kleek3 Posted August 29, 2012 Report Share Posted August 29, 2012 Hello, My name is Kristin and I'm so grateful to have found a place where I can once again use the common bond to make it thru tough times. You see, I'm not a newbie to msg boards...I used another site similar to this one to make it through my DH fight with Cancer. I'm happy to say almost 6 years have passed and we are doing very well. Cancer FREE as of last year. This time around, I post for my DS4 who at this time is in the process of being dx with PANDAS. It all started in April this year when B started a shoulder roll. I thought his shirts were too big, so I got out last years smaller size and that didn't fix the problem either. We went on a family vacation shortly after the shoulder roll started and he just wasn't the same B. Upon return, he was dx with Strep after a week of high fevers and a miss dx in the local ER. We treated him with antibiotics and then the real changes started to take place. Throat clearing was nothing new. He had been doing that for a year or more. The neck rolls, the frequent urination the repeating of words, Mom, Mom, Mommie, the nose sniffing, finger and toe nails peeling off. The list goes on... I took him to the local Peid and they said he will out grow this. My DH and I KNEW there was something off. You see, I could learn to deal with the Tics. It's the behavior side of the PANDAS that seems to knock you off your feet just when your least expecting it that we are suffering with right this minute. I asked the PA about PANDAS and she followed up with the DR and they said we will refer you to a Neurologist. We saw the local Neurologist and at the same time I was on a mission to get someone to listen to what we had to say. This child was clearly not the same as he was in March of this year, and no one can tell me it's just going to miraculously go away. When we saw the Neurologist, he did in fact say that going to Yale to see Dr. L was perfectly right. AHHH! Finally, someone could see what we as parents were seeing. After a long wait, with symptoms coming and going, after being on Penicillin for almost two 1/2 months now...we head East to see the specialists. In the last week, the behavior issues, ie. hitting, flat out destructive behavior countered with baby like whining has started to rear its ugly head. Our DS pushed Daddy to his limits this am and I'm holding my breath for a possible solution. Some days I feel like the only thing we say to him is NO, STOP, & DON"T! Choices B! Let's make good CHOICES! I fear that his little brain in his spaced out eyes sometimes just don't know HOW to make a good choice. The clinic coordinator at Yale has assured me after the countless pages we have filled out, the videos we have shared, and the episodes we have explained have us in the right area. I pray that there is a solution. I pray that in less than 2 weeks we may find a light at the end of this crazy and multi colored tunnel! Maybe I just needed to vent. I thank anyone out there who may hear...until next time. Link to comment Share on other sites More sharing options...
Missmom Posted August 29, 2012 Report Share Posted August 29, 2012 Good luck, and I am sure you will get answers to some of your questions. I know how desperate you feel. We have all been there otherwise we would not spend hours on the Internet looking for answers. This forum is wonderful, with lots of parents who are here to try help each other. It would help you to also have a local family doc. or pedi. on board to help you when you can't get to dr. L. You could check out some of the lists of treating doctors by state if you feel like you might need local help. Also remember to keep copies of everything, labs, medications, etc.... Glad you had support to help you and your hubby get through his illness as well. Good luck. Link to comment Share on other sites More sharing options...
junkyardjean Posted August 29, 2012 Report Share Posted August 29, 2012 My dd is also 4 - I agree with the behavior being the challenge for us too at this point. Sometimes DH and I sit after she goes to bed and strictly discuss behavior - is it the PANDAS, or the fact that she has always been spicy and she is 4 years old. The behavior increase with other symptoms (urination, dilated pupils, tics) are what we have found to cement the pattern for us. "Regular" behavior management techniques do not help during the times of brain swelling for us - it's like she is not even home. We have flipped into more of a prevention model - if she is having a tough time, or has had multiple exposures (as she reacts to most viruses & Bacteria at this point), we literally just stay and home and try to contain. People in the middle of Wal-mart have too much advice to give (most of it useless as they don't realize her brain is swollen!!!) I have found it too stressful on me to be told I'm a bad parent because she is freaking out due to bright lights and having a tantrum, when the next week the same person will say what a wonderful child she is (when she is out of her flare-up of course...) Link to comment Share on other sites More sharing options...
smartyjones Posted August 29, 2012 Report Share Posted August 29, 2012 i am glad to hear you seem to be on track fo rmedical help. . . i found much help for the behavioral side from Ross Greene's The Explosive Child. He also has a website called Lives in the Balance. the book basically jumped on the shelf at me one day in the library after a particularly trying day that ds had been opening the car door as i was driving. we have definitely seen the most success from medical treatments, however, this was also very helpful. I'd say not so much for qucik changing ds's behavior as for giving me techniques and ideas of how for me to act and react with and to him. it allowed me to be invovled with him without being dragged into the tantrum. it's a long process, but ds now has some pretty good problem solving and negotiating techniques -- still very much needs to be guided in it but he's on the right page. Good luck. Link to comment Share on other sites More sharing options...
kleek3 Posted August 29, 2012 Author Report Share Posted August 29, 2012 Oh! You have no clue the tears to see the replies! I now know we are not alone. I thank all three of you from the bottom of my heart for taking the time to hear me and respond. I certainly will keep you all posted. Thank you, and best of luck to you as well! Link to comment Share on other sites More sharing options...
1tiredmama Posted August 30, 2012 Report Share Posted August 30, 2012 Welcome to the forum! You will learn so much here. I second the recommendation for The Explosive Child. I think you are doing all the right things for your son. You will get your sweet child back. I have no doubt! Link to comment Share on other sites More sharing options...
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