saidie10

This is GREAT news!!! Your little man pushed through today and overcame something that has caused him great anxiety. He should be beaming with pride as should you! Poor thing...thinking of him quivering with fear but trying so hard to push that in the back of his mind and stick it out. What a tough little boy you have there with a very strong spirit and drive to not give up!

LMAO!!!! You got that right! I am ready to board the return flight home...ready and waiting for my flight to be called...

Hello Everyone. A dear friend sent this to me and some of you may have read it before. It is a beautiful analogy of simply loving the child your have. I hope and pray that one day, all our children will be healed and we can all see Italy. However, while I am currently visiting Holland, I will embrace every moment and love every inch of my children's mind, body and beautiful spirits! -------------------------------------------------------------------------------- WELCOME TO HOLLAND - by Emily Kingsland I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I truly feel for you. You have come to the right place for friends and comforting words of advice and support. Hope you find the right good treatment for your son and his recovery is quick.

we are in San Marcos...I think that was your question?

I anxiously await Summer to get here. DH and I are self employed and I have made arrangements (it will be tough financially) to stay home with the boys this summer to keep them out of any summer care (both came home with strep several times last summer during summer care at their school). This summer will be the summer of healing! (*fingers crossed and lots of prayers*). Been back and forth today trying to find the answers to where we should go next to seek treatment. Awaiting word from Dr. R in Dallas. I also sent synopsis of both boys to Dr. L, Dr. K, and Dr. M. I heard back very quickly with this response from Dr. K: ______________________________________________________________________________ "What is going on in Texas? There hasn't been a week that somebody from Texas sends me an e-mail with suspect PANDAS case. In any case, I have reviewed your synopsis and your sons, especially William are TYPICAL clinical picture of PANDAS. Here's how I would suggest that we handle it: 1. Telephone conference FIRST. Make sure that your doctor there orders the following blood tests on your boys and results of these tests should be available at the time of conference: ASO titer; AntiDNase B Ab titer Mycoplasma pneumonie IgG & IgM Immunoglobulin Panel (IgG + subclasses. IgA & IgM). 2. If conclusion is reached that your boys do indeed have PANDAS, then they should come to Chicago for the treatment at later date. To make necessary arrangements please call my assistant tomorrow and she will take care of it. Sincere regards, dr. K _______________________________________________________________________________ So we struggle to decide. Some advice from someone I dearly trust says go with Dr. L if we are going to travel out of state. I am thankful the school year is almost over. After two meetings with DS7's teacher today who has been a GOD SEND this year, it is clear that based on his deterioration in fine motor skills, his inability to process simple math when he used to breeze right through it, that his ability to learn and process information, focus and concentrate has drastically changed over the past 9 months, particularly the last 2 months or so. DH and I have talked tonight and we both feel blessed that our boys are not as severe as some other families who are struggling so much, but we are also cautious in that without treatment, that could be our boys one day . So we are thinking that since we have the time this summer, we will start with Dr. R since he will treat if diagnosed and he would even work with one of the experts up north if we needed to eventually travel after all to see one of them. I know my bulldog father in law is going to say "we are just going up north, why even mess with them down here", but I do also think it is important to secure someone within close proximity to our family that is on the same treatment page with us and right now we have NOBODY! Only time will tell... thanks for listening

That's wonderful news! Sounds like your daughter is well on the road to an excellent recovery!!!

WOW....tears are streaming down my face. Kim, this line you wrote is so powerful. The pain you guys are suffering for your children is REAL as I am feeling it too. Glad you have a place to let out your true honest emotions and feelings. Thanks for venting Karen and hang in there!

DS7 has complained off and on about his stomach hurting and would have the occasional loose stool. I wonder if i am reading too much into things though since I have him under a microscope right now!

DS7 was doing sooooo good with his sleeping until his brother got strep two weeks ago. We put him on .5mg melatonin last year at the end of summer (coincidentally between his last two known strep infections) which allowed him to go from 4-6 hours of sleep to 10-11 hours of sleep at night which of course did have a very positive effect on him. In spring of this year, I had weaned him to .25mg of melatonin and things were going well over the last few months, but now, we are back to finding him in the living room with the tv on at 2 in the morning to in our bed tossing and turning all night long. He woke us up at midnight when he got in our bed, then 2, then 3, then 4, then I just finally got up with him at 5. He says he did not sleep at all after midnight! I don't know if that is true or not, but it sure feels like I didn't. Poor thing has dark circles under his eyes. And he is starting to talk about these damn little fairies he used to say he would see last year at night that would keep him up. I used to think nothing of that until now of course! Why is it soooo hard for a doctor to just TRY antibiotics!? This just really pisses me off. NO help in Austin with Neurologist, NO help in Houston with Immunologist and Neurologist, NO help with Pedi. Going to be another month before I can get in to Infectious Disease doctor in Dallas who *may* help. Going to be making more phone calls tomorrow! Dr. K very well may be on my list!

So good you have such a great doctor on board! Sounds like he really cares and is being very thorough and thoughtful in his treatment of your daughter!

I am afraid you may run into "evidence based medicine" treatments only with her. I am not 100% but highly likely. I was trying to get in to see Dr. Chinen (a Pedi Immunologist at TX Childrens) and he told me his hands were tied since the NIMH and the American Pediatrics Association only discuss treating the symptoms of PANDAS as opposed to treating the root of the problem because it is still in research trials and clinical studies, yada yada. So, I just got off a half hour phone call with the nurse of the Pedi Neuroglost i was bringing them to see next week and turns out he feels the same way. Call Dr. Stocco's office and tell them you suspect PANDAS. Ask the nurse to find out what the Neurologists general treatment protocol is if PANDAS is suspected. This is what I did this morning and that led me to the conversation with the nurse a moment ago. I just don't want to waste any time as I am sure you don't either! Good luck!

