momtocole1

Dear Pixies Daddy, I feel your pain. My son has been doing quite a bit better on a higher dose of Augmentin. We are still hoping to get IVIG. He is not as stable as your daughter is right now. He has been making tremendous improvements over the last 7 days, but school mornings are tough. The toughest ones are Mondays. My husband has to go to work at 7:30 so he is not here to help. My daughter is taken to at 7:30 by our neighbor. My other son has Down syndrome and he goes to school with my son Ryan who has PANDAS. We are in a very small private school that is run from a woman's home. I fell so much for your wife, I know what it is like to try to deal with these rages and protect your other child from the yelling and screaming. It takes everything out of you. These are a few things that have helped, a little bit. I put my son's clothes out the night before. He has a really hard time getting himself ready in the morning. When I go wake him up I try to be really funny and make him laugh. I have the dog jump up on his bed. To be honest, I absolutely dread waking him up in the morning. My heart races and I start to actually break out in a sweat. I try so hard not to get upset, but sometimes I start to yell, because my son is so abusive. His voice is so loud when he screams, it is like a bellowing that makes your eardrums vibrate. He is 118 pounds and almost as tall as me now, (12 years old next month). I cannot physically move him from one place to another. What I have found is that when my son is hungry the behavior is much more intense and then as soon as he eats, he starts to calm down again. I also found that when I put a reward system in place it helps a little bit too. I work with him to tell me something that he really wants to earn. Currently he wants to earn a game for his Xbox. I put a chart on the fridge with 30 boxes in it. Every time he wakes up happy he gets a star. He seems much to old for this type of reward system, but it really has helped. He responds SO well to positive reinforcement. The other thing I have found is that once he has a fit, he really calms down. It is as if his brain needs to be jump started. He has a fit and then it's like nothing ever happened. It is really strange to see. I don't know if I was any help. One other thing I did for a short time was to have a behaviorist that works with my other son to help him while I "dealt" with Ryan. Is there a sitter that could help with your little girl for just an hour in the morning while you get your daughter off to school? I hope that this last big hurdle ends soon. My heart goes out to you and your wife, and your whole family, Thx, Judy...

Hi Faith, (It's Judy) , Your doctor reminds me so much of my son's previous pediatrician. He's kickin it old school! Yuck. What my new pediatrician told me is that the dose of Augmentin that I am giving my son is much higher than even an adult would get so the standard weight vs. dosing charts for this medication don't even apply. My son is quite a bit heavier than yours so I don't know what to say. What I can tell you is that my son is 118 pounds and he was on 1200 mg. per day at first. That was the Augmenting 600mg per 5 ml's. So it was 600 mg. per teaspoon. We started to see a decrease in his OCD symptoms for about 13 days and then a sharp, sudden, backslide. That is when I switched him to what everyone is calling the "saving sammy" dose. That is 2000 mg. per day and literally overnight my son started to improve. (We have a long road, but it is really helping). Read Worried Dad's posts too. His son is 106 pounds and he is on that really high dose. It does feel like we are playing dr. I do think that the Augmentin vs. the Amox really works better for some kids. And... the higher dose works better for some kids. It scared me when you wrote about your son and the intrusive thought about his chest, etc. When do you see Dr. Lattimer? That will be so great for you and she will answer so many questions. You will leave there with a plan. I really think that you should do the Dr. Cunningham blood tests. It just seems that for any child that has tics or ocd that comes with a sore throat or other types of symptoms when they are sick should have this blood word done. Then you will know for sure... I talked to a friend of mine that just moved up to Northern Cal about 5 months ago. Her 6 1/2 year old son developed tics overnight after a strep infection. She was the one that told me about the Saving Sammy book. She did not know about the new PANDAS blood tests available from University of OK. She is going to order a kit tomorrow because she has talked to so many parents, doctors and read so much that she does not know what to think. She was under the impression that a child would have to show OCD symptoms to have a possible PANDAS diagnosis. Her son only has tics. But, when I searched this forum last night, there were quite a few posters that talked about their child having only tics and they still have PANDAS. In some cases the parents did not realize that some of the rigidity that their children were showing in their behavior was actually OCD but that the children did not verbalize what we consider to be more "classic" ocd behaviors. Does that make sense? I hope that the antibiotic starts to help very soon. Thanks again for the phone call last week! Judy...

