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OCD & PITANDAS?


OCDmom

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I am new to this site, OCD and everything this entails. I could use some advice from those who have been there. History -- my 10 year old daughter began having anxiety induced headaches since first grade (waking her up at night). She always has jiggled her feet up and down upon sitting since she was old enough to sit in a high chair. Almost a year ago to the day, we notice a tic develop - uneven eye blinking, rolling her eyes. After consulting her neurologist, he sent her to a child psychologist to address her anxiety. That went well from January to July. At the end of July, she contracted Fifths Disease. Within 2-3 weeks, she became obsessive over germs, and developed hand washing rituals. Again, we addressed these in therapy. Her eye blinking stopped. Then about 4 weeks ago, she developed thoughts about Satan and began praying continually. Now, she has begun low muttering sounds. We are off to the medical doctor today to be tested for PITANDAS. She had step in first grade.... Anyone know of a correlation that takes that long? Or if Fifths and be a part of PITANDAS? This is the most helpless I've felt as a parent since she was born prematurely. Thanks for any advice you can give.

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Dear OCD Mom:

 

Welcome to the forum. I am so sorry your daughter is going through such a difficult time. I have to tell you that, in regard to the OCD portion, you just described me as a child. My main issues, as a child, were germs, Satan, and checking and rechecking things. I have to just tell you there is hope for your daughter. Have you read Chemar's posts in regard to how she helped her son with OCD and Tourettes. Chemar has amazing information to give out. This is one of her posts and it greatly helped me http://www.latitudes.org/forums/index.php?showtopic=687

 

One thing I would suggest is to post your question on the Tourettes portion of this forum. The Tourettes section seems to be read more frequently and also gets more responses then the OCD portion of the forum. Since you are dealing with "tics" with your daughter it would be completely appropriate to post there and I do believe you will see more responses.

 

I want to share with you that my son, Daniel who is 7, has tics. He has had them since he was 3. What we found out with him is it was a combination of a magnesium deficiency and exposure to artificial foods. If he has any MSG he will start having tics. Also yellow dyes (5 and 6), Red Dye 40, High Fructose Corn Syrup, and I just recently discovered caramel color all cause him problems. I am just soooooooo thankful for this forum because I do believe my son's life has been changed because of it. I literally have spent hours and hours researching to understand what is going on within my son's nervous system. Here is a post I did recently regarding all the things I discovered about MSG and my son Daniel http://www.latitudes.org/forums/index.php?showtopic=2598 For some people it can also be allergies to dairy, corn, wheat or environmental allergies. It is such an individual thing but it seems all people with tics will have issues with the artificial foods that I mentioned.

 

I would recommend Shelia Rogers book "Tic's and Tourettes". It was very encouraging to me and had just great information in it.

 

We also have my son on Bonnie Grimaldi's Vitamins. They have been EXTREMELY helpful. They are expensive but I can tell you they have really made a big differance for him along with the food changes. Here is a link to her information http://www.bonniegr.com/ . I really think it is the magnesium taurine in the product that has been the biggest help for Daniel. I know that some people, not many, can actually get increased tics from the product because of a reaction to one of the B vitamins in it (I always forget which one). My son Daniel has had no problem what so ever with the product. Also you can e-mail Bonnie and she is very good at responding back regarding any concerns you might have. Her e-mail is on the web-site.

 

Also, my son Daniel takes fish oil (Omega 3's) some people have to take Flaxseed Oil because of allergy to the fish. The Omega 3's really help with brain function. He is also on GABA (for anxiety), Inosital (for anxiety), vitamin C, and the amino acid glycine (this is to help lower his dopamine levels). All I can tell you is it works. The differance in him with all the supplements and the food changes have made a BIG difference with his tics. I can also tell you that when he has the artifical stuff in him (like around Halloween time with the candy) his anxiety went way up.

 

One thing I encourage you is don't give up. I felt very discouraged at times, in my search for answers, and it was this past summer when all of it came together for me in my understanding for my son. I truly believe it was an answer to prayer.

