I think its working!

[melanie]

Melanie,

hooray!

BTW is your son on an antibiotic? Which one and what dose?

 

 

No and I asked why and he says he dosent want him on it right now.I dont know why .I did add a 200mgadvil daily myself so .Hes doing good in school (special ed school) doing his work Im ok I am seeing some good results and am happy now, If he is exposed to strep will it ruin everything IVIG?

Melanie

 

Yes, if he gets strep again it may ruin everything. Even the Swedo kids (in the ivig/pex study) were on prophylactic antibiotics. Pretty much everyone stays on prophylatic abs post IVIG..."until PANDAS is a distant memory" says Dr. Latimer.

 

 

Well why didnt he do that?Could it be his age? He did say if he see that this works he was going to do it again .My appointment with him isnt untill oCT 12TH Ill call monday am.what should I say?

 

Melanie

[EAMom]

Ask for prophylactic antibiotics to prevent future strep infections.

 

Pennicillin is what Swedo used (250mg 2x daily) in her PEX/ivig study. The main problem with Pennicillin is that if you miss a dose you are essentially uprotected for several days (not good if your child is in school where there is a lot of strep.) Another option is Azithromycin, which has a long 1/2 life so if you miss a dose here or there you are still okay.

 

 

My dd is currently on Azith. 250mg/day (54 pounds) but we hope to lower that eventually (she had IVIG in August).

[T_Mom]

YEY!!! Melanie that is good news indeed--YEY!!!

Wonderful--

[NancyD]

This is REALLY wonderful news, Melanie. I'm so thrilled for you! I, too, am very concerned that he's not on antibiotics. I hope your doctor will get him on it right away. Keep us posted.

 

Nancy

 

Ok I think Im seeing some good stuff post iVIG!!!Back at scholl and doing math !1He hasnt done math in a year.Hes using a calculator but.. hey I dont care HES DOING MATH!!Also hes not hearing me stammer as much I can say dan dan dan and nothing no tic at dinner we ate without any tic OMG!! I dont want to look to deeply its only a week but Oh he also doesnt seem so pissed off all of the time keep the prayer going

 

Melanie

[melanie]

This is REALLY wonderful news, Melanie. I'm so thrilled for you! I, too, am very concerned that he's not on antibiotics. I hope your doctor will get him on it right away. Keep us posted.

 

Nancy

 

Ok I think Im seeing some good stuff post iVIG!!!Back at scholl and doing math !1He hasnt done math in a year.Hes using a calculator but.. hey I dont care HES DOING MATH!!Also hes not hearing me stammer as much I can say dan dan dan and nothing no tic at dinner we ate without any tic OMG!! I dont want to look to deeply its only a week but Oh he also doesnt seem so pissed off all of the time keep the prayer going

 

Melanie

 

Danny was on antibiotics for about 6 months pre IVIG azith we did see some results but that md ran tests and said he didnt have pandas well that was 3 or 4 Mds ago.I think hes allergic to penicillin had a rash when he was little 3or 4 Ill call monday am things are still getting betterhere so Im happy its sat so we will spend the day analizing him Ill write more later

 

Melanie

[EAMom]

Hmmm....there aren't any tests that can "say your kid doesn't have PANDAS". I am amazed that they took him off of Azith. if he was responding! definitely put him back on so you have the best chance possible of maintaining your gains with IVIG.

 

There is a possibility that you may need repeat IVIG's (like nancyd's dd) esp. due to Dannny's age...but you never know!

[melanie]

Hmmm....there aren't any tests that can "say your kid doesn't have PANDAS". I am amazed that they took him off of Azith. if he was responding! definitely put him back on so you have the best chance possible of maintaining your gains with IVIG.

 

There is a possibility that you may need repeat IVIG's (like nancyd's dd) esp. due to Dannny's age...but you never know!

 

He did say he would do it again if he sees any positive results so I guess were going to do it again hey its ok

 

Melanie

[melanie]

Ok I think Im seeing some good stuff post iVIG!!!Back at scholl and doing math !1He hasnt done math in a year.Hes using a calculator but.. hey I dont care HES DOING MATH!!Also hes not hearing me stammer as much I can say dan dan dan and nothing no tic at dinner we ate without any tic OMG!! I dont want to look to deeply its only a week but Oh he also doesnt seem so pissed off all of the time keep the prayer going

 

Melanie

 

 

Ok well tics are here again today But Im not stressing cause yesterday there was none so thats good Iguess thats how it works I hope