Stephanie2

I thought I heard somewhere that UHC changed their minds recently and that they decided not to cover IVIG for PANDAS anymore? Anyone else hear that? Stephanie

Vickie, Thanks, that did help. It gave me some hope that this is not all chiari related...maybe IVIG will clear up the lingering pandas issues and then I will see what's left and decide that there's not enough to do chiari surgery. Chiari type 1

Did I just reply twice to my own post? I think I did... What a day...

Oh and if this is not enough, he is scheduled for inguinal hernia surgery in the morning and is off his pandas meds for a couple days ! Prayers please! Thank God DS5's pandas is in remission at the moment!!

Oh and if this is not enough, he is scheduled for inguinal hernia surgery in the morning and is off his pandas meds for a couple days ! Prayers please! Thank God DS5's pandas is in remission at the moment!!

Hi Ladies, My husband and I had a talk tonight that has scared me half to death. We actually discussed whether or not we should pursue Chiari decompression surgery in the near future for our 2 year old little angel who has pandas and chiari among some other health issues (also recovered from autism - praise God!). I have posted these questions in the past and I got some response, but I thought I would try again in case there are some new people on here who have experience with Chiari and PANDAS. So here are my questions/theories: 1. The sensory sensitivities I am witnessing could be from both chiari and pandas, right? (sound, tactile, light) 2. How about feeding issues, can't tolerate any texture. He is at the point where he demands to eat only baby food! At first I thought it was part of his OCD, but now that he has done a steroid taper and his OCD seems to be mostly remitted, I am wondering if it is more of a sensory issue or even an inability to swallow whole food (some chiarians end up on feeding tubes until surgery can correct it - I am so scared that is where we are headed). Any thoughts? 3. Speech delay that comes and goes. I guess with chiari and pandas waxing and waning the way they do, it is hard to tell if both or either of these could be causing the speech issues. Sometimes my husband and I feel like he is making a ton of progress but then the words go away and it's like we are back to square one. 4. And here's the big question: Could the inflammation that is caused by PANDAS actually create a "swelling" of the brain that could be causing the cerebellar(sp?) tonsils to further herniate into his neck, thus the worsening of chiari? I really just wonder if I should do IVIG first and see if the "swelling" goes down and if not then pursue the chiari surgery (not the other way around). Unfortunately, there are no MD's or scientists that would have these answers b/c there are no studies that look at the overlap of chiari/pandas. Any input would be great! Stephanie Facilitator - PANDAS Support Group of Florida, affiliated with www.pandasresourcenetwork.org

Itchy inner ears could be a sign of yeast (due to recent antibiotics/not enough probiotics?). Also, I do believe that kids can have sinus infections at a young age. My 2 year old had them in his first year of life until we were able to improve his immune system. Stephanie

Thanks! Glad I could help!

Breaded cutlet!!! That is classic! Thanks for the laugh!

Thanks! Actually, she has walked in on me while I was crying to my husband about our boys. My brother and his wife have witnessed all this and they know how hard things have been. She really does know that she is fortunate that her children are healthy b/c she has us to compare to. While we are always at MD's and therapy, she is taking her kids to ballet and playgroups. She tells me all the time she does not know how I do it... For the most part I have come to accept my life and I have come to appreciate how far we have come with our boys. I was just having a moment of weakness that day (I posted this a couple weeks ago).

Great, so those of us who got away without autism, well our babies are still subject to alzheimers with the aluminum...lovely, just lovely. I tried so hard to stay away from this thread...just couldn't do it ! At least I kept it to one line...

Oh...right...it's for your son Well, you may be able to get it at Whole Foods. Or vitamin shoppe... Hope he responds well! Have a good weekend!

Gee, fixit, I thought you wanted to get this thread back to technical talk Let me guess your husband read the post over your shoulder and said "GO GET SOME NOW!" Haha! You can get it at a healthfood store (I get mine at iherb.com). But start low and go slow. And consider getting an integrative medicine doc on board who specializes in bioidentical hormones so you are doing it right. I promise you won't regret it! I get the 10 mg capsule and I open the capsule and dump about 3/4 of it out then I put the capsule back together (2.5mg). I might order the 5 mg capsule (pure encapsulations makes a 5mg) next time and just dump 1/2... BTW, men take a lot more. They start with 25 mg and go up from there...I just started my husband and I have him up to 40. I need to get his blood drawn, but we do know his testosterone tested low.

