mom2gsd

I tend to agree with you. I think parents have to be diligent with their regular doctors, as well, as a DAN, so they are not pigeonholed with the group. I hate to be treated with the "new and improved" anything, when there is nothing wrong with the tried and true. I have always had a good relationship with my DAN, he is willing to listen and we often try things I want, I wouldn't hesitate to move on if this wasn't so. I'm an older parent and not willing to play games, we've been doing this for way too long. The best doctor makes it a team approach and listens to the parent. I do believe a diagnosis of autism can often times be a curse, most docs stop looking at them as individuals when they aren't improving, and push them under the umbrella, so from then on...we just blame the asd. Well, autism is not a disease process, it's a clump of symptoms that meet criteria, period. I'm with you, I want to find the underlying cause, where did my child go when he turned two?

I wish it was easier, but after a year of monthly IVIG's this has always been the normal pattern for my son. Especially tough after the first 3 days, somewhat related to receiving IV steriod/benadryl, prior to infusions.. My guy usually doesn't begin to improve until the second week. Hang in there...can't tell you how many times I felt like giving up, believe me...it's monthly. Seems like the rollercoaster will never end....but he is slowly improving, unlike most of the kids on here....everything is slow for us. Best wishes to you!

My PANDAS son had hives, years ago in kindergarten following a virus, they lasted for 3 full months. Appeared all over his body, and would come and go during the day.....raised welts, you could see them traveling on his skin, reminded you of elephant skin. He was limited verbal, so couldn't tell us anything, but sometimes they seemed to itch, and must have been painful...because he would literally scream in pain. It was horrible time for him, nothing really seem to work much and I felt helpless.....the doctor had told me early on that they have been known to last for up to 3 months....they did! But it also brought a regression of skills for him.

My son also has constant hand movements, his choreiform movements are pretty extreme sometimes, especially if he's happy or upset, just can not stop them. Usually twists/pulls on a rubber band, he will communicate that he can't control it...same with body movements, in general.....can't stop.

For us, the crescendo was a sudden onset, went to school fine on Feb 1 '08, but by 10am, school called that DS (now14) would not quit spitting, it was the first tic we had ever seen. Also has a dx of autism. He had a horrible strep infection we were having a hard time getting rid of, starting on Dec '07. I have never heard anyone having this particular tic, and not to the level that we had...or at least, I hope. Believe me, it will definitely seperate you! But in hindsight, that is when things began to unravel...it gave us some answers to the constant weird regressions over the years...mainly OCD but the strange movement disorder thing. So not sure how to answer the poll....sudden onset, yes....but maybe not, it may have been excerbations for years too.

We have done Neurofeedback on my son. He is minmal verbal but can communicate now in writing (on a white board), he continued to tell us that his brain felt so much more clear during treatments. We only did 20 tx, being so expensive, we just couldn't continue at $100 per tx, that insurance would not cover. I hope to go back to them one day, I do believe it helped him. BUT, even though the doctor that gave the tx said it would get rid of his PANDAS, IT DID NOT! I had researched Neurofeedback and emailed many brain researchers in the US, and they all agreed that Neurofeedback was a great tool to help re-map the brain. The best part of the whole thing was having the QEEG done, my son with asd has minimal speech, but I have always believed that he was "in there" and I knew he was intelligent, his QEEG IQ showed him in the 140's and that he had high verbal skills. In fact the doctor said to me "his QEEG shows he doesn't even have an autistic brain, may have ASP, but I would say he's been misdiagnosed". What a thing to hear when your child is so disabled with "something", I don't know what he has, but it has made me question everything....feeling like we had been on the wrong path for years and years. What he has does look like autism but I am beginning to think he may have had PANDAS all along.

We use GammaGuard; been at it monthly for a year. Have not had miraculous improvements, just slow and steady. No poster child here.

My son does the same OCD thing with pee and poop, which leads to the OCD handwashing that follows....seems to have a constant urge.

