Darla

I am curious about this DHEA. Has anyone in these panels used it? I've searched a little but can't seem to get much info here. I am wondering what experiences people have had with it. I am suprised to not see more blogs about it here. I try to get to the bottom line with all of these symptoms. Where does it all start? If its anxiety than go to the root of it, right? I know it's not a straight road by any means; how nice would that be?! But too much coritisol and not enough DHEA or should a say an imbalance of the two, can set off a chain of problems in regards to anxiety, tics and ocd. So the natural thing to think of next is DHEA. I would love to hear thoughts on this, it's seems that there is more caution using this suppliment than others, I would love to know everyone's take and experience. Whats funny is in a converstation I had over a month ago with my sons' pedi, he said he always thought ocd came before anxiety. I'm not sure about that? I kind felt it was the other way around. You have the physical feeling of anxiety and as a result other senses are hightened and can cause ocd, and tics, behavior issues... etc. Anyways, I am really wanting hoping some people here have tried DHEA and what happened after taking it. -darla

I definately believe there are some sensory issues going on here with my son. I am in the begining stages of researching this topic, but maybe some of you guys could share some of your thoughts or experiences with your children with regards to this topic. Sensory Integration Dysfunction : SID is not necessarily related to autism or autism spectrum disorders (ASD). SID is its own diagnosis, but it can also be linked to other neurological conditions, including ASDs, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. My son was a colicky baby arched his back hard to comfort. Did not like tags in his clothes as a toddler. He's a very intelligent 7 yr old. (too smart for me! ) I know that every night at five o'clock he has a "witching hour". Hyper active is an understatement, hes off the wall. It's literally lasts for about a half an hour then hes fine. I looked a little bit into it so far, and it seems like he has some behaviors that resemble someone who has a hard time processing his daily events and stresses. Hes a very moody little guy, easily irritated. Low tolerance for pain, hot, cold, doesn't like to go on swings or rides. He is not ADHD or any of that. He can focus on things no problem. He just seems to fit some of these things.. any thoughts/experience on this?? All his neurological issues seem to always somehow be connected. which comes first? If hes got PANDAS and as a result has ocd, anxiety, tics, rages etc...and I do know that hes been a sensitive being since birth in regards to the sensory issues... I don't know it's all just so puzzling.

Greeneyes, let me know what he says if you dont' mind. I hear it's pretty heavy duty stuff.

Faith, I understand exactly what your saying. Even if your son does have PANDAS it almost seems at the very low end. I mean if your seeing a change with viruses aggrivating the situation. I was suprised to see that his tics waned when he was sick. It makes sense that if you didn't see improvement than why continue especially with the side effects. It's not something you just say okay lets do it! We have a lot of yelling here to at times. He makes us really work at this job of parenting. People ask why such an age gap with your two children? I want to say because my son is equal to four! LOL I am hoping to get a little further with some testing to see if he has any deficiencies or toxins. I don't know, i would like to figure out what his dopamine and seritonin levels are. NOt sure how to go about finding that out. He's got a developmental pedi appt in the near future. I think it will be the begining of february. I have to fill out a ton of paper work as well as have his teacher fill some out. If I can learn more affective parenting and do some behavorial therapy for his oppositional personality and explosive temper, along with suppliments- oh and keep him from getting sick. LOL seriously though, I just don't know if hes got PANDAS. Maybe I'll give another round of anitbitocs for a couple of weeks to see if I notice an improvement. He always seems to have horrible episodes of behavior and then hes an angel at times too. ughh Thanks again!! Definately helpful.

Hi Faith, So I read your previous post. I am suprised to here you say it's not PANDAS. I mean, maybe I'm not suprised, but confused. Have you gotten a different diagnosis? Or tried prophlactic antibiotics? I'm thinking probably not since you say it's not PANDAS. It does sound simlar to my son in some ways. I'm still searching... My son is actually driving me nuts at the moment. His witching hour is about five o'clock every night. He gets hyperactive for a brief period of time. Then it just goes away. I've noticed lately that it's literally around the same time every night , and then hes fine. It's this burst of energy. He goes nuts. ohh and yes I do happen to be a fast typist and some might say over analytical, what can ya do? thanks, darla

sorry one more thing, why only take anitibiotics for 6 mo or a year?? What do you do after that?

