melanie

I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ? Melanie Thats hysterical!! So why does dannys md say it only lasts 30 days?Did you do a phone consult.Did your insurance cover it ? Dannys on risperadal 1mg per day It really worked when we started it in june .Only really worked for about 1 month .Hes stilll on it probably needs more but I think his foot twisting is a tic he got after he was on it .He had IV and was tic free for 2 weeks I want more IV!!! melanie [/quote

I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ? Melanie

Good Morning, Is it true IVIG only lasts 30 days,Thats what the infectious disease md said. Thats why danny is backsliding so much , Is this true ? Would monthy ivs be or eork the same?I think Im going to do the phone consult with dr k. Melanie

Were seeing the md thursday I dont know if he thinks 1 week on a antibiotic is going to do anything

Danny weighs 135 I emailed Dr K and he emailed me right back.I am going to set up a # consult and he said he will speak with his neuro.I dont know should I ? Melanie

clindamycin 300 mg 3x per day is that good?

Well we are doing the antibiotics and starteds them tuesday todays saturday. Hes cursing more than ever its just exausting for him and us. 2 weeks ago I couldnt be more happy His tics were gone!! He was happy well normal totally normal.I want that again.My question is how long (if its pandas) does the antibiotics take to work. Maybe this isnt pandas maybe its something else. The iv worked it worked I want to do it again and I dont know if the md is going to do it What now? Melanie

where is that study where can I find it? Melanie

thanks anyone else

HI I need a copy of astudy or studies saying titers arent the only proof of PANDAS I am calling Cunningham today to see If I can get the tests before they close but we want to show his MDs its not just the titers Thank You Melanie

when did u do the 2nd iV was there another infection?

Im going to have to get some proof that titers dont have to be elevated.Does anyone have any written info published studies thay say that ! He does get advil but only 200mg in the am I will increase it after he gets off of the zoloft Melanie

So what your saying is if a child responds to the antibiotics and the IVIG then its proof enough ? Hes not saying its not PANdas hes just not positive,He never met danny before yesteday .I did see cunninghams office is closed does that mean no tests? Do you think clyndimicin is a good choice? Hes allergic to pennicillin.Zith was good but he wants to try this one. Thank You Melanie

ok but how long does the tests take?

We just got back from the MD.He is a PANdS BELIEVER but that dosent mean he believes danny has it. He went through all of his blood work believes the titers need to be higher than they present.Also Dannys ticcing like mad using all the words .The MD wanted to know what I wanted to do.I truly think I knew as much as he does if not more Dan is showing signs of returning to baseoline symptoms are simular to before IV The Md did put him on clyndimicin for 10 days 3x per day we will see him in 12 days .We will then re evaluate what to do.I want to do the iV monthly what do you guys think.He did sooo well for 2 weeks almost no verbal tics and behavior and language, OCD was great!!!Md said tht IV runs out every 30 days Is that true? Im so upset I did drop some names witht his md he knows I know that your titers dont havre to be high.Is clyndymicin a good choice. Please respond Melanie

Peglem, You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you! Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed. Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly. Coco Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin! Anyway, I finally have some real hope that we'll be able to do things that will help her... Peglem, I can tell you that about one week post ivig, my daughter's launguage popped....longer sentences, bigger thoughts articulated, more back and forth on topic conversation...we were shocked to hear some of the things that she said. Ex. at dinner my husband asked her if she wanted more cranberry sauce and instead of the usual yes or no, she replied, "No, but thanks for asking!" I am encouraged and I agree wholheartedly with your prior statements. I feel like shouting to every parent, DON'T SETTLE FOR THAT ANSWER!! coco I agree we saw the same results with s=danny

what was the symptoms of 5th disease

was the 2nd IV 2 days ?

I was just reading pixiesmom and her 4 week post Ours seems similar.I'm up early reading my sons iv journal,seeing what is going on. Last week I couldn't be happier ,this week I am again discouraged.What is this backsliding thing.I know its the healing process ,but is it really? 1 OK week 1 great fabulous week 1 good week 1 not so good week.What should I look for just any improvements.Buster if you are reading this can you try to explain this process to me .I am going to that MD Tuesday and I want to ask the right questions .Hes not the MD who did the iv its his buddy and he wants him to take a look at Danny to see what to do next. thanks for listening again Melanie

Well it started on Sunday but m not so sure it was because of her I heard a little sat but nobody in my extended family really cares that they are a carrier They keep saying hes going to be exposed somewhere anyway rude!!!Hopefully we will get some antbiotics tuesday

I just founf out that my niece has strep of course we were together sunday.I dont know what to do .I know his treatment isnt right .I know he should be on antibiotics I thought since the the neurologist did the Iv he knew what he was doing .Why is he doing things differently? I have the app with the other md tuesday Im hoping he really knows PANDAS .If not I dont know what Im going to do.I thought this was over now I feel like its not over its just different. His behavior is still real great happy and not angry.No rages! Very engaged very,very!! Ticcing less but still ticcing again .Im depressed. Melanie

I have to check the start dates with the zoloft and ill cut the night dose in 1/2 see if i notice anything Im going to pull my hair out!!!!!!

I think there is too much going on to get a clear indication. The IVIG should have helped with the messed up dopamine in his basal ganglia, if it worked. But, then you have risperdal blocking some dopamine...so then it'd be hard to tell the effect of the IVIG. Then throwing zoloft in there increases the amount of time that dopamine is stimulating receptors...it all gets kind of mirky. I wonder if he needed to come off the risperdal after IVIG, and it was the risperdal in the face of basal ganglia corrections (from IVIG) that was causing whatever prompted the doc to add zoloft. I feel like I'm not saying this right, but I think after the IVIG, I'd want to see how he does w/o external dopamine manipulators. This is all based on my own supposition....just brainstorming ideas. I cant read that zoloft article..I googled it and cant find where it says it can causse tics?