VickyLH

I'm certainly not an endocrine expert, but my son also fell off the growth chart at around age 5. He went from the 50th percentile to the second percentile by age 7. At the time our doctor didn't think it was a big deal, but I insisted we see a Pediatric Endocrinologist. The first visit was lengthy. They asked a lot of questions about his eating and sleeping habits and drew a lot of blood. We had to keep a diary of his diet for 10 days. The blood test revealed that he was IGF-1 deficient(which is the precursor to growth hormone). From there he had an MRI to rule out a tumor on or near his Pituitary gland and he also underwent a growth hormone stimulation test which took about 4 hours in the hospital. He's been on growth hormone for over 3 years now (daily injections)and he's now at the 25th percentile. The GH deficiency diagnosis preceded his PANDAS diagnosis, however we believe he has suffered from PANDAS since about age 3 or 4. I have no idea if the two are linked, but I've always suspected there must be some relationship. I recall reading an article somewhere that stated many PANDAS kids are small for their age, but other than that I have never heard of a link between the two. It would be interesting to know how many of our PANDAS kids are on the smaller side.

That's a very good point about the Nosode. At least I have it on hand if things plateau and our homeopath wants us to give it a try. -Vicky

My son has been taking a homeopathic remedy for the past 4 weeks and we are seeing steady improvement! We use the same homeopath based in NYC that Stephanie uses. My son is currently still on antibiotics but I am going to start to ween him off of it and see if he continues to improve. I was so proud of him this past Saturday. He participated in a Lego Robotics competition with his First Lego League team and he had NO issues the entire 10 hour day!! It was so good to see him just being himself, chatting with friends and enjoying the day. My heart soared for him! Currently I'm having to give him his remedy every 4 or 5 days because his symptoms rear up a little, but I am finding that his symptoms are getting less severe and shorter lived. He's also falling asleep in about 20 minutes compared to 1-2+ hours a month ago and I'm not having to lay with him anymore for him to finally relax. He tells me that his symptoms get a little worse for a short time after he takes his remedy and then his symptoms disappear for a couple of days before they get worse again. He also says that each time he takes the remedy the immediate down turn in symptoms isn't as bad as the previous time and he has more days where he is symptom free before things regress. We have a strep nosode on hand, but we haven't used it yet. I wonder if that would help get him out of the symptom cycle a little quicker.

My son also had a horrible herx reaction for about a week when he first started Azith for PANDAS. We suspected he had intracellular strep lingering from a skin strep infection he had several months prior. After the first week he had the typical sawtooth recovery and gradual improvement over the course of the next few weeks.

I wish this forum had a "like" button. I agree 100%! I have enough stress within my own family to worry about dealing with added stress from a "support group". At this point, I would hesitate referring any other PANDAS/PITANDS/PANS parents to this forum for support, which is very unfortunate since I found this forum extremely helpful when our family was first hit with PANDAS last year.

My son was diagnosed with PANDAS in February and we also see Dr. Corbier (we see him again next week). We live in Greensboro. I have attended the support group in Raleigh once, but it was a little too far to travel every month, especially when my son was in the middle of a PANDAS exacerbation. It was very helpful to share stories amongst other PANDAS parents though. It would be nice if there was a support group closer or a group organized through Dr. Corbier's office.

I just wanted to share that I had an initial consult with Angelica Lemke this morning and it seemed to go well. She is definitely very thorough and spent OVER 3 hours with me trying to truly understand my son and our family history. If nothing else it was very therapeutic for me in that the session enabled me to try to see (and feel) my son's PANDAS from his perspective. I had several revelations that gave me a deeper understanding of what he goes through at times. It was an emotional but uplifting journey. She has prescribed Carcinocin along with a strep nosode. I will keep everyone updated on his progress. He has been doing OK on antibiotics (since January), but he is still reacting to strep exposure and other viruses (he's likely PITANDS or I guess PANS would be more fitting now). I may try arnica for my other two son's who have been acting different (whining, aggressive, hypersensitivity to touch and sounds, oppositional) since one of them had a skin infection a few weeks ago (don't know if it was strep, but my confirmed PANDAS son reacted with increased OCD at the time). I believe we are seeing early signs of PANS in my youngest two sons (9 and 5), but nothing that is so clear cut and debilitating that doctors are wanting to diagnose and treat at this point. I will very likely pursue homeopathy for all my kids in an attempt to avoid having them completely incapacitated before they can get help. Thanks for being so open in sharing your story. Vicky

