trubiano
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Posts posted by trubiano
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As always I'm back for your help!
My son has been on PCN, fish oil, and probiotic daily for almost 4 years and we have been going through the ups and downs. Nothing we haven't been able to handle. He has been in one of his periods that usually lasts about 3 weeks for 3 months now and it seems to be getting worse. Facial tics, grunts, emotional outbursts, and fears. You all know what I'm talking about! This time around he has become obsessed with food. He can eat lunch, walk away from the table with his plate in his hand, and ask me when lunch is. I have to remind him that he just ate and even show him the proof for him to remember. He isn't even chewing. Just swallows things down. He gained 14 pounds in 3 weeks. His doctor did some blood work and everything came out normal except the anti-DNAse B titer was 340. This is down from 1300 3 years ago, so not sure if it's elevated or never went down. His ASO titer was normal. Our doctor hasn't a clue on what to do other than send us back for therapy for the OCD issues. So.. my questions are: 1: Can anyone help me understand what an elevated anti-DNAse means when the ASO is normal?
2. Anyone else have food issues(over-eating) with their children and what do you do about it?
3. Dr. Tonya Murphy in Florida is closest for us. Anyone see her and did she help?
Thank you!!
Tina
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I have been lucky so far and my son has only needed penicillin daily to keep the tics/ocd/emotinal stuff at bay. Pam has been great in actually researching PANDAS, doing blood work needed, and not fighting giving him antibiotics he needs. As far as I know my son is her only PANDAS patient, but she has been great. Back 4+ years ago when Dr. Swedo was reachable Pam was willing to do and order anything she reccomended. It's worth giving her a call and seeing if she would be willing to treat your child. I know just getting a Ped to give antibiotics can be hard! Are there any good doctors that you have been using?
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Hi! I'm in Temple, Ga
I have a great PA in Douglasville that has been helpful the past 4 years. She is with Wellstar Creekside Peds. Pam Landers. Wonderful women, used to work at Kenmar Peds in Marietta and I followed her out to Douglasville.
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Does anyone know a doctor in the Atlanta area that I can start with. I am not sure that my son has PANDAS, but I have a very strong feeling that he does.
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Yes, It will be on mystery diagnosis at 10pm! Sorry.. I guess I should have posted that!
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Hey! I just read that on 6/14/10 Discovery Channel is doing a show on PANDAS. Finally word is getting out!
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'browneyesmom':
I wanted to tell you that it took many weeks of being on antibiotic before my son's strep was finally under control. My PED gave him Bicillin LA injections every three weeks for a few months and it finally worked. We then switched to PCN. We still have issues with focus, OCD, and emotinal outbursts at times just as all PANDAS kids do. I tried to take my child off PCN a few times and with in a couple of days the tics and eveything else started back with a vengence. Try and stay on the antibiotic and I pray you will see a huge difference soon.
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All your child's issues are inline with what my son went through. Stay on antibiotics daily and I bet you'll see things get better. My son's ticcs are about gone there are so few. The vocal one was the first to go.
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Thank you! Thank you! Thank you! All of you have given me such great information. Pepsi Max is a diet drink, so it is not something my son will get again. I would prefer to give him sugar before all the chemicals. I have ordered some ginseng tea from iherb and hope it will give him the same effect as the Pepsi Max did. I am leary on the caffeine pills, but I will take him to Starbucks and let him have a "treat" while I watch his actions. I was given some info on another child that high caffeine soda helped their ADHD due to the caffeine, so I wonder if that was my magic pill? I'll keep you all informed as I try out all my new found advice. I love you all!
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My son is going to LOVE me!
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Thanks Caryn.. Go Bears!
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Chemar! I was hoping you were up! Thank you for your post. I haven't been able to find anything about children taking ginseng, so I'm going to buy some tea bags from Iherb and see if that helps since I'm not sure of a good dose to start with. Anything that will help with mood/anxiety I'm willing to try. Does your hubby take the "rest period" every couple of weeks as suggested?
