Wilma Jenks

OCD so severe that she is non functioning

12 posts in this topic

can anyone tell me if there OCD or someone that they know of, has OCD so severe that they are stuck doing the same thing over and over all day long. they don't shower, can't hold a conversation, forget to eat or go to the bathroom??? my girl has been like this since a very young child. any stories and similar situations. thanks>

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can anyone tell me if there OCD or someone that they know of, has OCD so severe that they are stuck doing the same thing over and over all day long. they don't shower, can't hold a conversation, forget to eat or go to the bathroom??? my girl has been like this since a very young child. any stories and similar situations. thanks>

 

My 7 year old son has significant OCD. We have yet to figure out if its truly OCD or tics. He is constantly repeating what others say, and do, its extremely difficult to have a conversation with him (since he's always repeating), and he does the same things over again (i.e. certain movements, gestures, etc.) His writing was beautiful and now he has a need to place hooks at the end of letters, and its become messy. I can tell he needs to retrace the letters which takes up a lot of extra time. He's starting facial grimaces and neck jerks. Of course, stress aggravates everything. He's been seen by a neurologist and she couldn't tell yet if it was OCD or tics. He does take his baths but I notice that he "holds it in" especially at school. The "not going to the bathroom" thing you mentioned may be in fact OCD, not that she is forgetting to go. Watching your child have OCD is really tough. Andrea

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Hi Santi,

do you think your son could have PANDAS?

you mentioned facial tics starting and handwriting worsening. Those (along with severe OCD) are kind of hallmark in PANDAS kids.

I just wanted to mention that- in case you have not looked into it.

Best Wishes.

 

Wilma- have you tried Rilutek? IT seems to help treatment resistant OCD. If you cannot get a doc to prescribe it- there is a study in NIH for it.

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Hi Santi,

do you think your son could have PANDAS?

you mentioned facial tics starting and handwriting worsening. Those (along with severe OCD) are kind of hallmark in PANDAS kids.

I just wanted to mention that- in case you have not looked into it.

Best Wishes.

 

Wilma- have you tried Rilutek? IT seems to help treatment resistant OCD. If you cannot get a doc to prescribe it- there is a study in NIH for it.

 

My son has Lyme and Bartonella and a huge portfolio of psychiatric problems (which may all be due to lyme??). We have gone down the PANDAS route and its unlikely he has it. Andrea

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Santi,

I have 2 kids with PANDAS- one has PANDAS to a tee (strep-related onset & exacerbation)OCD and tics only.She had several PANDAS treatments and is doing really well.

The other one had no known strep throat (only strep on a stool culture) and the psychiatric diagnosis are varied & severe. She did have positive Lyme & babesia (found a few months after the sudden onset OCD)

 

We did lots of LLMD-prescribed treatments and then moved on the immune system therapies of PANDAS. Things are looking up- it seems.

 

I just want to encourage you that PANDAS (or whatever this entity is) is being recognized as potentially caused or exacerbated by Lyme and other things.

I know you did not ask for any advice, I just read your post and wanted to comment.

Edited by PowPow

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My child has bartonella and lyme and also has a huge amount of psychiatric symptoms.

 

How old was your child when you first new something was wrong? Have you noticed that treatment is working? Andrea

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In retrospect, since birth I noticed symptoms. At 2 is when the agitation and psychiatric symptoms got REALLY bad and thing got worse year after year. She is EXTREMELY ILL and non-functioning. I saw the bactrim and mino help at first, but like everything we try...it helps for awhile and then she spirals out of control again. It is just awful and I am so dang depressed about not being able to get her some relief. Ugh!!! How old is your child? Sorry if you mentioned it already.

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In retrospect, since birth I noticed symptoms. At 2 is when the agitation and psychiatric symptoms got REALLY bad and thing got worse year after year. She is EXTREMELY ILL and non-functioning. I saw the bactrim and mino help at first, but like everything we try...it helps for awhile and then she spirals out of control again. It is just awful and I am so dang depressed about not being able to get her some relief. Ugh!!! How old is your child? Sorry if you mentioned it already.

 

Hi Lily, I am so sorry to hear how tough its been. We are in the same boat. I also noticed problems around the age of 2 and by 3 I was visiting a psychiatrist. He is 9 years old. How old is your daughter? My son has been on treatment for about 5 months and we are still trying to stabalize him on the right abx. For him, what seems to work best is the Rifampin. His LLMD seems to think that the Bartonella is his biggest problem and the Lyme is only secondary. When we took him off of the Rifampin his symptoms began to resurface. Now that he has been back on it for about a month, we are seeing improvements again. I am sure your doctor will find something new if its not working. Where do you live? Andrea

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My DD10 has had problems since birth. Sound, light, touch sensitive, non-stop crying. Dark circles under eyes. Febrile seizures. Lost speach at 16 months after MMR vaccine. Speech therapy until 6, OT, PT diagnosed ADHD, inability to concentrate, delayed social development, bed wetting until age 8. Unknown bite 2008, motor/vocal tics began soon after which were exacerbated with strep infections, cleared with penicillin used to treat strep. Diagnosed PANDAS (but no testing), pediatric psych. refused to treat. LLMD found lyme/bart and she has been treated since June 2011, biaxin/rifampin for 4 months. All symptoms resolved. Handwriting improved, able to concentrate, tics gone, sound/light sensitivity gone, age appropriate behaviour, happy, hardworking at homework, wonderful little girl. Rifampin was stopped (we thought bart had been addressed) in Oct. By end of Dec all symptoms had returned - everything, all physical symptoms motor/voc tics, unable to play with kids at school etc. Restarted rifampin two weeks ago and saw the last tic two days ago. Completely different child and back to where she was in Sept. I hope the Abx keep working.

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My DD10 has had problems since birth. Sound, light, touch sensitive, non-stop crying. Dark circles under eyes. Febrile seizures. Lost speach at 16 months after MMR vaccine. Speech therapy until 6, OT, PT diagnosed ADHD, inability to concentrate, delayed social development, bed wetting until age 8. Unknown bite 2008, motor/vocal tics began soon after which were exacerbated with strep infections, cleared with penicillin used to treat strep. Diagnosed PANDAS (but no testing), pediatric psych. refused to treat. LLMD found lyme/bart and she has been treated since June 2011, biaxin/rifampin for 4 months. All symptoms resolved. Handwriting improved, able to concentrate, tics gone, sound/light sensitivity gone, age appropriate behaviour, happy, hardworking at homework, wonderful little girl. Rifampin was stopped (we thought bart had been addressed) in Oct. By end of Dec all symptoms had returned - everything, all physical symptoms motor/voc tics, unable to play with kids at school etc. Restarted rifampin two weeks ago and saw the last tic two days ago. Completely different child and back to where she was in Sept. I hope the Abx keep working.

That's what happened to us. My son was on Rifampin and Azith but I can't say all symptoms disappeared but the worst of it did (rages and anxiety). Since he became extremely hyper we had to change abx and symptoms started to return. Then he was put back on Rifampin and Biaxin and ALinia and we are going on our 5th week and just beginning to improve once again. We are starting to see a very different child. I pray that it keeps going. Andrea

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  • Help us learn if blood type has a correlation with PANDAS/PANS   21 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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