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I wanted to update on my posts a few weeks ago about my son (8) possibly having PANDAS ([post=http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305]http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305[/post]) . I spoke with his pediatrician and he was at least open to the idea of PANDAS. He said that it is controversial, but that he does think a link exists between strep and tics/behavior in some children. He did a throat culture (non-rapid) on my son as well as blood work for ASO titers, thyroid, and a metabolic panel. All came back normal. His ASO titers were under 20. This was following treatment for strep a month before. I know that low ASO titers does not mean that it's not PANDAS, but between that and the negative culture, he didn't think PANDAS was responsible for any current behavior.

 

DS definitely does not have "classic" PANDAS. I never would have even thought about the possibility except for an incident in December when he developed a sudden, new, dramatic head/neck thrust tic after many months of being tic-free. It developed overnight and two days later he became extremely ill with strep throat. After amox the tics waned over the next few weeks or so. His original tics were eye squint/facial grimace/hand clench that developed gradually when he was six and now comes back every now and then in a milder form (mostly the eye "squint").

 

So, the upshot is that we won't pursue a PANDAS diagnosis at the moment, but I will watch carefully for changes in tics/behavior and will have him cultured if I notice changes.

 

The pediatrician said that from his perspective, the next step, if we wish to take it, would be a pediatric psychiatrist. To me this just equals medication and I'm not going to go there. What I do want to investigate further is supplements. I am a researcher/reader by nature, but I'm overwhelmed by the information about all the various supplements. Of course, I want to be absolutely sure of safety when I put something in my child's body, but at the same time I feel like he needs SOMETHING. He is chronically irritable, moody, angry, and argumentative. I feel like he just doesn't feel good and it makes me so sad for him. He is an incredibly picky eater and gets virtually no meat, vegetables, or fruits, so his diet HAS to be lacking. I feel like the extreme pickiness is also somehow tied in with the behavioral issues. He's almost phobic about new foods and it's a battle I can't win.

 

I'm interested to know what you guys give your children, what brands of supplements you trust and what doseage. I know that every child is different and I'm not going to just blindly start giving things. But, I feel like a need a starting point.. some advice and real-life examples so that I can figure out what will be best for him.

 

The ones I see that seem most beneficial (and please correct me if I'm wrong) seem to be:

 

Inositol

5-htp

Magnesium Taurate

B-complex

Omega 3 (I have been giving this for the past 2 years)

 

Should I start with one of those or a combination? The tics are at a minimum right now, though I do see some from time to time. Mostly it's the irritability and moodiness that I'd like to help, though I'm sure it's all tied together.

 

I am so grateful for any advice you can give...

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Hi, I am sorry for what your son is going through. My dd has pandas ocd, not tics. But I just wanted to ask, why the doctor does not think it is pandas? From your post, I am not sure that you should close the door on that. A negative culture (after being treated for strep) and normal titers, do not rule out pandas. It is a clinical diagnosis made by the connection with strep throat an flares of behavior/ocd/tic issues. My dd became an impossible eater during her pandas episode, and is slowly improving.

 

There are others on this forum that are much more knowledgeable, who will hopefully post. Just be aware, most doctors do not believe in pandas, or won't diagnose it anyway. It may not hurt to try a month of zithromax (pandas should respond), before going the route of the psychiatric meds.

 

Best wishes- this is all so confusing and frustrating...

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Hi, I am sorry for what your son is going through. My dd has pandas ocd, not tics. But I just wanted to ask, why the doctor does not think it is pandas? From your post, I am not sure that you should close the door on that. A negative culture (after being treated for strep) and normal titers, do not rule out pandas. It is a clinical diagnosis made by the connection with strep throat an flares of behavior/ocd/tic issues. My dd became an impossible eater during her pandas episode, and is slowly improving.

 

There are others on this forum that are much more knowledgeable, who will hopefully post. Just be aware, most doctors do not believe in pandas, or won't diagnose it anyway. It may not hurt to try a month of zithromax (pandas should respond), before going the route of the psychiatric meds.

 

Best wishes- this is all so confusing and frustrating...

