BamaMom

Karenna16, I am sorry you and your sis are having to go through all of this with your nephew! Not having family around to help makes it even harder! Your sister is lucky to have you for support. Keep being the sweet aunt that you are. This support group has really given me some wonderful advise and information. I have hope now!

TAnna, I am so glad you got an appointment for today! Good luck and I am praying for you and your son! You are a wonderful mama! Let me know how it goes and what dr. says.

TAnna, I am so sorry!! I am new to all of this so I have no idea what to tell you to help but that I will be praying for you. My DS is 23 now and we are going through the same thing. Yesterday I found a dr here in Birmingham,Al that was willing to see us and said to have in in at 1pm. Went upstairs to his room where he "lives" and told him I finally had him an appt with a dr. but it was at 1:00 so he needed to start getting ready to go. He blew up!!! Yelling, he said that I knew he had to have more time than that to prepare himself! I asked how long and he said a week. I told him good, because we have one a a week from today too at 8:45. He screamed THERE IS NO WAY I CAN BE THERE THAT EARLY! His sleep is always off. One week he sleeps during the day, the next at night. He is down to only eating toast and stick cheese. He has never been ugly, dissrespectful or mean towards anyone especially me! It is because he Can't do it! I cried the whole day! I just don't know what to do anymore! He is an adult, in age, so he can refuse treatment! He has! To get him to his first Psychiatrist appt. I went through the same thing with him. I told him he had 30 minutes. He could get in the car and go with me or pack up and leave, Two options, that's it and he went! Mad as CRAP the whole time, but went. He is so much worse now just don't know if that will work. All these years of this and just putting all things together and without a doubt, it is Pandas! I don't know how to start a DM but if you do, message me and we can chat. I am LOST on how to handle this!!! I can't just let him stay in his room forever and not help him but cant drag a 6'3 man out and make him do it either!

Tpotter, I am new on here but wanted to tell you your DS is in my prayes and has been since I read the post of his surgery! Of course you and your family also! I am so sorry you are going through all of this. Nothing is worse than watching our children suffer!

Rowingmom, Thank you for your reply! I am so glad to see your daughter is doing better! I do believe other infections have contributed to all of this also. He did have a couple of bouts with mico p and sinus infections too. Also remember a place on his leg, we thought was a bite of some kind, that got swollen and red and hot to touch. Dr. said it was MRSA and treated with 2 rounds of bactrim. Also, the boys went with their dad a few times to his hunting camp so I do worry about tics/lyme being an issue. I would like to see a LLMD also. Do you have any of these health issues yourself? I see where many parents do on here. I too had strep my whole life and the boys pediatrician suggest I have my tonsils removed that I could be the culprit. At 37 or 38 had them removed and the strep issues with us all dissappeared, just not the ocd. I removed a tic out of my hair 3 to 4 years ago. Didn't realize all of this Lyme stuff at all. A few months after that I got shingles, then horrible pain that would travel all over my body. Got so bad there were days I could not even get out of bed. My shins, arms NECK and head. Went to every dr. and had a billion test run and was dx with fibro. Long, long story but have spent the last few months getting off all of meds and trying natural suppliments. Had them check me for Lyme and dr. told me all negative but it was regular dr. Is all of this linked? I am determined to get to the bottom of all of this! I could not help my son get well for the way I have felt! Thank you for your insite on all of this! I am so proud of you and all of the others on this site for taking action and helping their children get well. I appreciate any info

Hi everyone. What a wonderful job you all are doing! I am new and only have posted on the new intro page. Got the kindest response from MomwithOCDson. Have been following for a few weeks wanting to learn some things and it is all overwhelming to say the least! I have three sons and the oldest two have suffered since a young age also with sudden severe OCD with strep. Back then there was no name and drs. did not have a clue! They are now 23 and 21. Youngest will be 18 next month but has not had any of these Panda symptoms. Thank the Lord but always worry! Oldest DS is the one I am most concerned about now. My middle DS is off at college and is OCD but is managing. Oldest DS has had horrible set backs. He started sudden Panic attacks in 10th grade with OCD. Of course drs. wanted to put him on ssri's and he would'nt do it. Slowly he got worse but could still make it. Never linked this to previous strep/ocd from when they were younger. He did'nt go to the dr with strep but guess he could have had it!? He made it through 1st year of college fine, though never the same normal, happy child as before. Beginning of second year BAM! He even remembers the day the crippling OCD began. He was off at school so I wasn't even aware how bad he really was. When he would come home he looked horrible, different, and was loosing weight rapidly! I remember his eyes looked dark and different!!! He always suffered more silently than other son. He is extremely smart...gifted and I think he was very embarrassed of the way he was feeling. Lack of control scared him he says now. He slowly stopped eating certain things until he is down to toast and cereal. Been to a bunch of drs. and they send us to Psychiatrist and behavioral therapy and nothing helps. This has been Years now and searching ocd I found all of you. The emotional ride we have been on cannot be described though I know you all understand! DS is homebound now, stays in his room ALWAYS. He lives in anxiety, fear and rituals that consume his entire life. As a mother, I feel horrible for not connecting the dots before now. He was dx with Severe Panic disorder and OCD, agoraphobia, emetaphobia ( fear of vomiting ) and anxiety disorder. I have lost my DS and want him back. He sleeps with garbage can by his bed and towels all over the floor because he MAY vomit. The fear of getting a stomach bug or food poisening is his main obsession. So he spends most of his day washing his hands until they crack and bleed. He lost the girl he was going to marry, his college, job, friends and life. I know this is connected to strep. When he was little he was even hospitalized with Strep A that attacked his lymph nodes and was in ICU for 10 days. Got a list of drs. from other members but DS cannot get that far from the house for Panic. Is there anyone you know of in this area? I have not read any post from Alabama! Got info from other member that Dr. T will do phone consults but am still calling everywhere to get a dr. to even acknowledge this. I know this was alot but thank you so much for everything you all do! You are all in my prayers.