My son is the same, when he was dx with asd at age 3, I was told he was very mild and for a year or so he could imitate and do about anything you would ask. Of course back then I had never heard of Dyspraxia or PANDAS, but he regularly had ear and throat infections and continued to slip away, loosing skills every time, and gaining the movement disorder. The doctors told me that this was just autism, but in hind sight I always had that gut feeling, only....no one would listen. Can your daughter follow any and all commands when you ask her?

Does your daughter have dyspraxia (motor planning) problems? Or are these skills she has lost since being dx with PANDAS? Sounds like my son, it's not that he doesn't want to, but he does not have the motor planning to always carry out, very typical of certain types of dyspraxia. Self help skills are still difficult for him.

http://www.latitudes.org/articles/vojdani.pdf Here is a link to an article of Dr. Vojdani's. My son had this test done during the time it was availble, in Sept. '08; he fit the criteria on page 5 of severe PANDAS.

Of course we are from a small town, but can you not go to your hospital through their out patient department? Ours does it as a courtesy so there is no charge, and as long as you have a kit, they will draw it.

What GREAT news.....so glad that you found an openminded doctor, they are out there, just finding one is often times the problem. You did the right thing, I always tell our story that will touch their heart....and if they have compassion, usually they will listen.

We have gotten Anthem BCBS to pay, you might join this yahoo group below, they were very helpful to me: http://groups.yahoo.com/group/autism_insurance_information/ OR.... contact Christina Peck: blessedwithautism@yahoo.com she was the most help

My son receives monthly IVIG and has for the past year, we have never seen the headaches or vomiting. But our doctors protocol following IV, calls for Advil every 4 hours (while awake) for 72 hours. Although he is pretty hyper following the first 24, due to the IV SoluMedrol he is given prior to infusion. We also Anthem BCBS (KY) and they pay, I found a yahoo group "autism insurance" to be very helpful explaining how how to get things covered. Best of luck to you.

I also live in KY, my local doc (Franklin KY) is an older gentleman and very open minded. He has allowed our Florida biomedical doctor to call the shots and he signs all necessary paperwork to get my son treated....he has been truly wonderful. Not sure where you are in the state, but if I can be of any help please just email me.

I completely understand your frustration. My son will be 14 at the end of Feb, he has had PANDAS (or at least the dx) for soon to be two years. My son also has the dx of autism since 3yrs. Over the years he would regress after illnesses, and had strep many, many times, eventually he received the dx of dyspraxia (movement disorder), but now I believe that he had PANDAS all along. When he was 3, at the beginning he had very mild autism (PDD NOS), of course doctors would continue to explain that all asd is different, that's why it is called a spectrum. My son how receives IVIG, and will continue for 4 more months (Insurance approved). Are his tics gone, NO.....early on they almost went away, then he was again in contact with strep and they returned, overall he is better but he is not tic free, and continues with the movement disorder. Sometimes I can't tell what is dyspraxia and what is PANDAS, or is it the same?

We have been doing IVIG infusions at home since April '09, first one was done at hospital in March. We are now on two day infusions each month, total of 70Gm. The reason we are at home is because we live in KY, and our doctor is in Florida; insurance pays....my son has 4 more months scheduled.

Dr. Bradstreet's group in Melbourne Fl; we see Scott Smith PA. Receiving IVIG monthly since March '09; extremely helpful!!!!! bewell

My son will be 14 in Feb, has autism, and developed PANDAS almost two years ago. At present he is now on Zithromax weekly and receives IVIG monthly, since March '09. He has never been completely symptom free, still episodes where I feel like we have started all over. His tic is spitting, obsessive touching and constant chatter....although he is very limited verbal. He is on homebound sevices from school, due to his symptoms, since last school year. I thought life was rough enough but this is extremely stressful, I try my best to remain positive, and vow never to give up. To look back, I think he has had the PANDAS for the last 7 years, when things began to go downhill with his autism and started the OCD behavior. Not a very cheery reply, but I wish you all the very best. Warmly, bewell