momtocole1

You know what I like about this post. You are speaking in the past tense! Can you send another update about your son. It gives me and I'm sure others so much hope. Thanks...

This may seem like a strange question, but my son cannot handle any type of touching on his head. He does not want us to touch his hair. Practically melts into the chair when getting a haircut. He does not cry or anything, he just looks like he is in pain. I don't think it is just from having sensory issues, because he really has those too, like no seams in socks or tags in shirts. etc. etc.... What I am talking about is an extreme sensitivity with his head. If he ever hits his head or gets hit in the head he lets out the most blood curdling scream you have ever heard. It is absolutely deafening. It really scares me so much. I have another son with Down syndrome, he is 7 and really little for his age (the size of a 3 year old). He loves to tackle his big brother and jump on his head, which we are trying really hard to deter him form doing. I just can't stress enough how much my son screams in pain if he hits his head. His reaction to the pain just does not match up to what has happened usually. He has an extreme overreaction. Do you think that it could be from swelling in his brain? I have read that the basal ganglia is far inside the brain and that it is a grouping of nerves???? I just wanted to see if anyone else has seen this. I so hope that this is a PANDAS thing and that it will improve when we get him IVIG and continue on his healing process because my nerves are totally shot. Thanks for letting me vent.... Happy Halloween, Judy...

Hi Stephanie, Hearing this story made me feel like we are living in some kind of parallel universe. My son has reacted exactly the same way when I would come into his class. I finally started doing the same thing that you do, I just keep him home. I remember when it started. I kept thinking, how could my son not like this. Kids live for this! My theory, at least for my son is that he would unravel when I got there because he saw me as the "safe zone". I think he wanted to unravel most of the time but he would just keep it penned up and "hold it together" at school and then unleash at home. May not be the same situation for you (I hope) but here this is how it has gone. I am glad that he like to trick or treat. My son went to about 8 houses tonight and then he became exhausted from all the retracing of his steps. He is much older than your little boy. He is 12 next month. I do wonder how much of my son's behavior is PANDAS and how much is part of his personality. I am in denial that it is personality!! I have not read your other posts, so I don't know your history with your son and PANDAS (I will read it after I write this). The only advice I can give is be as aggressive as you can possibly be with your son while he is still so little. Get the Cunningham Lab tests if you have not already to see his CAM Kinase II levels. Hopefully you have a doctor that is open and educated in the treatment of PANDAS. My son got PANDAS 5 years ago when he was in first grade and he was 6 years old. I saw dr. after dr. and begged them to treat him for PANDAS and none of them would or could or were willing to even investigate it. I can't tell how sad I am that I did not fight harder. I did not stop searching but I hit so many walls that I started to give up on the PANDAS diagnosis and kept looking for other causes of his issues and other diagnoses. Realistically though, there just was not as much information about PANDAS out there five years ago. No forum like this... If I had continued to search harder I would have been able to get him on prophylactic antibiotics earlier. Each subsequent strep infection causes further damage and setbacks for them. At least now we are on a road to healing and recovery. I am sorry if it seems like I am on a "soap box" but I just feel so strongly about this. Thanks for letting me vent... Happy Halloween... Judy...

Char, I have one more question, I was reading your history of posts. What is your sons CAM Kinase II number? We just got ours back and it showed 165 for my son which they said was above the median score for PANDAS group. Are you thinking about trying IVIG? Did Dr. Lattimer recommend that? I was also wondering what part of Canada you live in West, Mid, East? I feel so bad that the doctors up there won't do IVIG if that is what is recommended... I'm sure you have already thought all this through, but I'm just throwing things out there... If you are on the west side of Canada, would it be possible for you to travel to California? Dr. Gupta at University of Cal. Irvine has pioneered the IVIG treatment from what I have heard. Not for PANDAS but for other illnesses, i.e. Rhuematoid (sp) Arthritis, Multiple Sclerosis. I know of a couple of parents that have had successful IVIG treatments with him. We are planning to see him this coming Wednesday. I am going to beg him for IVIG for my son. I wish that I could travel with my son to see Dr. Kovacovic in Chicago. My son's anxiety is just too high for me to put him on an airplane. Also the travel would be so expensive and I would rather put it towards medical treatment for him. I hope that it is just the cold that is causing a possible new tic for your son. It just seems that these kids can't handle any kind of a hit. Even a cold... Hope you are feeling a little better after different people are writing you back with suggestions and that you are able to sleep. There are not enough bottles in the world to hold the number of tears that a PANDAS Mom cries for her child... Write back when you feel up to it... Thanks, Judy...

