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Really worried about 8 yr old son


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Ian is going into his 6th week with a low dose of prozac, 5mg. It does seem to have helped his mood quite a bit, he isn't as argumentative as he was. But I don't really think it is doing much else so far. the OCD is the same. He always has fears of many things, but it seems the intrusive thoughts are worse lately. He also has the urge to confess all the time, things he did, things he thought he may have done, and just every thought he thinks may be bad. lately he thinks things and feels the need to tell us. I guess that is good, not sure. He also sees a therapist and we see her on Thursday. He doesn't seem depressed, but he is insecure from all of this. This morning he told me the OCD was making him think about killing his friend's family, but then told me he knows he doesn't want to do that, but doesn't know why the OCD is telling him he wants to. He will also say the OCD makes him think thoughts about kissing, (he is so anti girl, and he seems truly disgusted by the idea of girlfriends, etc, but that seems pretty typical 8 year old boy), etc. I am going to talk to his therapist about this on Thursday again, but the thoughts are what really bothers me. To hear him say things like that really scares and worries me. Not so much that I think he could do anything, he is a the sweetest boy really, and a really good friend. The thoughts bother him something terrible too. I guess I worry more the confessing may require him to say something like that to his friend or in school, and someone will get the wrong impression or not realize he has OCD related to PANDAS. I need some reassurance and other's experiences in dealing with this. I don't know if we need to increase the Prozac, or what. We see the neurologist in 2 weeks for an update appointment. Please someone help me deal with the worry all of this causes me. can kids with these thoughts ever try to act on them? or decide the thought is a good one, etc? I don't know what to say to him about these thoughts. I try to say that thoughts are just thoughts, they are not harmful or dangerous and that they are not who he is, that we all have thoughts and to not fight them and just let them go. All that is really hard for an 8 year old to understand thought....And I am so very worried.... (we are going into out 7th IVIG with Dr. B and have had all the testing, we are still working on finding out the underlying reason for his PANDAS).

 

Thanks!!!

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Hi, I am really sorry this is happening and I know how you feel. My 8 year old son, (before HD IVIg) had many intrusive thoughts and even would write notes about death. He also wanted to confess and say sorry repeatedly. It is difficult for me to even write about it, but I wanted to let you know that you are not alone...

Has your child had th HD ivig? Or the LD?

The HD worked for us. He is about at 90 percent, but after illness he will still have flares, but we haven't seen the severe intrusive thoughts like before. (fingers crossed as he is sick now.)

I wish the best for you and your child! Sending prayers.

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Ian is going into his 6th week with a low dose of prozac, 5mg. It does seem to have helped his mood quite a bit, he isn't as argumentative as he was. But I don't really think it is doing much else so far. the OCD is the same. He always has fears of many things, but it seems the intrusive thoughts are worse lately. He also has the urge to confess all the time, things he did, things he thought he may have done, and just every thought he thinks may be bad. lately he thinks things and feels the need to tell us. I guess that is good, not sure. He also sees a therapist and we see her on Thursday. He doesn't seem depressed, but he is insecure from all of this. This morning he told me the OCD was making him think about killing his friend's family, but then told me he knows he doesn't want to do that, but doesn't know why the OCD is telling him he wants to. He will also say the OCD makes him think thoughts about kissing, (he is so anti girl, and he seems truly disgusted by the idea of girlfriends, etc, but that seems pretty typical 8 year old boy), etc. I am going to talk to his therapist about this on Thursday again, but the thoughts are what really bothers me. To hear him say things like that really scares and worries me. Not so much that I think he could do anything, he is a the sweetest boy really, and a really good friend. The thoughts bother him something terrible too. I guess I worry more the confessing may require him to say something like that to his friend or in school, and someone will get the wrong impression or not realize he has OCD related to PANDAS. I need some reassurance and other's experiences in dealing with this. I don't know if we need to increase the Prozac, or what. We see the neurologist in 2 weeks for an update appointment. Please someone help me deal with the worry all of this causes me. can kids with these thoughts ever try to act on them? or decide the thought is a good one, etc? I don't know what to say to him about these thoughts. I try to say that thoughts are just thoughts, they are not harmful or dangerous and that they are not who he is, that we all have thoughts and to not fight them and just let them go. All that is really hard for an 8 year old to understand thought....And I am so very worried.... (we are going into out 7th IVIG with Dr. B and have had all the testing, we are still working on finding out the underlying reason for his PANDAS).

 

Thanks!!!

