croatian mum

I would be also very happy to know the answer about the mood and vocal tics..

Thank You, who approved corticosteroids injections for Your son? His ped or did You go to Italy?

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.

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.

I'm wondering the same thig. Ibuprufen didn't work for us, but we still hope that something will work. One day..

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.

I'm not shure that in our country steroids even exists

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...

Hope You will find my answer, just saw your post. My best freind's son had a bad neck injury; the next day he had tics. he was having tics for 2 years, and than they just dissapierd. So, it s possible.

thank you all. I think also that 2 mg of Augmentin is too much, but we just didn't know what else to try. I will lower the augmentin to 500g daily; and this night I will add ibuprofen. Hope it will work. Thank God for You people on this forum. You are the only support that we have..

this is to adition to my oher post here - we have a flare, so we raised up augmentin up to 2 mg daily, for the last 4 days. Is that too much?

ahaa, yes,I will try.We have ibuprofen here. How much do I give him, do You maybe know? And I also think I can lower the abx dosage; it obviously don't wotk any more..What do You think?

but he is taking probiotics for the last 6 month - for as long as he is taking antibiotics. And a question for Broo100 - what is Montrin?

hello again, I need urgent some advice. we are 6 month post IVIG; my ds 12 is on Augmentin but this terrible loud vocal tic is back again!!!! We will probably get another IVIG in 1 - 2 month, but in the meantime he can not funktion properly with this loud screaming tic. 4 days ago we raised up the abx dosage up to 2 mg per day (augmentin), but with no sucsess. He is not geting any better. He is also taking probiotics and Nystatin for Candida which was found in a troat culture. is there anything else we can try to help him to stop the screaming??? Looking forward to Your answers

hello again, my ds 12 had IVIG 6 month ago, and he is on abx and probiotic for the last 7 month. He was doing fine (more or less); but now the tics are back.1 month ago, he was positive for candida (troat culture); but, since he was doing great; we decided not to give him anything for candida; simply because we were affraid to unbalance him at the time. Now, his tics are back; so, we dont know if Candida can be a possible cause; or do we maybe need to try to change the abx (he is on Augmentin; (2 x 500 daily) And another question about vitamins - if You need to choose; and to give to Your son only the most important supplements for him - what would be Your choice? B12; Omega; fish oil; zink; magnesium or something else or what? I'm asking, because in our country we can only get 3 supplements; and each is selling separately; so we need to make a choice..hope someone can help us.

My ds 12 has ADD and ADHD; and before any kind of flare; the first that we notices id ADHD getting worse; and in a day or two the tics are getting worse also. So, Yes,ADHD has a lot to do with pandas.

Than You all for Your answers. I was thinking the same - to check the titers first. AndI was also thinking about not vaccine him, but now I'm shure I won't! Iwill check with our dr. before IVIG; but, I also belive that the risk of getting hep. B from IVIG is very very small. We still have 2 month of time to think about it. Will let You know what we have decided.He is doing well now, so we don't want to do anything to put him in any kind of risk! thank You

Hi, my ds 12 had IVIG 6 month ago.We were at the hospital; he was recieving the teraphy for 2 days - 12 hours a day. DS had a very bad headache, nausea and vomited a couple of times and fever..but it was not so scary as I tought it would be. Ibuprufen helped him, so, it was not so bad. All the side effect dissapierd when he was finished with the teraphy.The next day, everything was absolutly normal, he went out to play with friends after 2 days. No side effects ever again.

hello, it has been a while.. I have a question. WMy ds 12, had his 1st IVIG 6 month ago, and things are definitly better than before IVIG. He still has some tics so we will most probably recive a 2nd IVIG in 2-3 month. But, he is now in 6th grade, and he was soposed to recive hepatitis B vaccine 1 month ago, but we skiped it. i told them he is sick. I was thinking about not vaccining him at all, but, I'm also aware that he can get Hep. B from IVIG. So, not so shure now what to do? Do I skip vaccine and pray that he will not get hep. B after IVIG; or vaccine him, and than wait for 1 - 1,5 year for another IVIG? (1,5 year because in our country hep. B vaccine is split in 3 doses - must be 2-3 month between each dose; and I know that a person can recive IVIG only if it has been at least 4 month after vaccine). Pretty confused with all the info on the internet, so, I belive and hope that some of You will know what's the best. Than You for Your answers

