How to deal with 7 yr old and OCD/PANDAS

[Tamistwins]

Hi I was hoping someone can give me some advice on how to deal with my sons ocd. He has been diagnosed with PANDAS and is being treated with antibiotics and IVIG. However, ok I know he has PANDAS, I know there is a bacterial infection causing his ocd but how do we deal with it. I feel like I can't take it anymore. On the one hand I feel sooo sooo bad for my son..this is robbing his childhood. He can not function without doing his routines which drive me crazy. He has things that he needs to do and I understand that. He needs to touch things etc. But what I can not handle is him making me a part of his compulsions. He screams to me "ok" and I need to repeat it to him, only I repeat it and it is never good enough he keeps saying it again, so I respond and respond and respond, he gets louder and gets angry and I can't take it anymore. There is always screaming and yelling in the house and I hate it. Then he says "love you" and yes its sweet but I need to say I love you in the way he wants it and I never know the way he wants it cause we need to scream it a million times. Does any one else deal with this type of OCD? How can I deal with it? Is there a way to deal if it's PANDAS? His rages and screaming on top of his lungs if things don't go his way is just too much to bear. I can no longer take him out anywhere..it's embarassing. There must be a solution so we can enjoy the normal things that kids his age enjoy. And he refuses to do the things that he is very capable of doing on his own. Like getting himself dressed, or putting his socks on he demands that I do it. Lately he became so nasty I know it must be ODD too.

 

 

Oh please help with sugestions!

[Tamistwins]

Is there anyone who can relate or advise please?

[Ozimum]

I feel your pain and frustration. I dunno if this helps, because we've had different anxiety OCD stuff...Recently 16 yo DS got the flu and strep and it got really bad. Along with antibiotics, our Biomed doc suggested a very low dose of an SSRI (Gulp!) There must have been enough serotonin for it to work on because it hasn't made things worse, and the anxiety abated. (Phew!) At the time we had just started working on trying to improve his immune system and gut issues (strep and staph!) (Also found he couldn't process caseine so also started a no dairy gut healing diet...)

So here's a thought, for what it's worth...

Have you had blood tests done for vitamin levels? We found our son was VERY deficient in Vit D and he's been taking supplements for a few months. We're waiting retest results now. We've also tested Vit B12 levels for the first time... While DS's anxiety has improved alot, the OCD has not yet disappeared entirely. I'm figuring we will continue to work on a number of fronts and hope that time will heal!

I hope you find what works for you and your son.

[Tamistwins]

Hi there thanks for your response and I'm glad to hear your child is doing a bit better. we treated for ocd by using ssri before we had pandas diagnosis. It didn't help us. But, his ocd hasn't been this bad until our 2nd ivig. I feel like nothing is working and things are just going downhill.

[Ozimum]

From what I've read, deficiencies in Vitamin D and B appear to be implicated in OCD... wouldn't hurt to check it out if you haven't already.

[Tamistwins]

Will look into it thanks so much

[Ozimum]

Me again...about those gut issues? Any progress?

We're working on so many battle fronts with our kids, I get lost with it all... But I wanted to add that my son also has gut issues which I'm almost certain are related to his OCD. Have you been to a DAN! doctor? A good one will order stool testing for strep, staph, yeast, etc, etc, as well as blood tests to check for deficiencies. My son had no e-coli in his gut, which was replaced by strep and staph. Not good! No wonder the neurotransmitters were going haywire. He also found ds wasn't processing casein and since then we've all gone on a gut healing diet (lots of veggies, GF CF, low to no grains, organic, no sugar) and we all feel really well. I'm determined to take this seriously because his OCD is the PITS! It's been slow and steady improvement, with ongoing treatment, and the supplements, probiotics, and enzymes, etc aren't cheap, but I'll go without shoes! Apologies if you have already gone down this road...

[Tamistwins]

Hi again,

We tried luvox for 3 days and then stopped. His pupils were so dilated and he kept walking around at night complaining not feeling well. We are now giving him 2 antibiotics cipro and zithromax. He slept all night for several nights but tonight he keeps waking up complaining and keeps leaking through. His ocd is bad, he bangs his head on wall and knocks his teeth. Its awful to watch. He is awful eater, never eats what family eats, picky and particular, would never follow special diet. I'm waiting for light in end of the tunnel. Thanks for checking in!

[Ozimum]

You've been in my thoughts. I'm so sorry this is so rough. You know you are amazing, don't you - you're still in there battling for your son! You WILL get to the bottom of this.

You are dealing with multiple layers of issues, and it's really good that are already heading down the Lyme road. My two cents for what it's worth is don't forget about boosting his immune sytem and sorting out the gut issues.

