Newbie from Alabama

[BamaMom]

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.

[MomWithOCDSon]

BamaMom --

 

Call those docs the other PANDAS mom gave you and get your son some medical treatment, ASAP! I personally think it's a tougher road for our older kids, but still well worth the effort in terms of payoff with the improvement in the quality of life. Stay with it, don't give up, and don't take "no" for an answer!

[BamaMom]

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.

[Dedee]

You may have to start with small steps until the big steps of getting him out of the house. Maybe you can do phone consults with Dr. T and get him started on antibiotics and possibly steroids and then when you get some improvement you may be able to get him out of state to a doctor for a more thorough exam. We had to start with antibiotic cream because my daughter would not swallow any sort of medications. It wasn't wonderful, but we got a compounding pharmacy to give zithromax in a compound cream that we used. It gave just enough help that she started to swallow small capsules and we started zith by mouth and then very gradually worked up. It was extremely slow but better than nothing. This has been going on a long time so reversal may take a while also. The good news is that we now have doctor's who will be able to help your son. There is hope. You just have to be stubborn and patient. Keep us updated on your progress.

 

Dedee