Dear Char, I am sorry that you and your son is going through this. Do you think that is a high enough dose for your son? Read some of the other posts about the antibiotics, they helped me so much. I am new to this too, even though my son is older (11) we only just got confirmation of the PANDAS. We had started him on Zithromax and he think he might have built up an immunity to it. We switched him to Augmentin, he is big for his age 118 pounds and he was on 600 mg. twice per day. He was still having so many OCD symptoms and some tics. I started posting in the forum and many people wrote me back and said that I should talk to the doctor about a higher dose. I switched him to 1000 mg. 2 times per day which is the "saving sammy' dose and he is shedding OCD symptoms every day. I don't want to give you the wrong impression. We still have a road ahead to his recovery. We are hoping to IVIG in the next few weeks. But, little things are changing... He no longer has to close his bedroom door when he comes down stairs. He has HAD to close it ever since I can remember. He went trick or treating tonight for the first time in many Halloween's. He went outside to play a few times in the last two weeks which he was not able to do. His OCD was very severe. It is still there, but it is getting better every day. He had a setback this week, because he had three teeth pulled and then came down with these huge canker sores in his mouth. Talk to your doc about increasing the Zith or possibly switching to Augmentin. Search those two antibiotics on the forum. Look at "Worried Dad's" posts. His story is amazing. His son had two IVIG's and I think PEX. He was really still struggling with severe OCD and the high dose Augmentin is helping him. He is shedding OCD behaviors overnight. Don't worry, your son will get through this and you will too. I know how hard it is. We hear the slightest sound from them and our hearts sink and think, Oh My God, is it another tic? My heart goes out to you... Judy...

Dear Suzan, I am worried that I screwed up too. I thought it would be okay to get my sons dental work done 2 days ago because he was on the high dose Augmentin. He is really backsliding. He is retracing his steps, retouching things, everything that he was doing before we started the antibiotic. I feel sick to my stomach... I feel so bad that I had the dentist go ahead and pull three teeth. He now has huge canker sores in his mouth form all the novicaine shots. It is like these kids until they get more healed, they cannot take a hit. I wish I had more help to offer you, but I will be waiting for replies to your post. I'm sure that things will level off again. My heart goes out to you and your daughter, Judy..

Hi Beth, Yes, I think the problem with the funny feet day was definitely PANDAS. My son is so upset by shoes, socks, where his shoes are. How he puts on his socks and shoes. He can never put his shoes on in the house, he has to put them on in the car, but not until we get right at the place where we are going. It does drive me a little crazy, but I must say I am more use to it now. I prepare for it. If I try to fight him on it he will have a full blown melt down. I'm glad that your son likes halloween though!

I am wondering if others have had issues with their PANDAS kids not wanting to dress up for halloween. It was always such a fun holiday for me growing up. Put on a costume and go get all the candy you can possibly ever want... Not for my son though. He has always struggled with Halloween. I used to think it was just him being afraid of the "scary" costumes, but he was scared of his own costume, even the cute little clown one. I distinctly remember buying two really fun costumes one year. They were dalmation dogs from the Disney store, one for me and one for him. I put mine on and danced around to make him laugh but when I put his on, he dropped to the floor writhing and screaming. He could not rip it off fast enough. Most halloweens he stays home with my husband and passes out candy. When he was younger I would bring an extra bag and take his brother and sister (twins) to trick or treat and explain to all our neighbors. I must have sounded so lame, "Uh excuse me, my son Ryan is a little afraid to come trick or treating, could I get a piece of candy for him". Most of the parents would either look at me with that "Are you crazy, what kid doesn't like halloween look" or they would feel sorry for me or him and give us a bunch of candy. He is just about too old to trick or treat now anyway. Maybe he has a couple of years left. He is almost 12 though. I want him to go trick or treating, I want him to want to. I am going to make that one of my wishes, that by next year he will be recovered enough to go trick or treating, willingly and joyfully. Maybe I could take one of those little orange UNICEF boxes where you collect money for the poor and cross out the UNICEF and put I.V.I.G. I need some serious sleep right now. I am punchy and feeling sorry for myself and my son! I am so grateful for all of you on this forum... Goodnight...