Thanks! No we haven't. My son is allergic to amox so this seems like the obvious choice. Thank God for you guys in this forum! Did your daughter have any side effects, or anything I should know about before giving it to him? How much did she take, if you don't mind me asking. thanks again! darla

Good luck, I hope it works well for you guys. My son has had these symptoms for a couple years. First it was eye blinking, that went away, a good while later he would twist his wrist and ankles,that lasted for a few months and then slowly decreased and seemed to let up. Then this past fall that came back with shoulder popping then in addition he was holding his spit, washing his face and very concerned about hair in his mouth. He seemed hyper at times, no adhd, straight a student, nothing exciting to report there. No issues in school. But the teacher did notice his movements and also he used the bathroom frequently. My son also make comments about having to go to the bathroom a lot. I blew it off at first. Then this past xmas vaca i noticed his movements increased a lot. I thought it was anxiety due to xmas and all the excitement. But then a few days later he looked like he had a really bad sinus infection. Complaining about ear pain and his eyes were blood shot with green in the corners. We had seen this before. Took him to the dctrs. Rapid strep came back neg then 48hrs told us it was positive. During that time he had two nights where he had fits of rage and crying. He was swearing, hitting throwing things across the room. He had never done that. I had already been researching his movement issues and dismissed pandas until this. Then after being on azith for four days he headed back to school on monday. He came home was great. No tics or ocd and was relaxed. Slowly throughout this week the symptoms are coming back. So Im just not sure. It seems like pandas on the one hand, but it does seem that the inositol worked somewhat so i don't know. Maybe it does help if it's pandas. I had a metabolic diagnostic run on him yesterday. I don't know what to expect but I found some research that show kids with PDD's are suseptable to PANDAS and their metobolic tests come back showing that they are short on sulfate and magnesium. I don't know. Hes not be diagnosed with PDD's but maybe he will be? He's got a appt with a developmental pedi coming up, so maybe he can tell us if hes got PDD. He's very oppositional in general and negative as well. His temper has always been an issue. He explodes, but when he was sick the week before this, it was a first as far as how agressive and angry, then tearful and nervous almost like a panic attack. I so feel he's got some sensory issues, when he gets hurt even a little, he freaks. Even yesterday at the neuro appt she swiped the bottom of his foot and was very uncomfortable with it and said it hurt. She made me second guess her expertise b/c he asked her not to touch his back when she looked at a mole and she teased him about it and kept touching him on his back as a joke. I would have thought she had some experience with kids that have sensory issues etc and not act like hes just a regular kid who could take it. I don't know maybe im over reacting. She also was not keen on issuing a metobolic diagnostic.. i pushed and she did. My next thing is I would like to check is immune system. Not sure what test I could have them run to see has issues with that. I too want to use natural suppliments and maybe some therapy for behaviors, I am really not open to meds. We haven't even done any trial of antibitics yet. I am skeptical of this Bactrim the neuro reccomended. It doesn't help agains GABHS and is strong and we don't know long term side effects. That's basically where I am at. I am a wordy girl! Sorry. LOL Thanks for your input!

hi I was wondering the same thing in regards to the D8/17 marker. I remembered sweedo saying the same thing. So what does that mean for this test? I wrote to pmoreno, i think she has used this test. Hopefully she can shed some light. I haven't purchased this test yet. I would have thought you could have gotten some lamens terms kind of explanation in regards to the results. The myelin I believe is the protein that is on the outer part of the cell in the basil ganglia which gets chewed off by the anitgens when there is an infection. I could be wrong.. but that is where the perminant damage happens in PANDAS and why you try antibiotics to prevent that from happening. As well as the other symptoms tics, ocd, agression etc. Not sure on the rest. Anyone out there please correct me if Im wrong, i would hate to think im throwing misinformation out there. Im very curious about this D8/17 marker, why did sweedo say it's no longer available?? yet its on this test?