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I can say YES tics can be brought on by allergies. My older son only tics from the end of July through late October. Goldenrod and Ragweed and molds are high here at that time. All of which he tested postive with. It took five years, but this year we finally have it under control. I have tried natural supps, local honey, ES baths. They all helped, but never took it away. We also tried Zyrtec which made the tics worse. As he gets older kid's tease, so this year I reluctantly went with the medication route and it worked. He takes a 5 mg of Claritin and then I give him Benedryl as needed for any nasal congestion. I do have to go up to 10 mg of the Claritin a few days a week when the tics started to come back and it works!
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I am so confused. My husband took my PANDAS son to the grocery store with him and as a treat let him buy a soft drink if he behaved. Well my son picked out Pepsi Max. I know this is going to sound strange, but my son seemed "cured" for about 3 hours. His OCD that has been horrible this month was gone, he could focus on any task we asked him to do, and his emotional behavior was gone. He became a completely different kid. I hate to say this, but he was "normal". Something my husband and I haven't seen since all this strep/PANDAS stuff started. Like I said it took about three hours and everything started to come back. We kept trying to think to ourselves why he was so different all of a sudden and then my husbacd made the joke that maybe it was the caffeine in the drink he bought him. I looked at the bottle and it says there was a large amount of caffeine, but also Panax Ginseng Extract. Has anyone been using this? Could it be what helped him come out of his fog? I am so confused right now. I know you guys know how I feel. Having a glimpse of my happy child again was great. Should I buy more Pepsi Max and try again? I hate to give him that yucky stuff. Should I try giving Ginseng or could it have been the overload of caffeine? I am sure I don't want to call our doctor yet. I feel crazy enough thinking something in a soft drink has fixed my child. What do you guys think?
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Thank you! I went back and read the two studies and it says no more than 10 grams in children, not mg's!
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Hey all! My PANDAS son is having real OCD issues and I'm going to try inositol as suggested by another member on the boards. I have only been able to find 500mg or higher and the studies I read about inositol and children said use 10mg. Does anyone know what the correct dose to give a 7 year old that will give us good results? Thank you for any help! Or.. if you have any other suggestions to help with our issues I would love to hear them. Emma1 gave me some ideas, but anything else would be great too since school is starting next week.
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Hey again! Thank you for the book idea, they are really helping. The best part is it explains OCD in a simple way even my DH understands now! I did have one more question for you. I bought the Inositol and when I looked online to figure out a child's dose all the studies said under 10mg. I am unable to find a dose smaller than 500mg. My son is 7, what dose are you using?
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This site was a God-send to all of us! Keep your son on antibiotics for good!
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I have a family member who is a research scientist. One of his colleagues is currently investigating fish oil -- not for TS, but for other purposes.
I mentioned how so many of the people on this board do worse on fish oil and better on flaxseed oil. We thought it would be interesting (and a possible research topic) to investigate this.
Soo....
Can I have a quick count of how many people
1) Do better on fish oil
2) Do worse on fish oil and didn't try an alternative
3) Do worse on fish oil and flaxseed oil
4) Do better on flaxseed oil -- never tried fish oil
5) Do worse on fish oil and better on flaxseed oil.
Thanks! (Also, please give the gender and age of the person involved).
For instance, I would answer: Male, age 6, #5.
(Also, is there any way to set up an actual "poll" on a topic? Yahoo groups lets you, but I don't know how to do it here.
-- Liane
Male, age 7, #1
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Well we are in month 19 of PANDAS and there seems to be no relief..DAN! Dr suggested 3-D scan to see inflammation etc..I had considered this along time ago when we didn't know what was wrong..Has anyone ever done this? It's about $3200.00 If it does show alot then it could be helpful in treatment?? not sure what to do?? My son is full of OCD & spacey and we've had 2 IVIGS with no improvement at all! THANKS..Sarah
Sarah is your son on antibiotics daily? If not, I would stop all the testing and give it a try. It may take a few weeks, but it helped my son greatly!