Now that I know my son has PANDAS I feel like everything that is "different" about his development than my other two kids is related to the PANDAS. I know that is probably an overreaction but I just keep going there... Has anyone had an issue with their child with PANDAS in relation to baby teeth. My son will be 12 next month. He has always had a problem where in some cases his baby teeth do not come out and he new permanent teeth come in in front of the baby ones. We had to have three teeth pulled yesterday. I thought they were only going to pull one maybe two. I put it off for many, many months because he has been going through so much anxiety. Now that I understand PANDAS better it is a good thing that I did not take him before he was on the antibiotic because I think having those three open areas in his mouth could have been a breeding ground for a strep infection. He is having such a hard time recovering from the tooth extractions. The dentist gave him so much novacaine and everywhere that they gave him a shot he has a huge canker sore there now. I get the same thing though. His entire bottom lip swelled up and it is still swelled up today. I noticed some new OCD coming up today, opening and shutting doors 7 times, loudly and I was upstairs waiting for him to come out of the bathroom and I heard him urinating and he was stopping and starting the urine flow 7 times. I think it is safe to say his number is 7 today. Just when it seems that he is really making improvement, bam, we hit a blip like with the dental work. I had made a decision to just hold off on the tooth pulling and just live with extra teeth. It is so low on the list of priorities for him and I figured, we can worry about braces when he feels better. The only reason that I did it is that he begged me to go to the dentist and have the one tooth on the bottom pulled because it was protruding back towards his tongue and was becoming uncomfortable. He and I wiggled that tooth until the cows came home. It would wiggle all over but never come out. It was just deeply rooted I guess. We had two really bright spots today though... He went outside on the trampoline with our behavioral specialist who brought his daughter and brother over to play. That was a beautiful sight to see. He also said I love you when he went to bed, that's it, just I love you. For at least the last 2 years he would always say: Goodnight, I love you, sweet dreams, be safe. I always had to say those exact words back to him or he would unravel. I may have already posted about this yesterday, but tonight was the second night in a row where he just said either goodnight or I love you. It seems so trivial but it is HUGE for me and for him. Just wanted to end on a positive note. Thanks, Judy...

I am trying to understand what having too much Cam Kinase does to the neurotransmitters in the brain. We just got my son's results the day before yesterday. I keep reading the JNI /Cunningham study and it is so scientific. Can somebody explain in laymen's terms what is happening to the neurotransmitters with too much CAM Kinase. Is it that they fire too rapidly or the brain cells have more movement that usual. I am trying to explain to my sons teacher and a behaviorist so they can understand what is happening in this poor little guys brain, besides the inflammation. Thank you, Judy...