Thank you for that info! I just finished reading it. I do have issue with the fact that it states it does not work agains GABHS and also they have no studies as to long term side effects. This seems to be very strong and I am thinking. Mayb I could approach this on a less potent level. He seemed to show improvement on the azith although showed some smalls signs of allergic reaction. He is also allergic to amox. What could he take and maybe start off with it at the low end but still being effective? I am not comfortable yet with the idea of starting him on antibiotics.... im just not there yet, and with this information, It makes me not want to. What is the norm for the type of antiboitics? And which one seems to work best? If there is such a thing? quote name='peglem' date='Jan 9 2009, 11:06 AM' post='29243'] I was curious, so I looked up Bactrim. Found this: http://www.rxlist.com/bactrim-drug.htm You may be especially interested in page 4. It says it is not useful for GABHS infections. But also, it cautions that it can cause folic acid deficiency, so I'd supplement with that while on bactrim.

Here's the link http://www.autism.com/danwebcast/presentat...m2007/Ohara.pdf Bullets on symptoms and treatments.

The neuro I saw on wensday suggested Bactrim as well. hmm. My son is allergic to amox and I suspected maybe even azith b/c towards the end of the dose for his strep last week, I noticed swelling in his cheeks and he complained of itchy spots on his body. I heard that Bactrim is very strong. Don't know much about it. She said he would have to take it 3 times a day for 6 months. Why is there a time table? What happens after you stop? Why stop? Im just a little confused as to the reasons around it all. I know it's so they don't get sick, but is it also sort of a test to see their behaviors? Is that the main reason for stopping? Or you just can't be on it for that long. What do you do after that? Sorry million questions.

Hi Faith, sure. When my 7 yr old had these movements that came and went we delt with it and were told it was common in boys his age, he will grow out of it etc. Then this past fall his movements increased and then this contamination and ritual ocd stuff started. I had had it with sitting around. He does not take any meds and up until a few months ago wasn't even taking a mulit vitiman. I started him on Intrakid liquid vitamin. It's expensive about $70 for a bottle which lasts a little over a month. That was all good, but no change in behavior. I also changed diet, bought whole foods with no preservatives, additives, dyes etc all that. No change. Did that for a couple of months. While I was researching I came across inositol and that its used for anxiety, depression, and ocd. It's a B complex vitamin; B8. It helps cell membranes, which facilitate nerve impulses. 1 Teaspoon equals 2 grams. I bought it in the powder form, 600 mg from GNC. Its recommended that you take choline with it in the same amount as well as the entire B group along with Vitamin E and C with folic acid and linoleic acid. It supposed to increase the funtioning of inositol. I did not do that though. I just did straight inositol. I was nervous to even do that. So I was taking very small baby steps. I found information that stated that inositol is good for undermethlated high histamine patients. Nearly all ocd patients fit this. Symptoms of that are Oppositional defiant disorder, allergies, depression, strong wills, perfectionism, slenderness, high libido. That is just the info I found. Calcium, magnesium, B6, TMG and Zinc are all good for this. I also found that SAMe is quickest way to help if your child is undermethylated, with high histamine. Now I don't know where my child fits here, but the symptoms matched. I haven't done any of this I listed above except inositol and found good results. I just wanted to give you what I know in case you pick something out of this that might help. Inositol has a sweetness to it, it's chemically related to sugar, so mix it in with apple or orange juice, whatever you like. I started with 1/4 tspn a day and for my son it seemed to work quick. I noticed his face washing, and holding his spit dramatically decreased. He wasn't preoccupied with hair in his mouth. His tics seemed to be more stubborn, but to me this was good news. I would say after about a week I started noticing. It was quick. The side effects to inositol are diarrea,fatigue, headaches, nausea and maybe rash. I did not experience any of those. The listing I found for suggested amounts went as follow: wk 1- 1 tspn 2x a day wk 2- 1 tspn 3x a day wk 3- 1.5 tspn 3x a day wk 4- 2 tspn 3x a day wk 5- 2.5 tspn 3x a day wk 6 3 tspn 3x a day Thats building up to 18 grams a day. It states that if there is no noticable improvement by the end of that period than you probably discontinue. I stopped this once he got sick with strep and went on antibiotics. I haven't come across anything that says its not good to mix them, but I just didn't want to chance it. I will say though after he finished his antibiotics, he had a tic free/ocd free day. He finished the antibiotics last saturday and Monday after he got home from school there was nothing. He was happy and relaxed. He even dropped a bunch of skittles on the rug and I told him to pick them up so the baby wouldn't take them and he picked them up and threw them right in his mouth! My jaw almost dropped. I didn't want to bring it to his attention but I was amazed. Tuesday his shoulder popping tic came back and then wenesday was the neuro and blood work which just totally through him over the edge, so last night the spit holding shoulder popping stuff was all there. Okay sorry for the book! Hope this helps. Im have not started it again, only b/c the neuro was ready to say he has PANDAS and suggested starting anitbiotics, not sure yet what to do. Sorry for the book, hope this helps. -Darla

