melanie

Angela Glad to hear she is doing well.why is she on such a low dosage how much does she weigh? Melanie

Hi I actually think I can help you I had many issues eating growing up,My stomach hurt all of the time so I would eat only what I knew I could.My mom was very good with it.She would ask me what I wanted the day before ,and since I knew what was comming I could prepare myself.I still tend to do this.Danny wont eat anything with his fingers untill about the age of 12 so I made hm foods he would eat .Everyone would tell me if you only make them one thing they will eat it Well I know thats not true so I would make chicken nuggets everyday He was very thin and then one day around 12 He started eating everything,I meann everything!!!Try asking it will help,dont make foods that hide other foods,sounds funny but I still cant eat foods like devil dogs or jelly doughnuts when something is hidding I wont eat it. I dont eat any chicken or meat just fish The meats bother my stomach,The drs told my mom that I didnt have enzymes to break up the meats .Maybe shes having simular issues.All I know is I understand her and just understand she cant help it ,my mom did and it saved me . Good luck Melanie

Melanie, Can you remind me what dose he is on? My dd is on day 5 as well. She was on the tapering dose that is given spread throughout the day. Day one was fantastic. Best day in months. It was the only day that she had 8mg at once in the morning. Then I stopped giving Advil at the same time and the dose decreased so that she never got more than 4mg except at bedtime and the results were not quite so good. Definitely noticed things worsened without the Advil and I added it back in on day 3. After that it was not obvious that anything was different than with just the Advil. =( But that first day it was fantastic. She spent a quiet morning doing crosswords and Sudoku's while I painted the bathroom. She even told me she felt really good. This does not happen easily becasue even when she seems to have a good day to me, she still struggling in some way. So, when I ask her how she's doing, she almost always says, BAD. But that day, she said something like...really good. Dd's dose was 24mg the first day, spread out throughout the day. The pills were 4mg pills and each day it decreased by one. I'm thinking that a higher dose, or one given all at once in the morning would make a difference for her. I need to discuss it with her doctor and see where he wants to go from here. Angela Hi Angela hes on 20 mg am 20 mg pm I see Dr T tomorrow I dont know what im going to do He was very good for day 2-3 and 4 today he was very ticcccccy whenever you speak he ticcs (verbal)lots of foul language and cant sit still kept smelling his fingers,into his head OMG this is going to kill me.I am not even sure if this is what is soposed to happen because I havent gottn alot of response from other moms and dads about the steroids used with their kids.I know its soposed to be an idicator of how the IVIG will work.I hope you guys ae doing better than us today . Melanie

Im sitting here with dan and he seems to be kindof off not what i would like to see.BB wasnt great but wasnt horrible either.He really didnt play to much kept saying hes not good enough.This always seems to be a big obsticle for him not doing things perfectly. Oh well I may have had higher hopes than I should have . Melanie

i SEE dR T tomorrow so I guess Ill know more then Melanie

Just thought I would update the steroids day 2 (lol) Hes still doing much better.He just left for Basketball and that will be a real test of how hes doing.Last Sunday was a disaster so this week we will see. Melanie

Hi Ellie, Thank you so much for the steroid dosing! Such a help to me. My ds16 is 150lbs but sadly, losing weight again during this exacerbation. Do you use abx as well? How does she respond to abx as compared to abx with steroids? We are on day 4 of zith 500mg for the first time in 6 years of PANDAS and seeing some very nice changes! Did she ever struggle with separation anxiety? That is still one of the primary issues of my son, despite his age, when exacerbated. I'm sorry for so many questions, but to talk to another PANDAS mom of a teen is such a blessing to me. I'd be so appreciative of any personal advice or resources designed for teens wrt PANDAS. Many thanks! Gayle How come so people do steroids for 5 days and some do it for 30? Why os there so many different protacols? Melanie

Hi gayle I sent you a pm thanks for that info melanie

Melanie and Ellie, May I ask the dose of steroids you're using so successfully for your kids. I have an appt with a new doc (here we go again) on 2/3 and I'm trying to have all available ducks in a row prior. Printing off Dr. T's latest post was a huge help. Many thanks, Gayle hI Dans on 20 mg 2x a day this is the end of day 3 and compared to monday its like a new kid .Im not sure if its a good enough dosage I think its probably low Dr T knows im very nervous about this but hes doing very well.We just got back from the movies He really was great Its nice to see him happy.I hope this will last until the iV can get set up. Melanie

Interesting, that seems much higher than what is being done by Dr. K or Dr L for steroid dosing. I had the impression that what Dr K was using was considered already "high" and it was about half of what you are using, (as I remember.)?? Is that 60 mg of Prednisone ? \ What is dr l and dr ks dosage?