Dear Mary, Can you help me with the math on this, it is so late at night , with your son's dose. My son is also 11 years old. Heavier than your son though, he is 118 pounds. He stared out at 600 mg. twice daily, a total of 1200 mg. per day. He had some improvement, he was not shedding OCD behaviors but it seemed the intensity of them was going down. Less rages. He had a big backslide at about day 12 so we upped the dose to 1000 mg. twice per day, a total of 2000 mg. per day. So I think you are at 1750 right? I noticed improvement right away after we started the higher dose. It was like a switch was flipped. Don't want to mislead... We have a road ahead. What changed is that he started to shed OCD behaviors. He went from almost total decompensation to going back to school. We are on modified days though and he seems to be in that "saw tooth" type of mode. Good days and bad, good moments and bad. But he is definitely is doing better. He went outside for the first time in many months to play and ride his bike. He has been outside playing in the backyard again. But then as fast as the great things come, a storm will hit too. He had to have three teeth pulled today. Baby teeth that never would come out and new teeth were already in. It was such a tough day for him. He is till really upset to go to school. So I am wondering if there is a chance that 2000 mg. a day is a "high enough" dose? The reason I ask is that another Mom on this forum, Faith has been doing a dose lower than the 2000 mg. a day and she is not seeing as much improvement as she had hoped. The saving sammy dose was 2000 mg. a day, sammy was 10 years old on that dose and he was overweight from what I hear from all the psychotropic medications he was on. I am not a doctor and I don't know if would help but it is just a thought. There is a dad on this forum named worried dad that has seen amazing improvements with the 2000 mg. His son is a little older though. Maybe you have seen his posts. Do you think it is worth a try to try the higher dose? I am not knowledgeable enough about this to even have a "parent opinion". What if you talked to the doctor to make sure that it is safe to go that high with the size of your son? It just keeps gnawing at me the possibility that there is something about the 2000 mg. a day being enough to kill off this strep strain regardless of the weight of the child. Because when you think of it your son and my son are already on a much higher dose than even an adult would get, it really does not correlate with their weights, it is a huge dose. Worried Dad took the Saving Sammy book to his doc. and that is how they got him to agree to go higher, to the 2000 mg. a day. I'm sorry if I'm rambling, it is so late, but I really wanted to write you back before going to bed. My heart goes out to you. Please keep me posted. Also, is there any chance you live in California? There has been discussion about a really strong strep strain in CA. Good night, Judy...

:) That is the best news. Don't worry you are not jinxing it. You are giving us all hope. The more you talk about how well he is doing the more you will start to believe it and expect it. This is just an amazing story. I am so, so happy for you, your son, your wife, your whole family. Those changes in behavior are incredible! Only a PANDAS parent can truly appreciate all of those things that your son can now do. What I have found the most amazing is that when my son sheds an OCD behavior he does not seem to even acknowledge it. He will have done something day after day for many months, he has become literally obsessed with it, right... Then it just goes and it is like he never realized that it was there. It is not happening with all the OCD behaviors just some of them. It is the most mind boggling thing to watch. So I'm standing there, staring at him in disbelief and he's looking at me like "Hey Mom, What, why are you staring at me?" It is like his mind flipped the pages back to where he never did that OCD behavior. One thing that happened last night that really shocked me is that whenever I put him to bed, (he is almost 12 and I have to put him to bed. Lay down and talk to him for awhile or play a game on my iphone with him to help him settle in), anyway for many, many months when I leave his room he says Goodnight, sweet dreams, I love You, Be safe. I have to say it back to him, verbatim or he would spiral out of control. Last night and tonight, he just said goodnight and I said goodnight. It is surreal. His progress is still in that saw tooth pattern. Ups and downs. He is still struggling in school quite a bit and would rather not go. I just keep wondering if I should try to homeschool him but he is so lonely and it is such an isolating thing for him. Thanks again for the positive note, I so needed it! Judy...

Dear EAMom: I have not had any input yet on whether PEX would be bette for my son because of his age. Yes we are seeing Dr. Gupta at UC Irvine next Wednesday. I will discuss with him. We have a phone consult with Dr. K on 11/17. We are still on high dose Augmentin. It does seem to be helping, slowly. It is definitely the "saw tooth" type of response that everyone talks about. We have good days and bad, good moments and bad. He had 3 teeth pulled this morning and he unraveling right now. So much pain, and discomfort from all the novicaine shots. We had put it off for so long and his baby teeth did not come out in three places and the perms came in and were causing irritation. I felt it best to do now while on high dose Aug. I am keeping the motrin going today and tonight and just pray that he will stay infection free. I will keep you posted. Yes, we should all write a book. A compilation of our struggles and triumphs to give hope to other children and parents. Thanks, Judy...

Thank you Isabel, you are right, now I have a clear path to follow, I just have to be patient. I want sell my car tonight, for cash and drive him to the ER and demand IVIG. Too bad it is leased! But seriously, I just feel like there are still so many hoops, but I am going to try to keep my focus on his successful recovery. My birthday is on Monday and I am going to aim for my next birthday for him to be doing at least 90% better if not 100%. That is my dream! OCD free, and tic free and anxiety free! Also thank you for the info on the brain. I will buy that book. Yes my son will be twelve on Nov. 22nd. I am also very happy for you that your son understands what is going on when he has an episode. I will read your old posts to find out about the treatment you have gotten for him. Thank you, Judy...