Oh my sweet sis, I am sooo excited for you!! My precious neice is on the road to recovery! Now to find a doctor here in Alabama. I have called and researched till I am going nuts! Can't wait till we have our babies well! Iove you, Alandra

Hello My sweet sis. It was so good to see you all this weekend! We are gonna get our babies well!!! I am so thankful you found this site. All of these years of our kids going through these Horrific problems and we thought we were the only ones. It isn't just our family having "crazy" genes! Not that we are "normal" whatever that may be. There are amazing parents on here and I thank the Lord for leading us here to them. We finally have hope...all of us. Thanks to all and I love you Michelle! My DN and DS are gonna get well. Call me when you get home I got some great info from an angel of a mom on here that responded to my post.

Thank you so much for the reply! If only I had connected the dots to all of this before now! I feel so horrible! I just can't stop crying now! Has it gone too far for him to come back? I thought something or stress of college triggered his depression and OCD. All of these drs. are so far away! Which is fine with me I would fly to the moon for him to feel better. But, I truely cannot imagine getting him out of our town much less the state! He only leaves his room once a day now to get the couple of things he can eat and is back in his room. I will Never give up and never back down!!! To think of all of the drs. we have been to... just makes me crazy! I am so sorry if I sound nuts right now. Beyond overwhelmed and upset! I am just so greatful to find you all. Gives me hope again! Thank you Nancy and I am so happy your DS is healing! I look forward to saying those same words.

Hi everyone! I have been following this forum for many weeks and finally joined. What wonderful people on this site! I would never wish any of these problems on anyone but am also glad we are not alone. Just wish I had come across this years ago!!! Where to even begin without writing a book is why I haven't posted. My sister just started on here also her name is "pschelle". Our family story goes back so many years, way before any of this Pandas had really come out. Also, as far back as me being a little girl I had Strep throat all the time and many symptoms of Pandas also. Now have Fibro and do believe it is all linked. Have three sons 23, 21 and 17. Probably started before this but oldest two got strep at 4yrs and 2yrs is when the worst started. Oldest woke up with lymph node in neck swollen and sore and middle with sore throat, Both had throat swabbed middle positive and oldest negative. By the next morning oldest son had a orange sized knot on his neck and was screaming out he could not lift his head off the pillow. Took him to children's hospital where he was in ICU for 10 days with type A strep in his lymph nodes. All lymph nodes from waist up were orange sized and larger. It was the scariest thing I have ever seen! At one point he was given just a few hours to live. That's where it all started. I would call my sis and tell her that the oldest two were getting strep again because the sudden onset of severe OCD would start and soon after they would test positive. She is the only one that believed me at the time! My youngest son never showed these symptoms and still doesn't. Through all of the years of Horrific years of dealing with strep, it was my middle son that had the OCD, rage, ADD, complete FITS of things I thought no one could even relate to until I have read some of your blogs. All along the oldest was suffering silently with OCD just no other problems along with. To fast foward I had tonsils removed at 37 and all strep infections in the family stopped but all of the "crazy" OCD and problems with children did not. All of the years of off and on OCD among the other letters alaphabet continues. Never linked it to other infections. Now my oldest DS has such severe OCD he cannot function if life. He has always been super smart! Always excelled at school, was in college courses in high school. If he reads something, it is in his brain for life. Can even tell you what page the info was on in what book and where on the page. He is a computer geek and can play most all musical instruments by ear or self taught. Beginning his second year of college another bout of OCD started. He can tell you the day even. Now he is back home with us unable to do anything at all from OCD and severe Panic disorder. He also has Emetaphobia(fear of vomiting) which has caused extreme weight loss and fear of most all food and germs. Has also been dx with Agoraphobia and goes for behavior theraph. That is getting harder for him now, His entire day if controlled by his rituals and fears. My middle son is in his third yr of college and doing much better and I thought he would never make it. Will get more into him later for now my main concern is oldest DS. I got a list of drs. from a precious lady on the Pandas board that I emailed. Thanks too all for even reading this LONG post. I worry every second of every day that he won't make it! Just want my son back. Please help us. thank you again for any input at all.