 

In regard to your daughters concerns over Satan I can so greatly relate. I really suffered with this fear as a child and even into adulthood. But I will tell you what made the biggest differance was when I truly began to understand how all powerful and loving God is. I started to understand that Satan is a creation of God's. God has all the power over him. I started reading the Bible and talking to Pastors and understanding that Christ took a way our sin and we are forgiven people when we accept Christ as our Savior and Lord. When you really undertand in your heart God's power it will take away any fear of Satan. Like I said I dealt with this for years and I am now at peace in understanding Satan's role verses God's ever loving and most powerful role in our lives. Ultimately, the Bible states in the book of Revelation Chapter 20 verse 10 that Satan will be thrown into a lake of burning sulfur and will be tormented day and night for ever and ever. That one verse just shows how much power God has over him. The long and short of it is if your daughter can see and understand Gods amazing love for her and how powerful He is I think it would help her tremendously with this fear.

 

Also I know a lot of people seem to have been greatly helped with cognitive behavioral therapy. I know Chemar has stated this really was helpful for her son. I have set up an appointment for my son Daniel with a Christian cognitive behavioral therapist for December. Daniel has started doing this thing where he is really concerned about a person getting lost. It has turned into an obsession and I really want to help him get control over it.

 

Another thing to consider is candida for your daughter. Has she been on a lot of anti-biotics? Candida can be take over real quick when a person is on anti-biotics. Candida can cause all kinds of problems including increased tics and OCD behavior. There have been a number of posts about candida on this forum. You could do a search to get more information.

 

Does your daughter grind her teeth at night? The reason I ask is this can be a sign of magnesium deficiency. My son Daniel would grind his teeth horrible until we started him on Bonnie Grimaldi's supplements. After about a month of being on them his grinding of his teeth was down by at least 95%.

 

Also migrane type headaches can be caused from magnesium deficiency and/or exposure to MSG products. I know you said your daughter is suffering from headaches so is it possible it is actually a deficiency in her body or an exposure to a food/allergy?

 

Well I will be praying for your daughter. I know what a struggle it must be for you right now. I can only tell you my experience with OCD led me to understand so many things I would never have discovered if I didn't go through it. I am thankful because I see God so much greater now. Also my OCD, as an adult, helped drive me into finding answers out for my son. I became obsessed, for lack of a better word, in finding out answers for him. If I did not have this part of me to drive me into finding out answers, he would be in a much differant situation.

 

So hold in there and take comfort in knowing other's, like myself, have made it through and so will your daughter. You are doing the right thing by seeking help for her.

 

Carolyn N.

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Dear OCD Mom:

 

Welcome to the forum. I am so sorry your daughter is going through such a difficult time. I have to tell you that, in regard to the OCD portion, you just described me as a child. My main issues, as a child, were germs, Satan, and checking and rechecking things. I have to just tell you there is hope for your daughter. Have you read Chemar's posts in regard to how she helped her son with OCD and Tourettes. Chemar has amazing information to give out. This is one of her posts and it greatly helped me http://www.latitudes.org/forums/index.php?showtopic=687

 

One thing I would suggest is to post your question on the Tourettes portion of this forum. The Tourettes section seems to be read more frequently and also gets more responses then the OCD portion of the forum. Since you are dealing with "tics" with your daughter it would be completely appropriate to post there and I do believe you will see more responses.

 

I want to share with you that my son, Daniel who is 7, has tics. He has had them since he was 3. What we found out with him is it was a combination of a magnesium deficiency and exposure to artificial foods. If he has any MSG he will start having tics. Also yellow dyes (5 and 6), Red Dye 40, High Fructose Corn Syrup, and I just recently discovered caramel color all cause him problems. I am just soooooooo thankful for this forum because I do believe my son's life has been changed because of it. I literally have spent hours and hours researching to understand what is going on within my son's nervous system. Here is a post I did recently regarding all the things I discovered about MSG and my son Daniel http://www.latitudes.org/forums/index.php?showtopic=2598 For some people it can also be allergies to dairy, corn, wheat or environmental allergies. It is such an individual thing but it seems all people with tics will have issues with the artificial foods that I mentioned.

 

I would recommend Shelia Rogers book "Tic's and Tourettes". It was very encouraging to me and had just great information in it.

