Johnsmom

Hello Last week I was so pumped about the thought of my kid not actually having autism but having pandas instead. I dont know what it is about the autism label that bugs me. When he was diagnosed at age 5 (hes 8 now) after waiting 7 and 1/2 months to see the neurologist, I was devastated at the label PDD-NOS but thought it would at least give us some guidance. Boy was I wrong. Now I find myself with a kid who acts weird (tics, OCD behaviors, emotional) when the titers are flared. I think I want a PANDAS diagnosis to get rid of the stigma of the autism label so I can truly say all along, HE IS JUST SICK, when autism means the same thing to me but not everyone else. I viewed a post of mine last week where I am telling all of you that I dont think my kid has autism. I have pulled out all of my old journals, medical records and I am driving myself insane. My house is a disaster. I cant funtion at work. After reading more about PANDAS/PITAND diagnosis, I am just not so sure its an exact fit. Its not black and white. We didnt have sudden onset. Right now my kid is doing AWESOME! This week in particular. He is conversational, agreeable, his speech is good and he is motivated. He gets these bursts of motivation and then they all disappear. He has a cold this week and I often wonder if his body is busy fighting that off and the strep titers are not attacking his brain. I have been reading all these posts. I cant imagine what some of you go through. Then again we have been through a lot too. I have 6 elevated ASO titer tests in the past two years. My journals tell the story of the roller coaster ride. We go up and we go down. He has told me he wants to push me off of a cliff, he has told me he has bad thoughts, he has had body tics and facial tics, he has had jerky body movements, he has told me that he needed to be on something with much frustration in his voice. (meaning he needed to be on the video game or computer) He has weird voice fluctuations. There is so much more. Like I said he is almost so normal no, to me anyway. The teachers dont understand when I ask them how he is doing. He functions well in the class but had a recent episode of emotional meltdowns. They have subsided. Can anyone just tell me to relax. Really? Its just about my son getting healthy. Who cares about a Label? right? signed, going nuts in Edgerton, WI

wOW! I am a newbie and your story is great. I am sorry for what you and your son had to go through. You give me a lot of hope for our son. We have our 1st appt with DR K on March 31st. I am having a hard time focusing on daily life now. My son was diagnoses PDD-NOS at age 5. I have 6 titer tests since then that are all elevated. He has OCD, intrusive thougts and tics that come and go. I look back though when he was a baby and wonder if he had it then. He began to slam his legs in to the crib in his sleep when he was 6 months old. It lasted three weeks. He then obsessed about touching my hair. Many other weird things too but he is my only child and was never really sick that I knew of. He did have pink eye when he was 1. hes sick all the time now. right now he has a cold and is acting unbelievably well. The calm b-4 the storm maybe.My story has a lot more too it of course. If I could only relax until the 31st! I am so glad I found this forum. Wow! I guess some guardian angel(s) were watching out for me when Shulman was too busy to take my call! I just do not understand the vehemence of these nay-sayers! What's in it for them?! Skepticism on some level I get, and I think it can be healthy. But I am really baffled by the vociferous negativity of these folks like Shulman who won't even meet the growing evidence with some level of professional curiosity. It's shocking, really, and says a lot about their character.

I agree! Yay!! Definitely a better heading.

In my spaciness I forgot to add that my dads sister also had rheumatic fever!

my kid wasnt as sick as yours until he got older. i do remember pink eye when he was 1 but then no ear infection until age 4. he was healthy but cried a lot. had seperation anxiety, poor sleeper and fixations,Ocd that would come and go. thank you for responding and i hope your son is doing well. i know how you feel. why couldnt i have done more? not our fault. not at all. thanks god our kids have parents who care. Johnsmom: I am at work too. It is hard because when I am at home I am even more busy!! The amazing thing for me that I have found on this forum is other links to PANDAS my son has I did not think about before: Sensory integration issues Auditory processing issues Chronic, many allergies School issues Immune issues Looking like Aspergers but not Aspergers Chronic sinus issues, this one is new. We have a call today into the ENT he saw last week. Since you have the elevated titers as I said before your case seems more clear cut, more of a "slam dunk". When my son was four and five he was more severe and I would get teary at work too. I did not have this forum then. I wish I would have, it would have helped me so much. But even now that ds is 9 my husband and I still tear up when we talk about how severe and little he was back then, when all he wanted to do was eat and could not eat. My ds does not remember that. I teared up today when I read Dr. T's post about the little boy with anorexia symtpoms who is dying. I mean, I don't know the story but I hope that kid is getting IVIG or PEX.

my pdd-nos 8 yr old is coming down with a cold. it sounds like chest and nose congestion and a cough. no fever. he has been in great spirits, funny and agreeable. it almost appears as if he is a little hyper too but it is not bothersome. can this be strep starting too or something to do with the fact that his body is trying to fight off a cold? thanks

I should really stop checking these posts at work as i am hiding my face so no one sees me bawling my eyes out. I have never had such a strong feeling about something in my life. Thank you thank you and i hope everyone who responded to my post hears me as well. I am so glad i am here!

Thank you so much. I am so happy I got on this post. what a wonderful intelligent group of parents. I was in touch with Diana Pohlman and have read some of the pandas network but appreciate so much the info that you have highlighted on. Our appt with Dr K is March 31st. I have to calm down. My mother just told me this morning that her mother died from an enlarged heart when she was 40. She had rheumatic fever as a child and it damaged her heart, My mom was only 7 at the time. I knew all about this but didnt know about the rheumatic fever. I busted out in tears when she told me as I was driving down the interstate. I also think if the strep is on the skin, that can affect blood tests and not give clear results. it's also harder for antibiotics to clear the strep when it is on the skin. What I'm going to do since it can be overwhelming to go on this forum at first, is provide some links thatwill answer a lot of your questions and open you up to a lot more. I suggest printing them out and reading them. It makes it a little easier to follow. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Buster's Flow Chart http://www.latitudes.org/forums/index.php?...ic=6688&hl= Finally, here is a link to OCD as others on this forum have seen. Sometimes you get so accustomed to the "quirks" our kids have, you don't even realize it is OCD or not the norm... http://www.latitudes.org/forums/index.php?...ic=6153&hl=

Just to let you know the rash started around age 6 I think.

