Phasmid

Hello everyone, Wanted to give a, probably last, update on my son since this month marks 1 year post IVIG treatment for his PANDAS symptoms. It has been 8 years since all started. He had been treated with antibiotics, but didn't get IVIG until 2010, a low dose treatment. In 2011 he got one high dose treatment here locally at our own hospital, rather than down at UCLA. We worked with Dr. T. for initial tests and consultations, Dr. K for phone consultation, Sean McGhee, MD at UCLA, and our local pediatrician who was willing to learn, get up to speed, and think out of the box. My son was severe and suffered with every symptom ever listed for this disorder. He missed a lot of school, missed out on much of his young life due to the anxiety stuff, and suffered for six years with trichotillomania, leaving him without eyebrows or eyelashes. If it hadn't been for Dr. K insisting that high dose IVIG would be the only way to stop the trichotillomania, we may not have reached this point. His high dose was last September, and it took a few months to see the effects. But, one year later, my son has thick, dark eyebrows and his eyelashes are getting thicker all the time. He has not had a true relapse. He has become ill with strep sinus infection twice since then, and he did start to pull at eyebrows, but stopped as soon as he was started on antibiotics. His pediatrician calls in antibiotic orders to our pharmacy without hesitation when I call and report that he has a suspected sinus or throat infection. He also treats me at the same time if I have the same symptoms to keep me from reinfecting my son. So, we ended up getting the very best care, and have such a great local doc who saved us, literally. It is bittersweet, somewhat, because my son, now a Freshman, tells me that girls approach him and tell him he looks very nice with eyebrows, reminding him of his ordeal. I try to keep it in a positive light. This year marks the first school picture we have of him with eyebrows, since second grade. I am so thankful, and so relieved that this disorder is more understood now, and kids are getting diagnosed sooner and treated sooner. Please mention our case to anyone dealing with trichotillomania. I really was so skeptical that IVIG would cure my boy. God bless everyone, Mary

Hey TMom, As luck would have it, he got strep throat two weeks ago, and again last Friday. He has been on amoxicillin 500 , and I think I will keep him on through Strep season now. He did not have a return of symptoms, but he has been a little more emotional, kinda depressed. May not have anything to do with it.

Gosh, it has been a long, long time. I can hardly write this... have no idea where to start since it has been so long. Some may remember, my boy fought PANDAS or whatever the heck we call it now since age 4 really. Strep infections documented. In 2008 he had a horrific relapse at age 10. He has had trichotillomania the entire time, even when other tics and behaviors were absent. The last school photo of him looking "normal" was in 2nd Grade. He has had no eyelashes either. In 2010 he had a return of some terrible OCD stuff. Finally, in January 2011 my son had his first IVIG treatment, but low dose. His OCD went away for most part but trich didn't budge. In Sept. 2011 he had high dose IVIG over two days. I am so happy to announce that for the first time since he was 6 years old, my son HAS EYEBROWS!!!!! I was told it would take a long time to show any effect with respect to the trichotillomania. He has eyelashes coming in as well now. I can't believe I am so happy over such a trivial thing, but I know that y'all know what I feel. I hope that this gives HOPE to someone out there... I recall a few others suffering with trich. God bless everyone, Mary

I don't know who is still around this forum, but wanted to give an update. Hope many of you have had healing and lots of help. My son, now 13, just received a high dose infusion after 8 months of denials and appeals. His first, a low dose, was back last January. I can't re-tell our whole story, but will do as best I can. He received 40 grams yesterday, and 40 grams today. All went smoothly. Anthem BC came through after two appeals. I think we had success due to a very emotional plea in the form of a four page appeal letter that spelled out my son's suffering nearly his whole life. Also, it was authored in part by four different physicians, and contained a great deal of documentation. I honestly think that the final reviewer couldn't read it and still deny with an intact conscience. Anyway, we almost missed the boat. My husband, who I am separated from now, never mailed me the approval letter, which came in June! The expiration date was September 8... and I only got the letter on the 6th. Fortunately, our local doc, a pediatrician with ZERO experience with anything like PANDAS, was willing to work his butt off over the past few months to help write letters and make phone calls, and get educated. He also brought the other pediatrician up to speed, which was great, because she was the doc to write the last minute order to our local hospital and get everything set up in two days time and we had only seen her once before! Amazing. So, while we were scheduled the very next day, we chose to wait until yesterday to have it. They gave my son a private room in a short-stay wing of the hospital, and he had infusion over six hours. We went very slow to avoid the complications that he had last time with headache and nausea. After his low dose infusion in January, the remaining OCD that he had, anxiety, and echolalia stuff went away. His trichotillomania (he has no eyelashes or brows to speak of since age 7) stopped for two months, but then resumed. I was hopeful that a high dose IVIG would stop it finally. When we didn't hear back from the second appeal, I gave up. I brought my son in to the pediatrician last week (the day I learned of the approval) to put him on Zoloft for the trichotillomania. When the ped. said she could get him in to IVIG the next day, she told me to wait on meds. to see what happens. I don't know how this will hold up, but my son told me today, that last night he went to sleep without feeling the urge to pull his lashes. He said he "could just lay there." I don't really think it could work that fast, but it was interesting that he offered that when he is NEVER willing to talk about the problem or his urges, ever. Anyway, that's pretty much it. He did very well all year last school year, but fell apart again in June- three weeks till end of school. Some of his re-reading OCD had come back. He does tell me that it is still somewhat of a problem, but he is dealing with it well, and it may clear up altogether now. I will give another update in a couple of months after we know how this has affected him. Wish you all well, Mary

On PANDAS Network, summary of Cunningham's research.

