nicklemama

My DS age 8, had HD IVIG a little over a year ago. It has helped tremendously. He's pretty much back to normal. He has some minor ocd left, he smells his fingers. His social skills have returned. He no longer is angry, irritible, inflexible, and ticcing. His sensory issues have greatly improved. He still does not like loud noises and crowds but he can go places and adjust. He now has friends again. He is still on daily prophylactic augmentin. Before IVIG, he could not go more than a few months w/out a flair, either. He is now seeing an alternative/biomed physician to address some methylation issues we believe are at the root of his PANDAS. We would do it again, in a heartbeat, and will if he ever flairs up severely again.

Women who suffer from repeat miscarriage are routinely tested for MTHFR. I've had the test done. I'd say the big labs probably all can run this test. Its covered by insurance.

DS swims on a swim team in a public pool. I've never been able to associate any flares or difficulties w/ the pool. Summer has been (knock on wood) a very good time for him.

I would also add that when the methylation cycle is not functioning properly tryptophan cannot be broken down into melatonin and you get sleep issues. We do not know if my DS has a MTHFR gene or not (never been tested). We do know his methylation cycle was not functioning properly. During testing we found out he has/had very little tryptophan. No wonder he can't fall asleep w/ out melatonin. Sleep issues are very prevalent in PANDAS kids. This is just one more example of why a properly functioning methylation cycle is so very important.

I would just like those who think there are limited numbers of doctors to help to know that might not be the case. I haven't found it to be so. Here in Michigan, we have NO PANDAS docs. Thanks to another MI PANDAS mom, I was steered to a biomedical doctor who has started to treat PANDAS kids. Yet another MI PANDAS mom recommended him. He's not treating PANDAS, per se, but treating the basic dysfuncting of the child. I guess that's how I would describe it. Some people use the term integrative medicine doctor. These doctors are around. Many of them are treating kids w/ ASD. They are not limiting their practices to kids. I went to a seminar for ASD and found 5-6 doctors in my area who are treating kids for methylation, etc.... Network w/ ASD parents. Look on ASD websites. Do some calling. I really just want to encourage everyone to try and find someone. Treating part of the picture isn't as effective as having a doctor run the tests and prescribe/recommend everything your child needs. Just had a phone consult w/ DS's biomed doctor today. When school is out, I am to take DS off prophylactic abx for a week and see what we get. If he goes downhill, he will prescribe the prophylactic abx DS is currently on but running out of as he is at the end of the 1yr rx from Dr K. I'm starting to believe this stuff is going to work. I'm a BIG traditional medicine person. However, I'm changing my mind out of necessity for my DS. DS got a cold about a month ago. It lasted 1.5wks. It was totally normal in length. He had a flare up that lasted 2 days!!!!!! Unheardof previously. Before we started this biomed stuff, he had a cold that started in late Nov and ended two months later, necessitating treatment dose abx and it caused a decent sized flare. This time, I did not give him treatment dose abx, held my breath and low and behold, things were pretty darn normal. Don't worry, I still have a healthy dose of scepticism and I know this PANDAS business could come right back and bite us on the butt. I'm just being cautiously optimistic. I really urge everyone to consider biomedical/integrative type medicine. I see a lot of good coming from it in my DS.

Any of you use Biocidin? DS's biomed doctor has him on it. We started it on Saturday.

I won't throw tomatoes either but I cannot recommend going it on your own. My DS is being treated by a biomedical doctor. If you are looking for help w/ this, seek out your local ASD (autism) organization for recommendations for biomedical doctors in your area. These are not the same as DAN doctors. It does not have to be expensive. DS's biomed doctor requires payment up front but my insurance is reimbursing me for the visits. I'm only out the 20% deductible and the cost of the supplements. The B12 shots are covered by insurance.

I would highly recommend seeing an biomedical or integrative doctor if you are wanting to go in this direction. You really need to have biomedical testing of blood and urine done to determine exactly what your child is lacking, what your child is very high in and what is in the normal range. My DS is on methylfolate and methyl B12 injections under the supervision of an MD that practices biomedicine. DS also takes some other supplements. These were chosen for him based on the blood and urine testing the biomed MD ordered. DS started his supplements and has no problems. Giving your child these supplements because they work for someone else's child is not really all that helpful. Its like closing your eyes and throwing a dart and hoping it will stick. It also might actually do more harm than good.

Our DS has been sick w/ PANDAS for over 3 yrs now. He went more than a yr w/out a diagnosis. He had IVIG one yr ago. He's doing really well, for the most part. We do see flares. Not as bad as the original episode but they can be disconcerting. He has flares w/ getting new teeth. He has flares when he gets sick w/ a cold. He has not had any kind of bacterial infection since diagnosis and starting abx. He is flaring currently due to a cold he caught about a week ago. Its not an everyday thing but last night he had a meltdown when it was time to take a bath and go to bed. It was not nearly as bad as he was before dx but it also was not pleasant to experience. This occurred after he had a really good day and then played his best game of baseball ever. Its quite a letdown when you think things are going so very well. He is currently on prophylactic abx (augmentin) and he is receiving some biomedical treatment to improve his methylation/sulfation cycles. We started this about 6wks ago.