Hi! My kids are definitely type A personality all the way...always have been. This hyperactivity and wild eyed behavior that happens to be in conjunction with strep though is different. It is like their bodies have to be in constant motion and they even talk louder. It is truly like they act like I feel after having too much coffee in the morning! Last year when I believe my DS7 turned into a different little boy, he would climb the walls...almost literally. My DS5 who has always been very active is now right there with his brother and he happens to be 2 weeks post strep infection. They are both seriously possessed or something! The overly loud, silly, goofy, repetitive, bouncing off the couches and ceiling, tantrums, anger, anxiety and frustration is off the charts right now! We will be seeing a Neuro in Houston (Dr. Rotenberg a week from tomorrow) and Dr. Mazade has us scheduled for June 25th.

so sorry your ds and your family are going through this right! this is terrible. the anxiety he must feel must be really overwhelming for him to be in this situation. just keep hanging in there mom and i hope you get the help you need!

Ready to tackle the day tomorrow. Many phone calls lined up until I get what I am looking for. Ready for sleep so the new day can begin. Wish us luck! Hope everyone is well

Oh no! This must be so hard, especially when you can see one coming on and it is so hard to stop it. Hopefully he is jut reacting and not getting sick himself which I am sure would be much worse of an exacerbation. Good luck and keep us posted.

Couldn't agree more as well! I actually can't tell you how many times i heard my Pedi say "evidence based medicine" and then as we walked to the front she was talking about how she had to be careful how to code the office visit.

Hey Vickie. Yes, my kids have always shown the signs of typical strep throat when they had positive cultures. What you are saying about symptoms and severity of symptoms and recovery makes a lot of since. And how the immune system plays in. These statements you made help actually answer my question! I guess it is possible (and based on what Dr. K said) that since my son had such a positive reaction to having his tonsils and adenoids removed that his trigger for the tics and OCD was very likely strep, and since he was always symptomatic for strep and was treated (maybe not treated sufficiently since it was almost always with amox) that I believe he truly has not had strep since August of 2009. He has however been exposed and his titers are still elevated and during exposure he did exacerbate. I guess it would be more likely (I don't know) that the poor kids with untreated strep because they were asymptomatic would have the slowest recovery. Thanks for the replies guys, lots of great information!

You guys have been great with lots of good advice. I am hopeful about getting in with Dr. Mazade soon. We will see what I can find out from him and the Neurologist in Houston we have an appt. with May 25th. I did find out that Dr. M will treat PANDAS *if* he diagnosis (apparently his is pretty strict and stringent with his diagnosing). That is fine. Hopefully I will find out Monday and will hear from both of their offices. I will call my sons Pedi to send a referral to Dr. M. Hopefully that will help us get in earlier. Feeling better today. Had a wonderful tantrum free day with both my boys. They are overly silly, goofy and sometimes seem a little delirious, but hey, no fighting, tantrums or CRAZY eyed behavior today. Nice change from the last week!

wow that sounds tough. i hope tomorrow is better. i hope and pray for you that each day gets better

OMG that sounds awful! I had my tonsils removed when I was young because of repeat strep. I don't think I had had it since a child. Couldn't imagine getting it now as an adult as I remember it was painful1 I feel for you!

Unbelievable. Strep is deadly, dangerous and seriously scary!

Hey! I do have a call in with him along with sending him a synopsis of the boys. Does he think outside the box or just treat symptoms? Will he prescribe antibiotics? Thanks and what can we expect if and when we get in to see him?

Oh gosh, sorry you are dealing with this. I can totally understand you worrying about a sibling when another one already has a dx. Another problem (well I don't think it is a problem, but DH does) is that as Mom's watching our kids and potentially other kids go through this, we watch for EVERYTHING; every behavior, every funny comment, movement of body part, etc. Of course your DH thinks she is fine! If he is anything like my DH, he was in complete denial for months regarding the possibility that my son could have a tic disorder. He's just being a kid he would say. Just a nervous habit. I would say..."did you see him do that, did you hear that sound he keeps making". We as Mom's just can't help but have our kids under a microscope because it is our job. DH's will see it when they need to see it, until then you keep watching and doing what you need to do for your daughter. He will thank you for being so observant in the end and she will thank you to for taking such good care of her! quote name='Kayanne' date='May 14 2010, 11:40 PM' post='67673'] Give her Motrin for a few days and see if there is a difference...that could be a good indicator... Try to increase her Omega 3s for anti-inflammatory properties You have had good results with prednisone with your son, are you willing to try with your daughter? Although, I think (me personally) if I were to agree to that for a "possible" PANDAS case, then I would want my child to also be on full-strength antibiotics.

I would say my oldest son who we have suspected PANDAS in since last year but were told by two Neurologists we saw "it's basically a coincidence that he had all these strep infections and then *boom* tics and sudden onset OCD" definitely had lots of strep infections before we ever say these psychotic behaviors, crazy tics and the sudden onset OCD actually came 5 days after his last *known* infection in June of 2009. He had his tonsils and adenoids removed in August of 2009 because of so many infections. What you said about Omnicef and Amoxicillin freaks me out quite honestly. He almost ALWAYS was given Amoxicillin. Sometimes Omnicef was given I think when it was clear that on Amox the symptoms of strep (fever and soar throat) were not clearing up. He may have gotten Zithro once? Not sure, I would have to look in his records. I don't understand Amoxicillin and the intracellular strep thing you were talking about? Thank goodness your child was finally treated correctly and has recovered. Has she had any exacerbations since that onset?