My son did Vision Therapy for about 5 months. We went to a doctor in Wisconsin who diagnosed him with ocular motor dysfunction and convergence insufficiency. We stopped because we did not see any improvemnt and insurance stopped paying for it. I also talked to a doctor who told me that until I got the metals cleared he would not do well with this therapy. I dont know if it would help your child. This is just our situation.

[ Oh My god. I am losing it right now. I think he got the groin rash about two years ago, just prior to a bout with impetigo and rectal strep. Did this boy just start exhibiting behaviors when he got the rash. My kid was always a little different from a very yound age. please please respond. quote name=SF Mom' date='Mar 7 2010, 04:30 PM' post='58970] I am so sorry to hear your son is sick. Geez...... I just posted about Kawasaki's and Rheumatic Fever two minutes ago. Our son's friend who had RF, had a groin rash and looked like he could have been diagnosed with Asperger syndrome last OCT. He got RF at 4 years - 4 months, he is now 7 years - 6 months and many, many of his symptoms are starting to reverse. He has been treated by Dr. K with two IVIG treatments, 12 weeks apart, last treatment just two weeks ago. Can you remember when the rash started? Was it prior to or around age 5? I sure wish you the best of luck. Dr. K is absolutely the best Dr. for your situation.

I am so glad you replied but boy am I having a hard time replying to this post. This format is weird or I am just very tired. I have a lot of suspicions about what acutally happend to my son. At 6 months of age he began slamming his legs into the crib in the middle of the night in his sleep. This is when he was lying on his back. I talked with the doc about it and he said to try to wake him when he was doing it. he wanted to see it he was having seizures. I lasted about three weeks. If I recall I think it only happened when he was asleep. I was able to wake him so we let it pass. I documented it becuase it was so annoying. It would wake us up. One night it lasted all night. I got out of bed 6 times. He was a bad sleeper with seperation anxiety. He also had a fettish with my hair. It seemed to comfort him when he touched it. With his bad sleep habits I remember being up in the middle of the night with him. I used to have to rock him to sleep and then rock him to sleep when he got up in the middle of the night. I vividly remember him facing me on his knees (he was early toddler age) with his pacifier in his mouth with incessant drool. He would just touch chunks of the top of my hair repeatedly. A few times he would then pull it hard. I remember jumping one night becuase I was falling asleep in the rocking chair and he yanked it really hard and I yelled. It startled him and he began to cry. He was a chubby baby. He wasnt a cuddler but loved to sit on my lap and watch Thomas. As he grew taller and thnned out, we began to notice that he seemed somewhat weak and uncoordinated. He never wanted to do crafts. He avoided other children except if they were a little older. He talked late. Having only one child I didnt know better and I thought he would just catch up because thats what boys do. He could barely pedal a tricycle. I discussed some of these things with the doctor. I didnt take him to the doctor a lot - he wasnt really a sick kid. I do remember calling the doctor though when he would cry. I thought he had an earache. I took him in but no earache. The other times the nurse would just say that babies cry. I did have an appointment set up to have a speech evaluation around 3 years of age. I would call to him and he wouldnt respond, but sometimes he would. I cancelled the appt after talking with other moms who told me that all our kids ignore us. I started taking him to the YMCA for a sport of the week class. It was in a gymnasium with about 50 kids and he was scared to death. He covered his ears and rolled into a ball. The teacher suggested a smaller class which I took him to. It was a small padded room with about six kids. They did gymnastics. I was able to leave him. He liked it. 4 yr old kidndergarten started and thats where everything fell apart. He avoided the other children, didnt want to do crafts and would hide under the lego table. The only thing he did was play with the same three pieces of legos everyday. The teacher called and we had an IEP where a counselor told me she thought he had aspergers. I freaked! We waited 7 1/2 months to see a neurologist who gave us the label of PDD-NOS. She had to send us to a speech therapist and a neuropsychologist because she could not label him for sure without their input. There is so much more. That year he came down with some kind of sickness where he could not walk for a day. The doctor had us go for bloodwork to check his SED rate. It was 21 on a scale of 1-15. He said it was viral and it had to run its course. He also said he only saw this once in another child. He developed an ear infection that year too. He never had one as a baby that I know of. We began the bio-medical approach when he was five. Supplements, gluten and casein free diet chelation, the list goes on. He developed rectal strep about two years ago. We treated it but his groin rash never only went away around this time of year (I dont see it now) We were told it was yeast and to put antifungal on it. We began to check strep titers because of behaviors. One day he told me he wanted to push me off of a clff so I would die. I called the doctor right away and she said strep!!! Since then he has had 6 titer tests done all elevated ASO's no DNASE. We also had one case of strep throat and our share of fevers. This past Halloween he got sick again. He had a fever for two days and then it broke. I took him for bloodwork and then the next day he couldnt walk!!! There it was again. Doctor said it was H1N1 but he didnt test him. UGH. I should have demanded. His ASO's came back at 651!!!! There is so much more to right about behaviors. He is a sweet boy. I have seen so much normalcy and then it dissappears. I am going absolutely crazy until we see the doctor on March 31st. I really think my boy is just sick!!! I hope you or anyone else has time to read and respond. Please talk me off of the ledge. Ann

Hello- This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5. We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes. Thanks Ann