 

We also have my son on Bonnie Grimaldi's Vitamins. They have been EXTREMELY helpful. They are expensive but I can tell you they have really made a big differance for him along with the food changes. Here is a link to her information http://www.bonniegr.com/ . I really think it is the magnesium taurine in the product that has been the biggest help for Daniel. I know that some people, not many, can actually get increased tics from the product because of a reaction to one of the B vitamins in it (I always forget which one). My son Daniel has had no problem what so ever with the product. Also you can e-mail Bonnie and she is very good at responding back regarding any concerns you might have. Her e-mail is on the web-site.

 

Also, my son Daniel takes fish oil (Omega 3's) some people have to take Flaxseed Oil because of allergy to the fish. The Omega 3's really help with brain function. He is also on GABA (for anxiety), Inosital (for anxiety), vitamin C, and the amino acid glycine (this is to help lower his dopamine levels). All I can tell you is it works. The differance in him with all the supplements and the food changes have made a BIG difference with his tics. I can also tell you that when he has the artifical stuff in him (like around Halloween time with the candy) his anxiety went way up.

 

One thing I encourage you is don't give up. I felt very discouraged at times, in my search for answers, and it was this past summer when all of it came together for me in my understanding for my son. I truly believe it was an answer to prayer.

 

In regard to your daughters concerns over Satan I can so greatly relate. I really suffered with this fear as a child and even into adulthood. But I will tell you what made the biggest differance was when I truly began to understand how all powerful and loving God is. I started to understand that Satan is a creation of God's. God has all the power over him. I started reading the Bible and talking to Pastors and understanding that Christ took a way our sin and we are forgiven people when we accept Christ as our Savior and Lord. When you really undertand in your heart God's power it will take away any fear of Satan. Like I said I dealt with this for years and I am now at peace in understanding Satan's role verses God's ever loving and most powerful role in our lives. Ultimately, the Bible states in the book of Revelation Chapter 20 verse 10 that Satan will be thrown into a lake of burning sulfur and will be tormented day and night for ever and ever. That one verse just shows how much power God has over him. The long and short of it is if your daughter can see and understand Gods amazing love for her and how powerful He is I think it would help her tremendously with this fear.

 

Also I know a lot of people seem to have been greatly helped with cognitive behavioral therapy. I know Chemar has stated this really was helpful for her son. I have set up an appointment for my son Daniel with a Christian cognitive behavioral therapist for December. Daniel has started doing this thing where he is really concerned about a person getting lost. It has turned into an obsession and I really want to help him get control over it.

 

Another thing to consider is candida for your daughter. Has she been on a lot of anti-biotics? Candida can be take over real quick when a person is on anti-biotics. Candida can cause all kinds of problems including increased tics and OCD behavior. There have been a number of posts about candida on this forum. You could do a search to get more information.

 

Does your daughter grind her teeth at night? The reason I ask is this can be a sign of magnesium deficiency. My son Daniel would grind his teeth horrible until we started him on Bonnie Grimaldi's supplements. After about a month of being on them his grinding of his teeth was down by at least 95%.

 

Also migrane type headaches can be caused from magnesium deficiency and/or exposure to MSG products. I know you said your daughter is suffering from headaches so is it possible it is actually a deficiency in her body or an exposure to a food/allergy?

 

Well I will be praying for your daughter. I know what a struggle it must be for you right now. I can only tell you my experience with OCD led me to understand so many things I would never have discovered if I didn't go through it. I am thankful because I see God so much greater now. Also my OCD, as an adult, helped drive me into finding answers out for my son. I became obsessed, for lack of a better word, in finding out answers for him. If I did not have this part of me to drive me into finding out answers, he would be in a much differant situation.

 

So hold in there and take comfort in knowing other's, like myself, have made it through and so will your daughter. You are doing the right thing by seeking help for her.

 

Carolyn N.

 

 

 

Thanks for your encouragement, Carolyn. I am a bit overwhelmed with all that I am reading in regards to diet. I have my first appointment with a pediatric psychiatrist today (just me w/o my daughter). I'll ask about all this and get her view. What is your take on the PANDA and PITANDS? The blood test was horrific. She has given blood before without issue - this time it took 3 of us to hold her down.... ugh.... I'll find out today the results.