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Pudgeo!! Please beg for antibiotics! Your son sounds just like mine. It took a good three months on PCN before the tics and behavior seemd to just go away, but it did! I remember thinking nothing was going to help. My son still has flare ups and I tried to take him off the PCN this summer and with in a week the tic and OCD came back. As soon as I started the PCN it went away again. I do not know why the antibiotic works, but it does.
As for the original posts question we are on PCN, fish oil, and a probiotic. Allergy testing showed no food allergies, but I sometimes still wonder the way my son craves bread if I showed take him off it. His tics are pretty much gone. We deal with the OCD, confusion, rage, and focus issues which flare on schedule every 4-5 weeks. On a good note he was able to see the fireworks this year without having a huge melt down from the sound! I didn't even have to plug his ears!
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Trubiano,
Have you ever looked at the National allergen/pollen map? Since your other son has such regular onset and duration, you may be able to investigate the specific allergens in your region at that time. Knowing what it is MIGHT be of help in alleviating it. (Certain allergy meds may work better on certain exposures.) Also, I have heard people talk about "local honey." You would have to find a bee-keeper in your area to purchase it from (possibly a local health food store), but the theory is that the honey helps to desensitise your reaction to the local allergens, much like an allergy shot.
Lurker,
Where would I find the National allergen/pollen map? I tried to google it, but wasn't able to find anything that told the specific allergens. My child has had allergy testing and is allergic to grass and molds. Our doctor keeps saying he has a childhood tic and it isn't an allergy, but it only happens for the same few months and goes away for the past 4 years. I know he is wrong, just can't find what will work. We used Zyrtec with no help and found out it has caused tics in children, benedryl and epsom salts last year helped a little along with homeopath drops. I will try the honey. Any idea how much and how often I should give it? I was afraid if he started eating it the tics might get worse or continue longer. Thankk you for the help!
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April and May were terrible for my PANDAS son. Slight tics and OCD/focus issues were terrible. Things got better in June and still going ok now. Tics are gone. I wonder since they aren't around as many children and viruses that maybe that is why? I do have another child who gets severe tics the end of July through October. I tried everything holistic I could find last year with no real help. This year I'm trying Claritin, Benedryl, or what ever I can get my hands on!
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Thank you again emma1 ! I placed two of Dawn Huebner's books on hold at our library and will go get them today.
My son has been on PCN, fish oil, and probiotic daily for almost 4 years and we have been going through the ups and downs. Nothing we haven't been able to handle. He has been in one of his periods that usually lasts about 3 weeks for 3 months now and it seems to be getting worse. Facial tics, grunts, emotional outbursts, and fears. You all know what I'm talking about! This time around he has become obsessed with food. He can eat lunch, walk away from the table with his plate in his hand, and ask me when lunch is. I have to remind him that he just ate and even show him the proof for him to remember. He isn't even chewing. Just swallows things down. He gained 14 pounds in 3 weeks. His doctor did some blood work and everything came out normal except the anti-DNAse B titer was 340. This is down from 1300 3 years ago, so not sure if it's elevated or never went down. His ASO titer was normal. Our doctor hasn't a clue on what to do other than send us back for therapy for the OCD issues. So.. my questions are: 
Back for help!
in PANS / PANDAS (Lyme included)
Posted
I feel so much better that my son isn't the only one. I feel like the food police also! He is always hungry. I make him deals, if he drinks a 20oz bottle of water and is still hungry he can have a snack. Not a problem for him at all. I made a time chart for him today, so he would know what time it was ok to eat. We put a sticker up when he ate that way he could go back and see he had eaten and when then next time he could again. If he was inbetween the time for a snack or meal he could have water or celery. The only thing it did was help me see how every minute of the day he thought of eating. I can't tell you how many times he went to the chart and clock to see if it was time yet. It was torture for him. Has anyone found anything natural we can give to help with OCD? Maybe then the over-eating would stop.