cobbiemommy

My son's cleaned up fine the last time he was at the dentist. He is not due to go back until November, so it is starting to build up again. I finally got to the point where I realized that even if he had to have veneers when he was older, it was better than feeling horrible every single day! Good luck.

Do you think Dr. K believes that most Aspergers or Autism is really PANDAs? I did hear him on Autism One Radio saying that the brain does not get sick, but that the body gets sick and affects the brain. Sorry to hijack the thread, but he never would commit one way or the other when I tried to pin him down. I think that much of my DS Asperger's is really PANDAs.

Make the call TODAY to Dr. K in Chicago. My son was diagnosed in February, 2008 with Pandas. The DAN doctor used only supplements, restrictive diet and allergy shots and kept telling me that Ryan would get better in 2-4 years, but that I had to have total compliance on diet, etc. We tried for over two years, spent thousands of dollars, and still he never got better-other than his eczema healed. We flew to New York to see an autism specialist, who also diagnosed Pandas and put us on antifungals for many months. Finally, when he put us on antibiotics, my son got better. That being said, when the antibiotic were discontinued, he got worse again. Finally, I found this group, and learned about Dr. K. He literally saved my sons life. My DS had suicidal thoughts, thoughts of harming others and was extremely defiant, along with verbal tics, ADHD, separation anxiety, physical tics and inflexible thinking. After HD IVIg, my sons suicidal thoughts and thoughts of harming himself are gone. We still have a long way to go for total healing, but we are making progress. TAKE THE ANTIBIOTICS! Give him a good probiotics, but take the antibiotics and don't stop taking them as long as he needs them. Because of your sons age, talk to Dr. K or one of the other docs about HD IVIg. I know I sound militant, but I would never wish the pain we have been through on any other child or parent. Best of luck to you. Cobbie

I think where you live must correlate to getting diagnosis. My son is the only dot in Missouri, but I can't believe he is truly the only one in Missouri with PANDAs. We traveled to New York and Chicago for diagnosis, though. So how many kids are out there, everywhere, that are being misdiagnosed?

My nerves are shredded after this summer. After over six years of dealing with my DS and his now confirmed PANDAS, I think my body is giving out. How do you get out of the fight or flight mode? We are only five weeks out from our first (and hopefully only) IVIg. My son is much better in many ways-no suicidal thoughts, less anxiety, and no physical harming. But, I just about jump out of my skin when I hear him use a certain tone of voice or he starts stomping around like a bull elephant. He usually resolves things on his own very quickly now, but I am a mess waiting for the other shoe to drop. Also, I think the anxiety of will the IVIg work or won't it is starting to wear on me. Lastly, we are still waiting on the insurance company to decide, so we had to put the medication on our credit card. My husband is a great guy, but is a workaholic, usally 14 hour days. I try not to complain because that is paying for all of this! I just wish there was someone to hand over all this responsibility/research/worry/etc. Good news did come though-our appointment with the LLMD has been moved up to the 23rd at 6:00 am. That is not a typo: 6:00am. Hopefully, we will get the last pieces of our particular puzzle. Thank you for letting me vent on this forum. I know there are stories that are more severe than ours, but this is the one I am living.

Hang in there! Take the leave of absence if necessary. If you keep crying and cannot (or barely) function get an antidepressant. Some might disagree with me, but I have ruined my own health with dealing with the stress of this. Don't be afraid to call the doc with a legitimate concern. Best of luck to you.

Wondering what, if anything, I need to tell my son's school about PANDAS, IVIG, ongoing antibiotics, strep??? They already know that he was diagnosed with Aspergers. They wrote him an IEP for social skills (50 min a week) which I did not sign because I did not feel that it went far enough to help him. He is still getting social skills help even though I didn't sign it which I am pretty sure is a no-no. He missed some of the end of the year with extreme anxiety and outbursts, but had been having trouble coping since forever. We contacted Dr. K right at the end of the year and did the IVIg in early July. My son is less anxious now with no suicidal thoughts, better eye contact, less resistance to authority and improved attention. He still gets anxious in large groups and still has a limited set of interests. That is changing--I caught him reading my DD's Seventeen magazine! He is also on a decreased amount of Metadate, no Prozac and antibiotics. I would love to have him off the Metadate, but I feel like we can only change one thing at a time and its time will not come for another month. Here's my concern. I tried to explain the whole PANDAS concept to the principal, but they looked at me like I was just another mom trying to explain away her child's behavior. Should I try again? Do I just tell them that he has a weakened immune system and that is why I need to know if someone around him is ill? Scared to send him back to school with all the germs and stressors. He said that he will have a better year because he is new and improved because of his IVIg. The power of positive thinking! Cobbie

OMG, this is so me. Let me guess, not only do you tell the doc what treatment you want, but you cite the research studies that show its effectiveness? And you can use all the big words that the doctors use and know what they mean?? The cups and toothbrushes! I wish everyone would chime in with their changes they made to their life to keep PANDAS away. This is very therapeutic and entertaining to read. I had to go see a psych myself, because I was having so much anxiety about my dear son's next meltdown. I am still not impressed with them! I joke that I caught my OCD from my son.

