melanie

so nobody is really using it on our PANDAS site.. Ill speakto his drs and see what they say But what im getting is that it takes away somepleasure .I was reading alot with Addicts using it for addiction. Still need help with the OCD and Anxiety .Not sure where to go with that part.IVs have helped a bit but not enough. Thanks everyone,have a great day Melanie

Im thinking the same thing Peg, I cant imagine Dr J would not have suggested it.Danny is taking celebrex,an antinflamatory .Does LDN work for specific asd symptoms .Chemar used it for OCD what about anxiety?? Melanie

Im interested ? anyone use this successfully??Were a ASD and Pandas family,Danny gets IVIG every 21 days Melanie

Done !!! Went very well thank god..until next time 21 days and counting..But I love the next 2 weeks hes great.. Melanie

Not sure I know they were low because Dr J said she want to continue these IVs 2-3 years ..ughhhh Melanie Ill look at some old tests tomorrow .. Melanie

Wish us luck

Hi We havent had any side effects at all either.Dr J wants to continue with the solimedrol(sp) .Now I know why.Danny does real well for about 11 days after the IVs The life of the solimedral ...11 days coincidence ??? Does Allie get benadryl? Also Dr J said this time of year is THE WORST!!! Barimetric Pressure throws our kids .Dannys doing asthma meds right now .He hasnt needed any meds for asthma since he was 3 yrs old.. Im thinking about you and Allie all the time Peg..Read your posts from last month ,things were real good and they will get better again Melanie

We used flagyl for 2 months.I was very happy with behavior on it.We went off of it about 2 weeks ago for no reason except the md said enough .he had some diarea(sp) but I would be fine with it again. Melanie

Peg Does she get solimedrol with her iVs

I totally agree We do 1 g per kilo or 60 grams every 21 days.

Hes sensitive to Omegas and then we switched to flax seed no good..very sensitive to EVERTTHING need the 1 pill to help just 1 Melanie

Hi Peg Hows things going?? Havent seen you around much I think thats good..hes not taking any medication for OCD Hes taking the asthma puffer and a nose spray along with celebrex and a baby asprin..Thats it ..Hes having his 11th IV on friday uggghhhh..husbands doing this one..Optigam 7 hrs ugghhhhh....doing better but still having the tics when he hears stammering..Hows Allie? Do you have any advice about the getting stuck stuff maybe a magic pill .Id like that. Melanie

Hi Dans doing well with behaviors and rage but having grttting stuck issues right now..OCD is off the charts,,I wont go to conventional meds again because we have tried every single 1 and its been a disaster... How about SamE?? Melanie

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Thanks now Im more confused Melanie

Hi Dan cant do any fish oils he reacts pretty bad to them .He gets IV every 21 days 1g per kilo.His next one is this friday.#11 he has ID. I know most people on this site have the ups and downs after the Ivwe do to but its a little different because we do them more frequently Melanie

another real good day,,,very interesting......no ticcing....hummm melanie

He had a really great day His teacher called and said he had the best day ever..Coincidence maybe but Ill take it.. Dr J said the iVIG doesnt help asthma .His asthma is mild I think its just tons of inflamation causing the asthma symptoms.Hes never complained about the asthma . She didsay one of the reasons danny does so well 11 days after the IV is due to the solomedrol(sp) used..It last 11 days. The celebrex and the asth,ma meds have simular effects Melanie

Im going to make this Cant wait to see faces Melanie

baby asprin is to help with the clotting of the blood that happens with celebrex(i think) Im going to try starting tonight 200 mg 2x a day 1 81mg asprin in the am..Ill let you know melanie

Im just asking,,,We say Dr J today and she wants him to try this to see.Oh by the way danny has mild asthma to add to his list of dxs..

Hi we used Buspar for quite a while.I cant remember the dosage but I think it was low.Tis was before we found out about the PANDAS dx.I dont remember any side effects i think it was a little helpful,I would go with your gut.. Melanie

He eats a ton of carrots but Im not kidding hes orange,His hands are orange?? Hes going to camp this week so hopefully being away from massive ammounts of carrots he will not be so colorful It never ends Melanie

Procedure Codes and Billing Guidelines: To report provider services, use appropriate CPT** codes, Modifiers, Alpha Numeric (HCPCS level 2) codes, Revenue codes, and/or ICD-9-CM diagnostic codes HCPCS J1566 Injection, immune globulin, intravenous, lyophilized (e.g., powder), 500 mg HCPCS J1568 Injection, immune globulin, (Octogam), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1569 Injection, immune globulin, (Gammagard liquid), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1572 Injection, immune globulin, (Flebogamma), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1561 Injection, immune globulin, (Gamunex), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1562 Injection, immune globulin (Vivaglobin), 100 mg HCPCS J1459 Injection, immune globulin (Privigen), intravenous, nonlyophilized (e.g., liquid), 500 mg CPT 90283 Immune globulin (IgIV), human, for intravenous use CPT 90284 Immune globulin (SCIg), human, for use in subcutaneous infusions, 100 mg, each CPT 96369 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); initial, up to 1 hour, including pump set-up and establishment of subcutaneous infusion site(s) CPT 96370 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); each additional hour (List separately in addition to code for primary procedure) CPT 96371 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); additional pump set-up with establishment of new subcutaneous infusion site(s) (List separately in addition to code for primary procedure

Procedure Codes and Billing Guidelines: To report provider services, use appropriate CPT** codes, Modifiers, Alpha Numeric (HCPCS level 2) codes, Revenue codes, and/or ICD-9-CM diagnostic codes HCPCS J1566 Injection, immune globulin, intravenous, lyophilized (e.g., powder), 500 mg HCPCS J1568 Injection, immune globulin, (Octogam), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1569 Injection, immune globulin, (Gammagard liquid), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1572 Injection, immune globulin, (Flebogamma), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1561 Injection, immune globulin, (Gamunex), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1562 Injection, immune globulin (Vivaglobin), 100 mg HCPCS J1459 Injection, immune globulin (Privigen), intravenous, nonlyophilized (e.g., liquid), 500 mg CPT 90283 Immune globulin (IgIV), human, for intravenous use CPT 90284 Immune globulin (SCIg), human, for use in subcutaneous infusions, 100 mg, each CPT 96369 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); initial, up to 1 hour, including pump set-up and establishment of subcutaneous infusion site(s) CPT 96370 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); each additional hour (List separately in addition to code for primary procedure) CPT 96371 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); additional pump set-up with establishment of new subcutaneous infusion site(s) (List separately in addition to code for primary procedure