Dear Worried Dad, Thank you for responding to my post. That is so wonderful about your son. With all the reading that I have done and questions I have asked there is still so much I don't understand about PANDAS. It feels like a miracle that a higher dose of this medicine could have such profound effects on our children so quickly. It's like this strep is "super bug" that just has to be destroyed. What your son told you makes me sad too but just the fact that he is thinking like that is a huge step too. What I mean is, when my son has been in the middle of an exacerbation of these OCD thoughts and rituals his brain doesn't even have the capability to think in these terms. It was only when I started to give him the Augmentin (even at the smaller dose) that he started to think of things more in the abstract. Before he was on the Augmentin he was so "all consumed" with the OCD that he would not talk in that way. Does what I'm saying make sense? I hope I'm explaining it right. Do you feel comfortable posting about what OCD behaviors your son has started to shed? It gives me so much hope to hear about it. For my son, one of his biggest fears is seeing anything with an X on it. He thinks that means that whatever bad thought is in his head at that time will actually happen if he sees an X. We have 3 kitchen chairs with a fabric on them that has X's on them. The other two have different fabric. He sat on one the other day that had the X pattern on it. I could not believe it. Also, I posted about this a while back... he ate a Quaker granola bar. He has always loved those and he did not eat them for months because he finally told me that he couldn't because they were made by Quaker and that would mean an earth quake would happen if he ate one. He just went in the cabinet and got one and came over to me and showed me with a big smile on his face. I already wrote about him walking into school without retracing and the long walk he took outside which are the biggest milestones so far. I have to document all of this so that I won't forget. Find pictures of your son when he was happy and smiling and enjoying life and place them all around where you both can see them. I know that probably sounds strange, but I really believe that can help, along with many, many prayers, and Augmentin and IVIG and... There is something so amazing for me when I look at those pictures of my son smiling, it helps me remember when he felt that joy and to give me the strength to keep going and fight for his healing and recovery. So we both posted good news about our son's. Yahoo! My prayers are with your family as he makes his way back to you!

Dear Melanie, I am by no means an expert on this. Many of the parents on this forum have more detailed info from their experience. What I can tell you is that my son did really well on Augmentin for about 13 days, his OCD symptoms improved TREMENDOUSLY, then he had a huge backslide so we upped the dose to 1000 mg two times per day, "The Saving Sammy Dose" and overnight he started to get better again. There is still so much I don't understand and I am trying to educate myself as much as possible. We are going to explore IVIG. But for now this particular antibiotic and this high dose has really helped my son. Have you tried Augmentin yet? My heart goes out to you. My son went through a bought of cursing and it is so, so hard, and then as fast it came it went. Then some other kind of tic would start. Please know that you are not alone and keep posting... Judy...

Hi Faith, I got the doc to up the dose for about a week because I told him that we are going to do a consult with a PANDAS specialist (Dr. K) in Chicago. Nothing indefinite yet! I am hoping Dr. K will call this pediatrician for me and give him what's what on the protocol! Luckily I did not have to twist his arm... Thanks for the note, I'll keep you posted. Judy...

Dear Meg's Mom, Thank you for the kind note. My son is one of those kids that has been misdiagnosed for years. His first strep infection was April 13, 2003. I believe he has had PANDAS for 6 1/2 years and no doctors would believe me until now. He has had every diagnosis under the son. I am so happy for you that your daughter is doing better. I know what you mean about the fear that you have lost your child. For our son it has happened in such an up and down cycle that over time we just have gotten used to a "new normal" for him. I read or heard something somewhere in one of my books about positive visualization to make copies of all the pictures that I can find of my son smiling and happy and put them all around and focus on them. I was only able to find two pictures! I am going to copy those so that if I start to lose faith again I can look at them and know that more smiles are ahead. I am going to look for your prior posts so I can read about your Meg! Have a great day and thanks again for your words of encouragement. Judy...

I am so happy to write a positive post instead of my usual panic posts. We started my son Ryan on what I and many of you are calling the Saving Sammy dose of 1000 mg. of Augmentin twice per day. He had an overnight improvement in his symptoms. He went from the fastest most intense backslide I have ever seen to going to school yesterday. I don't want to be unrealistic, we still have a road ahead, but what it did was to calm down his whole system, his whole body. On Wednesday (at old dose of 600 mg. 2 times per day) he had started to panic over his food too. He was refusing to eat because it was too exhausting for him to do all of his retracing of putting the food back and forth from the plate to his mouth. I was trying to get him to eat ANYTHING just so that I could get the Augmentin into him. He stuffed an entire blueberry waffle in his mouth so that he did not have to take bites. He became unwilling and incapable of doing the smallest tasks because it would set off an explosion of retracing and retouching compulsions. He went to school yesterday and for the very first time since he started there in September he did not retrace back to the car. He got out of the car and walked in the door. The afternoon before, this was only 1 day after higher dose he went on a hike with his sister and a behaviorist that helps us. He has not been able to easily go outside since the beginning of summer. They walked about a 1/2 mile from the house and were picking oranges and he ate one. I know this seems so minor, but it was huge. I was in tears. About two weeks ago Ryan and I were driving home and he said Mom do you remember when I went on that long walk outside at the beginning of summer with Joseph(behaviorist). I said yes and he said, I will never be able to do that again without retracing. I told him that we are going to get help for him. We are going to figure this out and you will go on walks again without retracing. He did retrace a little bit, but not very much at all. He is on his way, I have to believe that. He still looks very pale, does not have much of an appetite and is very hyperfocused on the computer right now but he is not raging, he is not crying very often. He is working his way back. I have seen him smile and laugh! We are seeing immunologist on November 4th and are in line for a phone consult with Dr K. I will keep every one posted, I was almost afraid to write this but I felt I have to post good news when I have it to give us all hope. This is a devastating illness for our children and our families. We are close to total exhaustion after this most recent episode. It is like we all have post traumatic stress disorder, but we are fighting our way back. For the first time I feel like there is hope. His blood is at Dr. Cunningham's lab. I know I have said this before, I am so grateful for this forum and all of you parents that continue to post, good or bad. I turned away from this forum for awhile because I was scared, discouraged, in denial, you name it. When I turned back to it and continued to tell me story and search for help it came flooding toward me. I'll keep you all posted. Thanks, Judy...