Hi Ellie Im not sure what Im doing Im seeing DrT monday and Ill stay on 2- mg 2x a day untill I see him I guess..That will be 5 1/2 days .Danny is 15 so our kids are in the same age area.He did the IV in sept and were waiting to do another It was great It worked like nothing else .Where do you live?Have you seen any of the mds talked about on this forum?How much steroids is your ds on? Isshe on antibiotics? Melanie

I remember reading that someone said something about steroids and growth? Does it effect the growth pattern? Does dosage really make a huge difference? Do some kids do better on higher dosage ? Why do some do 5 days and some 30? melanie

Ill get a better feel at the end of the day,He did go to work again instead of school.Hes 15 so he likes to work.My husband has a buisness so thats been a life saver.I did notice last night tons of focushe laughed and had a smile on his face .He was calm didnt eat as much as normal ,thats ok maybe .I hope this continues.I see Dr T on monday weve been seeing him fo r while.I hope this works untill we do the IVIG again .I know that the steroids are a great diagnostic tool to see if the IV will work,hes already done the IV so we know it will work>What schedule did you use how much did your child weigh? Melanie

How long did the good stuff last?

Danny had a great day today Do the kids usually do well so soon? Very little talking to himself very little Very good mood litttle tics He didnt go to school but he did go to work and did his school work without any problems at all he doesnt want to go to school tomorrow he thinks he will "flip out" so I think he will go to work again. Melanie

do you remember the dosage? week 1-10mg 2 times/day week 2-5mg 2times/day weeks 3,4 - 5mg 2 times/day how old and how much does she weigh?

do you remember the dosage?

Well I am going to continue the steriod but I didnt send him to school He went to work with his dad .This way he can see if the out burst was related to the med I dont really think it did I think its the whole disorder or whatever this is. Have a nice day Melanie

Hi I truly feel for you and your son.I know this is so hard and your feeling hopeless .If the risperadal is helping right now why dont you just keep him on it until you can see dr l.Danny takes that too I hate to give it to him to but for now I have to,so I do.Does it help?How much is he taking ?Danny is taking .25 x2 he was taking .5 x2 but I think it made him worse.The psychs job is to prescribe medication for the psyc symptoms,remember that,they really dont try to fix them just make them managable.Whenever you call them they will just suggest more meds or a new one.Like little guinney pigs.(sp)SSRIs make everything worse and weening them off is tourture,for them.. Keep me posted Im here Melanie

dnny had a bad day I dont think it had anything to do with the steriods cause I gave him the second dose and he seems fine not angry or aggitated seems fine ..I dont get it maybe theres something at school that pisses him off ?Hes on 20 nmg 2x a day I wanted to go slow cause Im so nervous what doses have worked the best?Im going to keep him home tomorrow and keep an eye, Melanie

Do some of the kids have an issue at first and then they are better? Melanie

I know this is to soon danny started on the prednisone 20 mg this am and he flipped out in school Very aggressive I dont think its definitly the steriods because hes had a few bad days before which is why I decided to do this now but he like flipped on his teacher and I think threres something going on on the bus HELP!!! Melanie

WOW! I have heard the chorea movements are often difficult for the "lay person" to see unless they are very pronounced. Last night towards the end of his meltdown, by son asked me to hold his legs down because he couldn't stop them from moving. I held onto him for at least 10 minutes and his feet continued to twitch even as the rest of his body settled down. It just all seems so neurological... WE have the same leg issue He hates it I know its neurological I found that when he runs on the treadmill or does any leg exercises he seems better I will have danny do jumping jacks.

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies. If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle. Buster P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory. If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing I don't think those are that important as far as steroids go (Allie is low in both of those as well), I think the reason why our positive effects did not last longer is because Allie still had intracellular strep, and though she was on antibiotics at the time, suppression of the immune system allowed the strep to grow w/o even the little help that her immune system would have given in fighting it. During the steroid those auto-antibodies were reduced, giving some relief, but came right back afterwards. Also, the intracellular strep was stirred up w/ dental problems at the same time. Thanks Peg and Buster and of course Dr T Im going to start the steroids tomorrow morning see how it goes 20 mg am 200 mg pm cross your fingers Melanie