Dear Debbie, Thank you for the note. It does put my mind at ease. Is the puberty cut off just really old information that has been disproved by children post puberty that have had a full recovery? I think I just need to hear about some kids that have done well that are older. I really appreciate your positive post. Thanks, Judy...

Faith, Thank you for the nice note. You are right,at least now we know, and we can get them help. I wish I could go back to every doctor I saw and ask them for a refund because so much was not covered by insurance. I would take all that money, and it is thousands and I would use it for IVIG. If I had any left I would give it to another parent that needs it for treatment for their child. If I wasn't so caught up in all of this and my son was recovered I would write a book and give every dime to research for PANDAS. I don't want anyone else to search and search like we did. I don't want other people to give up and just believe what the doctors tell them. I feel like because we never gave up we found our answer. We found the key, now we just have to use it and hope and pray that it will help them overcome this. Let's make a pact that in a year from now when they ARE doing so much better we will travel somewhere fun, and meet in the middle of the country between our two states and celebrate! We can bring the boys and they can share their triumph over this! Talk to you soon, Judy... Hey Judy - this is DeAnn. I totally understand and share your feelings! As you know we went through every type of doctor we could think of to find help for my son. Our story is a little different in that the doctors basiclly said that my child was an enigma. We had some different diagnosis (food allergies,pyroluria,zinc deficiency,copper/zinc imbalance,some heavy metals, etc.) but even with those issues being addressed we continued to have problems on and off to varying degrees. Even the clinic that treated him for those problems said he was their most difficult case and there was only so much they could do. After he was inpatient last year the psychiatrist kept giving me these canned responses to his problems. I told him about the horrible nightmares and he would say that it was a sign of being in a manic phase. I would ask why my son would be fine for awhile and then crash - he would say that bipolar kids cycle but yet my son didn't fit the bipolar profile. When I was just in to see him after we were diagnosed with PANDAS he said well he doesn't have any facial tics so.... This is also the guy that wanted to put my 11 year old child on Lithium!!! He reserves that for those with severe mood disorders. This is also the guy that looked at my sons ASO levels a year ago and said that they were not that high.....when we bring him the results now he says it's not PANDAS! He suspected it a year ago but now it's not! Now he says that this may all be the beginning of schizophrenia! Oh my God!!! I am sooooo glad that I refused to put him on Lithium (it fries your liver and brain) and kept on searching! I am sad about all the things that my son has missed too. He has been living with this for about 10 years! PANDAS affects the whole family! My other children have thought that he is just bad etc. To be totally honest there were times that I wondered too - although I knew that something was wrong! It is also sad that these kids know they are not "normal" and want to be so badly!!! How horrible it must be to think about killing your friends and family, ruining everything that has ever been special to you, etc. I guess those of us with the older children have every reason to be mad, sad, and frightened! I now have a 12 1/2 year old child whose brain has been attacked for the last 10 years and now we have to move ASAP because it might be too late! Judy I guess we need to be thankful that we now know what has been causing all of this and that there is hope! I am also thankful that I found you and the others here so that I no longer feel alone in the world and that there are many out there that can relate to our situation. I am rambling and did not plan on it but I am mad too!!! I think of you daily and hope that your upcoming appointments will move you closer to a cure for your little guy!! We have to focus on the future as we can not change the past. Our kids now atleast have hope of having a somewhat "normal" life. My son has his IVIG treatment scheduled for December 3rd and 4th. I pray it works! It will be the best Christmas gift ever!!!!! DeAnn P.S. I just received my test kit today. I have to wait a little bit though because we just finished the steroid burst and that will lower the numbers.

Hi Faith, He has not been complaining about itching at all except one time last night where he said his feet were itchy. No rash or anything like that. Poor thing had to have 3 teeth pulled this morning and he is really having tough time. Have you though about trying a benadryl? I usually can't give it to my son because it dries him all out and he starts that scratchy dry cough stuff that almost becomes a tic. Other kids do fine on benadryl. I hope he feels better. Poor hiney! Thanks, Judy...

