jtp

Hey Jen, I got your message today and tried to reply but could not. Your messages were full. I'll try again later. jeannie

qannie47 Hi sent you a PM

sent you a PM

Hi Jen, My DS 14 is a patient of Dr B's too. He has been on a maintenance dose for almost a year and it took us about a year to work up to that dose. His reactions to the shots only a happened a couple of times and it was just a tender area or swollen area where the shots were given. Mostly he reacted to the mold injections...His worst allergy is pet danger then dust and mold. It has definitely worked for us, but keep in mind this a commitment. Especially in the beginning but now he receives 3 shots once a month. I don't have another appt with Dr B until this summer, but at that time we will discuss how long we need to continue with the shots. I'm assuming a couple more years. He hasn't had a sinus infection for a least a year and half. Sorry I can't answer your other questions, but we are really pleased with the results of the injections. Hope this helps.

Just found out they ran out of supply. It will be available again in a few weeks.

If you take Pharma Nac are you having trouble finding it in stock? I can't seem to locate it anywhere on line. If you have any info to share I would appreciate it. Thank you.

Oh my I'm sorry to hear that. I'm going to speak with our Doctor. I was a bit worried about that myself. I hope all works out. I tried to PM you before but your account was not accepting PM's. Thanks for the input.

Jenniferg, How is the helminth therapy going? We have just started. I'm curious to see if you are still seeing progress.

I had allergy shots as child and they helped me tremendously. My DS(with PANS) is currently getting allergy shots and he is doing much better. The shots have not increased his PANS symptoms at all. He would develop sinus infections from allergens. So far since the shots have kicked in he hasn't had any sinus issues... I also tried the air purifier, washed linens each week. Vacuumed more often. Nothing worked as well as these shots. But he's on his second year and it takes a while to kick in. Everyone is unique so you may not have the same results as us. But we are happy with the outcome.

Just curious did you ask if you can have a phone appt with his assistant to get the results? Sometimes you can get in quicker especially since you're an established patient... Also what about driving there for an appt...We used to have troubles getting an appt but lately it has been a lot better. From what I understand they opened up another day for appointments. But we haven't been there since July. We have not tried to get into Mass General but I would assume there would be a wait there as well. Hope you get your results as soon as possible.

Nancy, Brag away, that's awesome!! Jeannie

Oh that is awesome!! Thanks for updating, I'm really interested in this. Feel free to PM me too. Jeannie

I sent you a PM.

My DS takes this only 1 pill 2x a day for a few months now. Not for speech issues just because the Doc said it's a good quality fish oil. We may increase down it down the road, but dealing with infection at the moment so this is on the back burner. We haven't had any good or bad reactions using this.

jenniferg, Yes I have heard of this, and as a matter of fact, DS's Integrative Physician has suggested we check into this. She said most people can't get over the ick factor, but has seen some positive benefits...I was one of those parents that can't get over the ick factor and decided not to try it. If you do try this, please let me know.

Nancy, Thanks for the info. I really dislike finding a therapist it's like a shot in the dark. Since my posting this morning I sent out a few emails asking therapists if they heard of PANS. Much to my surprise they did. Two therapists were very interested in our case and were asking me for more information. Apparently both therapists have been contacted by other families with PANS. I gave them as much info as I could and told them they could contact me again if need be. As much as I like to hear that PANS is finally reaching therapists I don't feel comfortable sending my son to them as a test subject. I will check into the OCD website. And I also received a PM with a name. Love this forum, it's a life saver! Thank you.

My DS(diagnosed at age 12) is just about 14 and in 8th grade. He has been off of abx for a year and doing pretty well. He is being treated with allergy shots by Dr B. which has been very helpful with his sinus issues. I can still see that PANS is lurking in the background by a few signs and symptoms. We decided to give Dr O a try and she was amazing. We have a follow up with her next week to review all the lab work. Since puberty has now arrived and in full force he just doesn't seem right to me. I've noticed a bit of depression. He gets obsessed with video games or reading books. He spaces out, forget assignments etc. I have also noticed his leg is always moving, if he's sitting or standing up. Since most of our kids suffer with OCD I'm wondering if he has it. I have never been able to pin point OCD as the culprit, but from what I read on here it could still be an issue. I think he has a lot going on in his head and he distracts/or gets obsessed with other things to keep his mind off them. His answers to my questions are always, " I'm fine Mom". He said he is open to seeing a therapist. He is small for his age. He doesn't fit in with the rough & tough boys so he's a bit of a loner. But he has an amazing sense of humor, great writer does well academically(for now). He gets along great with teachers and adults. My question is what sort of therapy/therapist do I look for? Psychologist? Social worker? OCD? LMHC. He had a therapist for a time in grammar school but she said he was fine and we moved on. How do you find a therapist that is PANS friendly? If you are from MA, feel free to PM any suggestions. Thank you

Like Missmom I get a little nervous saying my son(13) is doing well(Pans began at age 8), because yes I fear another backslide. He was on Azithromycin for a year helped a lot but then had gut issues. Still feel like some gut issues are hanging around (off abx since May). His allergies are improving with weekly shots prescribed by Dr B. his sinus issues are better and we believe that's where most of this began. So we're hopeful. Lyme is always in the back of my mind but I can't bring myself to take that route for him just yet. I've been told that if he had lyme he would not have gotten better on Azith. We've had minor flares off abx but managing. The fear of a major flare remains.

Please add JTP +DS & DD...thank you.

I agree with Teri. He is well worth the wait.

I have a son with PANS and a daughter who was diagnosed with Lyme in May/June this year. My daughter has suffered severely with anxiety, depression, mood swings,add, slight ocd, eating disorder, allergies hives and so on. No psych meds have ever worked and she would have allergic reactions to meds. She's tried about 4 different birth control pills and had to stop them all for several reasons....4 months ago she tried Camila (progestin only bcp) and she's not perfect but she is soooooo much better. Still a bit moody at times but it's like night and day. She is now working more on her general health and mental health. So maybe there is something to this. hmmm.

LLM, This is exactly what I needed to read today. What a great article. Thank you. Jeannie

Wombat,My son and I are currently under Dr Lemke's care. She has never told me that we couldn't work with her if we were taking ABX. We really didn't discuss that too much since my son stopped abx a few months ago. I was also taking abx when we started but I was at the end of my prescription. I am trying to keep my son healthy enough so that he doesn't need to take an abx( it really messed up his gut). Only time will tell. I know we will continue working with her and our regular PAN's(Mycoplasma triggered) doctor and Integrative MD for now and see how it goes(she is aware of this). I don't think this post really helps since we are fairly new to homeopathy, but feel free to PM me before your appt and maybe I can update you further. For now both my son and I doing well. Good luck!

Computer design of toy prototypes aided by a great imagination !

Thanks for the info on Advanced Labs that is new to me, I will definitely check on that. As far as my husband and I being symptomatic, well maybe and possibly. It's hard for me to tell since I have suffered with a mycoplasma infection which from what i can tell has similar symptoms to lyme. I also have had off and on rosacia which seems to be in combination with my mycoplasma symptoms. So checking for lyme and co infections seems to be a good idea. My husband has(in our 19 years of marriage) removed many deer ticks from him and his clothing throughout the years. He has been tested annually for Lyme. But it has been the standard test at his PCP's office. A few times he was treated prophylactically. He has sore joints and just recently had a bout of night sweats. He is the one who has been exposed the most. Our symptoms haven't been severe but they still should be checked.