NINJA HIYA

NINJA HIYA OLOL

Yes, do you know him? Are you going to see Dr. Gupta?

Do you think I should do the phone consult with Dr. K? There is no way I can get my son to Chicago. I cannot tell you how great he was doing the first 13 days on Augmentin and then it was like an explosion hit and he went down hill again. He asked me this morning, Mom what happened, why did it get worse again. My ped. has not called me back so I upped his antibiotic the Augmentin to 1000 mg. last night on my own. I don't know what the ###### I am doing (excuse my french) or what to do. I am in a panic. He could not get out of the car to go to school, we drove home both crying. He is afraid to eat because he can't stop picking his food up and down and it is just too hard for him so he is refusing to eat. I tried to get him to eat a waffle so I could give him Augmentin and he shoved the whole thing in his mouth so that he would not have to retrace and keep putting it back down. I feel so alone, even though I know I'm not. I wish I could tranquilize him and get him on a plane to Chicago. I have even thought about renting a motor home. I have lost it, I'm serious. Thanks for listening...

Can you please forward me his contact info. Thank you, Judy...

I was in touch with Kathy Alverez this week. We just fed exd my son's blood today. I received an email from Madeline Cunningham saying that we would have results in about 2 weeks and that Kathy was on vacation until next week. They are so wonderful there, helpful and very quick to respond. I think if someone is trying to get it in under the wire before the winter break they should email or call right away.

What an amazing idea. I would like to ask others in the forum from the west coast that would be interested in flying him here after he goes to the NorthEast. Has he done this for other people? I have not been able to find anyone here on the west coast that is really knowledgeable about PANDAS. This was really a good suggestion.

Dear Peglem, I have two words for you... Lucky Ducky! I can't even get my pediatrician to call Dr. Lattimer and Diana P. gave me her cell phone number for him to call her. Where is your doctor located? We just got Dr. Cunningham's blood work done today and the fed ex is in the air right now. We will see an immunologist at UC Irvine, California on November 4th to hopefuly start the ball rolling for IVIG if it makes sense. I have so many key players in place except one really important one. A doctor who has successfully treated PANDAS kids or one who is willing to research it so that he or she can treat them. I am desperate. Are you near California? Thank you, Judy...

I just left an urgent message for our ped. to ask him to higher the dose. How is your son's stomach on such a high dose? Do you use probiotics? I am going to keep trying to get him used to pill swallowing. Thanks, Judy...

Hi Brian, You answered some of my questions from my other post that I just sent you. Sorry for the overlap... One last question. They don't make Augmentin XR in liquid, I'm sure that the XR has to be in a capsule so it can slow release. I know I am asking so much, but are the pills really big? My son can't swallow pills right now but I want to keep trying because maybe he needs the XR. Ryan just gags on pills, we keep practicing with tic tacs. Does your son take 3 - 4 times a day? I still am really curious about how his stomach feels. Thanks again, and again, Judy...

I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on. We started 15 days ago and my son is 12 years old next month. 118 pounds He is on 1200 per day. 600 mg in a.m. and p.m. I'm wondering if it is not enough and that is why he is backsliding right now. He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused. Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable. Thanks, Judy...

Dear Stephanie, Thank you for the reply. I know that all kids are different but for my son it seems more like a PANDAS reaction vs. the yeast die off you wrote about. But, it is so hard to tell. He is just wound up tighter than a drum, he is running through the house retracing over and over and screaming and crying saying that he can't get it to stop. When we first started on the Augmentin the retracing was almost gone, it was unbelievable and then for two days I gave him a "smidgen" of probiotic in juice. It was such a small amount that I don't really think that it could have been that but I want to believe that it was so I can stop it and see if he improves. This is such a scary thing, not knowing if antibiotic is strong enough, our doc is so in the dark on all of this. I have to tell him what I want to do. I wish I was on the east coast. I think I will post a note to find out what strength of Augmentin that others kids are on. Thank you, Judy....