 

I definitely haven't closed the door on possible PANDAS, but the ped is not really receptive to going any further with it based on the negative culture and low titers (though I know that those two things are not enough to discount it). I feel like PANDAS might be one piece of the puzzle, but he doesn't fit a lot of the typical PANDAS symptoms and severity. Although I generally like the practice, I think I am going to look for a ped that is more integrative. As soon as I casually mentioned the possibility of nutritional deficiencies, etc. he completely shut down (which I expected, frankly. I was thrilled that he was even willing to acknowledge the existence of PANDAS).

 

I'm definitely not considering psychiatric meds. That's part of the reason I think I need to switch doctors, as our current ped says that a psychiatrist would be the next step. I feel like there should be many steps in between a throat culture and a psychiatrist! Though, I should mention that I have had my son in therapy for the past 2 years, and though it has helped some with social/friendship issues, it hasn't done much with his overall mood, etc.

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Monarchcat,

 

Just wanted to comment on "he doesn't meet the "typical" PANDAS symptoms and severity."

 

Sudden, onset of tic/tics (OR sudden worsening), or of any other abnormal behavior (ocd, adhd, etc.) after strep is the absolute number one indicator of PANDAS....which your son demonstrated in December. Also, the severity is dramatically differentt in every child...some children have a "mild" PANDAS, while other have a more severe form of the disorder.

 

 

Also, the irritability and moddiness is present in almost every child with PANDAS.

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I wanted to update on my posts a few weeks ago about my son (8) possibly having PANDAS ([post=http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305]http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305[/post]) . I spoke with his pediatrician and he was at least open to the idea of PANDAS. He said that it is controversial, but that he does think a link exists between strep and tics/behavior in some children. He did a throat culture (non-rapid) on my son as well as blood work for ASO titers, thyroid, and a metabolic panel. All came back normal. His ASO titers were under 20. This was following treatment for strep a month before. I know that low ASO titers does not mean that it's not PANDAS, but between that and the negative culture, he didn't think PANDAS was responsible for any current behavior.

 

DS definitely does not have "classic" PANDAS. I never would have even thought about the possibility except for an incident in December when he developed a sudden, new, dramatic head/neck thrust tic after many months of being tic-free. It developed overnight and two days later he became extremely ill with strep throat. After amox the tics waned over the next few weeks or so. His original tics were eye squint/facial grimace/hand clench that developed gradually when he was six and now comes back every now and then in a milder form (mostly the eye "squint").

 

So, the upshot is that we won't pursue a PANDAS diagnosis at the moment, but I will watch carefully for changes in tics/behavior and will have him cultured if I notice changes.

 

The pediatrician said that from his perspective, the next step, if we wish to take it, would be a pediatric psychiatrist. To me this just equals medication and I'm not going to go there. What I do want to investigate further is supplements. I am a researcher/reader by nature, but I'm overwhelmed by the information about all the various supplements. Of course, I want to be absolutely sure of safety when I put something in my child's body, but at the same time I feel like he needs SOMETHING. He is chronically irritable, moody, angry, and argumentative. I feel like he just doesn't feel good and it makes me so sad for him. He is an incredibly picky eater and gets virtually no meat, vegetables, or fruits, so his diet HAS to be lacking. I feel like the extreme pickiness is also somehow tied in with the behavioral issues. He's almost phobic about new foods and it's a battle I can't win.

 

I'm interested to know what you guys give your children, what brands of supplements you trust and what doseage. I know that every child is different and I'm not going to just blindly start giving things. But, I feel like a need a starting point.. some advice and real-life examples so that I can figure out what will be best for him.

 

The ones I see that seem most beneficial (and please correct me if I'm wrong) seem to be:

 

Inositol

5-htp

Magnesium Taurate

B-complex

Omega 3 (I have been giving this for the past 2 years)

 

Should I start with one of those or a combination? The tics are at a minimum right now, though I do see some from time to time. Mostly it's the irritability and moodiness that I'd like to help, though I'm sure it's all tied together.

 

I am so grateful for any advice you can give...