AMEN!!

We are only at four weeks post IVIg and there are some strange goings on inside my son's body at the moment. For the first two weeks, he was doing extremely well, but then seemed to backslide after the third week. He is more defiant and defensive at the moment and still has most of his OCD habits, nail picking, and obsessing about video games. But, he is also more willing to go outside of the house, go on jobsites with his dad, and does not throw a huge temper tantrum if what he is doing is interrupted. We are going back to twice a day antibiotics to see if that makes a difference. Maybe, your child should be on prophylactic abx (at the least) for the time being. I feel for you because this has been an extremely stressful time for us as I am sure it has for you. Try to take care of yourself as well: eat right, drink lots of water, rest when you can. I'm sorry you are going through this, but you can be sure that everyone here understands and cares.

I am trying to throw out a wide net for a quicker appointment. We have an appt. in October with one LLMD and another in November with a LLMD that is farther away. The doc that is farther away is actually my first choice, but we'll see how it goes. We put our names on the cancellation lists, so hopefully we will be able to get in earlier than Oct. I notice my DS, 11, is sleeping about 11 hours a night. Is that about right? I read that children with Lyme are very tired. My son gets tired easily and very agitated if he overdoes it! Did your friends son get treated for Lyme by Dr. K or another specialist? Also, Dr. K. just contacted me about increasing the Augmentin to twice a day (versus the prophylactic once a day). Hope this helps my DS.

We will not be getting the flu vaccine, either. Dr. K said no vaccines for three years and I agree. I cringed when we had to update my daughter's (non-Pandas) tetanus shot. Know it is very safe, but I think I am gunshy about all of these vaccines now. Cobbie

His regular ped said nummular eczema. Pityriasis rosea with no Herold Patch or tinea Corporus with no central clearing. He said it definitely was not a reaction to the antibiotic. He ordered us some Ativar (a souped up Benadryl, basically) for the rash and itching. Also, it helps him get to sleep, but that's not why it was prescribed.

First, Thank you to all of you for putting out such great information and compassion. Due to computer or operator (me) glitches I have been able to read only and not post. DS, 11, has been diagnosed with PANDAS by two doctors with minimal interventions, before I got desperate and contacted Dr. K, did a steroid burst, which was moderately successful. We then traveled from the Kansas City, MO area for HD IVIg in Chicago. After the IVIg, my son developed a head shake, which he had never had before. It is mild, but I am still seeing it from time to time. Is this common. Also, my son developed a horrible rash on torso, sides, and back. This eased, but has migrated to his upper thighs and buttocks area. Also, starting two weeks after the IVIg, the palms of his hands and fingers have peeled horribly. That is starting to heal, but I wonder what causes it. I have read that it could be strep or lots of other things. Also, first two weeks were really wonderful. Still lots of anxiety, but usually only at bedtime. He resolved several issues by himself. He used to call me Mommiepie, not in public, but a lot at home. He said to me, "I shouldn't call you that should I? It doesn't sound right." Also he had tapered off telling me loved me maybe twenty to thirty times a day. Two weeks after the IVIg, my family went to the grocery store like any other family. He went to the bathroom by himself, went and got items from different aisles with his sis or by himself, did not need to hold my hand the entire trip. Bliss! Now at four weeks, we are back to wanting to hold my hand all the time. Wants me to sit with him while he plays Wii, one of his obsessions. He is thinking about kids he hasn't seen for years because he changed schools and is going through crying spells all over again. He cries about the movie Monster House that scared him 4 YEARS AGO. He wants me to sleep with him at night. He is not sleeping as well as he had been. Bad dreams are waking him up. This is all worse than before we did the IVIg. Is this "flipping back the pages"? On the plus side, he is more willing to help around the house, actually go outside of the house once in a while. He also said the suicidal thoughts are gone. Yeah! Regarding Lyme, we were tested in 9/09 by Igenex. Results were IGM, stars only on band 41 and 58. But the IGG had many more bands. They were 18+, 31 (indeterminate), 34+, 41++, and 66+. Doctor was a DAN doc, but he thought the results were inconclusive. I have scheduled an appt. with LLMD in KC, but now I am not hearing positive things (moneygrubbing) about this doc. Ugh... We have been dealing with this since at least when Ryan was 4, but probably longer, because I kept asking the ped "Why is he picking his nails all the time??" He was two at that time! Sorry if this isn't very coherent, but I am stressed, tired, and the story (like most of yours) is so long and convoluted it would be hard to tell it in a short time. Again, I am very thankful for this group because I knew that I was not alone. All of you helped me get through some pretty dark days! Cobbiemommy