That is a tough call but maybe the decision comes down to the size of your wallet and if IVIG is covered!! If I paid out of pocket for one of my kid's IVIG I would not knowingly put them at risk in the time following it. I'm sure the child is not contagious anymore, but strep lives in the environment for a long time. He could get it from a doorknob or something (if it is at the child's house).

I've done a lot of research on DHEA, and I would say that is one of the more informative articles I have read. My doctor did test all my hormones and I am also on progesterone (bioidentical) which is probably why I can only tolerate a small amount of DHEA (actually, I feel better on more, but I got sick of my face breaking out). Also, I wanted to mention that my doctor did say that I had adrenal fatigue (dx'd by the way my eyes dilated very slowly when he put his hand over my eye and then moved it - something like that). I am sure many of us on this board are in adrenal fatigue. The way the article describes it, it's almost like a downward spiral. High stress leads to decreased production of DHEA, which leads to not being able to manage the stress, which leads to depression, which leads to producing even less DHEA, which leads to less tolerance for stress, which leads to crashing (which I have done so many times since my oldest was 2). She mentions that you can break the cycle by changing your lifestyle which will help you to naturally produce more DHEA, but like many of you I was not able to change my lifestyle with all that was/is going on. So the hormones (progesterone,DHEA) have helped me to break the cycle. Now I am cycling back up and really pulling it together. I just needed a boost that I could not provide for myself... Hope that helps someone.

Yes, I was going to email you! I have one other local woman I need to contact eventually... Stephanie

Tell your DH to WATCH OUT! :-) When I was taking 5-10 mg it was almost rediculous! LOL!

Where in Florida?

No, but that is so cool b/c the only other person I have met with pandas kids is Scott Smith. I need to get some mommy friends around here with pandas kids. BTW, Lynn, I sent you an email via pandasresourcenetwork.org regarding starting up the Florida support group. Lynn Haber contacted me and told me to get started. You can feel free to add my name to the website. I really hope we can get things going down here in Florida!! I'd really like to get some awareness going down here too... Stephanie

Wow! I'm a huge DHEA advocate!! I take it myself (my levels tested low on bloodwork) and it has done amazing things for me!!!! It has helped me to manage stress SOOOO much better (ie...I don't fall apart with the crap hits the fan...which is everyday around here ), and it has given me quite the libido which makes DH smile!! I have to say this, though, I can only tolerate 1.25-2.5 mg otherwise my face breaks out. 10 mg twice a day for a child sounds like alot, but I don't know anything about taking it along with steroids...interesting...I'll have to run it by the boys' DAN practitioner... Stephanie Thanks for the info! We've got a steroid burst "in our back pocket," but we've been somewhat reluctant to go forward for a host of reasons, the moods and hunger being two. At least now we know what to try to mitigate some of that.

I wanted to let everyone know that I contacted Lynn Johnson (sneezing-girl's mom) awhile back to offer to start up the Florida PANDAS support group which would be affiliated with her organization, pandasresourcenetwork.org. Lynn Haber, the woman who is coordinating the support groups and is running the Connecticut support group, contacted me and told me to go ahead and get it started. There is no particular direction they want me to take with it at this point. I wanted to get some feedback, see if there are any other Florida mom's on this forum (doesn't seem like there are too many), see where everyone lives and start coordinating monthly meetings. After I get in contact with some parents I will set a time/date/location - maybe rotate between West Palm Beach, Tampa and Melbourne (where my kids' DAN practitioner is located who is also on the medical advisory board of the organization - I may be able to twist his arm to meet with us now and then ) - that way we can hit all corners of the state. I don't have a ton of time to devote to this at the moment, but I do have enough time to get the ball rolling, start making contacts, etc. Even if we just form an "email" support group until there are enough ppl, at least that would be a start! Also, does anyone think I should contact Beth Maloney to affiliate our group with her? I don't see why it would hurt... So...feedback, please! Stephanie

Doing spiro and LDN for both kids. Hope you get some answers soon, I know you are not having fun!

