bgbarnes

This may seem silly but can people please describe what they mean by regressive behaviors. My son has been baby talking almost all day and definitely not acting like an 8 year old- except when he is playing video games- he is normal. Is the talking alone enough to be considered regressive behaviors? He is super sensitive and finally had his meltdown about 40 minutes ago that I knew was coming for hours. Just trying to get a full understanding of what other people mean when they say that. Brandy

I always had him involved in sports knowing he needed to do something active everyday but his behavior and not being able to keep his hands to himself caused so many problems. He dropped out on his own choice of everything in the Spring but now I am looking at these activities that will address his sensory needs that it may really help! He is so excited about a punching bag too- then again what little boy wouldn't be! Thanks again kimballot- it really helped hearing the advice and suggestions from you!!! I am really excited about working with the school to help him win in the classroom- they have a sensory room at the school so that might be a good resource to learn about!!! Brandy

Well I am not surprised after reading out of sync child- ( I think kimballot was the one to recommend OT consult)but my son was officially identified with SPD- he is a crasher and a banger sensory seeker- it was if the book was following him around when they identified him. Part of me is ticked that all of the social skills groups, play therapy, biofeedback etc....NEVER PICKED UP ON IT- then there is the psychologist that told me he was severely impaired with ADHD- and my Mommy gut told me that is not it and keep looking- since that declaration more than one Dr has said he is not ADHD- the OT said he is NOT ADHD either.....it is all sensory related.....his muscle tone is great and she thinks we can manage it at home just providing the sensory outlet- but she well help me get the school trained to help him.... We are going to sign up for gymnastics and karate....he will love it! I know many of the kids are SPD here- so any advice would be greatly appreciated! Brandy

I am so glad you asked this because I am not seeing the results I hoped on our long dose of zith. Yes there are improvements but then it is as if something have gotten worse- he also had Myco so I am wondering if some of it is Herx. I am REALLY tempted to ask for steroid burst. Brandy

Keep us posted ! I am from Dallas(Plano) and there are quite a few of us on here from the area. I don't know anyone who sees the Doctors in FW- I use doctors on the list that the others have given you. We are still going to consult with Dr K to have a PANDAS expert on the team- it would be great to have one here in Texas- maybe enough of us will inspire someone to pick it up as a specialty!! Brandy

Tylermom- I am in Dallas- by your name can I guess you are in Tyler? Or within a few hours drive of Dallas- there are Doctors here that you can get bloodwork done through. I will PM you. Brandy

Dr. Kovac was cute! very true!!!

He is in Lenox MA. My friend went there today ( from Texas because no one here could figure out what was wrong with her) and one of his books mentions PANDAS. Since she is the Godmother of my ds she asked if he treated PANDAS patients and he answered yes and has had good results with children. I have not seen his name mentioned so I thought I would ask the question if anyone knew of him. Brandy

When was your appt. We are with Dr. K right now the 25th..A Dr here is willing to start IVIG but I wan the guidance from Dr K. Keep your apt with dr.k he IS the best. Thanks- I will! I just need to do something- we met with a therapist that specializes in OCD today and i am beating myself up- I had no idea the extent my ds had it- he has hidden it SO WELL all these years and now that I know it is all I see. my heart is breaking. I videoed him for about 5 minutes this am and I can't tell what is a tic and what is a compulsion but it is pretty constant. I will send clips to Dr K. I am tired of being a basket case all the time. I need to do more and I jsut can't right now-I don't do well with can't..... Brandy

When was your appt. We are with Dr. K right now the 25th..A Dr here is willing to start IVIG but I wan the guidance from Dr K.

I understand your tears- Congrats on pushing to find the pieces of the puzzle! Brandy

I want to throw up.....I have been waiting for weeks for our appt next week- have been gathering final details of information etc... called to find out where to send the check and they said- oh we need to reschedule he is not going to be available now....SERIOUSLY- WTF! Do they have any idea how we wait with every ounce of patience we have for one of these appointments? I want to scream- in reality a week is not that big of deal but right now it seems like an eternity! Brandy

sending you a PM! Good luck! Brandy

Mark- Have you read Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies? It actually has PANDAS in there as well. Dr Bock actually puts ADHD on the ASD spectrum because he believes they all have the same root causes- basically something going on in the body which creates these issues ( over simplification but I am short on time tonight and wanted to answer you). I highly recommend the book- Brandy