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Monarchcat

 

I don't believe that my dd6 has "typical" PANDAS symptoms. Her last known strep infection was 11/07. Shortly after that she developed mild separation anxiety and mood changes. i took her to the dr in January with these symptoms and luckily she had a UTI so she was given abx. During the course of the year, I repeatedly brought her back to the dr for behavior/mood changes> Quick urine dips always showed some minor bacteria but the cultures would come back negative. Due to the quick dips she was always given an abx and I would notice an immediate improvement in her mood. So I started to see a pattern that if her behavior changed once she started on abx she always would improve for two to three months. In January of this year there was a drastic change in her behavior & symptoms. SEVERE separation anxiety, anxiety, clingy. emotional lability, raging, depression, fatigue, constant complaints of weird feeling in her throat, tummy aches etc. She was again given abx (Septra) but after the 10 day course, all of her symptoms came back. We did blood work and her ASO titers were elevated. She never tested positive for strep this year but I know for a fact that one of her classmates had strep the week before xmas break--her symptoms became full blown a few weeks after this. So, 18 months after her last known strep infection we are at a dx of PANDAS. Looking back, I now believe that she probably had a mild form of PANDAS starting after her strep infection in 11/07. All of the symptoms were there but mild. She also stopped riding her bike and scooter last summer because she complained that it hurt her legs. she still has chronic pain in her knees and legs. Now that we know about PANDAS and what the symptoms are -- we believe all of the pieces were there we just didn't know how to connect them. She is about 75% back to normal after being on prophalytic abx for a month.

 

I wanted to share this with you because my husband and I were ready to pursue the mental health issues with a psych. but we believed in our hearts that something else was going on. Behavioral issues were are biggest clue that something was going on. Find another doctor, email Dr. K in chicago with your son's history, get a hold of Diana P. Find someone who will give you another round of abx (we've had good luck with azith) and give him a daily dose of ibuprofen. For your son's sake--don't throw in the towel yet on PANDAS.

 

Sam

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Hi,

 

I am in agreement with the others that say your son does sound very pandas-sy...the defiance, mood issues, food issues, tics, other abnormal behavior all sound like PANDAS. My dd was hugely defiant and was incredibly irritible/moody when her PANDAS was in full-force a year ago. In fact, the first thing we noticed (after our first 5 days of Azith), before the OCD/eating improved, was that she was yelling at us less.

 

Anyway, I whole heartedly agree with the plan of a 1mo. trial of Azith. (how much does he weigh?) and Advil (Ibuprofin/motrin)...

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We got to the point that one month of full strength antibiotics seemed like a very benign treatment--given the awful things our daughter was experiencing...IF it were to work it is definitely worth a trial -- my opinion as well.

 

One of the things a doctor said along the way to us with the first steroid burst about a year ago, was that he encouraged us to try something, as she was in cognitive pain. I think we overlooked this fact out of fear as to what possible side effects may show up...We wasted alot of time in fear of treatment, and as a result it has taken months for her academic skills, personality, etc. to come back to normal...I still worry about longterm effects from what I can only see as brain inflammation.

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We happen to have a very open minded pediatrician who is a believer in supplements and "alternative" therapy. My daughter (5) just had some blood tests and stool samples taken and she came back with low levels of vitamin-D, yeast in stools, and an unbalanced level of her metallics. She prescribed- probiotics (1 capsule 2 X per day, Pharmax brand), multivitamin(Kirkman), Omega-3 (1 tsp Omega-cure), Zinc (1 tsp Kirkman), and liquid d-3 (1 single drop). I put the brand names in because I had been giving my daughter OTC multivit, Omega-3, and probiotics for over a year and after reviewing the brands with my ped., we found that they were full of preservatives, artificial colorings and other ingrediants that can exacerbate PANDAS symptoms. We have to be very careful with the Zinc and vit-d-she will have bloodwork every few months to make sure she isn't getting too much. My Peds found independant labs for the stool test and allergy tests and we paid out of pocket for those but I will bill the insurance when we get a statement to try to get some money back. Has your son's metallics levels and vit-D and histamine levels been checked? Luckily, my daughter is still very mild but we are trying to get her immune system very strong and her body chemistry balanced. We are awaiting test results to see if she has gluten intolerance (which can activate the inflammatory response), so we may be changing her diet soon. I probably wouldn't supplement too much without having some labs drawn, but her Dr. said multivit, Omega-3, and probiotics are supplements that everyone should take daily(she also rec we take more vit-D but warned we needed to be careful due to toxity concerns). hope this helps

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I wanted to update on my posts a few weeks ago about my son (8) possibly having PANDAS ([post=http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305]http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305[/post]) . I spoke with his pediatrician and he was at least open to the idea of PANDAS. He said that it is controversial, but that he does think a link exists between strep and tics/behavior in some children. He did a throat culture (non-rapid) on my son as well as blood work for ASO titers, thyroid, and a metabolic panel. All came back normal. His ASO titers were under 20. This was following treatment for strep a month before. I know that low ASO titers does not mean that it's not PANDAS, but between that and the negative culture, he didn't think PANDAS was responsible for any current behavior.

