heathers_hounds

ok well talked to ped nurse...they had talked to Dr. Evans who works in same office as Dr. Zinser.. she said the that Dr Evans suggested maybe sleep study... When I talked to new patient info at Children's medical, she said Dr Zinser did not work with PANDAS..?? I told her I had a few referrals from parents w kids w PANDAS and they referred him to us. She said he works with little ones, usually under 3. Confused. Also new appts were scheduling into January. Is it really going to be that long before my child is seen. Now what? I am not clear on the sleep study.. We are not really dealing w night terrors anymore, it's leading up to sleep, when he has issues amongst other PANDAS symptoms.

so I still haven't heard from our ped. I called and gave them Dr Zinser's info hoping they will refer there. He is a ped neuro. Our ped was thinking an immunologist would be the route to go...Should he see both kinds of Dr.? Or do I just start w whoever he refers us too? What's normal protocol? Not diagnosed w PANDAS, just concerned that's what it is..but how to find out if it is something w immune system or if it could be Lyme or something else where do we go?

Thank you! I was just in the middle of calling around, trying to find out where to go and how to go about it. Now I feel ALOT better with the local contacts on here. Haven't heard from my pediatrician so I am assuming he is having trouble figuring it out as well. What little I am gathering, is when referral and records are sent to specialist, they review and then make appt.. This taking weeks. Is this what to expect, when we find the right place TO go?

THANK YOU! I don't know what I was thinking but in my topic description, I listed my son as 22 mo. WRONG He will be 3 in July... So is that a good age for the bloodwork or still questionable?

Thank you all so much for all of your words! I felt so much more confident about the situation after all the info given here. It was nice to have things all on one page to get us started. I must be crazy, I listed my ds as 22 mo in topic description! He is actually 34 mo. will be 3 in July! CRAZY I did state that later, but still might cause some confusion. anyways, had appt with pediatrician today. Culture was negative. Dr took my info on PANDAS to his office and went thru it and looked online. He came back in and said he will get w Cooks Children Hospital and see where to go from here. I don't think he really knew what to do. He said I guess it will be an immunologist, but will figure it out. I told him I had seen online another parent saying they go there for Pandas but didn't know who the Dr was. Suppose to let me know something tom. The Dr was sensitive and did not think we were over reacting. I hope he will continue researching and will be able to help others in the future. I hope I AM over reacting and we are not dealing with this. I hope he finds a Dr that REALLY understands PANDAS and can help determine if it is or isn't PANDAS with our ds, and if not then whatever it may be. I guess for now, I will start searching for info on Doctors in our area. I can not express how appreciative I am for all the replies! what I am a little concerned about is our timeline of things. Major issues only started when he was sick with the strep and scarlet fever. Now after researching, I wonder if some things that happened before are related to PANDAS as well. Like period of time when he would get mean at night when he was tired. And the CLINGY stages, sometimes major, sometimes not so much or at all. 1 because of him being sick off and on so much. 2. because it was all so out of character for him I have read that if dx and treated early enough, it could be a one time thing.? Is this correct? Could it be possible? or do you always have to worry about it? I also find it very frustrating trying to explain to family members. Some supportive. I left my moms very upset due to the fact she won't let it go, about don't you think it just normal toddler issues. Well I HOPE AND PRAY IT IS, She has never seen any of what we are dealing with. She has only seen a different look in his eyes. I won't let it stop me from getting to the root of this. Maybe it is and he just don't feel good. But I'm not taking that chance. I'm sorry, maybe TMI. I just haven't been able to think or do much else since I came across the symptoms of PANDAS. Heather

Thank you so much for replies! As for the antibiotic..we are finished with the 2nd one as of yesterday. Should I ask for another throat culture tom? Any bloodwork? The night terrors were more when we found out about strep and some before, The last 4-5 nights I think?, It has been more about before he goes to bed, when things start going down hill. He has that wide eye look then as well. This is so much to take in and I appreciate your support. I have already requested ALL medical records and hope to get them before we head out to ped.tom. I pray tom we well know if strep is cleared and where to go from there.. I just want to be heard by the DR and not dismissed and finding out later something should have been done! He can go from being his self to mad real quick. Thanks again

let me just add, that as I read stories of others, I am just like OMG because some things sound so familiar. I have a horrible gut feeling and I can't keep researching. Others tell me I am bringing too much into this. ugh Oh and my son also wore a DOC Band due to brachycephaly another thing is my almost 14 year old son has this tic like thing when he plays baseball and sometimes during other sports, mostly baseball, same kind of movement and clenching every time. We never really thought of it to be a big deal. I haven't noticed it this year yet but have in the past.