I just went to LABCORP for ours and they did not have any issues. Brandy

hi brandy. just from our situation, i haven't doubted pandas for my son b/c he had sudden onset, high titers, positive culture and 100% remission with abx. he does have times that he may be upset with a situation and he may have a more normal reaction, it's just a 6-yo getting upset. when he does something like you describe, i know it's due to his brain not functioning correctly. i highlighted the things in your post that could be like a scene from our lives. once i read in an ocd boook, 'it's either yes or no and neither will suffice'. that's how my son can be with decisions, and then cannot accept me making them either. i remember in an interview, sammy said something like, "once, when i couldn't accept help from someone, i wrote on a paper, 'help me.'" i don't think the scene you describe is normal defiance. my son has recently been diagnosed with lyme and toxoplasma gondii infections as well. i've recently told some friends who have looked at me wide-eyed, if your kids are doing something you think is not normal, it's probably not. Thanks- I get so paralyzed when this happens! I don't wish this on anyone else but it makes me feel better to know I am not alone! This morning he was the most loving wonderful child- he made his bed ( without asking- NEVER HAPPENS) offered to make his little sisters bed- and did it by himself. Fed the dogs, got dressed on his own, ate his breakfast, put his dishes in the sink, brushed his teeth when asked, put his shoes on and had lovely conversations with everyone in the house asking what other chores he can do when he gets home....... We got to school/camp on time and was just a joy. I guess this might be some of the sawtooth recovery- I was afraid the antibiotics were not working....God this really SUCKS! I think I need to read more about OCD- it seems to be more prevalent than I thought...THANKS EVERYONE!!!! Brandy

If the moderators can delete- it is obviously too early and I need coffee- The originally was supposed to be a reply to another post

OOPS

OMG! I know this child! When my ds was 5 I took him to get a psych eval b/c I was afraid of ODD. My ds has the exact same behaviors you are describing- had them tonight if you see other my post. She told me it was not ODD b/c it was not pervasive- but said he had ADHD- I did a QEEG later that said he did not and 2 other Drs said no to ADHD b/c when he saw them he as calm and could focus. Looking back it was probably PANDAS and he was probably in exacerbation when the 1st eval was made. I am searching for the answer to the same question- is it PANDAS or is it something else? Tonight was one of those nights I looked at my ds and thought maybe it isn't PANDAS and there is something mental wrong here- I don't know how to handle him when he is like that-I have tried a million different approaches and NOTHING works! Brandy

She is my brothers wife-so I have talked to my brother and we are fine. If she saw my ds this evening she would know something is wrong- he had a major meltdown! From historical reference I know most people would want to whip his butt or deliver major consequences and I know it just does not work or make it any better....I just want a healthy little boy!!! After tonight I don't care what she says- I refuse to deal with her and I dare her to say something to my face- I have bigger fish to fry!

My PANDAS ds came home from his Dad's and he was pretty worked up- according to his Dad he spit in his face when he told him he could not play video games earlier in the day. However my ex took him and his sister to the waterpark for the day. He came home saying he wanted to stay with his Dad. He did not make up his mind fast enough so his Dad left. Then he threw a fit because he wanted have his Dad come back and get him- irrational and defiant. Then it was time to get ready for bed- he argued he was not going to bed- I asked him to take a bath b/c he was worked up he refused. Then I said you have 3 options shower, bath ( with Epson salt) or straight to bed. Your choice. I walked away a number of times he would cry asking for hugs and for me to return to only start arguing with me again. He would argue he was going with his Dad. Would say he is not going to camp tomorrow if he does not go to his Dad. You name it he argued. I gave him 5 minutes to make up his mind over bath/ shower/ bed- I came back to no decision- he milked it for 25 minutes- unable to make a decision and would freak if I tried to make it for him. I was ready to put him in bed in his clothes and he said he HAD to take a bath. I asked what was so hard about making a decision and he was crying and was not able to tell me. I finally got him in the bath- because I know from history that it would be shorter to get him in the shower/ bath than straight to bed b/c he would talk about needing a shower or bath if we just went straight to bed. When he was in the bath I went to cool off in the other room- after 10 minutes or so I came back after a few minutes I said he has 2 more minutes he freaked said I always give him 5 minutes after he asks to get out. I said fine 5. At 5 minutes when I went to get him out- He freaked plugged the drain up. cried when I pulled him out, jumped back in the tub- said he needed the water. I honestly admit I cried a couple of times b/c I was so frustrated and miserable. When drying him off he begged to get back in the water. My husband came in with the video camera and he calmed down got dressed and went to bed. Before going to sleep he asked for me to snuggle until he fell asleep and before he fell asleep he said once again- I am going to my Dad's. I left before he fell asleep but snuggled longer than normal. Oh- he scratched the ###### out of his sister at the water park today too. I just don't know if this is just him being difficult or is it part of PANDAS? He is on day 10 of zithro of a 30 day dose and I just don't know if it is doing anything. This was not anywhere close to one of his bad rages- he has turned over furniture before- but it was definitely irrational and defiant. Thoughts? Brandy

Lots of positive thoughts and prayers going your way! May your IVIG be the healing you need and deserve as a family! Look forward to hearing about your success!! Brandy

I think you're exactly right! Makes them kind of pitiful, doesn't it? That is EXACTLY what my parents say- that she helps all these people to get the attention herself. I feel so free that I finally have a reason- supported by my family to stay away! Woohooo!!!!