Dear Faith, (and the rest of the forum), Our two boys must have been in the same batch that Kathy Alvarez ran late yesterday at University of OK. My son's number was 165. I was happy to know that I'm not crazy that these symptoms are real, but sad to get the confirmation and realize that my son has suffered with this for so long. I am in the same boat as Faith somewhat, though my son is 1 1/2 years older He will turn 12 in Novemer, and his OCD is much worse. I too am angry that he has suffered with this for so long. We just ordered copies of all his medical records and realized the first strep infection was when he was in 1st grade. I still know the date, 4/23/03. I will never forget his first grade teacher meeting me at the door one day and asking me if Ryan had Tourette's sydrome. I almost screamed. I had never even imagined that could be the case. He just had this one tic that came up overnight that was like a grunting sound, things were never the same again. He used to be so good at math and now he is so afraid of the letter X that he can't even do one math problem right now. He used to write long stories, by hand, I would find little books that he made all over the house and now he can barely lift a pencil. I am also angry that my son and our whole family have suffered for almost 6 years with this horrible disorder. We took him to every doctor under the sun, he was diagnosed with Anxiety, OCD, PDD-NOS, Asperger's, High-Functioning Autism, Bipolar, you name it. I am so sad that this has torn my family apart. We have to do everything separate because most of the time my son is too afraid to go to new places. It just broke my heart the other night again... I took my daughter to a magic show on Monday night at school and my son really wanted to try to go. I went to go get him and he just cried and cried and said that he really wanted to go but something told him that if he did his head would be smashed on the ground. ;) I left him with my husband and pulled out of the driveway with tears in my eyes again. I don't even bother wearing eyeliner any more because I cry almost every day. I try to joke about this, just like some of the other Mom's here. It just helps me get through it somehow. We all know there is nothing funny about this, but if we don't try to make eachother laugh once in a while we will fold up and just give up I think. I am also very, very angry at the "world renowned" pediatric neurologist that I saw at University of California Irvine that looked me in the eye when I begged him to treat my son for PANDAS 4 years ago and he told me "Oh I don't believe in that PANDAS stuff". He said he has high-functioning autism. Just hire a behaviorist. I am sad that my son has not been able to hold onto a friend, that he is so sensitive and gets hurt or angry at the flip of a switch which alienates other children that just don't understand what is "wrong" with him. I am sad that my father-in-law and mother-in-law came into my home and told my husband I that we better start being really tough on my son quick or that he would end up in jail someday. They wanted us to physically hurt him, MAKE him behave. But what I am the saddest about is that my son has lost years of his development and I don't know how to get that back. Okay, enough mad and sad stuff. We have an appt. next week with an immunologist and a phone consult with Dr. K. coming and I am hoping and praying that my son can get IVIG and that our insurance will pay for it. I have the same worries that Faith does. Is it too late. My son has not "gone through" puberty yet completely, but it is starting. I feel like I am in a race against time. I am hopeful because he has gotten better in many ways with the high dose augmentin, but we have a lot of healing to do. Thanks for listening to me vent... Judy...

Did you notice it being raspy back when he first had PANDAS (but you didn't know it yet), An Occupational Therapist pointed it out to me when my son was 6 years old. That was right after his first strep infection. We got my son's CAM K number last night, I am planning to do a post on it. He was at 165. They said that was above the median for the PANDAS group. It explains why he has been having such a tough time. He has been up and down, overall he is doing much better on the high dose augmentin. Rough day though, he just had to have 3 teeth pulled about 2 hours ago. Baby teeth that would not budge and the new teeth came in many months ago. I figured if we have to do it, better to do it now while on the high dose. How is your son doing on the augmentin? Thanks, Judy...

This is a wonderful thing.... I am going to keep thinking of suggestions for a logo, catch phrase. It needs to be worded somehow with info regarding the sudden onset or rapid onset of OCD, or anxiety or tourettes syndrome, tics. Do we agree that all kids with PANDAS had a rapid onset of one, some or all of these issues when their child got sick, whether they had a sore throat or not. This is tougher than I thought, to generalize information on this. What makes this disorder or disease or whatever we are going to call it different is that it does not follow a typical pattern of presentation and in many cases there is no family history of OCD or tics involved so the genetic factor is different in many cases, not all, but many, right?