 

 

Unfortunately, yes, kids can act on it, although it does sound like he's trying really hard not to. That being said, what other infections have you tested for? I would assume with Dr. B, you've probably tested for mycoP, but have you tested viruses, lyme, staph? Also, you may need a different abx...sounds like whatever he's taking isn't really cutting it.

 

You mentioned what the prozac is or isn't doing, but what about the IVIG. What changes (good and bad) have you notice with that? Also, I hope you realize that prozac in children can cause depression and suicidal ideations (I presume possibly homicidal, too...if they also can become suicidal?)

 

DS (now 16) confessed once to my DH that he felt like he was going to kill me, but he didn't want to (this was about 3 years before we knew he had PANDAS, and that it was OCD. Thank goodness there's so much more known now.

 

I'll keep him in my prayers that things improve.

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Yes, Ian is getting HD IVIG. Yes, we have tested for everything with Dr. B, even Lyme twice. I honestly feel like we are doing everything we can. I do know that SSRIs can cause certain things in kids, but we started him very low and are going very slow. Our Neurologist is great. He doesn't seem depressed what so ever. He has nights when he will cry over his OCD, and feel sad about it. But he had that before we was even on prozac. He doesn't mention anything even remotely suicidal and he actually has a very intense fear of death, that seems to be the basis for a lot of his fears. But again, we see the neuro in 3 weeks. I will be discussing all of this with him. He started prozac because we had no idea what else to do to help him. Therapy is great, but he wasn't able to really focus on it. Dr. B was perfectly fine with us trying this short term.

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My DD7 had intrusive thoughts. She initially responded to abx and over time, her immune markers for chronic infection went way down (C3d immune complexes went from 20s to 50s to 90s and then 8 mos of abx - zith+bactrim - brought it back to the 20s last time we tested). We were never sure what type of infection she had. But the intrusive thoughts, the negative thoughts about herself stayed.

 

ERP and CBT did help - and I strongly encourage you to stay with therapy - but make sure it's ERP and not just talk therapy. There should be exposures you're working on in the session and at home.

 

The other thing that helped was looking at the way her body metabolized (i.e. methlyated) certain nutrients. An SSRI slows down the speed at which the neuron sucks up seratonin between the synapses. The seratonin between the synapses is like grease between ball bearings. Suck it up too quickly and the ball bearings scrape against each other instead of gliding. Thoughts gets stuck when there's not enough grease. But - and this is my opinion - using an SSRI assumes that there's enough seratonin in the system but that it's being sucked up too quickly. What if there isn't enough seratonin in the system to begin with? You can slow down the re-uptake, but you could have an underlying deficiency instead of or in addition to the too-rapid re-uptake. Dopamine is also critical to some of these neurological conditions. An SSRI doesn't address that part of the equation.

 

I know my DD has an MTHFR mutation, so she doesn't process/metabolize/methylate folic acid into methylfolate, which is needed for the body to eventually make seratonin. So that's one strike against her. She's also a picky eater with poor nutrient intake. So she's not taking in the necessary ingredients. Strike two. She may have other genetic mutations that make her production of neurotransmitters less efficient. So maybe strike three.

 

On the hunch she had a seratonin and/or dopamine deficiency, I started giving her tryptophan (a seratonin precursor) and tyrosine (a dopamine precursor). This bypasses some of her diet and genetic hurdles and puts more seratonin and dopamine into the system. I think if it as giving her turkey in pill form because she won't eat it in its natural form. (rationalization, I know). The transformation has been amazing. She rarely has intrusive thoughts now and relies only on ERP and CBT skills to face any anxiety that crops up briefly.

 

I don't know how your therapist or neurologist would feel, but it might be worth discussing. Not necessarily in place of but maybe in addition to the prozac.

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My DS10 is homozygous for the C677T methylation mutation and after starting him on NAC and especially methylguard plus (both over the counter), we have seen the fears and intrusive thoughts go waaaaaaaay down.

 

I think methylation is the key for some of these kids. SOOOO thankful for this forum and the suggestions to test for the mutation -- a $50 test, covered by insurance. Since methylation has implications for other health issues, am doubly glad for the insight.

 

 

My DD7 had intrusive thoughts. She initially responded to abx and over time, her immune markers for chronic infection went way down (C3d immune complexes went from 20s to 50s to 90s and then 8 mos of abx - zith+bactrim - brought it back to the 20s last time we tested). We were never sure what type of infection she had. But the intrusive thoughts, the negative thoughts about herself stayed.

