justinekno

I wonder if the kids who have an elevated CD3 and are not successful with IVIG, are the ones who have Lyme or some other co-infection? I agree with other people who say it is important to test for these other infections prior to moving onto IVIG.

He told us it takes about a week. I'm assuming longer if the insurance company fights it though.

My ds doesn't have the dilated pupils. I'm wondering if the majority of PANDAS kids do though?

Does he still answer those questions? I haven't seen much activity.

Aspartame is an artificial sweetner so maybe you could try eliminating that and seeing if it helps. I can see how anxiety would lead to migraines - something about the blood vessels constricting when under stress. Maybe some others on the board will chime in about that? Yes, I remember going from air conditioned car to air conditioned school to air conditioned house! We used to play outside after dinner!!

Do your sugarless drinks have an artificial sweetener in them? My sister can't do any of those or she will get a headache. Is your tea decaf? I hear you on the Texas summers. I grew up outside of Ft.Worth and when I went back a few years ago, I couldn't believe how humid it was. Ugh! Do you drink alot of water later in the day? Maybe if you make sure you are hydrated before bed, that might help. Do you have A/C? If I remember correctly, you have to take the Imitrex as you feel the headache coming on. Not sure how you would do that if you wake up with it.... Before you go to sleep or as soon as you wake up. My dr had told me that if you wait too long then it doesn't work.

We have a family history of migraines. My mom, grandmother, sisters and now my older ds(20) gets them once in a while. My son can take Motrin and they go away pretty quickly but I'm not as fortunate. I don't have any light sensitivity either although sometimes I can get nautious when they last for a couple of days. I tried Imitrex once and if I remember correctly, there were some side effects that made me think twice about taking it again. Maybe check the side effects online and see what you think? I wouldn't try your mom's bc they are prescription issued. Maybe see what your dr thinks first. I do watch my diet and that seems to help... no caffeine or too much sugar. Lots of water helps too. I also notice that stress is a HUGE trigger for me (the come down effect from something stressful can bring it on) and also humidity will do me in. Aleve seems to really help my migraines and that's what I have been using more recently. Sometimes I can feel the headache starting and if I take the Aleve it won't be so bad and last for so long. I also take Aleve if I know it might be a stressful day...

Deer in the headlights kind of look?

As far as supplements and food... We pretty much follow the Feingold Diet in a very loose way. We avoid sugars, artificials, hydrogenated oils and preservatives. We still eat out once in a while but I have my son order off of the adult menu - grilled chicken/vegis versus some of the ick stuff on kids' menus. My son takes daily probiotics, s. boulardii, B-6, magnesium and calcium (he is non-dairy). In the wintertime, we add Vitamin C & D to the mix.

Yes, it's like the positive p41 band on the Lyme test. Lots of PANDAS kids seem to have it but we don't really know what it means. What does the skin pattern look like?

It would be interesting to see if any other PANDAS kids have any similiar experiences.

We use raw honey from a local farm. We try to stay away from sugar as that seems to make my sons tics worse so I would be interested in the bee pollen approach. I was told by a naturopathic dr that it is better to eat foods grown locally, even better if organic, because our bodies do better with things that have grown in the same environment that we have. I think that makes alot of sense so I try to buy local every time I can and stay away from things grown in Mexico and other parts far away.

I have been trying to link the febrile seizure my son had at 15 months (virus, high fever) to the simple partial seizures starting at 18 months (resembled a rapid eye blink although sometimes it was a tic and sometimes it was a seizure - you could only know the difference if he was on an EEG machine) to the now eye tic that our neurologist said is a common occurence after the seizures are no longer happening (he has had two overnight and 2 short EEGs showing no abnormal activity and has not been on medication for three years). The first high fever at 15 months set off a chain of high fevers from 15 months - 5 years old. Most times we were told it was just a virus (sometimes ear infections were diagnosed) but strep tests were never done until age 7 when one test was positive. Two PANDAS drs think he has classic PANDAS symptoms (eye tic, increasing DNase B titer, short term memory problems, handwriting issues, some ocd, urinary accidents, camk 170) but what I struggle with is if all of this can be tied together or if it's separately occuring events. My gut says it's connected but this science is way over my head so it's hard to figure out how. Anyone have any thoughts or similiar experiences?

From what I have heard, Dr. B. works with Dr. Jones (the pediatric lyme dr) and does have some knowledge about Lyme.

If you're in or near CT, Yale has a good pediatric epilepsy clinic (maybe you already went there?). They should be able to help decipher everything for you and provide guidance. I guess all the different responses from different doctors shows how complicated the brain is and how alot of it is interpretation.

My sister has something similiar happen to her. She was diagnosed with Epilepsy as an adult but had seizures in her childhood which she grew out of and came back prior to menopause. She can tell it is about to happen before it starts. She gets a weird feeling right before. Do you happen to live near CT or Washington State?

Can you describe them?

Same for us - colors of the rainbow! My dream is to no longer hear my son yelling from the bathroom, "Mom, can you come check my poop?"!

I think if you search "cunningham" on the board, you will see alot of informative threads about the study and instructions on how to request the packet. I agree that it is a good tool to see if you are on the right track.

She had Scleroderma. She was between jobs when she got sick so she couldn't get insurance. I know there are people who have this disease and are doing ok so it doesn't have to be fatal, but it certainly can be, especially without the right treatment.

I love this comment!

Aren't we treating (i.e., IVIG) because this is an auto-immune disease and therefore it can trigger other diseases later in life, even if the initial PANDAS is in remission? My mom died at the age of 63 from an autoimmune disease (a big piece of it was that she didn't have insurance at the time and got ZERO decent healthcare but that's another story ). A dr recently asked me if I wanted to be tested to see if I would get this disease later in life. My quick response was no but then he said if I was positive, I could have IVIG and decrease my chances of getting it. It got me thinking of the power of IVIG and the reasons we do it, or at least consider it. It's kind of like playing god but hey, if I can save my child or myself, even later down the line, then I am all for it.

I don't think you'll regret it. Another set of eyes (and ears!) is always good. Have a safe trip!

I thought "failing" the test was just a way to get the insurance company to pay for IVIG?

I was looking through past posts about pneumo titers today and I think it was Peglem that said something about it being significant because even though they are two separate bacteria, they are both encapsulated types of bacteria. The pneumo tests show the immune systems response to encapsulated bacteria. We are running my son's again but his first ones were on the low side.