OOOPS first, I must be out of my mind...I listed my son in topic description as 22 mo.. He is 34 mo. Will be 3 in July.. Can't figure out how to change that... I don't even know where to start... A thank you to all who have shared info, stories, help to others on this forum. Even if this is not what we are dealing with , I will pay it forward, spreading the word so more families know about this. I have only known of PANDAS since Friday, and I have been reading everything I can here and there for answers. I am one to research everything online but I am so lost on this one... I will share my post out of desperation on another forum that lead me to PANDAS.. then share our symptoms(I now realize might be symptoms) after reading on PANDAS Not sure where to start..strep throat, scarlet fever, mental, behavioral side effects of amoxicillin My son who will be 3 couple months, was at er last thurs w diagnosis scarlet fever and strep. Put on amoxicillin (which he has had before). Since starting meds he has had very strange episodes mostly towards night time and waking up having one. Like OCD kinda stuff, saying or crying the same thing over and over for like and hour. Being violent, confused.. wanting meto hold him but yet hitting and kicking me at same time. We put pjs on and he crys forever take them off let mommy do it or visa versa w daddy. want to go to his room then back to couch over and over. Just examples of some of the episodes. He looks different in his eyes when he wakes up doing it. He has excema and is a sensitive little guy. Always pleasantly good, not mean ever. Except a few times hear and there like at nanas when now after reading and being enlightened a little on red dye 40 I wonder if that might be an issue for us. All she ever buys is red stuff. I am wondering if we are dealing w amoxicillin allergy or red dye 40 allergy or combo. or what. very concerned parent. My sweet little boy is not his self. Took him to his pediatrician today, throat still very red. I stopped the amoxicillin yesterday when I looked up side effects bc of what we have been dealing with. He was given a Rocefin shot and antibiotic ceclor to start tom. Sent to do blood work to see about infection and other test. Me and my MIL dealt with an "episode" might have looked like extreme tantrum to others for about and hour getting in car and to clinic for blood work. 2 grown men, me, nana, and a nurse could not get the blood drawn, they sent me to go to hospital, wasnt' gonna happen, asked if we could come home( hour away) do blood work here w me and hubby tom. OK Well now I'm realizing tom is Fri, and I don't know what will happen w results bc dr close at noon and then weekend. Freaking out! don't know what is going on w my baby or what to do. I have 3 boys 17, 13 and 3(in July). Dr said let's get him well first and see him next thurs and then we can talk about the mental stuff..bc he has reason to be irritable. It's past irritable! Something is not right...didn't think it was a reaction to meds or dye bc of no hives but didn't really say anything else. I am concerned about the strep in his body for no telling how long now. Now not sure if he we will have results till monday on how the infection is in his body. God I hope not. He was sick weeks ago and on antibiotics, wonder if he had strep the whole time bc coulture wasn't done that time. He hasnt been eating good or none at all for a while. Any advice or similar stories on reactions to amoxicillin or red dye 40 or strep and scarlet fever would be much appreciated. or anything else related. Thanks so much With info given, someone suggested PANDAS My son is SO smart and sweet and funny. Now we are dealing with issues suddenly never experienced w him. A whole diff child when he is having an episode, which tends to be at night before bed, during the night, or waking up in morning or before nap time (if he takes one). extreme anger, different look about him(the eyes of terror), very clingy, confused of what he wants, nothing makes it better. the night time issues have been pretty bad saying same thing over and over very upset for like an hour. It's like he isn't really awake. last few nights he has just ran to his room mad and laid on his bed wanting nothing to do w anyone and falls asleep. when he wants me to hold him and he keeps hitting me, it is a repetitive movement of how he hits over and over. I will say we have dealt w him being mean in the past when he is tired but only then. I now wonder if we have been dealing w this for a while and the recent strep, scarlet fever made it worse w other sypmtoms. He has been sick quite a bit.. when he was only a couple of mo old he got bronchulitis and has had it a few times since. He has had staph infections from mosquito bites(never actually tested for staph but thats what was dx. I have 2 older sons who