OK, if I were not emotionally numb from the lexapro (and multitude of supplements) I require to keep me going through this journey, I would be crying my eyes out right now! I have to say that I have been down this road with both kids and I have responded so differently with each boy. With my first, when his personality did an about-face for the first time, I came down very hard on him with all sorts of discipline programs and I fought him on every ritual/compulsion b/c I just had no idea what I was dealing with! Didn't get pandas dx until we were 3 years into it! My poor boy has been through so much and he is such a trooper at the age of 5. He is so mature for his age b/c he has had to overcome so much... But with my DS2, I am just so permissive and understanding and loving with his problems. I try not to let him become a brat b/c he is 2 and does need some discipline, but he is definitely getting a lot more patience with us b/c we know we just have to ride it out with him to the finish line. I used to feel so sorry for myself and my husband but now I just really focus on the kids' happiness b/c I know that they need me now more than they will ever need me. I have finally learned to put my feelings aside - I guess all moms eventually learn that, maybe not to the extreme that we are forced to... At the same time, as my children heal I am trying to take my life back!! Boy do I need a life!

I'll give a brief timeline of what we have done and where we are: DS5: Jan. steroid burst and prophylactic azith - little response Mar. IVIG 1mg/kg - good response after 3.5 weeks, but then got strep a few weeks later April Spironolactone - little response; very high dose probiotics and vancomycin for klebsiella infection - HUGE response, aggression 100% gone! May high dose abx - very good response; diflucan/ketoconozole - very good at getting control of yeast. June steroid burst - excellent response, only lasted one week; LDN (low dose naltrexone) great response DS2: Jan. first MAJOR exacerbation which lead to skin picking/impetigo - tics, rages etc. Feb. impetigo lead to more pandas, which lead to more skin picking, which lead to more impetigo - vicious cycle. High dose augmentin - excellent response May steroid burst -awesome response, even cleared up some residual autism issues - but only lasted 5 days, then AWFUL rebound inflammation; spironolactone - good response but mainly just an increase in speech (again, residual autism issue). June augmentin failed for the first time, then switched to azith which did nothing. Then started prednisone taper (20 days). I gave our prednisone taper update on another thread, but in a nutshell he responded the first week, but as soon as we started tapering down, OCD started to come back. just finished taper today, starting LDN tonight - praying for a big response! Overall, we are in the best place we have been with DS5 since he was 18 months old - when all this pandas/autism nonsense started (he wasn't dx'd with autism but he was a "border" kid)! Not only is his pandas about 90% controlled, but any and all autism issues are 100% resolved! Even in the past 6 weeks he has developed pretend play for the FIRST TIME EVER! It is amazing to hear him make car noises and pretend to be a character, etc, and know he is not "scripting" the lines of a movie or something. He has the best eye contact, sense of humor and just all around perfect kid! What a miracle we are witnessing (I could go on and on b/c we have been to ###### and back with this child)! BTW, have to give some huge credit and a "shout out" to Scott Smith of ICDRC.org for this So, for now we are waiting to see how far the LDN takes us and then we will pursue IVIG if needed. DS2 has been much more affected by autism/pandas than DS5. He is still little and we have a ways to go with him (we also have a ton more options to pursue - chelation, secretin, more diet modification, IVIG, etc...). While I feel that 90% of his ealy autism symptoms are completely gone (normal socialization, responds to affection, great eye contact, etc.) there is still some progress I would like to see happen. He is still very speech delayed, but he does have words. He also has a ton of receptive language and nonverbal expressive language. He is really "with it". I would also like to see him initiate affection. While it does happen from time to time, I know he has more where that came from. I would also like to get on top of pandas 100% (this has just exploded for him in the past 6 months). If the LDN does not do miracles for him, I will be pursuing IVIG for him as well... Well, I hope that my story brightens someone's day! We sure are smiling and taking a deep breath around here! Stephanie

I haven't read this whole thread but someone asked about diflucan. We have a ton of experience with it here. First, our doc's office writes a ton of it (I think he said 5000 RX's a year) and they have ever only had to discontinue it one time due to liver issues. So far, my 2 and 5 year olds are doing well on it long term (and we do have LFT's done). Also, I just wanted to point out that as you are starting your prednisone taper, just be aware that it may exacerbate yeast (which could cause silly drunken like behavior or even irritability/aggression), so if you think that the nystatin is not doing it, call Dr. Lin back for some more diflucan. My kids were already on diflucan and it failed during steroids so we actually had to switch to ketoconozole which cleared it up right away... Stephanie