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Mumofthree

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  1. Girl, 12yo began to behave strangely in July this year, she first started to sleep a lot and then started the symptoms of decreased concentration, disorientation, but the whole thing was not too strong, and the parent attributed it to fatigue from the end of the school year, the end of an exhausting competition season ( practicing skiing, 120 days a year on the snow) and primarily the onset of puberty (19.5.2003.) Although not yet reached puberty when looking at those standard indicators ... All these symptoms stepped up this summer, when she forgot the dog she took out for a walk, she began to talk completely incoherent, nothing was heard, and completely lost interest in things she really loved before( iPad and phone). Finally with the suggestion of a friend neuropediatrician she was taken to hospital. They made there all sorts of possible tests and all were negative so they tested also for NMDR and sent it to Barcelona for testing. Although no findings that would indicate any disease, except for a little bit in the cerebrospinal fluid, with which they made working diagnosis: autoimmune encephalitis. They started to treat initially with antibiotics and Virolex and after that corticosteroid (Medrol ). The situation, primarily after the start of corticosteroid therapy, rapidly improved and 14.8. she was released home. They were told to constantly reduce dose of corticosteroids and she came to 4mg every second day. On Saturday, 12.9. again began talking incoherently and it was clear that it was a recurrence. Yesterday morning finally came the long-awaited report from Barcelona(NMDR), ​​which is negative, and therefore the doctors excluded the possibility of an autoimmune disease... The doctors do not know what that could be but I wanted to ask you if any of you had any similar story They are my good friends and I am following this forum for my DS8. Is there a possibility that could be PANDAS/PANS or could it be something else....? Thank you!
  2. Jesam iz Hrvatske sam! Vi? Mozemo na pm? I tried to contact this girl from Croatia few months ago but she hasn't read the message yet...
  3. Thank you! I contated dr.K and he replied to me really fast. As I read you had good experience with him. He took my son and he will tell me everything what we have to do further!!!! I am so happy and I have a new hope now!
  4. Thank you a lot for the answer. I just went through all his medical papers and counted 9 strep infections in the last 4 years:( I am giving him fish oil but I am not sure if mercury is taken out...i can not find that on the label... I am also giving him magnesium, probiotics, beta glukan and some other supplements. We tried neurofeedback but tics started to worsen so I stopped. His doctor presribed him antidepressant but that is something I don't want to give him..... I really don't know what else to try.
  5. I am new in the world of PANDAS/PANS and am not sure do we belong here.... It's been year already going from one doctor to another and we didn't move a step further:( My middle son, now 8,5 years old, is now in the second grade. For more than two years he is suffering with various tics but mostly was one at the time. From August 2014 there is a vocal tick present and it is veeery loud. In addition, there is also the explosive behavior, sadness and anger and he has always been extremely good, cheerful and obedient child. He is also increasingly appearing fears, doesn't want to go anywhere without me, doesn't want to sleep alone in the room any more, because as he says, has nightmares. From last week he doesn't want to be in his room on the lower floor if I am upstairs... As a child of only 3 months he was hospitalized due to bronchiolitis caused by RSV, after repeated bronchitisis he was treated to a Flixotide next two years with diagnosed an unspecified asthma and strong neurodermitis incoming years. In the past years he had 4-5 times streptococcal infection and the last was in March 2014. We went to many doctors and everyone tells me a different diagnose, from Candida, Tourett, OCD....and different therapies from antidepressants to antipsihotics. I changed his diet about six months ago to gluten free and lactose free and his changed behavour is now much much better but the vocal tic has remained the same. We live in a little country in Europe and I really don't know where and to whom to go any more and who to ask what else can we do. Last week I did his blood tests and ASO is around 200 but he hasn't got strep.inf.since a year ago. I don't know if that is high and is there anything else I could do or try because I would really like to help him in some way:( Sorry for my english.
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