Hi, The first episode my son had, he was not treated with antibiotics (actually he was given an antifungal, not antibacterial medication) but he still improved over 5 months. At his second episode, he was given antibiotic and his healing was MUCH faster- a couple of weeks. His third episode was more drawn out and complicated with chronic OCD that we hadn't recognized as such. But, he was better after treatment and about two months. So, it doesn't have to be permanent. My son responds very quickly to treatment though. It depends on the child and the treatment.

Sean McGhee, M.D., was my son's doc at UCLA and he is now at Stanford, Packard Children's Hospital. New Patient Appointments Parents and Patients (888) 275-5724 Sees Patients At Medicine Specialties 730 Welch Rd 2nd Floor Palo Alto, CA 94304 (650) 497-8841 Mailing Address Pediatric Allergy and Immunology 269 Campus Drive CCSR Building, Room 2115 MC 5164 Stanford, CA 94305 (650) 498-6073 Fax (650) 498-6077

bump, in case this isn't already resolved.

Hi momcap, my son has had this half his life now- since age 6 at the onset of PANDAS. We tried NAC. Didn't do quite the whole dose as per the study at Yale. What we did try didn't work for my son. We may try again. But he had low dose IVIG Jan. 6 of this year. For the first time, he stopped pulling for two months. He is pulling again. Eyebrows gone again. We are working on insurance denial appeal for high dose IVIG. Dr. K, in an email response to me, said that trichotillomania responds to high dose IVIG as it is a sign of immune dysfunction.

To be honest, it is best to provide them as little information as possible regarding the diagnosis. This should not be the focus of their attention. The team should be focused on the child's needs, no matter the diagnosis. You really only need one piece of documentation, and that is a letter from an M.D. stating that the child suffers from "XYZ" and the child will need the following written into an education plan. Forget about educating them on the specific diagnosis. It doesn't make the child's needs any more/less relevant. Been there, done that. They don't need the details. If they require more information regarding the child's needs, school administrators should be directed to the physician for consultation. If a "Why can't he/she do that in class?" comes up, a more vague response will get you farther, such as, "Due to the attention difficulty, my child's health care provider is strongly suggesting that my child be required to do only xyz."

Hi, and welcome. While chiropractic treatment may help make your child feel more relaxed, I wouldn't put my money there. You're going to need your $$ to be frank about it. I did, however, pay for hour long massages for my son when he was at his worst with severe motor tics in his neck, shoulders, and trunk. It helped him during the worst of it. I am not sure what bloodwork was ordered, but imagine it is the ASO and anti DNAse B - markers for Streptococcal infection? Some of us manage with antibiotics only, some IVIG only, some antibiotics followed by IVIG, and so on. So, it really depends on how your child is doing and the doc you choose to work with. If your doc presently is willing to treat based on the labs done, he/she may prescribe an appropriate antibiotic. Sounds like he'll have a learning curve. Not really optimum for you or your child. Azithromycin and amoxicillin are the two most commonly used. Some do better with omnicef, or a couple other antibiotics. Feel free to provide more details about your child so we can help more. Do you live near a PANDAS doc? This forum helped me and my son so much. Look forward to getting to know you!

Hi everyone! Have read some very encouraging updates but breeze through and don't have time to post as I have switched my obsession to something else Actually trying to focus on just being happy with how my little boy is doing. Thought I would give a quick update on us too. Just visited pediatrician to check on status of pre cert for two to three IVIG treatments locally with him, rather than travelling. So, this was second request (not appeal) for IVIG and this was denied, of course. First, low dose, covered in January. Docs want to do high dose to try to stop the trichotillomania. So, on to appeal. Doc says he'll help me every step of the way, and we'll go to insurance commissioner if we must. So, here's my question. My son is doing well. He's over the remaining ocd that was present. He HAD stopped pulling eyebrows, and they were growing in. He was on the azithromycin still. All was going well. Then I decided to stop the azithromycin. I think I slowly stopped it over about two weeks. It has been maybe one month now, that he has been off azithromycin? He also was found to be lactose intolerant, the probable cause of his g.i./encopresis issue that has plagued him. As long as he doesn't have any lactose, he's okay. Well, the past two weeks, he has pulled patches out of his eyebrows again. That may have corresponded with a new sinus infection that I didn't really treat, until two days ago when I started the azithromycin after a visit to walk-in doc who said it looked like strep in his throat/tonsils even though rapid swab was negative. Yes, his behavior kinda took a dip too. So, he's on azithromycin indefinitely again, per pediatrician today. Oh, and grades dropped across the board slightly since off antibiotic. Not bad, but from A's and B's, to B's and C's. What do you think; if all else is okay, mostly, is it worth hassling with insurance company through the appeal(s) to get high dose IVIG? Should I settle for half eyebrows? That's more than he's had in a long time! I just need a kick in the seat, as I am tired and lazy now and don't want to struggle with the insurance appeal. KICK ME!

It's maddening, isn't it? Dealing with doctors? I can relate to your experience (as many of us here can). The first doc we took my son to, in a complete panic because my son woke up one day with SEVERE and debilitating symptoms. He said he didn't see a thing wrong with our son, but we "need to see a psychiatrist." Wanted to throttle the guy.

Wow! Great news! So happy for you, and hoping for lasting healing.

My son was supposed to do an MRI but not to diagnose PANDAS, as our neurologist said it is not fine enough to detect those changes. She wanted to rule out other conditions. A PET scan would detect changes, but risk is not worth doing. My son completely freaked out when he saw the MRI machine and had a complete meltdown. We could not get him to go in. We won't be doing any imaging.