Yes, I'm thinking now It might be the best option for now. He does have his Developmental Pedi coming up. I definately don't want to allow perminant damage to him. I did notice a better mood. But then again, i just second guess it all sometimes, maybe hes just an emotioal kid?? I can't deny the outburst when he got sick and I know we have noticed bad behavior around his sickness before, just not this bad. Im sure he has a predisposition to being anxious and oppositional, but it seems that if hes got PANDAS it will take over! Also his so called tics.. i believe are more like complusions too, maybe related more so to the ocd. They are not tourettic in the sense that he moves in jerky motions but almost anxiety related. Hes about to get off the bus.. lets see what mood hes in today! So my only concern is what to look out for as far as side effects to taking anitbiotics daily. I know of yeast and it also killing the "good bacteria". Anything else?

Wondering if I should just go ahead and try propholactic antibiotics to see what happens? He seemed to improve as far as tics and ocd pretty quickly. After finishing azith on saturday. Monday he had no signs, tuesday very minimal. Also, what should I expect from the metabolic test? What will it show exactly? What should I look for?

Just got back from meeting with neuro. She seemed to think he has PANDAS from the symptoms and behavior I explained. She was very matter of fact about it, and talked about going on propholatic antibiotics. Or just wait to see if his symptoms get worse next time and do a strep test etc. I talked about getting a metobolic profile done to see more about whats going on with him. She said would rather that we deal with one diagnosis at a time. ?? I said well, If hes got any deficiencies etc I would like to know about it. She then said that she could tell me right now it was going to come back with nothing on it. I said okay, well I don't see the harm. I told her that I would like to rule out things so I know exactly what I am dealing with here. And also that if he did have any issues going on I could suppliment them. She said kids don't get tics from deficiencies. I said well I've read that kids can get tics from not having enough magnesium. She yes, well but the tics wouldn't come and go. I said okay, well this is why I am asking all of this. I don't know all the answers and i would like to know what I am deling with. I did tell her I gave my son 1/4 tspn of inositol and she looked at me like I she was disgusted with me. I told her when I gave it to him, his ocd symptoms made a BIG improvement and when I stopped they came back. She went on about suppliments and how they can come from plants that are lethal.. etc and that they are just as potent as drugs. She mentioned there are avail drugs for his symptoms.. and that even though suppliments are "natural" and companies have made a lot of money off of them, you don't just take them, they affect a lot of things. Soo after that, I was like well, I know hes not autistic but maybe I could get in touch with a DAN doctor to get some tests run. So I can figure it all out. She chuckled and said your son does not have autism. I said I know that, however, they do have the ability to run more tests that will tell me about my son. She said she could refer me to a Developmental Pedi, But there are three appointments and they are long! I said ahhh yeah thats fine, like I was going to say ohh they take a long time, forget it. It's like it's personal for them or something. Im sure they get parents who go online etc and come in with stuff whatever. I told her if it's going to help my son and his day to day life than I want to do it. She understood that and then we ended the session. He got his bloodwork done so I guess I wait for that. Now I just need to find out what the metobolic test will show. LOL. I'm talking like I know all this stuff.. and I am winging it as I try to catch up! Sorry for long windedness. I'm off to toysrus b/c I had to bribe my eight yeard old so that he would give blood. He threw such a fit in there. Screaming and crying hiding under the chairs. He also misbehaved while with the neuro. I was acutally suprised. He was hungry and cranky. It was hard to have a conversation with her and absorb info. He was interupting. I was like what are you doing??He was just struggling to keep it together. He doesn't have that thing where he feels embarrassed in front of people to act up. But then sometimes hes embarrassed over things that he shouldn't be embarrassed about. I don't know. Okay. Step one is now complete. Now on to the Developmental Pedi. Any one have any suggestions from here on out, I would love to hear from you. THanks for listening!