I'm with you Stephanie, I've been wondering if I too have suffered from mild to moderate PANDAS throughout my life. When I really look at my history it makes sense. I had OCD/Bulimia as a child/teenager (and mild OCD as an adult) and I would go through periods of social awkwardness/withdrawal and depression with paranoia. Last fall when PANDAS hit our family hard and prior to our entire house hold being diagnosed with Strep, I felt very ill myself for several months. I constantly complained to my husband that my joints hurt, I felt anxious all the time, my personality seemed to be changing to the point where I was very angry at work and basically just avoided most of my co-workers (very out of character for me), I could no longer concentrate or think straight, I had constant muscle twitches throughout my body and my fingers constantly twitched (my hand writing was a mess), and I had a difficult time controlling my anger. This had persisted for several months. I also had a chronic sore throat, but I never tested positive for Strep at the time. My boys were also suffering in a similar way. I thought we were all going crazy. My oldest son had skin Strep in June prior to all of our issues falring. My oldest finally had a severe exacerbation last December to the point where he couldn't function due to OCD, tics, anxiety, and math and writing issues which lead to his PANDAS diagnosis. We had all tested positive for Strep throat just two weeks after he hit the wall. All of us felt better when we were treated with antibiotics for our Strep. I've always said that I could sense when my kids were going to have a difficult time because I would feel a spike in my anxiety/mood. I just thought I was very in tune with them, even though I usually had no real indication that they were on the verge of having a hard time. Now I am really starting to think that I was very likely responding to the same environmental factors that they were and that's why I was so "in-tune" with them. We have a consult with a Homeopath (Angelica) for my oldest PANDAS son this coming Saturday. He's been on antibiotics since January and is doing OK, but has slid back recently. I'm hoping Homeopathy will help his body heal. So far I feel antibiotics have just been a band-aid treatment, since his OCD comes back full force if he's off it for just a few days and it doesn't seem to prevent exacerbations with any kind of viral infection (he's likely PITANDS not just PANDAS - perhaps PANS would be the term now). I think I would like to try homeopathy for myself and my other two sons once we can scrape the money together. My other two boys haven't been officially diagnosed with PANDAS but they have showed some signs of it (mild OCD behaviors, mild tics, emotional liability and rage). I'll keep everyone updated. -Vicky

Thank you for sharing this much. I'm glad you seem to have found the path to healing that is working for you. Best wishes, Vicky

Pandas16, thank you so much for sharing your success so far!! I'm so happy for you!!!! Although there are many schools of thought on this board, I think we all recognize that as of yet no one has the one-size-fits-all magic cure for our children. It's important to me that I keep my mind open to possible causes beyond Strep and to all treatments options, whether traditional or alternative. Personally I want to hear everyone's opinion and I enjoy reading some of the debates too because it gives me even more to consider and research for myself. If people didn't think outside the box and go against the flow at times, we would never make important discoveries and progress. Please continue to share your progress. May I ask if you are still taking abx? Where is Dr. Hollander located? Did you need a Rx for the TSO? Sorry for all the questions. My husband and I are just starting to investigate alternative options for our ds11 since he has stopped responding as well to his abx and for now we have decided to discontinue it. We are trying to focus on healing his gut through diet changes (so far the entire family feels better) and strengthening his immune system using Homeopathy. I mentioned the TSO treatment option to my son, and he looked at me as if I was crazy to consider giving him a parasite - LOL! Now the challenge is convincing my son to keep an open mind to alternative treatments. Take care, Vicky

That is fabulous! Do you have an alternative doctor who is guiding you through the dosage? I can just imagine the look I'd get from our doctors if I suggested we try this. My interest in alternative treatments is definitely peaked though! Please keep us updated. Thank you for sharing! Vicky

I can relate. My son did this when he was 8 as well. It was before we knew he had PANDAS or even OCD for that matter. He actually got expelled from school for a day for touching a girl after he had been warned not to. He didn't touch her inappropriately, but obviously it freaked her out that this boy kept touching her. At the time I couldn't understand why he was acting this way when he was really such a good kid. He felt so bad for what he did and he thought he was an awful person. He obviously couldn't explain why he did it. It breaks my heart knowing he was punished for something he couldn't help at the time. We didn't discover he had PANDAS until this year. At least you know what you are dealing with and you can educate his teachers. Take care, Vicky

Has anyone tried this or something similar?