I think its common. My DS had lots of sensory issues. SPD was his first diagnosis when all this started and we didn't know about PANDAS. Its mostly gone away now w/ treatment.

I'll ditto everything Deedee said. Don't mess around and lose valuable time w/ doctors who have not treated many PANDAS patients. The quicker you jump on this, the better. The NIMH has a trial going on now. Your son sounds like he would qualify. I would do that in heartbeat. Go to the website http://pandasnetwork.org. They have the link info on the study. Call the NIMH today!!!!

I think its worth shooting an email to Dr K. They are much closer to him than anyone else. I believe he has treated older teens and young adults.

I really think there is no good answer to which is best. My DS had a terrible reaction to Celexa. I would definitely mention the sad feelings and wanting to die to his therapist.

I urge your sister to check her DD for all of the above recommended. We were told our DS was bipolar II. He does not have bipolar, he has PANDAS. All his bipolar symptoms have gone away w/ treatment. Honestly, I am questioning any early bipolar diagnosis in children. I believe they have PANDAS.

The biomed dr has him on B12 shots, B6, methylfolate, alpha lipoic acid, a digestive enzyme and biocidin. He switched DS to a better multivitamin, added borage oil (Omega 6) to the things he was already taking before we started seeing the biomed dr..........vit C, Omega 3, vit E, vit D. I think that covers it. DS is taking augmentin prophylactically and Detox Support probiotic also. He's also on Claritin daily for allergies and a yeast free diet for a yeast sensitivity. I would caution anyone that thinks about going out and buying these supplements to see a biomed dr for an evaluation first. These supplements are "prescribed" specifically for my DS and what he has an imbalance of. Every child is different. He will start low dose Naltrexone in a few months, after he's been on the supplements for a while.

We are working w/ a biomed dr. He believes the copper will come down w/ the treatments he's prescribed when we get DS's methylation/sulfation back on track. We did see bipolarish behaviors before PANDAS treatment.

I have no idea what it means but DS 8 has high copper and normal zinc. We have not done the MTHFR testing. We found out through testing w/ a biomed doc that we are seeing now. DS is 1yr post IVIG and doing really well.

My DS had these too. They were rather extreme at bedtime. They were very graphic and scary. He told me things he has NEVER seen on tv. They have gone away w/ abx and IVIG and now biomedical treatment.

I don't know about the blood brain barrier but my DS has been on 10mg of Claritin daily for a few months now w/out problems. His allergies are much better now. This was prescribed by his allergist, along w/ Flonase and Patanol drops on an as needed basis. We have not had to use the flonase or pantanol but just a few times. Before the daily Claritin, he was needing the flonase and patanol on a regular basis and they weren't the best approach.

I have always had normal sed rates. I've had rheumatoid arthritis for 15yrs. That said, I think the pain is PANDAS related. My DS's feet hurt terribly, at times. He hasn't had foot pain since he had IVIG nearly 1yr ago.

I don't know about starting before or after vanco but Saccromyces boullardi, a good yeast, is known to kill clostridia and I would give him S.boullardi, in addition to any of the other probiotics. I use Florastor for S boullardi.

Go see Dr Latimer. She's the expert in your area. As for the lamictal, it does indeed cut down/out the rages. That was our experience w/ my son. Don't be fooled. Its still PANDAS.

The short answer is yes. My DS was severely depressed and voiced that he hated himself many, many times. Also had an episode of suicidal behavior but it was linked to an SSRI med. He was only 6 at the time.

Sounds like my now 8yo who was 5.5 when all this started. His first diagnosis was intermittent explosive disorder, then sensory processing disorder, then asperger's, then bipolar II, then PANDAS. All these diagnosis in a yr's time. Current dx is PANDAS and allergies. He's not on any psychiatric meds now. Was on Lamictal. We started out w/ 25mgs a day and worked up to 100mg a day. He stopped lamictal, finally after a long wean, in early Dec. I recommend you get w/ a PANDAS expert and see what an he/she has to say.

I went to try and order Amy Yasko's book, workbook and DVD set from her website and from Amazon. Its out of stock in both places. I discovered that its being offered as a FREE download at Amy's website. I downloaded it yesterday. The title is Autism:Pathways to Healing. It covers methylation. She talks about how bacterial infections, including strep, can affect behaviors and the brain of children but she doesn't name PANDAS specifically, at least in the first couple of chapters I've read. Hey, its free and after plunking down over $200 on Tues for new supplements (and that's not including the ones I'm already giving), free is a welcomed relief!!!!!