melanie

OCD and I think tics too I just read the nimh study and thats the protocol they are tring.I hate to recomend anything on this site but I DO think its helping danny His OCD is 1/2 I mean it .He also does IVIG every 21 days,and is on cipro melanie

Havent been to Disney in a while ,Sea world gsve us fast pass and six flags gives them too.Dont bother with the PANDAS DX they really dont know about that say tourette syndrome ,ADHD , Aspergers Autism Dx that will work .Its not like they ask for a DR note. Enjoy it melanie

Thanks everyone for everything REALLY THANK YOU

Oh Ive been giving danny 600 I guess this is to low.I see results I mean I reallly see results.I will bump it to 1200 should i do 1/2am and 1/2pm does it matter I love this board whener there is a question or confussion I come here Thanks melanie

If you use NAC can you tell me the dosage you use I have been using it with good results Checking average dosage on the board Melanie

Dannys been on Cipro for 2 weeks and hes doing really Really well..I do great on Cipro as well.DrT prescribed it and Im happy so far 500 mg 1x a day Melanie

Hi can you tell me about OLE.. Olive leaf extract? How much doyou use ,how long till results and what the results were?? Thanks soo much Melanie

what insurance do you have?I have bcbs benicard Im a teacher and I couldnt get it covered even after 3 letters from dans Psy

Hi I could go on and on about this for hours ,We have done 16 IVs and have had way more ups then downs.Our Dr Believes this is the best protocol for danny and his issues.I see Dr J at UMDNJ in Newark ,NJ .Itrust her and have seen tremendous gains with danny.He has had symptoms since hes been about 2.Hes 16 now so you can see the amount of time he was untreated so that could be why.He is dxed with CIVD and PANDAS from 4 Mds so we know that this is what he has.He is also on the Autistic spectrum (somewhere on it )You really need to find and trust a MD .Pm me if you have any questions. Best Wishes Its real hard to deal with this but we really dont have a choice Melanie

weve had 16 IVs and never NEVER has his dr wanted to see side effects NEVER!! I also heard this statment on this board ,dont believe everything you read.

Hi My Psy gave us a script for it but my insurance wouldnt cover it.They cover ivig every 21 days but not rilozole(generic) Its expensive 1,000 a script so we didnt try it.We did start NAC which is the same sort of idea.I think its helping alot ,his obsessive thoughts are 1/2 of what they were and I havent seen any side effects at all.I dont remember who suggested it on this board but i am very greatful.. Melanie

Hi Quinny, can you tell us about your therapies.How many IVs you had.What kinds of antibiotics you used?When were you DXed?My son is 16 and is up and down. Thanks so much

I have NJBCBS and have had 16 IVs paid for .Not under PANDAS Dx but under CIVD

Well I see the same SE as you .Not thrilled at all.I take it and it does work wonders for me.I do get a stiff neck day1 and 2 .I feel unbelievable when Im on it.Danny has been on every antibiotic(xcept penicillin) allergic.Dr T thinks this could be a good one for mycroplasm I have read and would attach the post if I had time.Im going to try it and give it every other day and keep a close eye.Im also using NAC and Theaninie right now for OCD and anxiety. Melanie

Using it to rid any mycroplasm Ive used itt and I see the tons of SE I liked it for me .Everything I use seems to give him a rash .

Dr T gave danny Cipro for danny I loved it for me works great felt great.He said hes using it with his patients.I didnt start it yet will start tomorrow.Of course I need to post here first to see what everyone thinks .He does test high for MP ,he gets IVIG every 21 days with steroids . Ok good bad what do you think?? melanie

Dan had an infussion yesterday hescomplainingabout jaw pain anyoneknow if this is a side effect

the main changes are less rage still has episodes but they are short about 5 minutes and are all words (f B ) curse words and end in an apology a sincere apology.I have begun to ignore these behaviors.Im not sure if thats the right thing to do.I know if i witnessed someone elses child doing this I would expect the parent would punish that child,so I probably should too I truly believe he cznt help it at all. His language has exploded he doesnt search for words and doesnt get frusteraed looking for words. He can sit in a room with others and not freak (most times) melanie

Another IV today hopefully it goes well New years is tomorrow .I need to evaluate theyear.Saw Dr T yesterday went really well .He hasnt seen danny in 6 months so he was shocked how well he was doing.that made us feel great,sometimes when you micromanange everyday you dont see all of the good Melanie

I dont know Hes 16 so we dont talk about diapers or touch his butt .He freaks when he sees babys too..I think its weird for these words to czuse such anguish

Me danny does every 21 days but we do 1g per kilo melanie

Peg ask Dr about celebrex for the headache/light sensitivity I think it helped danny

Hi Peg NO is a trigger too but not like the baby words.Hows Allie doing?Havent heard much from you hope thats a good thing Melanie

Danny definitly is triggered by specific words (dont laugh) diaper,butt ,pee,baby Weird but I dont know why ? Anyone else have this? Melanie

Did they use soumedrol?My DR believes that is why things are so good after the IV.Glad to hear it went well.IV on Xmas??