Wow, that's amazing stuff. Thanks for posting it! The more I am learning about the link between the gut and psychology, the more I believe that's where our children's problems are rooted. I pray that discoveries and research in areas such as this, will ultimately cure all Autism spectrum disorders and many other autoimmune diseases which are on the rise. This also goes to show the power of a parent's insight into their child's disorder! Thanks, Vicky

Oops... double post!

That's perfect Stephanie thanks. I've noticed there is a Homeopathic group in Texas that has experience treating PANDAS children. Is that who is treating your son? I too would feel more comfortable going to a homeopath who is familiar with PANDAS. The only issue I have is the fear of taking him off his current antibiotics that are sort of working, to try something new. I'd hate to see him slip back to the point he was at last fall. I'm also enjoying the sanity break I am currently experiencing. ;-) Having said that though, I still want to continue to educate myself about ALL of our treatment options. Thanks again! Vicky

Thanks for the update Stephanie. I'm so happy that you have found a resolution for your older son's PANDAS symptoms!! I hope you'll soon find a similar resolution for your younger son. We recently gave our ds9 (non-PANDAS) a constitutional remedy to help with his rage and hyperactivity symptoms he had been exhibiting (coincidentally or not just prior to being diagnosed with Strep). He took the remedy about 6 weeks ago and as a side note we also modified our family's diet at the same time (no refined sugar, minimal carbs, minimal yeast, no milk, no prepared foods, mostly organic) and we started him on fish oil and standard multivitamin. Since that time we've noticed a significant difference in his behavior! He no longer has rage episodes that last for hours. He gets angry now and then, but it's normal kid behavior that he can easily snap out of. We did see a brief resurgence in his rage and hyperactivity symptoms immediately following him having 4 teeth extracted, but things settled down again after about 4 days. He admits that he feels much calmer and that his anger doesn't spiral out of control like it used to. It's so nice having our pleasant boy back again! We're considering trying homeopathy for our PANDAS ds11. He's doing OK with antibiotics, but recently he's had some setbacks with anxiety, depression and mild OCD kicking up again. I still feel like we're treating with band-aides and not getting to the root of the issue. From what I understand about Homeopathy, there are several different constitutional remedies for various symptoms, personality and phenotypes. Was your son treated with his constitutional remedy? Or was he given a mix of remedies to help deal with his PANDAS symptoms specifically. Also, was the homeopathic practitioner familiar with PANDAS? A very good friend of mine has studied homeopathy, but of course she's never treated PANDAS. I'm just wondering if that really makes a difference, since ultimately they treat from a holistic point of view. Thanks again for sharing your success story with alternative treatments. Take care, Vicky

Hi everyone, My son seems to be improving fairly well after 5 weeks on Azithromycin. However, I have a question about exposure response in PANDAS kids. My son had been doing very well the past several days. He's had next to no OCD issues, his tics have really subsided, his only issues seem to be hyperactivity and difficulty falling asleep. Last night my husband and I finally had a date night, but when the sitters arrived (neighbor twins) they casually announced they had been sick with Strep (arghh!) and were currently on antibiotics (not sure how long, but they probably had at least 2 days of abx). I was hoping that since they were under treatment and my PANDAS son is currently taking abx (150 mg/day) that things would be ok. However, this afternoon and tonight it seems my ds's symptoms have kicked up a bit. He's anxious and says he feels sad and seems to be having some OCD issues again. My question is, could he still react to someone who is being treated for Strep? I've heard that once a person has been on abx for Strep for at least 24 hours, they are no longer contagious. But now I'm wondering if a PANDAS child's immune system can still be set off by being around someone who is being treated for Strep. Has anyone else noticed this? We decided to give him some Ibuprofen and we upped his abx dose to 300 mg for tonight just in case. It's frustrating that people just don't understand how Strep can affect our son. I have discussed my son's PANDAS issues with my neighbor, so I was surprised she would let her daughters babysit for us without even asking if their current Strep would be an issue. It really seems that everyone we're in contact with has or has had Strep lately. I hate STREP! I appreciate finding out if anyone else has had similar experience with exposure to people under treatment for Strep. Just trying to wrap my head around it and trying to figure who we should avoid and for how long. Have a good night! Vicky