Dear Jack, My son is on 600 mg. per 5 ml strength of Augmentin. We are giving him 5 mg 2 times per day. (2 tsp) Total Augmentin he is getting is 1200 mg. per day and he is 118 pounds. Overweight for age, which will be 12 next month. Do you think that is too low of a dose? The boy in the saving Sammy book was 10 years old and was much smaller than my son Ryan and he was on 1500 per day. Another parent sent me a message to make sure that my son is on extra strength Augmentin? I don't know what that is. I am going to call the pharmacy now. Maybe they mean XR (Extended Release). Is your child on Augmentin and how is he/she doing? It helps so much to know that we are not alone and that other parents are going through the same thing, Thank you, Judy

My 11 year old son has been on Augmentin now for about 12 days. He was doing really well until I started up his probiotics again. I have been using a really high quality one recommended by my Dr. from Claire Labs. It is called ABX support. It does not have a strep strain in it. It is like he is going crazy. I had to pick him up from school early. He is awake right now screaming and crying in his room and it is after midnight. It is like a boom came down and the Augmentin stopped working. I did not give the probiotics today, I am stopping for now. We have an appt with immunologist in 2 weeks and we are doing Dr. Cunningham's blood work on Thursday. I am just so heartbroken over this right now. It is like 5 steps forward and 10 back. He is screaming out food items again. Diana Pohlman has been a lifesaver and offered so much help and support. We are going to try to get IVIG for him asap. Thank you, barely hanging on over here, my heart is breaking for my son...

Dear EAMom, Thank you for all the information. My son is 12 in November. He weighs 118 pounds. He is so sedentary, during this last episode he has pulled away from everyone and everthing. He won't go outside anymore, very rarely. He was on 12.5 mg. per day, I have to go check the bottle to see wh at the strength was, I think it was 500 mg. per 5 ml. He started on a much lower dose and I asked the dr. to up it after I saw the posts on this discussion board. I saw a major breakthrough tonight on the new antibiotic: Augmentin. My son ate a Quaker Granola bar. I know that must seem so minor but he would not eat one for the last 2 months and he used to love them. He told me that he could not eat them because they were made by Quaker and that meant there would be an earthquake. Poor Guy... It seems small, but I am believing that is the start to him coming out of this very difficult time. Would I have to take my son to OK to see Dr. Cunningham for blood work? Will he do a consult with my dr. and send lab info? I will read the posts that you are recommending, it probably says it there. I will follow up with the other referrals and see if Dr. Gupta can help. Thanks again for everything...

We had my sons blood work done for the first time. He was showing all signs of strep throat last week. Culture was negative because he was on Zith. He was on Zith for a couple of months and he was doing well. I took him off Zith because I read too many negative things about prohylactic antibiotics and got scared. A few weeks later he completely decompensated. He had no signs of strep, no sore throat. I was trying to treat his OCD with CBT and ERP. Huge mistake he just got worse. I put him back on Zith and he did not seem to get much better, only small improvements. I think he developed an immunity to the Zith and that is why he got the strep again. The doctor who is not very familiar with how to treat pandas agreed to put him on Augmentin 6 days ago, 600 mg two times per day. The ASO sereology test came back negative. AntiDnase B results won't be back for 10 days. My doc thinks that we should just go by the clinical signs that he has PANDAS. He literally meets all the criteria. Does anyone think that ASO was negative because he is on such a high dose of Augmentin? Or is it too close to his strep coming on for those antibodies to show up? I am trying to find a doctor in socal that has succesfully treated kids with PANDAS. I have been emailing Beth Maloney who wrote saving Sammy. She has received thousands of emails from around the country and she is comprising a list of doctors, but she does not have anyone for socal yet. My son seems to be doing slightly better on Augmentin, tics are changing and he doing less retracing. I am just worn out and confused. Thank you,

Oops, thank you so much for pointing that out. I went to the wrong forum by accident. I kept wondering why nobody was responding. Thanks so much...

I am heartbroken, I took my son in for a series of blood test to check his Strep Titers, Antibodies etc. and the lab did not have enough blood to complete all the testing. We were at the doctor's office for 1 1/2 hours trying to calm my son down enough to get the his first blood draw ever. We think he has an active strep infection right now, but culture came back negative because he was on Zithromax for the last month. They were able to get ASO so that is important right? My doctor is away on a trip and cannot interpret the results right now. The question I have is if his Sereology ASO came back negative could he still have step? It is my understanding that if he just got the strep it could be a few weeks before those antibodies increase? He is now on Augmentin because we think he built up an immunity to the Zithromax because he was on it for so long. Can someone explain exactly what blood tests we need to get to check for PANDAS. I am so confused. I have 10 lab sheets in front of me and I am lost. Thank you...