses, lol. Kids who are ADHD or really pestering type kids, he cannot get along with. It is too much sensory overload for him.

Five days of steroids is called a steroid burst and you do not need to taper it.

My son is 65lbs and 9yo and he takes 500mg of augmentin twice a day for treatment. If you can, get a doctor to prescribe a prednisone burst of 5 days. DS would take 25mgs a day for 5 days. Prednisone is a steroid. We are not talking about the anabolic steroids that body builders and some athletes take to build muscle.

Motrin and Advil are one and the same. I do not believe ibuprofen is the end all, be all for PANDAS dx. It helps us to take the edge off. It does not stop ocd or raging. I have never had it to make any effect on tics. I actually think I buy the chewable children's junior Advil. I'd have to go look at the bottle. I do not buy generic ibuprofen. I'm not taking any chances.

This is THE most difficult part of PANDAS, besides the raging. How do you discipline? When he's well, he's very compliant and wants to do well and be helpful. He had a very good day today. He is supposed to set the table for dinner each evening. That's one of his expectations for a weekly allowance. I might add, he hasn't had allowance for a month. He's been in an exacerbation and he's earned zero $$ because he has not done any of his expected chores. That's huge because he highly values earning and saving money (its been an ocd in the past). At dinner time tonight, he asked me what he could do to help and he filled glasses with ice and water for the very first time ever. He's just turned 9. When he's in flare or excerbation, he's not willing to do much of anything and it takes threats, warnings, follow through and then you may very well end w/ a big fat rage. I cannot cope with that. At three years in, I've had enough. I will just set the table myself. We have a star chart we've done for a few years to track the chores he's done. Tonight, feeling better than he has in months, he told me he no longer wanted the star chart. He wants to do his chores for free. He's tired of keeping track. Its too much. We started it to hold him accountable. I told him he would still get his allowance if he did his chores when I asked him to do them and we would no longer keep track. I also added I did not want complaining and I would not ask him multiple times. We'll see how it goes.

They are calling for abstract submissions. The deadline is mid April. How could we make this happen?

Landamom- I really don't know if it contributed. I have wondered about it. His biomed dr thinks its caused by gut dysbiosis and inflammation and that when these things are healed the sensitivity will go away. We don't really know if the florastor is a problem for his sensitivity. It's a saccromyces, as is brewers and bakers yeast so we took him off it.

DS did florastor for 17 months with no probiotics. He did not have any problems. He was mostly on treatment augmentin during that time. He'd still be on it but we discovered he has a yeast sensitivity to brewers and bakers yeast and I took him off along with going on a yeast free diet.

Count me in as skeptical. It could do us more harm than good. Lets wait and see who is on the program.