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How can I help my son? Ocd and anxiety.
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amother




OP
 

Post Mon, May 03 2021, 7:04 pm
He's been for cbt therapy which did help a lot. He had tics and those are gone since he's been bh. He still suffers a lot, we're in England. I don't know where to start. My Doctor just said to get him therapy because if we go through the nhs, getting him diagnosed etc he'll most likely be put onto medication. I'm happy for him to take meds if he needs, and if it'll help. My dh isn't, he thinks ds is ok overall. But I see that he's far from a typical child his age. And he struggles with a lot of daily things. Hates having showers or baths (he won't tell us why bc he's embarrassed) needs reminding to change his underwear. He's 12! He is responsible to a certain extent but he also panics at every little thing.
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anonymrs




 
 
 
 

Post Mon, May 03 2021, 7:12 pm
Well, I'll just be the one to do it since that's what will happen anyway. I recommend you look into pandas.
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amother




OP
 

Post Mon, May 03 2021, 7:18 pm
anonymrs wrote:
Well, I'll just be the one to do it since that's what will happen anyway. I recommend you look into pandas.


I was just reading up about it. Thanks
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amother




Honeydew
 

Post Mon, May 03 2021, 9:00 pm
anonymrs wrote:
Well, I'll just be the one to do it since that's what will happen anyway. I recommend you look into pandas.
Ill second this, even though I’m sure many posters will roll their eyes. Ocd and anxiety in children is sooo often pans or pandas. And if there are tics too, that’s another classic symptom. The bath/shower/changing underwear thing is very common in pandas too, for us it’s sensory/cold sensitivity, executive function and a little ocd thrown in for good measure. We’ve seen major improvements in all these areas by treating chronic infections and Braininflammation. Good luck!
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amother




Emerald
 

Post Mon, May 03 2021, 9:20 pm
Asking seriously, so EVERY case of anxiety or OCD is related to PANDAS?
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amother




Linen
 

Post Mon, May 03 2021, 9:21 pm
amother [ Honeydew ] wrote:
Ill second this, even though I’m sure many posters will roll their eyes. Ocd and anxiety in children is sooo often pans or pandas. And if there are tics too, that’s another classic symptom. The bath/shower/changing underwear thing is very common in pandas too, for us it’s sensory/cold sensitivity, executive function and a little ocd thrown in for good measure. We’ve seen major improvements in all these areas by treating chronic infections and Braininflammation. Good luck!


How are you treating the brain inflammation? With antibiotics?

I took my son for the aso titer test at the pediatrician's recommendation because of his OCD and sensory dysfunction and wild behavior, but he tested negative for strep in the blood. I don't know what to do. My son does not respond to behavioral therapy.
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amother




Emerald
 

Post Mon, May 03 2021, 9:22 pm
And does it matter what kind of antibiotics? I have a relative who is a doctor, I'm sure I could get a prescription to see if that helps.
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amother




Honeydew
 

Post Mon, May 03 2021, 9:26 pm
amother [ Emerald ] wrote:
Asking seriously, so EVERY case of anxiety or OCD is related to PANDAS?
Not necessarily pandas, but more and more research pointing to inflammatory etiology for ocd and anxiety. And there’s always something causing the inflammation, even if it’s not a strep infection.
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amother




Honeydew
 

Post Mon, May 03 2021, 9:29 pm
amother [ Linen ] wrote:
How are you treating the brain inflammation? With antibiotics?

I took my son for the aso titer test at the pediatrician's recommendation because of his OCD and sensory dysfunction and wild behavior, but he tested negative for strep in the blood. I don't know what to do. My son does not respond to behavioral therapy.
Antibiotics take care of the infection in the hopes that it will quiet the immune system, but often some form of immunomodulation is needed as well. Pandas isn’t strep in the blood, it’s antibodies to strep mistakenly attacking part of the brain. The bloodwork drs typically run isn’t looking for strep in the blood, it’s looking for antibodies to strep, an indication that the person was recently infected with or exposed to strep. Either way, the bloodwork isn’t diagnostic, pandas is a clinical diagnosis.
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amother




Linen
 

Post Mon, May 03 2021, 10:05 pm
amother [ Honeydew ] wrote:
Antibiotics take care of the infection in the hopes that it will quiet the immune system, but often some form of immunomodulation is needed as well. Pandas isn’t strep in the blood, it’s antibodies to strep mistakenly attacking part of the brain. The bloodwork drs typically run isn’t looking for strep in the blood, it’s looking for antibodies to strep, an indication that the person was recently infected with or exposed to strep. Either way, the bloodwork isn’t diagnostic, pandas is a clinical diagnosis.