Thanks everyone! I know you would know how I feel. I am lucky my parents live a mile away and are 100% supportive and are ingrained into our daily lives. I probably talk to them both 3-5 times a day and rarely go more than a couple of days without seeing them. When the Doctor first told me look into PANDAS syndrome I was emailing them on my phone before I left the Doctors office and they started doing the research before I got home. I am really blessed! My parents see my family a lot more than my brothers- they live about 45 minutes away- so I would not want to be a part of my SIL trying to use me as an excuse to not see them. My parents basically get to see my niece 16 and nephew 13 on Holidays and special occasions. My parents attend a couple of Games and dance recitals a year (when they are told about them) but that is it. They are an integral part of my kids life and since I am divorced from my kids Dad my kids will be with him anyways on Father's Day- so this stressed out PANDAS MOM is going to have a fun birthday next weekend with my husband and relax! Maybe go see a chick flick, mani pedi- do something form me for a change! My Dad gets to see the other grandkids and avoid a conflict. They are pretty sick of my SIL too....so it will be interesting to hear if anything comes up! Ironically- the last time we were together and ds came up she immediately started to talk about her nephew3 who really has problems( because mine doesn't)- he refuses to eat- so much so that if he loses more weight he will have to get a feeding tube- so her sister finally decided to do something about it (can I point out that none of us would wait that long to get help but that is another story) and they were going to do an endoscopy the next day- the results are that he has a little acid reflux but that is it- nothing to justify the lack of interest in food...I guess she would not really like the suggestion of him getting a strep test....however my parents do know that PANDAS can cause anorexia issues and are armed to provide info if it comes up next week! Thanks again!! I love this forum! Brandy

I really need help with this one...I found out that my SIL thinks due to her years as a teacher( this is not a dig at any teacher out there but she is not a medical doctor!) that she has seen many parents make things up as an excuse for a child's behavior and she told my parents that I need to stop looking for a reason and just deal with his behaviors..... INSERT REALLY LOUD SCREAM HERE!!!!!! Oh and she has been saying things to other family members too. First I can say I am not really fond of her for a number of reasons but that is not the issue here. I have had to bite my toungue for years when she makes little digs at me every time we get together for my parents sanity. My SIL presents herself as a saint. She walks for cancer, and any other cause someone asks her too, reads caring bridges for people she does not even know and asks for peoples prayers, she has invited kids to live in her home and provided them clothes and shelter when their parents were not able -but when it comes to her own family- I must be making this up. It is infuriating. Oh she also waited so long on her son's severe stomach pain and fever that his appendix ruptured after 2 days at home trying to manage it instead of taking him to the Dr (and the $20 co-pay should not have been an issue)...But she is a saint and a good mom and I make stuff up to make excuses for my son's behavior. Considering she was crying poverty to relatives when my brother was making a very nice salary that had him in the top 5% of the country- let's see who makes crap up...... IF she only knew how much work we have done on my son's behavior she has no right to even say that- I have been working on it for 5 YEARS! I am one of the lucky ones on this board- A Doctor brought it up to me- not me bringing it up to them. More than one Doctor agrees it is PANDAS- so why is she being such a B*TCH?????? I asked my brother if they needed to see the research papers, emails with Doctors and the Cunningham test and abstract to understand what we are going through. Have they seen my son when he starts touching everything equally on both sides? ( At least I understand why he has never been able to keep his hands to himself even when asked) Have they seen one of his rages? Have they seem him hysterical when he repeats things over and over? Have they heard my 8 year old refer to his need to touch things in patterns as his addiction- HOW sick does she think I am to make this crap up- who in the world would do that? SO I have finally drawn my line in the sand- my birthday is on Father's Day- I have enough stress in my life that I don't want to see or deal with her- especially on my birthday. So I told my parents that we will see them on Saturday for Father's Day and we will not see them with my brother and his family on Father's Day. I am not going to spend time with her. I can't guarantee I would keep my mouth shut and my Dad actually said he can't guarantee if she says anything that he could either- I pretty much hope she says something so my Dad can blast her. I am tired of squashing myself to keep the peace. I only choose to have loving supportive people near me. I would not have her as a friend so why would I spend time with her at a time like this. In many ways the decision is so freeing- I always got a knot in my stomach knowing we were going to spend time with her- what would be coming next. So any additional advice on how to handle this would be appreciated- for now I am avoiding a direct conflict but if it comes down to it- how should I handle??? Brandy