Edited November 22, 2010 by Ozimum

[Tamistwins]

How have you been... You are the only one who responded to my post and I wanted to thank you and say hi. Wow reading my post... Things were really bad then. Things are somewhat better now. Not where I would like it though, we have better days but unfortunately when my son is better then I deal with my daughter whining for no apparent reason. I can't catch a break. We did see a Dan doc, gave vancomycin for gut. Did blood work, treating for low cholesterol. All my kids have that. Anyway, really just wanted to see how things were with u and your family.

You've been in my thoughts. I'm so sorry this is so rough. You know you are amazing, don't you - you're still in there battling for your son! You WILL get to the bottom of this.

You are dealing with multiple layers of issues, and it's really good that are already heading down the Lyme road. My two cents for what it's worth is don't forget about boosting his immune sytem and sorting out the gut issues.

[Ozimum]

Hi! Thanks for asking...DS is healthy at present, but I feel like I'm constantly holding my breath, waiting. He's actually happy and says his intrusive thoughts have been sitting around 1/10, sometimes 3, worse in the mornings (I've been pondering why that might be!) and his OCD is at a low level right now, but not quite gone. He's still in treatment for his gut issues so things may continue to improve. He's just had some wisdom teeth extracted and I'm fearful of the potential for an infection (given his teenage lack of dental hygiene, despite the contamination/germ OCD - there's no logic at all!) so I've been getting him to do alot of salt water rinses, etc. (I so do not want to see another PANDAS flare.)

Glad to hear things are better for your son...long may it last. Hope the answers keep coming for you and we see improved health for all our children...and that we parents can start living a little!

Edited January 26, 2011 by Ozimum

[Tamistwins]

Hi I hope your sons wisdom tooth recovery its quick. Were they impacted? I had my impacted ones out when I was much older, kept putting it off... Frankly I was terrified, they told me it was possible to get nerve damage and lose sensation in my tongue. That freaked me out. I eventually had to get it done. Thank G-d I'm OK but recovery was difficult. As long add your son on antibiotics and he does rinse he will be fine.

Glad to hear he is doing much better.

[906bell]

Hi I was hoping someone can give me some advice on how to deal with my sons ocd. He has been diagnosed with PANDAS and is being treated with antibiotics and IVIG. However, ok I know he has PANDAS, I know there is a bacterial infection causing his ocd but how do we deal with it. I feel like I can't take it anymore. On the one hand I feel sooo sooo bad for my son..this is robbing his childhood. He can not function without doing his routines which drive me crazy. He has things that he needs to do and I understand that. He needs to touch things etc. But what I can not handle is him making me a part of his compulsions. He screams to me "ok" and I need to repeat it to him, only I repeat it and it is never good enough he keeps saying it again, so I respond and respond and respond, he gets louder and gets angry and I can't take it anymore. There is always screaming and yelling in the house and I hate it. Then he says "love you" and yes its sweet but I need to say I love you in the way he wants it and I never know the way he wants it cause we need to scream it a million times. Does any one else deal with this type of OCD? How can I deal with it? Is there a way to deal if it's PANDAS? His rages and screaming on top of his lungs if things don't go his way is just too much to bear. I can no longer take him out anywhere..it's embarassing. There must be a solution so we can enjoy the normal things that kids his age enjoy. And he refuses to do the things that he is very capable of doing on his own. Like getting himself dressed, or putting his socks on he demands that I do it. Lately he became so nasty I know it must be ODD too.

 

 

Oh please help with sugestions!

[906bell]

Is there anyone who can relate or advise please?

 

 

I can relate. I just discovered/joined this forum looking for help and advice for my son also. I have three children ages 4 and under. My 4yo son went from a perfect child to turning into a different child almost overnight right before he turned 3. He was recently dx by a neurologist with OCD, Tourettes and anxiety. His OCD sounds JUST LIKE your sons! We have to say 'okay' to everything he says while using appropriate inflection. A lot of his OCD is how we say things and respond to him. We have cycles though where he appears better for several months with just mild OCD and tics disappear or become mild to full blown episodes where we become almost homebound.

 

How do you deal with getting your child to school and how do the teachers deal? That is a tough area for us. We are just preschool right now but is scares me for down the road. Is your sons pandas dx? That is our next step and what we are trying to figure out currently. All I can say is good luck and you will be in my prayers. I daily pray for patience and strength to deal with this. It has such a profound impact on my entire family. Feel free to message me anytime if you need a listening ear....

[Megs_Mom]

Hi - the therapy that you may want to add as part of his treatment plan is called Exposure and Ritual Prevention or ERP. It will slowly teach your son how to control his compulsions, and how to help you extricate yourself from the rituals. We have a little girl with PANDAS, and the OCD is so amazingly hard. ERP therapy will not prevent future exacerbations, but it will give your entire family some really good coping tools so it is not quite so debilitating. You can find an ERP therapist by going to the OCFoundation's website at http://www.ocfoundation.org/. Good luck - if you want to see some examples of ERP therapy, you can go through some of my old posts on the PANDAS forum.