Dear Lisa, This other neurologist should be sued for malpractice. Has he/she read the hypocratic oath (sp). I almost wish that everyone on the forum could write him/her a letter expressing our shock that they would not agree to treat a child and a family dealing with a crisis. I'm not exaggerating right? When our kids have a backslide/episode everything as we know it falls apart. It really would not help for us to write letters because even if that dr. agreed to treat your son. You would not want them to anyway unless they believed in the diagnosis and studied successful treatments. Have you tried to find a D.A.N. (Defeat Autism Now) doctor in your area? I go to one even though my son does not have autism. Many autistic kids have PANDAS from what this doctor told me. Even though the DAN dr. I see is not very knowledgeable about PANDAS he is willing to do the antibiotics and I am set up to have appt. with an immunologist and Dr. K in Chicago via phone consult. Just a thought, the DAN docs seem to really look at the whole picture and look outside the box. My heart goes out to you... quote name='Lisa1971' date='Oct 13 2009, 01:46 PM' post='40924'] After months symptm free, last week Alex starting ticking again...he had had a swollen gland a week prior that had gone away with a increase of antibiotics and motrin at the suggestion of our neurologist...then woke up one morning with a fever, glassy eyes, headache, runny nose...brought him to the pediatrician to find it was strep... obviously this means he has grown a resistance to the prophalactic Omnicef...Pediatrician gave him 10 days of Cleocin which is not penicillian based...we are on day 6 with drastic reduction in tics... Now here's the BAD news...my neurologist is moving in two weeks...to Nebraska...I'm in NC...and the other neurologist in the practice will not take my son's case because she 'does NOT treat PANDAS'...and my ped is only cooperating at this point because I had a neurologist make an actual diagnosis who is handling most of his care...I am waiting on a phone call back for a possible referral to another neurologist in the area who DOES treat PANDAS...but the nurse did not sound hopeful...I have a new Rx for Azith to carry us through June...but what if he develops a resisitance to that in the meantime...and then after June...then what? How exactly does a neurologist NOT take a case from her partner...when she knows my son in smack in the middle of another episode...as she had to help us out last week when my Dr. was out of town...I was told today that was a one time thing... I don't know right now if I want to scream or cry...

I come up with about 20 questions a day about PANDAS. I try to spread them out a little so you won't all think I have gone crazy... I was curious if other parents have noticed that their kids with PANDAS have a very raspy voice? My son has a raspy voice all the time. He has had it for so many years that I don't know when it started. I am guessing it was when he was in the first grade and he had his first strep infection. It is as if his throat has never been the same because he has had so many cases of strep throat and sore throats. Possibly scarring, do you think? I have this on my list of questions for Dr. K. Thanks, Judy...

In our case, our daughter's OCD directly impacted her ability to eat -- but this was before antibiotics. Our daughter had a fever on Jan 23rd, 2008 and in the following week stopped eating snacks. She had a tooth extraction in Feb and after that her symptoms ramped signficantly such that she was down to eating 1 small meal per day. She had body morphology issues and all the classic symptoms of anorexia nervosa in a 7 year old. Her rationale for not eating was so that if she did eat something "she wouldn't weigh more than 50 lbs". There's a lot to our story, but the short summary is that when she was down 15% we were able to hospitalize her for malnutrition. It was there that we were able to culture her and get blood work and discovered that she had GABHS as did her sister. After Augmentin it was as if a cloud cleared and a part of her came back but it was a fight for the next 3 months as the symptoms came back when we switched from Augmentin to Amoxicillin prophylaxis. It was several months later when we tried azithromycin and on day 9 her symptoms passed. Your poor sweet little girl has been through so much. Does she ever cut her food into tiny little pieces? My niece is doing that. Your daughter is just so little. It is such a road. Over this past year, we've kept her on prophylatic azithromycin. She had many repeat exacerbations when in close contact with GABHS -- in fact we called her our canary because when she starts to ramp, we can take her sister in and she'd be positive for GABHS. We did check her sister for negative cultures 3 weeks after treating to ensure her sister wasn't just a chronic carrier. Exacerbations usually lasted 6 weeks. The issue for us was that she never quite came all the way back and by July this year many of the original symptoms were back. We tried a prednisone burst and this yielded good results for 4 days; however, this was a week after completing the 6 day burst. We did IVIG in August and for the first 2 weeks we were quite worried as things got considerably worse. On week 3, she got substantially better and by now 12 weeks post IVIG she's doing very well. We'll probably keep her on prophylactic antibiotics for quite some time. It is crazy. In our case, she did have the full on body morphology issues and drew people funny. It wasn't a fear of choking thing, it was a straight on fear of gaining weight. Do you think he's depressed? We ended up putting our daughter on SSRIs at an extremely low dose because she had retreated so far into a shell. This was partially because she had no energy from not eating, she also had a pretty severe form of social anxiety, but more than anything else, she was depressed. In our case, it was pretty easy to diagnose as she was making suicidal statements at her doctor's office -- sort of freaked everyone out. Hard to say whether he is just really into computers, needs some escape, is passionate about his work, is hitting puberty or something else is going on. Might be worth raising with your psychiatrist. Yes, I do think that he is depressed, but it seems to be lifting slightly on the new augmentin dose. We have tried SSRI's in the past with disasterous results. He was on such a small dose and he was jumping out of his skin, we found him pacing in front of the house at 4:00 a.m. alone and talking to himself. He would throw himself into his closet doors. It was like he could not handle the up regulation in his brain. He is older now and I have thought but trying again, but I am afraid. Thanks for all your help, Judy.. Regards, Buster