Dear stivmommy, offcourse, I know where Albania is,we are not so far .. We didn't travel to America, we did IVIG here in Croatia, because in our country IVIG is prescribed as a standard medicine for some other clinical conditions. It it usualy prescribed in much, much smaller doses than the one we have recived, but we went to our capital city - Zagreb where the bigggest hospital centre is, and he recived the full dose there. But, the thing is that we have recived a letter of recommendation from an american doctor; and than we gave this letter to our pediatrician and he approved the procedure.(it was absolutely not as simple as it seems now, we went true a lot of fighting and persuading..and finally got the approval! I must tell You that I also belive that we are one of the firsts in our country who did IVIG for pandas, because in our country the problem is very simmilar - no one knows anything about it! So,I don't know the procedure in Your country, but, I belive that the docotrs there have also IVIG; but,they are using it for some other conditions just like here. So, maybe You can try to ask in Your hospitals somewhere - maybe in the bigger hospital centers, and see if they have IVIG.In our country IVIG is used in treating some serious autoimmune diseases. The doctors at the hospital were pretty sceptical about it, but they didn't turn us off.. Also, I think it would be possible to do it here in Croatia, but I don't know how this works..it will probably need to be paid, but I can ask if You want if there even is a possibilitie for this. I don't know again how is it in Albania, but in our country if You have a disease which can not be treated properly in our country, our medical insourance is taking some of the coasts if You are going to some other country. It's too complicated and You need like tons of documentations ecc.(we didn't recive their approval). This is very difficult to achieve, but some have used this allready in some sever cases when it was a matter of life and death. And I would like to ask You one for us very important question. You mentioned dr. M.P. in Milano? Am I wright? Can You please send me to my pm full name of this docotr? Please, be so kind, because I think that we went to the same doctor inMilano, but he told us that he dosen't belive in PANDAS, and that my son has Tourette; so, I'm , a bit confused wright now..How did You come to this doctor? Would really appreciate Your answer. Hope I was a little bit helpfull, and for all other questions do not hesitate to contact me.. looking forward to Your answer,

so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years.. Same here - my son had sever vocal and motor tics at various times over his life, the worst at age 11, which we treated successfully with antibiotics. But at 15 or so it cam back, different but definitely Pandas. IVIG definitely helped immediately - but not completely and he did backslide some. Did the second one six months later, again much better, not 100%. Today, he tics a bit but nothing debilitating. He'll be on prophylactic abx for a long time, and we test once in a while to see if anything new is on the radar. Did it help your son? I wish I'd known to do it back when he was little. hope You'we raed my answer.. and I wish too I'd known to do it back when he was little..

we only had 1 IVIG, 4 month ago. His symptoms started at the age of 6, so we were diagnosed very late. I'm still not shure if it has been helpful. It definitly didn't help with ADHD and ADD; OCD is also worse than ever; and he still has a lot of different tics (motor and vocal); BUT; I would say that before IVIG his terrible screaming tic was lasting for 3 years and has never stoped whiteout Orap or Risperdone. Now, this horrible tic comes and goes, it's not that frequent as it used to be (he was screaminh every 2 seconds). In some points of life he was even unable to speak properly becuse of the scream. Now, he screams betweeen 10 -15 times a day - so, it is better. He still has other smaller tics, more privat and easier to tolerate. So, I would say that we are gonna need another IVIG. We never checked for any other infection (Lyme; bartonella ecc.), because here are simply no doctors qualified to know something about pandas possible andconected infections. And, yes, if necessary we will repeat the IVIG therapy.

so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years..

hello, our ds12 had the symptoms since he was 6. Dr. K.told us also that he has 85% of chance in getting much much better with 1 IVIG only.It was doubting for us too, since he had long history of symptoms, and they were really severe.He was absolutely dissfunktional in some points of his life. We did IVIG 4 month ago. He is doing better in one way - no more loud screaming tics, but he still has a lot of differenet but, more like privat tics, and he definitly has more OCD and ADD and ADHD than ever. BUT - he can funktion like this. Dr. K also told us that a second IVIG can be done within 6-9 month after the first one. It seems like we're gonna need it. 2 weeks ago, his loud screaming tics were back; and than I gave him full dose of Augmentin (thank's to the people on this forum) and it's much much better now. So, by my opinion, I would deffinitly give IVIG a try, and if neccesary we will go for a second one, even do; I'm still not so shure how much helpfull has it been, because we have a very confusing situation with tics come and go..but, I will open a new post with some questions about it and hopefully find some answers here. Again, it's worth traying.

thank You! You have helped us too!!We have the same problem (12 yo son); and it's so frustrating for both of us. And here in Craotia they have so much homework, that it takes us up to 5-6 hours to do things which can be done in 1 hour. So, it's really motivating because today was the day when I tought that it's time to give up..To let him not to learn or do homework because it was a battlefield! But, I won't!