New Member, son is making slow recovery from severe PANDAS

[Ellen]

Do you know there are any other sources of EPA besides fish?

 

Just a FYI on the omega's 3's......for PANDAS, Dr. Murphy (among others) has stressed the importance of EPA, so, it is recommended to give your child an omega 3 supplement with a higher percentage of EPA than DHA. (1000 mg had been recommended, or, as close as you can get to that))

 

Carlson's for Kids is good and is the only fish oil my kids could take.

[Ellen]

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him.

It sounds like you are on the right track with slowly weaning your son. Best of luck.

 

 

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

[michele]

I am right here with you. My sons OCD is intrusive thoughts also that we can't get him to move past. This is really hard to get help with.

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him.

It sounds like you are on the right track with slowly weaning your son. Best of luck.

 

 

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

[Eliza]

My 5.5 y.o. son has PANDAS and I am an Acupuncturist and nutritionist. The list of supps you have is good, but DHA is very critical to to cognitive function and repair. I recommend Pharmax's Berry high DHA fish oil emulsion which has prebiotics and blueberry in it. It is very pure- as is carlson- but much easier to get down for kids who can;t tolerate the fishy taste or the oilyness of the oil. The other supplement that I have found essential is Behavior Balance DMG by Davinci Labs- the PILLS -NOT LIQUID, this is a formula that has L-carnosine and Dimethyl Glycine which help, L carnosine is an amino acid that boost's immunity and brain function and reduce's inflammation, DMG is a precursor to many amino acids and neurotransmitters that aid in brain and nerve function.

GABA can help with Anxiety and insomnia- bu in high doses can exacerbate, so make sure you are dosing appropriately.

 

There are, in actuality MANY things you can try. My best advice is to find a good naturopath or DAN who is wiling to think outside the box nd attack the PANDAS rom all angles- the behavioral/neuro angle, the inflammation angle, and the immuno modulatory angle. You need to hit all of these factors to have a truly preventative scenario.

 

Also, Bach's Rescue Remedy for rages and episodes can be very helpful in the moment. They make a kids one with a base of glycerine.

 

Good luck, if you have any more questions feel free to ask. I don't want to overwhelm you!

[Ellen]

Thanks for your suggestions. My son has a possible fish allergy (I am not certain of this so I could have him tested), but if he tests allergic, do you know of any sources of DHA other than fish. Also, could acupuncture be helpful for kids and teenagers with PANDAS?

 

(quote name='Eliza' date='Jul 7 2009, 01:16 PM' post='34732']

My 5.5 y.o. son has PANDAS and I am an Acupuncturist and nutritionist. The list of supps you have is good, but DHA is very critical to to cognitive function and repair. I recommend Pharmax's Berry high DHA fish oil emulsion which has prebiotics and blueberry in it. It is very pure- as is carlson- but much easier to get down for kids who can;t tolerate the fishy taste or the oilyness of the oil. The other supplement that I have found essential is Behavior Balance DMG by Davinci Labs- the PILLS -NOT LIQUID, this is a formula that has L-carnosine and Dimethyl Glycine which help, L carnosine is an amino acid that boost's immunity and brain function and reduce's inflammation, DMG is a precursor to many amino acids and neurotransmitters that aid in brain and nerve function.

GABA can help with Anxiety and insomnia- bu in high doses can exacerbate, so make sure you are dosing appropriately.

 

There are, in actuality MANY things you can try. My best advice is to find a good naturopath or DAN who is wiling to think outside the box nd attack the PANDAS rom all angles- the behavioral/neuro angle, the inflammation angle, and the immuno modulatory angle. You need to hit all of these factors to have a truly preventative scenario.

 

Also, Bach's Rescue Remedy for rages and episodes can be very helpful in the moment. They make a kids one with a base of glycerine.

 

Good luck, if you have any more questions feel free to ask. I don't want to overwhelm you!

[thereishope]

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him.

It sounds like you are on the right track with slowly weaning your son. Best of luck.

 

 

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

 

 

Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it?

 

One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again.

[momtotaylor]

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him.

It sounds like you are on the right track with slowly weaning your son. Best of luck.

 

 

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

 

 

Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it?

 

One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again.

 

Vickie,

 

My daughter was having some of the same problems as your son. She would tell us that there was a bad guy in her head and she had to get him out. She would say that he would make her think about bad things and also tell her to say bad words. This started about 3-5 days after her initial episode. We also have had the repetitive questions with obvious answers.

 

We brought this (the guy in her head) up to her psychologist who gave us ideas on how to help her through this. Basically she needed to know that she was the "boss" of her body and not this thing in her head. First, the psychologist had us name the "bad guy". (Our daughter named him slimey.) Then, we drew a picture of him so that she would know that we believed her and also we were to understand that he was real. After that, each time slimey would tell her something, she would have to boss him back out loud. I would then pretend that I was slimey and melt or fade away, etc.

 

It was exhausting, but somehow it worked after about a week. She still brings it up every now and then, but clearly knows she can boss him back. I think she might internalize a lot of it now.

 

We do treat Taylor's resultant OCD as OCD and so far we have been able to manage. She is doing well and is currently not on any meds.

[Ellen]

Simon has many points in his day where he stares off into space and when that happens it is hard to get his attention. Sometimes if the OCD thoughts are very negative he will become distressed and whine or scream after the staring episodes. At other times he can shake it off and just go back to whatever he was doing before he got distracted by the OCD. He is often able to tell me what the OCD thought encompasses after he has the staring episodes. They usually center around some kind of negative experience or false perception of himself. For example, about two years ago, when his PANDAS became severe and his OCD started to become more thought-oriented rather than ritual-oriented, his primary obsession was the worry that he was not a nice person and offended people in the past or would do this in the future. It was not logical because most people who know him would describe him as very nice and polite. More recently that obsession is in the background, but one of his primary obsessions now is that he is stuck on the memory of a close friendship that ended after it went bad a few years ago. It was a distressing experience for him when it happened, but at the time he seemed to handle it well and move on to make new friends rather easily. He only got the experience stuck in his brain much later and after OCD entered into his life. Although there is much that is positive about him and his life, the OCD seems to get him stuck on whatever he can find that is negative. In the beginning my husband and I were not as familiar with how to respond to OCD so when he did articulate these kinds of thoughts we would try to reassure him and/or talk him out of his obsessions. Over time and through the help of his therapists, we have learned to refuse to engage in any conversation related to OCD topics. Trying to make him feel better only feeds the obsession. Also, sometimes we are able to get him distracted and convince him to do something constructive. There are other times when he is so stuck on the negative thoughts and so agitated that he will scream and have meltdowns. We have given him consequences whenever it has gotten bad enough that he starts to get destructive with things in our home. This has not happened in a long time, but when he was on SSRI medications awhile back, it happened quite frequently. But those actions were not rituals. They were outbursts related to the frustration of having so many negative thoughts stuck in his brain.

I have visited some forums on OCD and also done a lot of reading, and I am always open to new suggestions and willing to try whatever I think might work well for him. One strategy that I have seen is to encourage him to let the thoughts float by and say "oh well" to himself rather than try to get rid of them. My husband and I have tried telling him this, and sometimes he is open to hearing it and it does help. There are other times when he is too agitated to listen, so I guess it just depends on the particular day. I haven't found any suggestion that always works, but I continue to keep searching.

If you come across anything that helps with your son, please let me know and I will do the same.

 

 

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him.

It sounds like you are on the right track with slowly weaning your son. Best of luck.

 

 

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

 

 

Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it?

 

One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again.