Dear Buster, Thank you for the reply. In looking at your summarization of my son's history you really did sum it up. Looking back even further he did have other severe episodes of OCD and tic behaviors but they always seemed to settle down. I had read about PANDAS but could never find a doctor to really "buy into it" and agree to do the research to treat it. What is different during this most previous episode is that he became completely incapacitated by it. It was almost impossible to get him to leave the house. It consumed his whole existence. It frightened me so much that I turned to this forum and found Diana Pohlman, and at the same time found the saving sammy book. Yes, I have a child with PANDAS and no I'm not a doctor. Our dd9 had severe OCD symtpoms including requirements about how people went through doorways, ritualistic questioning and culminating in hospitalization when her obsessions prevented her from eating. Is you daughter doing well now? Do you have your daughter on high dose antibiotics? If she is, did you notice her refusing to eat while on this high dose? My son has been refusing food quite a bit since he started on the high dose Augmentin. He NEVER refuses food. Not to say that he is not picky. He is very particular about what he eats, likes to eat the same things over and over and over, but he always wants to eat, so it does concern me. He is quite overweight right now, 118 pounds, 12 yrs old next month. The reason I wanted to get more info on your daughter is that I read somewhere that PANDAS can sometimes manifest as anorexia instead of OCD. Is that correct? My niece who is 13, had a sudden onset of anorexia at the beginning of 6th grade. 11 years old. What made me question it is that they said she does not have the "typical" type of anorexia, she is not concerned about her body image at all. That she is more concerned about perfectionism. Both her parents are brilliant. They have their Phd's from Berkley in Bio-Chemistry. What is sad is that they do expect her to be perfect and she is extremely bright, but she still feels that she does not measure up. I suggested that they look into the PANDAS diagnosis and her Mom said that she is over the hump and she grew an inch. When we saw her she was a thin as a ail. SHe has high anxiety and barely eats. She chops her food in tiny, tiny pieces. I also read that sometimes they develop a fear of choking on food with PANDAS and that can prevent them from wanting to eat. Does this all sound crazy??? Part of the reason that he has gained so much weight so fast is that he has given up so much on life, i.e. not going outside, not riding bike. He has become VERY sedentary. Almost always on the computer. He is a genius at it (don't want to sound like a brag). He is hyper-focused/obsessed with everything he does. He does animations on the computer and is even creating commercials. He has lost all his friends. Honestly he has not had very many close friends because he is extremely over-sensitive and takes things very personally. Friends usually give up. It just breaks my heart. I At this point, I do think the Cunningham tests are likely going to give you the most answers (depite them being a research study). I can see why with the intensity that you are considering IVIG. We ended up going that route as well. Thank you for all your comments, very helpful! Wishing you the best, Buster