croatian mum Posted January 2, 2013 Report Share Posted January 2, 2013 My ds12 had IVIG 6 month ago. Now, all his tics are back, and the very loud vocal screaming tic (every 2 seconds) is driving us all mad. His tics came back on the day before his younger brother got sick and recived antibiotics. Higher doses of abx or ibuprufen did not helped him this time. So, today is the 6th day of screaming,loud loud scream every 2 seconds. So, my question is: if 6 month after IVIG all the old tics are here again; does it mean that it's not Pandas but TS? Or can we hope that it's just a flare asepcialy because it all started when his younger brother got sick? What do we do now? Any advice? We are going crazy... Link to comment Share on other sites More sharing options...
Missmom Posted January 3, 2013 Report Share Posted January 3, 2013 Can you get steroids? If the ivig worked initially then steroids may calm him down at least temporarily. Good luck. Link to comment Share on other sites More sharing options...
croatian mum Posted January 3, 2013 Author Report Share Posted January 3, 2013 I'm not shure that in our country steroids even exists Link to comment Share on other sites More sharing options...
StillHopeful Posted January 3, 2013 Report Share Posted January 3, 2013 I think it is a flare. It does not mean it is TS. Symptoms can come back with illness and exposure. Did you try changing to a different antibiotic? Some people need to use 2 different ones at the same time. Did you get any new bloodwork drawn to see if something has changed? Link to comment Share on other sites More sharing options...
kimballot Posted January 4, 2013 Report Share Posted January 4, 2013 My ds12 had IVIG 6 month ago. Now, all his tics are back, and the very loud vocal screaming tic (every 2 seconds) is driving us all mad. His tics came back on the day before his younger brother got sick and recived antibiotics. Higher doses of abx or ibuprufen did not helped him this time. So, today is the 6th day of screaming,loud loud scream every 2 seconds. So, my question is: if 6 month after IVIG all the old tics are here again; does it mean that it's not Pandas but TS? Or can we hope that it's just a flare asepcialy because it all started when his younger brother got sick? What do we do now? Any advice? We are going crazy... this sounds like a PANS flare to me. We have seen the same when my daughter is sick - DS15 flares. First - be SURE the sibling is being well-treated for the infection and be sure to clean everything .... switch to paper towels in the bathroom instead of cloth towels. You can even use paper plates and paper cups for a while to reduce the risk of sharing germs. Buy a stock of toothbrushes at a cheap store and change them up . Regarding the child who is flaring: Step 1 would be antibiotics and ibuprofen (which it sounds like you are doing). You can also add in quercetin or other anti inflammatories and also charcoal or betonite clay in case it is herxing. Step 2 would be steroids. A taper is often used - where the child starts with just a couple of pills a day then builds to a full amount for a week or two, then tapers down gradually until he is down to 1 pill a day for a couple of days - then ends. It is not uncommon, though, to see an increase in symptoms when you first start a steroid taper, so be ready. Step 3 would be another IVIG. Best wishes. Link to comment Share on other sites More sharing options...
croatian mum Posted January 4, 2013 Author Report Share Posted January 4, 2013 Thank You all- You have calmed me down, and helped me so much. I also hope tha't is a flare aspecialy because thing got worse at the same day my Younger son got very high fever that lasted for 5 days; so my younger son got also abx. So, I really hope it's a flare. I was also thinking about changing abx; but it is so hard to do it on my own, didn't know which one to give him, how much; what are steroids ecc. So, I wrote to dr. K. last night and today he answered and said to keep him on a very high dose of Augmentin; but he didn't specified how high the dose shoud be. I'm thinking about 2 mg daily. Do You think that this is engough? And if there will be no changes in his condition, he also wrote to give him Prednizone..have no idea what that is. Hopefully I will found something about it on latitudes. So, the question is: what do You think a high dose of Augmentin is? 2 mg daily? Thank You in advance for Your answers, And to kimballot: yes, we have allredy ordered another IVIG. Thank God it's free of charge in our country. Link to comment Share on other sites More sharing options...
StillHopeful Posted January 4, 2013 Report Share Posted January 4, 2013 The Augmentin is dosage is based on the patients weight. If you look on-line you should be able to find something regarding pediatric dosage for Augmentin. My son is over 100 lbs so he takes an adult dosage (pill) which is 500 mg 2 times per day. Also, Prednisone is a type of steroid. I am so glad Dr. K got back to you. Hope your child feels better soon. Link to comment Share on other sites More sharing options...
nicklemama Posted January 5, 2013 Report Share Posted January 5, 2013 My son is 65lbs and 9yo and he takes 500mg of augmentin twice a day for treatment. If you can, get a doctor to prescribe a prednisone burst of 5 days. DS would take 25mgs a day for 5 days. Prednisone is a steroid. We are not talking about the anabolic steroids that body builders and some athletes take to build muscle. Link to comment Share on other sites More sharing options...
croatian mum Posted January 5, 2013 Author Report Share Posted January 5, 2013 my son was on 1 mg daily; and still he got infected. Now he's on 2 mg of Augmentin, so we hope to see some changes in the dext few days. Link to comment Share on other sites More sharing options...
croatian mum Posted January 5, 2013 Author Report Share Posted January 5, 2013 y son was on 1 mg daily; and still he got infected. Now he's on 2 mg of Augmentin, so we hope to see some changes in the next few days. Link to comment Share on other sites More sharing options...
albmum Posted January 5, 2013 Report Share Posted January 5, 2013 I have used corticostetoids for my son(9) when he has flares...5 days /injection amd since the first day there are improvements....side effects on him joint pain in the second day only. As steroids I believe you can find plenty in your country(since I can find in mine ) i had been using Deltacortene 5mg compresse before but he improved slower with that... Good luck Link to comment Share on other sites More sharing options...
albmum Posted January 5, 2013 Report Share Posted January 5, 2013 As abx he is from a year now on benzilpenicillina benzatinica .its an injection which is done every 21 days...it doesnt give him any side effects on guts.. And i think its helping him a lot from strep infections but unfortunately not from the viral infections Link to comment Share on other sites More sharing options...
croatian mum Posted January 6, 2013 Author Report Share Posted January 6, 2013 Thank You, who approved corticosteroids injections for Your son? His ped or did You go to Italy? Link to comment Share on other sites More sharing options...
albmum Posted January 6, 2013 Report Share Posted January 6, 2013 His ped because as mentioned before he is allergic to dust mites as well....whenever he is in an asthma attack his tics and mood flares too, his ped prescribed prednisolon as a first aid to asthma but we obseveda ramp down if tics . Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now