 

DS definitely does not have "classic" PANDAS. I never would have even thought about the possibility except for an incident in December when he developed a sudden, new, dramatic head/neck thrust tic after many months of being tic-free. It developed overnight and two days later he became extremely ill with strep throat. After amox the tics waned over the next few weeks or so. His original tics were eye squint/facial grimace/hand clench that developed gradually when he was six and now comes back every now and then in a milder form (mostly the eye "squint").

 

So, the upshot is that we won't pursue a PANDAS diagnosis at the moment, but I will watch carefully for changes in tics/behavior and will have him cultured if I notice changes.

 

The pediatrician said that from his perspective, the next step, if we wish to take it, would be a pediatric psychiatrist. To me this just equals medication and I'm not going to go there. What I do want to investigate further is supplements. I am a researcher/reader by nature, but I'm overwhelmed by the information about all the various supplements. Of course, I want to be absolutely sure of safety when I put something in my child's body, but at the same time I feel like he needs SOMETHING. He is chronically irritable, moody, angry, and argumentative. I feel like he just doesn't feel good and it makes me so sad for him. He is an incredibly picky eater and gets virtually no meat, vegetables, or fruits, so his diet HAS to be lacking. I feel like the extreme pickiness is also somehow tied in with the behavioral issues. He's almost phobic about new foods and it's a battle I can't win.

 

I'm interested to know what you guys give your children, what brands of supplements you trust and what doseage. I know that every child is different and I'm not going to just blindly start giving things. But, I feel like a need a starting point.. some advice and real-life examples so that I can figure out what will be best for him.

 

The ones I see that seem most beneficial (and please correct me if I'm wrong) seem to be:

 

Inositol

5-htp

Magnesium Taurate

B-complex

Omega 3 (I have been giving this for the past 2 years)

 

Should I start with one of those or a combination? The tics are at a minimum right now, though I do see some from time to time. Mostly it's the irritability and moodiness that I'd like to help, though I'm sure it's all tied together.

 

I am so grateful for any advice you can give...

 

 

Hi,

About the supps - 5-htp can cause nightmares, inositol doesn't always work, B-complex is always good for calming nerves, Omega 3 is definitely effective for inflammation, taurine is actually good for decreasing brain activity (as in repetetive or intrusive thoughts). Zinc is good as immune support. S. Boulardii is a good probiotic when yeast overgrowth or bacterial overgrowth has been proven, but is not necessary to continue after about 2-3 months. Kefir is good at establishing colonies of beneficial bacteria that would help keep gut in balance. Also there is a supp called A&I from New Beginnings that has N-acetylcholine, along with a couple of other things that is supposed to be very effective for brain inflammation. Pat

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Has your son's metallics levels and vit-D and histamine levels been checked?

 

No, only labs so far were throat culture, thyroid and basic metabolic panel.

 

I am in the process of switching drs. I am moving my whole family to a doctor at a family practice in town that comes highly recommended. My current ped's office is just such a factory, and my son's ped seems reluctant to go any further. I am hoping this new doctor will be more open minded and willing to do some testing. If not, I will have to figure out how to do/pay for the testing on our own.

 

My son came home tonight and while telling us a story about an argument he and a friend had, my husband and I both noticed that he has a brand new tic... a shoulder shrug (both shoulders, but not completely symmetrical). I also noticed after that that he would continuously cross one leg over the other when standing. And he's been twirling his hair for the past few days. Another completely new tic. But, at the same time, he was in good spirits, despite having fought with his friend and was happy and loving with us (though this morning he was VERY argumentative and irritable).

 

Thank you all so much for your replies.... I really appreciate the responses and the advice.

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