 

ERP and CBT did help - and I strongly encourage you to stay with therapy - but make sure it's ERP and not just talk therapy. There should be exposures you're working on in the session and at home.

 

The other thing that helped was looking at the way her body metabolized (i.e. methlyated) certain nutrients. An SSRI slows down the speed at which the neuron sucks up seratonin between the synapses. The seratonin between the synapses is like grease between ball bearings. Suck it up too quickly and the ball bearings scrape against each other instead of gliding. Thoughts gets stuck when there's not enough grease. But - and this is my opinion - using an SSRI assumes that there's enough seratonin in the system but that it's being sucked up too quickly. What if there isn't enough seratonin in the system to begin with? You can slow down the re-uptake, but you could have an underlying deficiency instead of or in addition to the too-rapid re-uptake. Dopamine is also critical to some of these neurological conditions. An SSRI doesn't address that part of the equation.

 

I know my DD has an MTHFR mutation, so she doesn't process/metabolize/methylate folic acid into methylfolate, which is needed for the body to eventually make seratonin. So that's one strike against her. She's also a picky eater with poor nutrient intake. So she's not taking in the necessary ingredients. Strike two. She may have other genetic mutations that make her production of neurotransmitters less efficient. So maybe strike three.

 

On the hunch she had a seratonin and/or dopamine deficiency, I started giving her tryptophan (a seratonin precursor) and tyrosine (a dopamine precursor). This bypasses some of her diet and genetic hurdles and puts more seratonin and dopamine into the system. I think if it as giving her turkey in pill form because she won't eat it in its natural form. (rationalization, I know). The transformation has been amazing. She rarely has intrusive thoughts now and relies only on ERP and CBT skills to face any anxiety that crops up briefly.

 

I don't know how your therapist or neurologist would feel, but it might be worth discussing. Not necessarily in place of but maybe in addition to the prozac.

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I happened to be reading Dr. T's FB page a few weeks ago. He says mauny SSRI's aren't good for PANDAS kids, especially at low doses. Not totally agreeing here, but just quoting him. What works for one kid, doesn't always work for the next. But us did suggest if you do try an SSRI, his best choice is Luvox. Maybe Dr. W would be willing to try a switch...

He said one of the worst choices is Zoloft and Prozac...

Check out his FB page to get his exact words.

Have you tested through IgeneX?

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That is interesting. Something to keep in mind for sure. we go for another IVIG in two weeks so I am going to take some more notes from these posts and discuss with dr. B. Yes, we have done Igenex testing. I will also ask the neuro about the other drug and see what he says.

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Does anyone have a link to Dr. T's facebook page? I can't seem to find it.

 

Hi, I read your post regarding your son and his intrusive thoughts/fears. I am not an expert by any means, but am a mental health counselor as well as having experience in dealing with OCD/ and severe intrusive thoughts as a child myself and now with my own son, 9. I remember having the scariest thoughts and the worst part about them was wondering if I was actually going to act on them because I 'thought' them. My psychologist at the time told me that I WOULD NOT act on them if I did not want to. The intrusive thoughts are usually about doing the things we most often DO NOT want to do. The disorder that some people might confuse this with is a type of schizophrena which are 'voices', not thoughts. There is a big difference in the disorders and their manifestations and brain makeup. Additionally, my son's therapist (psychologist) has told him the same thing (30 years later!) about his intrusive thoughts. They are just thoughts, or fears of doing what we most often DO NOT want to do. I know it is heart wrenching to know what our children our going through......but that is one thing I personally feel (and 2 professionals) you don't have to worry about. My prayers go out to you!

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OCD does not cause people/kids to act upon their thoughts. This was taking from the OC Foundation site, fourth paragraph:

 

http://www.ocfoundation.org/EO_Violent.aspx

"It is important for sufferers to understand that the thoughts are just thoughts, and do not cause anxiety, but rather the anxiety is caused by the views sufferers take of the thoughts. They need to overcome the idea that, "If I think it, it must be real." It should be noted that people who suffer from these thoughts have no history of violence, nor do they ever act out on their ideas or urges. Although OCD can project extreme and bizarre thoughts into people's minds, it is not the thoughts or the anxiety, as much as people's solutions to having the thoughts that represents the real heart of the problem."

 

It is very common for OCD/PANDAS kids to have these thoughts. In fact it is normal for ALL of us to have these thoughts. The difference with an OCD/PANDAS kid is the thought gets stuck which scares them. Please reassure your child that he will never hurt anyone.

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