So if my son was negative for antibodies, and my doctor won't diagnose or treat him for Pandas, what do I do next? My son is distracted, overly sensitive, has a lot of sensory dysfunction, has alot of OCD tics, and obsessed with talking about war and wrestling and violence, even though he is not exposed to those things.

I have written about him on here before, and was told to have the pediatrician run the blood work for Pandas. I did, and I was not helped in any way. I am crying out, please tell me what to do next.

When you write things like "Pandas is a clinical diagnosis," you are not being helpful to me. How does that translate into doing something to help my son? He and my entire family are suffering.
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amother




Linen
 

Post Mon, May 03 2021, 10:06 pm
And what is immuno modulation? Please try to be truly helpful to me in your response!
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amother




Honeydew
 

Post Mon, May 03 2021, 10:13 pm
amother [ Linen ] wrote:
So if my son was negative for antibodies, and my doctor won't diagnose or treat him for Pandas, what do I do next? My son is distracted, overly sensitive, has a lot of sensory dysfunction, has alot of OCD tics, and obsessed with talking about war and wrestling and violence, even though he is not exposed to those things.

I have written about him on here before, and was told to have the pediatrician run the blood work for Pandas. I did, and I was not helped in any way. I am crying out, please tell me what to do next.

When you write things like "Pandas is a clinical diagnosis," you are not being helpful to me. How does that translate into doing something to help my son? He and my entire family are suffering.
If your pediatrician isn’t being helpful you need to either find another pediatrician who will, or find a pandas specialist. If you tell me where you are located I can try to help. Is your current pediatrician open to learning at all? This is a link you can send them that has all the information they need https://www.pandasppn.org/

These are links to pandas specialists by state
https://pandasnetwork.org/us-p.....TEMAP

https://www.neuroimmune.org/pa.....tors/

https://www.pandasppn.org/practitioners/
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amother




Honeydew
 

Post Mon, May 03 2021, 10:14 pm
amother [ Linen ] wrote:
And what is immuno modulation? Please try to be truly helpful to me in your response!
Immunomodulation means fixing the immune system so that it doesn’t over react to infections and cause autoimmunity in the brain.

I’m sorry for your suffering! Truly! It is so unfortunate that pandas is so hard to diagnose and treat! I wish there was a way to make it easier on everyone.
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amother




Emerald
 

Post Mon, May 03 2021, 10:18 pm
So do poor families have any hope? None of these doctors accept Medicaid.
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amother




Honeydew
 

Post Mon, May 03 2021, 10:21 pm
amother [ Emerald ] wrote:
So do poor families have any hope? None of these doctors accept Medicaid.
I know. It’s criminal. It really is. I wish I knew what to say. Often if you look around hard enough you can find a pediatrician who is willing to help.
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amother




Emerald
 

Post Mon, May 03 2021, 10:32 pm
amother [ Honeydew ] wrote:
I know. It’s criminal. It really is. I wish I knew what to say. Often if you look around hard enough you can find a pediatrician who is willing to help.

Are the standard prescriptions published anywhere? I have a relative who is a doctor and would likely be able to help, although he is not a pediatrician and doesn't know too much about PANDAS.
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amother




Honeydew
 

Post Mon, May 03 2021, 10:34 pm
amother [ Emerald ] wrote:
Are the standard prescriptions published anywhere? I have a relative who is a doctor and would likely be able to help, although he is not a pediatrician and doesn't know too much about PANDAS.
He can join pandas physicians network https://www.pandasppn.org/
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moonfrau




 
 
 
 

Post Tue, May 04 2021, 12:08 am
It sounds like you're in a tough situation. Growing up with ocd and ADHD, it really helped to have someone to talk to. It takes time to find a therapist that's the right fit, but it can do wonders. Hugs
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amother




OP
 

Post Tue, May 04 2021, 2:47 am
moonfrau wrote:
It sounds like you're in a tough situation. Growing up with ocd and ADHD, it really helped to have someone to talk to. It takes time to find a therapist that's the right fit, but it can do wonders. Hugs


My son doesn't want to go anymore, he doesn't feel the need. The therapist thinks he's done there too. It was costing a fortune too so it's not the ongoing type of therapy. He came back buzzing from a few sessions saying that he's so nice and it's really helping him. Now we're bh not back to square 1 but his behaviour is crazy! Sad
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amother




Olive
 

Post Tue, May 04 2021, 3:36 am
Op, You say you are in England. The NHS does not recognize Pandas as being a condition so I don't know how easy it will be to see a paediatrician who will treat it.
Hatzlocho
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