bring everything home from school and the nasty staph infested weight room. On Easter, we got home that night, I noticed what appeared to be a mosquito bite, next day looked like a cig burn. so took him in afraid it was a spider bite, no real dx just put on meds.. I have requested all records from our local family Dr and ER, which I will take to his pediatrician tom. also prior to the confirmation he had strep and scarlet fever, I took him to our local Dr for sore throat and cough, she said possible strep and treated for it but did not test. I wonder if he has had it all along and that is why it turned to scarlet fever. I did notice him blinking his eyes 1 or 2 days a few times, he said something was in his eyes and I thought it was strange it happened the next day. I just am not sure about exact details on that bc I wasn't aware or looking for anything like that at the time. No one else here, says they noticed it. With the 2 older very busy boys, my youngest has stayed with Pa and Nana regularly since he was an infant. Within the last 6 months, we went through a period of him ALL OF SUDDEN not wanting to be away from me and my husband at all, would not go there with out extreme melt down. That subsided. He has been very clingy to my husband when he is home, wanting him to do everything, change clothes, diapers, bottle whatever it may me. He HAS to do it. Now he is clingy to us both. Or like at bedtime getting pjs on he wants me to, then dad to, then no one can. or we get them on only for him to rip them off. Or who can get him out of bath tub and dry him off. Everything has turned into a big deal. We were almost thru w potty training, no accidents in day time, that has changed...He is still taking a bottle some at night..I know I know.. but he doesnt eat right some days not at all so we would give in and give bottle to him. He actually threw it at me and back on counter very hard bc he wanted his daddy to come home and give it to him. He took the amoxicillin for 5 1/2 days, I looked up side effects and thought that is what might be going on, went to ped and he switched it to ceclor after shot. finished that yesterday. He stayed at my inlaws the night before last and they say no melt down, yet here at home last night we had one. The night before he stayed w them, he was so angry and I had changed his sheet and he wanted it off and old one back on. I left him alone to throw his fit, he ended up ripping the sheet he was so mad and persistant in getting it off. He has been in quite a mad mode today as well. I asked the ped nurse if they have heard of or seen PANDAS and her answer was for me to gather up info and bring it in with us at appt. I do not know where to start. What info is best to give him? What tests can I ask for? I have family who haven't seen what's going on asking if it could just be the terrible 2's or the meds or him just not feeling good. Maybe some of it, but my husband and I know our child and something is not right. I am sick to my stomach over this and so do not know what to do or how to go about doing it. I do not want to over react but I also don't want to ignore the many signs. I have been joking for a while wondering why my child does not eat or sleep anymore, before this strep episode. We have been trying to be patient with him and not punish or get on to him. My inlaws think he is spoiled, this is beyond that. I think she may be worried about things but doesn't want to admit it. She text me today about gluten allergies.? She sees the whole things have to be done a certain way and the clinginess or picking one person who has to do things for him. She has seen the anger at night. She was with me at the Dr and experienced the HUGE meltdown after shot, going to try to get the blood work done. He also has complained about his back hurting..like by his kidney, dr ran a cbc and said he would check kidney too, all results normal. My husband is not one to believe in alot of this kind of stuff, but yet he knows something isn't right. ALL I need is for our ped telling us tom. bc he doesn't know, that he doesn't think it is Pandas or anything else. My husband will prob want to drop it and say, see it was the med or something. I know this was long and I am still prob forgetting something,and it may not make sense, but it is a start for me. Any advice, info would be greatly appreciated. My sister told me to ask for a referral to ped neuro. I need one in the Dallas, Ft worth TX area. to ask tom for a referral. I have been in need of a hysterectomy for months now, getting cancelled due to flu and me cancelling due to kids stuff going on. I was about to reschedule and now I don't know what to do. I have to get my baby boy back to normal. I don't even see me being able to, untill then. I am tired and stressed and IDK if I am retaining alot of what I am reading.