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I really do not know a whole lot about PANDAs and PITANDS. I know there have been a lot of people on this forum that have dealt with this aspect. The problem you are going to run into is the medical community, and I am guessing your doctor too, will be very unfamiliar with this. Unfortunately the medical community, in general, has very little understanding of the real source behind what is going on with someone with tics and OCD. The thought of strep being a possible cause, for some people, and dietary changes being able to manage something like this is just not a reality in the general world of medicine. This is why you really need to get a good naturopathic doctor that can help you sort through all this. I have two naturopathic doctor in the Phoenix area. They have been great at helping me figure out parts of this puzzle. I know you will see a lot of posts regarding a Dr. Murphy (I think this is how you spell the last name) on this forum. Dr. Murphy is in Florida and is very familiar with PANDA's. So you might want to read some of the posts from people who have gone to this doctor. I know I have read them on this forum, under the tourettes section, and they have been very interesting.

 

I know a lot of people on this forum go to doctors called DAN doctors (you can research DAN doctors on the internet). They are doctors that specialize in helping autistic children out with natural means. So these doctors are familiar with how diet can effect the nervous system. Some insurance companies might cover some of the DAN doctors whereas going to a standard naturopathic doctor might not be covered. I know our medical expenses for Daniel have been quite high with the visits and the supplements. However, it has all been worth while.

 

I would also encourage you to read and read about the side effects on this forum with standard medicines doctors will typically provide to control tics and OCD. You will find some very interesting stories. I know Chemars son was on the standard medicines and he had some major problems from them. She has since switched his diet and changed added the supplements and he is doing terrific in regard to the OCD and tics.

 

I really do believe that the people on this forum have very valuable information they can share with you. I think if you spend some time going through some of the old posts you will start seeing some amazing ways you can help your daughter.

 

I do understand that the diet changes seem overwhelming. Obviously, in America, our diet revolves around the artificle stuff. It took me probably a solid 5 or more months of reading labels and swithcing out products to get a good hold on what Daniel can and cannot eat. I do not say this to discourage you I tell you this to say don't put the pressure on yourself to think you can come up with all the answer right away. It takes time. But the end results will be worth while and you will have learned so much about how the body function and how our diet and supplements play such a major role.

 

I also wanted to quickly tell you that, in regard to the magnesium issue, there are better sources of magnesium then others. You want to avoid magnesiums that end in "ide". The ones that end in "ate" are more absorbable into our bodies I personally am partial to magnesium taurate. I have seen better results from it over magnesium citrate for my son. It is what is in Bonnie Grimaldi's products. Also magnesium, in any form, needs to be in the correct balance with calcium and zinc. This again is one reason I like Bonnie's product because it is all balanced correctly. The B vitamins are very crucial too in helping out with tics and OCD which again are in her product.

 

I also wanted to suggest posting on the tourettes forum asking for a suggestion of a doctor in your area. Perhaps someone who is on this forum can tell you a doctor in that area that has helped them naturally.

 

I hope your appointment goes well and I hope you find answers soon. I know it is heartbreaking for you to go through this with her.

 

Carolyn

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As I posted on the PANDA section, my daughter's pediatrician called today. The specific step test she ran on her blood came back very high for strep (anti dnase-b antibody). So my daughter's recent flare of OCD is due to PANDA. I am somewhat relieved to have a specific answer. The psychiatrist we went to last week was going to perscribe Prozac to us on Thursday - this may stop that. I am not sure of what happens next, but am glad to have a medical answer.....

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I am so glad you are getting answers for your daughter. I am sure it must be a relief, to a point, to have a direction to run with this.

 

I wanted to just share something I posted a while back. You will have to scroll down to read my post. But it is a way I got rid of strep in my own children. Just thought it might be useful for you http://www.latitudes.org/forums/index.php?showtopic=2714 . I honestly have no idea how this would work for PANDA's but if you are going to a naturopathic doctor perhaps they could tell you.

 

Carolyn

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  • 9 months later...

