melanie

So, you don't think you have seen any changes for the better? I see nothing good or bad! Tomorrow will be 1 week since the 1st Iv treatment. Im disappointed now.

Still nothing !! Maybe more angry though .We had a big party last night He didnt do to good I was really hoping for more I know its early but I am hoping for the best . Melanie

Ok Im depressed !! Im not seeing anything nothing !!!Tell me the truth maybe we waited to long ...When if you do ,do you see something be HONEST Please!!! Melanie- Take a deep breath and relax. After Shae's first IVIG my husband and I swore that we saw no changes and we're ready to consider it a complete failure. It's too soon to see alot of changes. Remember, your son has been sick for along time and his body hasn't been fighting the infection properly. Now he has all those good antibodies and his body is likely going to war with all the infection that has been floating around. His body needs some time to begin to heal. Everyday should get a little better but there will be some days were you see a total turning back of the pages. The first week it seemed like everyday was bad. The second week I think she had two bad days. The third week it was one bad day and a couple of small incidents. Week four was even better. Hang in there and be patient. It is too soon to call it a failure. Thanks I love this forum!!Its better then any therapy !!Melanie

Ok Im depressed !! Im not seeing anything nothing !!!Tell me the truth maybe we waited to long ...When if you do ,do you see something be HONEST Please!!!

I want to add that we saw him. I was very happy with him but had some serious ,serious issues contacting him after he did testing and gave danny meds .I thought he was very knowlegable, proffessional and had a great bedside manner but as far as contacting him not good!! Maybe he was moving practices when we saw him Melanie

whats imatrex It's migraine medicine. I wonder if Excedrin for migraines would work--the caffine wouldn't help his sleeping issues though. Im not sure if his headache is migraine like.He complains for a few minutes I give him motrin and he seems fine a while later if it was that bad wouldnt he complain more? Ill see how it goes today Thanks Melanie

whats imatrex

The monthly iv's are they 1 day? how many hrs? Yes, monthly IVIG is for one day. The hours depends on each individual (weight, dosage, & how fast the infusion rate is). Shae's take about 4 hours. Some individuals receive what is called SubQ instead of the monthly IVIG. The Subq is given at home, I believe weekly, and is done using several needles subcutatously rather than through an IV. Thanks his head hurts again I gave him a benadryl and an advil around 4pm I feel bad and the md hasnt called back how much advil can a 15 yr old 132lbs 400mg or more?

My dd had a migraine for about three days afterwards. Thanks I did give him advil he seems better should I just give it to him just in case I called the md he hasnt called back yet My dd now receives IVIG monthly because of immune problems--what I've learned from those who have been receiving IVIG monthly for years is that they continue to do both the Motrin & Benadryl for up to two days afterwards to help with side effects. The monthly iv's are they 1 day? how many hrs?

We did not experience any issues with sleeplessness after the IVIG. Is he having any other symptoms or side effects that may be contributing to his inability to fall asleep (joint pain, headaches etc)? Hi I dont think dannys had a problem last night Hes older so he doesnt look for us and I checked him and he was sleeping ok We did the the IVIG in the hospital so they didnt let him sleep Hows your son other wise? Do you see anything yet I dont I know im pushing it but...

My dd had a migraine for about three days afterwards. Thanks I did give him advil he seems better should I just give it to him just in case I called the md he hasnt called back yet

Dan woke with a bad headache what is this about he finished the iV last night

Im in NJ too I have seen several I dont know what your looking for a neurologist or a DO? Melanie

We spent 1/2 the year on home instruction He had to go to work with my husband it was a mess what state are you in ? There is agencys that can help when you are in crisis I called them a few times they were helpful for us we are in NJ best wishes this will get better Pick your battles until..

hi I dont know he came home last night ticccing now he has a breathing tic like he cant get a deep breath The md said its anxiety. Does it take along time to see any results? The md said if he sees results he will likely do more IVIG. I want to see some good PLEASE some good Thanks Hes going to work with my husband today,He will fill me in during the day. Melanie

Hi Dannyhad his last dose of the IVIG today actually he is finishing the bottle as we speak he had 3, 11 hr infussions .The MD is letting him out of the hospital soon its about 9pm here in nj .I cant wait for himto get home my husband is with him .I didnt see anything at all.Im depressed How long can it take until you see something Please help me .Melanie

Hi second round is going on now he is going to get 3 rounds I didnt tell him yet he wants to go home we have to stay in the hospital during the treatment hes sleeping now its 4 :15 pm I have to go back to work tomorrow so my husband will be taking over.iM GOING TO HAVE A HARD TIME WITH THAT God works in strange ways.Im home all summer and then finally he gets this and I cant be here the whole time.But his fathers great so .I dont love the hospital but hes been really great Melanie

Hi Well day 1 IVIG is done we dont see anything I just saw the md he doesnt think we will see much while we are here He kindof made me feel a bit sad well maybe its the lack of sleep we are staying in the hospital for 3 days doing this .His 1st dose was 800 ( ml?) over 10 hrs but it really lasted untill about 4:30 am all night with the BP temp the alarm on the IVIG machine long long night They wont hook him back up again untill 2:30 today about 24 hrs since the 1st one .So we will watch movies untill then hopefully I will nap Im tired and so is he. Ill write more later thanks for the prayers and thoughts I look foward to seeing them. Melanie and Danny Hi Elizabeth Good luck to you too How come you guys get to go home ? We have to stay in the hospital the whole time.Where are you what state Im in NJ Melanie

Hi Well day 1 IVIG is done we dont see anything I just saw the md he doesnt think we will see much while we are here He kindof made me feel a bit sad well maybe its the lack of sleep we are staying in the hospital for 3 days doing this .His 1st dose was 800 ( ml?) over 10 hrs but it really lasted untill about 4:30 am all night with the BP temp the alarm on the IVIG machine long long night They wont hook him back up again untill 2:30 today about 24 hrs since the 1st one .So we will watch movies untill then hopefully I will nap Im tired and so is he. Ill write more later thanks for the prayers and thoughts I look foward to seeing them. Melanie and Danny

anyone know dr ks dosage I just want to compare

Thanks

Well were here and hes got the IVIG of course we see nothing yet they put it in at around 2:45 pm hes doing ok tightness in his chest md says its a side effect but anyway Im hoping for the best Melanie

Hi Thanks for all of the prayers I sure can use them.Dannys off antibiotics they worked for a while then not as much we went on Risperdal and we still are things calmed down when we used the meds The Psychiatrist who prescribed the meds isnt a "pandas"believer so no antibiotics.His neurologist thinks IVIG will help him so were going in on Monday morning.I want to ask for those who did this I know your kids were younger but did you see results with tics and behavior? What should I look for in the hospital? Hes going to be there for 3 full days all he wants to know is how hes going to dress and shower with the IV in his arm,Hes been doing ok for this week but I hear the tics alot today.Not sure if its stress .Hes packing his stuff for the hospital ,movies ,research(he researches WW11 ) .Well tropical storm danny is upon us Im hoping that my storms with danny get better after the treatment.I feel very lucky that were going to get this treatment I just hope it works I know it will Im just a bit umm well keep praying and I will let you all know how its going . Melanie

I was extremely nervous before the first IVIG. I think it's definitely normal. Is he having IVIG on all three days? As far as I know yes 3 days So I'm just curious--will he be receiving the dose that Dr K recommends over two days or is your doctor doing something completely different? Im not sure if hes following Dr.Ks recomendations Im pretty sure its 3 days remember danny is 15. He is his Neurologist the head of neurology of a major hospital and uses IVIG often for pandas patients , unfortunatly hes away this week.