Hi I see that no one has repsonded. I am in the process of seeing if my child has Pandas. I came across your post here and I think that either way you should see a DAN doctor. They have the ability to run metobolic tests OAT tests as well as allergy tests and things like that. It will tell you levels of metals in his body what hes lacking and also allergic to. The fact that he has aspergers and eats gluten is not good from what I read. They put kids on Gluten Free Casin Free diets. They're bodies don't digest them and can affect their moods and a lot of other things. I would look into that. They say that kids will typically be addicted to the things that are harming them or not right for their body, so definately check that out. My pediatrician said he didn't what tests to run etc.. and set me up with a neurologist. We have an appt tomorrow. I know you posted this a while ago, so I hope you've been able to get some help since. But I think your best best is definately a DAN doctor. good luck

My son has had luck with inositol for his ocd. It definately helped him. I tried it and took him off and then put him back on. The only other thing he was taking was Intrakid Vitamins, and I know that wasn't doing anything really. It was the inositol. I started him off with 1/2 tspn, then increased it to 1 teaspoon. That seemed to be enough for him. I would definately think about getting some antibiotics, i hear sometimes these kids can react to other types of virus's. Its the antibodies being signaled to attack and thats when they have these reactions. IF it's pandas. My son just happend to get strep and before this week I didn't know what to do to help him with his tics and ocd and anxiety. He had two really bad nights where he was off the charts and freaking out then he went on azith from Wenesday of last week until saturday. I don't know what happened because as of yesterday, I've seen no tics, no ocd and he is happy and relaxed. Im not sure ....is this what pandas does?? So maybe antibiotics would help. I hope she gets better soon. We have a neuro appt tomorrow and of course he has no symptoms... its a good thing, but I hope they don't blow me off.

I can't imagine seeing my son go from a smart healthy child to sitting there in front of legos not knowing where to start. My heart breaks for you. Our children are fading away it seems sometimes. It's like you have to fight for your healthy child to just remain that healthy. A constant fight with the outside world. I know it sounds dramatic but when your exausted from it all and your mind is just spent thats how it feels...and i've only been doing this for a few months! LOL I hope that your son has a full recovery and you get him back! Im not sure if you have posted how he is doing now, but keep us posted if you can. So is there a test that shows a compromised immune system? Also, does it fit the description that if my sons has pandas and had a strep infection in which his behavior was off the charts along with extreame anxiety, seperation anxiety tearfullness all of that. Only to be this perfect normal little happy boy today after finishing his azith yesterday. IS that what PANDAS does?

Thank you for your advice. Everyone here, thank you. It sounds like your doing a really good job with your son. I've had a little talk with him today about going to see the neurologist. He went back to school today and had in his words a "fabulous" day. He said he saw an eyelash on his shirt this morning and made a wish to have a good day and he did! I was grateful and it made my day to seem him happy and relaxed again. I can't tell you what a difference a week makes. I don't know what to think. Was it the anitbiotics he was on? His tics are way down and his ocd. His personality is happy. This is today though. I don't know what to expect with him most times. I watch him get off the bus to see what kind of mood I'm going to get. All I do know is last week when he had strep, it was like dr. jeckle and mr. hyde. He hit a peek and is pretty much down from it now it seems. I talked to him about his behavior and asked him how he felt. He was well aware and said his heart was racing and it was like his mind was calm but he was out of control ?? not sure but then he showed me a discription with his hands. He said heres the top of the ocean and i am usually right below down here....well last week i flew right up through the top went way high and then wayyy lown back into the ocean. I said yes.. i understand that, i get what you mean. There is no way I am putting him on any meds at this point. I just need to know what the neuro can do for tests? Titers.. yeast? what should I be asking her to run? Do I just tell her my opinion and see what she says? Would I be better off with a DAN doctor? I guess I will see how she responds and if im not happy im moving on. I want test his metobolic levels. If this is Pandas i don't know if my son would be a good candidate for taking antibiotics for weeks. He seems to be allergic to the azith he was already allergic to amox. Im getting the feeling these types of docs (neuro) look for diagnosing symptoms and prescribing rx. Maybe I should see about seeing a DAN doctor. My pedi told me to make an appointment with the neuro back when i called him a month ago over his tics and increasingly bad ocd. He told me it's tourettes and to see a neuro. I then called him at the end of this week after my son went down the tubes with this strep infection and told him I suspected PANDAS and wanted to rule it out. I told him I found a neuro that specialized in it but he said keep this one its sooner than the other neuro could get in to see me. Then he had this one pushed up for me so it's in two days. I thought that might be a good sign. I don't know. Sorry for the long winded book here! LOL. So thats that.