Did you find out any information as to whether this could be linked to Fifth's Disease? Our daughter had Fifth's Disease in May and our problems with what we characterize as OCD/Pandas began in June. We got her on antibiotics and all the symptoms went away. We are now in what we believe is our 2nd episode - started on about 9/1 or so (she had a Hep A booster shot on 8/28). We don't know if the start of the symptoms is a coincidence to the Hep shot or if she got sick from our neighbor's son. At any rate, your post is the first that I've read anything about Fifth's Disease. Did you get any info. on that? How is your child fairing now?

 

I am new to this site, OCD and everything this entails. I could use some advice from those who have been there. History -- my 10 year old daughter began having anxiety induced headaches since first grade (waking her up at night). She always has jiggled her feet up and down upon sitting since she was old enough to sit in a high chair. Almost a year ago to the day, we notice a tic develop - uneven eye blinking, rolling her eyes. After consulting her neurologist, he sent her to a child psychologist to address her anxiety. That went well from January to July. At the end of July, she contracted Fifths Disease. Within 2-3 weeks, she became obsessive over germs, and developed hand washing rituals. Again, we addressed these in therapy. Her eye blinking stopped. Then about 4 weeks ago, she developed thoughts about Satan and began praying continually. Now, she has begun low muttering sounds. We are off to the medical doctor today to be tested for PITANDAS. She had step in first grade.... Anyone know of a correlation that takes that long? Or if Fifths and be a part of PITANDAS? This is the most helpless I've felt as a parent since she was born prematurely. Thanks for any advice you can give.
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  • 3 weeks later...

Dear hopeful in SC,

 

I would like to help you out. Myself and a number of parents have battled and won over PANDAS.

Four of us have 7/8 yr olds that got PANDAS Fall 07 and live in California. I would email you but can't figure out how to get you!

 

Briefly, you must get antibiotics - preferably Azithromycin daily 250mg per day. Keflex or Augmentin work well too I'm told by the m.d.'s I've dealt with. Getting someone to prescribe it for a lengthy period of time will be tough -but I can help you with that.

 

Please contact me at pohlmandiana@yahoo.com Hope to hear from you. diana

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Did you find out any information as to whether this could be linked to Fifth's Disease? Our daughter had Fifth's Disease in May and our problems with what we characterize as OCD/Pandas began in June. We got her on antibiotics and all the symptoms went away. We are now in what we believe is our 2nd episode - started on about 9/1 or so (she had a Hep A booster shot on 8/28). We don't know if the start of the symptoms is a coincidence to the Hep shot or if she got sick from our neighbor's son. At any rate, your post is the first that I've read anything about Fifth's Disease. Did you get any info. on that? How is your child fairing now?

 

I am new to this site, OCD and everything this entails. I could use some advice from those who have been there. History -- my 10 year old daughter began having anxiety induced headaches since first grade (waking her up at night). She always has jiggled her feet up and down upon sitting since she was old enough to sit in a high chair. Almost a year ago to the day, we notice a tic develop - uneven eye blinking, rolling her eyes. After consulting her neurologist, he sent her to a child psychologist to address her anxiety. That went well from January to July. At the end of July, she contracted Fifths Disease. Within 2-3 weeks, she became obsessive over germs, and developed hand washing rituals. Again, we addressed these in therapy. Her eye blinking stopped. Then about 4 weeks ago, she developed thoughts about Satan and began praying continually. Now, she has begun low muttering sounds. We are off to the medical doctor today to be tested for PITANDAS. She had step in first grade.... Anyone know of a correlation that takes that long? Or if Fifths and be a part of PITANDAS? This is the most helpless I've felt as a parent since she was born prematurely. Thanks for any advice you can give.

Dear hopefulinsc,

My 9 year old dd had what I believe to be her 3rd PANDAS/PITAND episode after contracting Fifth's Disease. I completely relate to your helpless feeling - it is beyond description what we feel when our child is overtaken by this horrible disease. I emailed Dr. K in Chicago to ask him if he had seen any PANDAS reactions to Fifth's disease, and his response was brief and ominous "ANY infectious agent can cause this reaction" once PANDAS is triggered. Please contact Diana who responded to your post. I'm am currently benefitting from her help and am very grateful. She is extremely well informed and well connected. God bless, and good luck to you.

Peggy

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