lss

This young girl has recently graduated from high school and is fully recovered. I beleive she was one of Swedo's original 50 patients.

I promise to stop in for sure when the time comes. Linda

Worriedmommy, I am copying what my son's 3rd grade teacher emailed to me awhile back. Before the beginning of school, I took in copies of some of the medical papers to the principal and for the teachers/nurses so they could read and understand. The homeroom teacher asked me if it would be ok to explain to the kids, I gave her the example of the hiccups to use: I shared with the class about Jackson this afternoon. I explained that he has something that causes him to have tics (not the same as the bug). They were very understanding and empathetic. I talked to them about just being kind and compassionate to him, and to not come up to him and say anything about the tics. They came up with the idea to make a card of encouragement for him, so we will work on that tomorrow. Zoe even said, “If there was a ‘most courageous’ person of the month, I think Jackson would be it”. They brought up the idea that they would stick up for him if another student made fun of him. We used the hiccups example and talked about how frustrating it would be to have the hiccups all the time and not be able to stop. I explained to them that this is just something that happed to Jackson, it is not contagious and he didn’t do anything to cause it. They understand the importance of keeping the information within the class family and to really respect and support Jackson like a brother. Linda

Mandy, Congrats!

I wouldn't think so, but I really don't know. When Dr. K does IVIG they leave the line in and wrap it up completely, but the line they use for plasmapheresis is so much larger, I can't imagine, but maybe... Do you mind if I ask, is this thru Dr. Latimer ordering the procedure?

Isabel, I cannot imagine having to place the line into the femoral artery each day for anyone, much less a child! In order to do plasmapheresis they first need to sedate the person to insert the line. My son had plasmapheresis done last year and I can tell you that taking the line out of femoral artery was not painless. It hurts and once its removed, they need to place lots of pressure on it to stop the bleeding. I would speak with the hem/onc at Georgetown first and find out exactly how a "outpatient" plasmapheresis would work. Linda

He can still put Pandas down, but he ethically still should explain to the insurance company about his immune deficiency as well. Dr. K also rights a letter to insurance co.

Because of his immune deficiency, the doctor should not be using Pandas as the reason for treatment, but he should be using the codes for enceph. other

Just FYI- Dr. Quinten Collard is listed on the doctors who have helped on the board and she SHOULD NOT be on the list. She requested that her name please be removed. She does NOT treat Pandas. Linda

A CT scan would not be over the top to check for a sinus infection. My son who is 11 had a CT and an x-ray done to check for infection. The CT scan found a cyst in the sinus cavity, and they found staph in the cyst when it was removed. Excess amounts of phlegm are sometimes a sign of bronchitis.

Shirley, We did IVIG with Dr. K last Thursday and Friday and he gave us the prednisone rx AFTER the procedure just in case our son got a bad headache. He got a headache after the second day, but I only gave him motrin and saved the pred in case a "severe headache" occurred, which did not. Good Luck Linda How many did your son take? How is he doing post IVIG? My son did not take any, I only gave him motrin and his headache stopped. Remember, Dr. K said only for "severe headache", otherwise just give tylenol or motrin. BTW, he only gave us 2 pills just in case.

Shirley, We did IVIG with Dr. K last Thursday and Friday and he gave us the prednisone rx AFTER the procedure just in case our son got a bad headache. He got a headache after the second day, but I only gave him motrin and saved the pred in case a "severe headache" occurred, which did not. Good Luck Linda

strange about chlorine and tics....DS has been swimming a bunch over the last few days and his tics were definitely happening tonight! as for the motrin, if the morning starts out bad, I don't waste any time. i get a dose of motrin in him as quick as possible before it gets out of hand. i feel for you though with the behaviors. it sounds like you are talking about my DS the last few days. EVERYTHING sends him into an emotional meltdown. ready for treatment and praying it will work. If you have the kids soak in a epsom salt bath, it helps with the tics. Linda

Alex, Glad to hear that your son is doing better. We seem to have the same issue after Plasmapheresis as you and we're heading to Chicago tomorrow for 2nd IVIG. Not sure what set things in motion for us again, but we're back to square one as well. Teeth cleaning seemed to cause a flare as well. Hope you continue to see improvement post IVIG. Regards to D. Linda

http://www.liebertonline.com/doi/pdf/10.10...318700750070420 Here is a paper on aseptic meningitis, which is why the kids get the headaches and nausea. Linda

Are you sure he was talking about strep, or was it staph? Take a look at this: http://infectious-diseases.jwatch.org/cgi/...2/2?q=etoc_jwid

Manufacturer Pleads Guilty to Illegally Promoting Topamax Ortho-McNeil Pharmaceutical has pled guilty to illegally marketing the antiepilepsy drug Topamax (topiramate) for unapproved uses, according to the U.S. Department of Justice. Prosecutors said that the company promoted Topamax to psychiatrists to treat psychiatric disorders. Topamax is only approved to treat seizures and prevent migraine headaches. http://www.fda.gov/ICECI/CriminalInvestigations/ucm213163

Here is a link to all the alumni clubs. I have emailed the one in DFW area. http://www.alumniconnections.com/olc/pub/UOK/cpages/

Kelly, Vickie, Just emailed the OU alumni and asked them if they could post something on their page. Keep your fingers crossed. Linda

If the IgG numbers are high this means you had it in the past, if the IgM numbers are high, this means you presently still have it. Some doctors beleive in treating for it without IgM being present.

Just a FYI for those of you who have children with tics http://ajp.psychiatryonline.org/cgi/conten...journalcode=ajp

I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there. I can attest to the Singulair warnings, my son was rxd Singulair when he was much younger, at age 5 and I had no idea why he was having these horrible night terrors-psychotic dreams. He would wake up screaming, swatting at things that weren't there. When we stopped using the Singular, they stopped. Here is just one warning: http://www.aboutlawsuits.com/singulair-sui...engthened-4356/ Linda

Just an FYI for those of you in the New Jersey area Saving Sammies and Samanthas A book signing and informational session on PANDAS Beth Maloney Author of the book “Saving Sammy: Curing the Boy Who Caught OCD” Her son, Sammy and Dr. Rosario R. Trifiletti MD PhD (“Dr. T”) Child Neurologist and PANDAS expert Ramsey, NJ Saturday April 3, 2010 - 1 to 3 pm Livingston Town Center, 2nd floor Livingston, NJ lss

Article on the drug: http://www.usatoday.com/news/health/2008-1...ease-side_N.htm

Sorry about that, cleaned up today!