Wow, this boy's story sounds so much like my son's. Right down to the skin strep infection just prior to him going to a week long Boy Scout camp. We too thought that his odd behavior before going to camp was just nerves, but we ended up having to pick him up early from camp because he was so distraught. He now admits his OCD started when he was at camp. We didn't suspect PANDAS until things got a lot worse this past December just prior to him getting Strep throat. We had actually forgot all about his skin strep infection prior to that point. From what I understand, skin strep can go intracellular and start acting like a virus and may not show a rise in ASO titers. Not all antibiotics go after intracellular strep and we didn't start seeing improvements in our son behavior until we started Azithromycin. I would suggest the parents start with that antibiotic, knowing his history of Impetigo. If I were them, I would beg to have my son placed on a 30 trial of Azithromycin regardless of ASO titers. We were fortunate to find an Immunologist who was willing to try (even thought she wouldn't diagnose him with PANDAS at the time) and it worked!! Our son is now functioning at about 85%. At this point his OCD is pretty much gone and we're only having to deal with some tics, hyperactivity and nighttime anxiety (a far cry from where we were 5 weeks ago!). Please keep us posted on his progress. These stories break my heart. Vicky in NC

I just had a look at her webpage and her child is being helped by energy therapy. The entire website seems devoted to sharing how this has helped him. -Vicky

Great job following your gut! I've learned to trust mine as well. Was your son on prophylactic abx? We've had Strep making it's rounds through our house and to the kids down the street and back again. My PANDAS son has been on abx (Azithromycin 150mg/day - I know, not a huge dose, but all we can seem to get at this point without an official diagnosis yet), so I haven't had him tested for a Strep recurrence. Should I? He did react with increased tics, ocd and anxiety when my 4 year old had Strep for at least a week before it was confirmed with a positive culture (negative rapid). I ended up taking my other son (9 yo) for a rapid/culture which was negative, but I didn't think it was necessary for my PANDAS ds. Overall he's doing OK, but he has had some ups and downs, but we usually end up finding out yet another friend on the street has Strep soon after we see an increase in his tics. -Vicky

Hmmm, I sort of expected that may be the case. That's really unfortunate. Makes me glad we moved to the U.S. 13 years ago before we had kids (we grew up in Hamilton as well). I think she had an appointment with her Pediatrician today, so depending on how that went, I'll let her know she can contact you. Thanks, Vicky

A parent on the OCDParenting yahoo group is investigating the possibility of PANDAS in her 10 yo dd. Does anyone know of a PANDAS friendly doctor in southern Ontario? She lives in Hamilton. I seemed to recall some Canadian parents saying they had a difficult time finding someone who believed in PANDAS. Thanks, Vicky

My son is just finishing a 30 Rx of Azithromycin. During the first 5 days, his symptoms got a lot worse. He often had periods where he would sit alone in a room, squatting in a ball on the floor for up to 3 hours. Nothing we did could snap him out of the episode. It was so hard to see. After that we saw a slow and somewhat steady improvement. However, it was sometimes difficult to see that improvement until we looked back in time, as it was masked within such a jagged recovery with good hours and bad hours, and then good days and bad days. It was helpful for us to keep a journal to remind ourselves that we were seeing improvement along the way, no matter how small. The past week he has been doing much better and the periods when he has difficulties are usually fairly short lived. He still has a difficult time with anxiety/OCD at bed time and sometimes he will feel sad throughout the day. At this point I'm not sure if he could get back to 100% with antibiotics alone, but we're hoping. We're also trying to figure out his diet and probiotic supplement along the way, so I'm sure that's messing with his symptoms as well. -Vicky

We started easing our way into a Candida diet this past weekend and I have been craving carbs like crazy!! Today seems a little better though. I think our entire family will be better off on the diet. It will force us to cook more rather than being tempted to buy prepared foods. When we really thought about everything we feed our kids we realized it's all packed with sugars and carbs! Does anyone have any recommendations for yeast free bread. I found this one on Amazon but I'm not sure how good it will be and it does have some carbs. http://www.amazon.com/gp/product/B001ACNWY8/ref=ord_cart_shr?ie=UTF8&m=ATVPDKIKX0DER I ordered a cookbook on Amazon this past weekend. I'll let you know how it is when it arrives. http://www.amazon.com/gp/product/0658002929/ref=oss_product I agree that once you get some recipes and ingredients under your belt, it should get easier (at least that's what I'm trying to tell myself). -Vicky