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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.

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I am sorry to hear about your poor son. It is so heart wrenching to see our children suffer. You are here now - know that help is possible!

 

I would at least try for a phone consult with a PANDAS/PANS specialist or LLMD. They are the only doctors willing to put their practices on the line by treating with the long-term antibiotics needed to resolve these infections. You can talk until you are blue in the face and not convince mainstream doctors about the connection between psych disorders and infection/brain inflammation.

 

Our LLMD (ILADS recommended) understands PANDAS (PANS) can be caused by strep, but also by other infections (Lyme and it's co-infections, mycoplasma, viral infections). In our case it was caused by bartonella. I have heard mentioned here of having a nurse visit the house to collect blood samples from children unable to leave the home.

 

There are a couple of parents here with children suffering from an inability to leave the home because of high level ocd issues. I'm sure they will chime in. I know I haven't been of much help but you have started here on the road to some recovery.

 

Maybe start another post mentioning high levels of OCD.

Edited by rowingmom
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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 :)

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