Phasmid Posted March 2, 2011 Report Share Posted March 2, 2011 If your child had IVIG, and had trichotillomania, did the infusion stop the pulling? What dose did you have? All other issues have been resolved after one low dose infusion. HOWEVER, now the pulling of brows is back (does it at night when falling asleep) and this is going to kill me. I don't know if this is OCD, impulse control disorder, self soothing due to anxiety, or what. But I can't stand this anymore. Thanks. Link to comment Share on other sites More sharing options...
JAG10 Posted March 2, 2011 Report Share Posted March 2, 2011 One HIGH DOSE IVIG stopped dd11's skin picking (akin to trich) immediately and has not returned since.......and it was really bad. Link to comment Share on other sites More sharing options...
butterflymom Posted March 2, 2011 Report Share Posted March 2, 2011 (edited) = Edited February 3, 2016 by butterflymom Link to comment Share on other sites More sharing options...
Phasmid Posted March 2, 2011 Author Report Share Posted March 2, 2011 I am moving to ERP and getting a referral at this very moment. I am also going to try to get a high dose infusion. After that, I give up. Link to comment Share on other sites More sharing options...
sf_mom Posted March 3, 2011 Report Share Posted March 3, 2011 (edited) Yes the hair pulling has stopped completely. We did 3 hdIVIG for PANDAS treatment and are now treating for chronic infection of Lyme, etc. Dr. K has also successfully treated children that hair pulling was one of the predominate symptoms. -Wendy Edited March 3, 2011 by SF Mom Link to comment Share on other sites More sharing options...
Mary M Posted March 3, 2011 Report Share Posted March 3, 2011 After IVIg with Dr K (his standard protocol), our dd's trich stopped immediately and has not returned. She is currently experiencing an exacerbation but NO trich symptoms at all. IMHO, many of her symptoms are different than previous exacerbations (2)...but that's a story for another post. Mary from Michigan Link to comment Share on other sites More sharing options...
Phasmid Posted March 3, 2011 Author Report Share Posted March 3, 2011 I am asking here, so I can keep all together on one thread. So, can you tell me how bad your child's trich was? My son is SEVERE with lost brows and lashes entirely. Bare. When did your child pull? Could she talk about it? Was there denial? Can you share what Dr. K. explained about trich. in terms of what it really is, anxiety vs. impulse control disorder? Thanks for sharing. Mary Link to comment Share on other sites More sharing options...
kimballot Posted March 3, 2011 Report Share Posted March 3, 2011 If your child had IVIG, and had trichotillomania, did the infusion stop the pulling? What dose did you have? All other issues have been resolved after one low dose infusion. HOWEVER, now the pulling of brows is back (does it at night when falling asleep) and this is going to kill me. I don't know if this is OCD, impulse control disorder, self soothing due to anxiety, or what. But I can't stand this anymore. Thanks. Phasmid - I am wondering how long ago your child's IVIG was and if your child has any immune deficiencies. I am told the antibodies from IVIG start to die off around 6 weeks and that 6-8 weeks can see some backsliding - especially if immune deficient. Was your IVIG covered by insurance and, if so, would you consider another? Link to comment Share on other sites More sharing options...
Phasmid Posted March 3, 2011 Author Report Share Posted March 3, 2011 My son's infusion was Jan. 6. So, it has been 2 months. Yes, he has very little response to pneumovax. He only responded to 3 of 14 types. The first infusion was covered because it was noted "immune, unspecified". Why did doc have to go and write PANDAS dx? They refused further payment. Trying to work out getting appeal letters etc. from docs and it is not easy. They say they are in the mail but I am still waiting! Phasmid - I am wondering how long ago your child's IVIG was and if your child has any immune deficiencies. I am told the antibodies from IVIG start to die off around 6 weeks and that 6-8 weeks can see some backsliding - especially if immune deficient. Was your IVIG covered by insurance and, if so, would you consider another? Link to comment Share on other sites More sharing options...
Mary M Posted March 3, 2011 Report Share Posted March 3, 2011 I am asking here, so I can keep all together on one thread. So, can you tell me how bad your child's trich was? My son is SEVERE with lost brows and lashes entirely. Bare. When did your child pull? Could she talk about it? Was there denial? Can you share what Dr. K. explained about trich. in terms of what it really is, anxiety vs. impulse control disorder? Thanks for sharing. Mary My dd pulled the hair on her head. She would pull hardest during a rage. Her hair drove her crazy. She would pull on it and scream about it. She wanted it shaved off. She cut it herself with scissors. Her hair was a constant source of frustration. She would complain it had too much static. She made me buy product for it (that's the OCD) but nothing ever worked. She wouldn't even use what I bought. She would scream and pull with both fists full of hair. When the hair pulled out...it was as if no pain was even associated with it. I would have imagined that it hurt. Now I know people who pull their eyelashes or eyebrows when they are stressed from work. My dd's presentation seems quite different to me than that. Dr K said IVIg would take the trich away. He did not go into a discussion about it. There was a marvelous video on the web a while back of an interview with a Professor in Utah who was doing bone marow transplants on mice with trich. The bone marrow transplant "cured" the mice. He gave some excellent explanations. I'm so sorry. I wish there were answers. But the IVIg seems to really help for many. Mary from Michigan Link to comment Share on other sites More sharing options...
vcarney Posted October 16, 2012 Report Share Posted October 16, 2012 I've been trying to gather as much info to help my 6 yr old daughter that started picking her eyelashes and one eyebrow less than a month ago (upper eyelashes from both eyes are almost completely picked). Before finding your forum, I've been googling PANDAS and IVIG. I really think there is a good chance that she has PANDAS or PANS; and I'm hoping that IVIG will heal my little girl. What I need to know is from those of you that IVIG has helped and stopped the pulling what dosage/frequency for IVIG did you use? If IVIG can help her, I want to try to get it right the first time. My older son had terrible tics for 2 1/2 yrs (he was 14 yrs old at the time it started). I was sure he was a PANS kid. We had tried several antibiotics. One of them, cut the tics by 50%. Which sounds like a lot but my son was still so miserable? But I knew I was on the right track. Finally, his doctor said let's try Minocycline. I don't really see any info on Minocycline used for PANDAS or PANS but it worked (it was a miracle). After a few days my son started having less tics. After about one month time, the tics were basically gone. We stayed on the antibiotic for about 3 to 4 months. When we went off of it, the tics started to come back. When back on the Minocycline again. It's been awhile now since he has been off of it and the tics haven't come back. I know I have to watch him close because whatever caused it (bacterial or viral) could always show up again. My daughter is too young to put on Minocycline and that's what lead me to IVIG. Another question besides dosage, did you have to use an antibiotic with IVIG to get recovery? Thanks for your input. Link to comment Share on other sites More sharing options...
vcarney Posted October 16, 2012 Report Share Posted October 16, 2012 Yes the hair pulling has stopped completely. We did 3 hdIVIG for PANDAS treatment and are now treating for chronic infection of Lyme, etc. Dr. K has also successfully treated children that hair pulling was one of the predominate symptoms. -Wendy Link to comment Share on other sites More sharing options...
vcarney Posted October 16, 2012 Report Share Posted October 16, 2012 Yes the hair pulling has stopped completely. We did 3 hdIVIG for PANDAS treatment and are now treating for chronic infection of Lyme, etc. Dr. K has also successfully treated children that hair pulling was one of the predominate symptoms. -Wendy Who is Dr. K? Link to comment Share on other sites More sharing options...
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