Okay this is weird but im nervous about my sons first neuro appointment that they just moved up from Feburary to this Wenesday. He is just getting over strep since last Monday. Finished his azith. I called his pedi due to his irrational and aggressive behavior that happened on Wensday and Thursday night of last week. Swearing hitting, hitting himself. It was not a pretty scene. Also major anxiety complaining of rapid heart beat, mild seperation anxiety with me leaving to go to work (i work p/t two nights). He was just emotionally unstable. Also has OCD and tics (which I think are ocd not truley tics) twisting wrists, popping shoulder. Also holds spit, washes face, and counts repetatively before taking his vitamins. Heres my question. Where do I begin with this neurologist? What questions should I bring? What test should I have them run? Or will they know? How pushy should I be? I am so overwhelmed and depressed this week because now all of a sudden I am looking at my son diferently. Like I have to handle him different than a normal child with discipline and helping him with his anger and "habits" as he puts it. This makes me feel really sad inside. Labeling him or taking him to go get labeled is upsetting. I want to know what to say/ask. What tests are neurologist capable of ordering? I would like an OAT test from what I've read that can tell a lot, also the titers ASO test. I just want to be super organized with his symptoms and know what they can do for us? I can tell you right now, I will not be interested in a physch eval or meds. I don't know maybe I should be. IF anyone has any advice It would be a life saver for me right now. Thanks in advance. Also Im trying to sheild him from all of this until we figure out what it is and how we can help him. Any parenting advice for a mom with an eight year old boy who already has low self esteem? I don't want to freak him out. He doesn't know hes going to this doctor yet. How should I explain it?

Sorry, I use GNC Inositol powder. 600 mg

Hi I just came across your post. Hope this helps. My eight year old son has OCD. Rituals and contaminations issues. He would hold his spit and wash his face constantly. I have only given him one supplement besides his mulitvitamin and it's Inositol. I give him one tablespoon per day mixed in his drink. It definately helps. Over a few days he isn't as concerned with the contamination issues. He remembers that he should be but is able to not follow through and is okay with it. Most of the time. I am still new with this so that's pretty much all I have for you. It is very safe with really no side effects. I have heard of someone getting a rash, not sure how much they were taking. I hope you find something that works for you. Good Luck!

Thanks. I am happy for you that ivig worked. I know sometimes the circumstances that arise can hinder how quickly you get to these issues, not knowing etc.. it's just a process. I have a feeling he is allergic to the azith hes just finished yesterday. Rash and swollen face. Hes also allergic to amox. He got bad hives from that a year ago. What will I do if that's the case? He won't be able to go on any probiotics will he? I don't know much about the tranfer factors. What will that do exactly? Will it help the antibodies not attack the healthy cells in the basil ganglia?

Yes, I definately have notice my dd's breath being 'off' on several occasions. Not just bad breath kind of breath, either...and not the diabetic type fruity breath either. I have mentioned it to doctors on several occasions since this began for us August 2007. But of course, sinus infections and strep throat will definately cause breath to smell bad so maybe that is it? But even when my dd didn't have any physical signs of illness I would notice an odd smell with her breath. Interesting. She hasn't had that for a long time now. Yes it is interesting. Could it be yeast? I haven't had him checked. He definately brushes his teeth twice a day and I make sure he does a good job. Weird.