momtocole1

So do you see a significant ramp of symptoms and a remission of symptoms over a 4-6 week period? Has he had significant ramp in symptoms associated with the numerous strep infections? There's debate about whether unchallenged serum is sufficient for testing PREVNAR. It has probably been some time (6+ years) since his last vaccination. I'm not sure what to do with the PREVNAR test. Our immunologist felt it wasn't a useful test in the absence of a challenge (i.e., recent revacination). We have no desire to revacinate. My son is 12 so it has been a long time since his vaccinations. I am with you, no desire to revaccinate. Well, PANDAS doesn't have anything to do with ASO or with AntiDNAse-B values. While some of us on this forum have found the PREVNAR results interesting, we don't have (and neither does the world health organization) good data on what are the typical values in the population 6+ years post vaccination. So those results don't tell you much. Your IgG values look good and at least indicate he's doesn't have something else going on. I was actually hoping that the immunologist that we are going to see at UC Irvine on November 4th would see the failing of the strep pneumo vaccines as an indicator that there is an immune issue. We are trying to get IVIG and to get it covered by insurance. My son is 118 pounds so it will be about 12K to get IVIG for him. We don't have the funds... What are your child's symptoms? How long do they last? Symptoms were, constant retracing of steps, retouching items, fear of anything with an X on it, certain food aversions fear of anything with the number six on it or 12 because that is 2 times 6, or 42, four and two make six. He went to a very phonatical (sp) Christian school last year and he developed scrupulosity symptoms. The OCD got so bad this summer we had to pull him out of the school. If I kiss his cheek, I then have to go back and kiss the other one. If anyone touches his food, he has to throw it out. All doors and windows must remain closed most of the time. Turning faucets and shower off and on 5 times. Refusing to bathe, difficulty getting him to change clothes. The list is so endless, it really consumed all of his existence and it had NEVER been this severe before. We started Augmentin about 4 weeks ago because I read the Saving Sammy book and I thought that he had built up a resistance to the Zith. He was on a lower dose, one calculated by his weight and I started to see a little improvement, when I went back to look at my notes I realized that he really still had so many OCD symptoms it was just that the intensity of his rages and the frenetic way that he would run around a retrace had settled down a little bit. Then boom, he backslid again and the OCD behaviors went haywire. I started the saving sammy dose about two weeks ago and we have seen improvement every day. OCD is still there, but he went from one day not being able to get out of the car to go to school to walking in the door the next day with no retracing. His rages are fewer and farther between with less overall intensity and duration. It is like he is on rewind with symptoms. Started to do some of his old tics from a long time ago , i.e. chewing on shirt. He has actually been joking with me, more playful. Playing pranks, etc, which he not done for years. He went outside for the first time in about 4 months last week. He rode his bike for the first time this week. We are seeing some definite improvement, but he is still retracing and doing other, new OCD things here and there. I started new probiotic and I think we are seeing some yeast die off reactions possibly. Since starting new higher dose of Augmentin he does not want to eat very often. I have to force him to sometimes so he can take Augmentin. We talk to Dr. K. next week and we mailed off blood work for Cam Kinaise last week to Univ. of OK. Then Immunologist appt. Thank you for all your insight. Do you have a child with PANDAS or are you a doctor that helps on this post? Thanks, Judy... regards, Buster

Yahoo, a PANDAS friend in LA! Dear Kari, I live in So O.C. I know I am a bit far away from LA but I am so glad that you posted. If you have others that you find in Southern Cal from your request I would not mind making the drive up there to be in a support group. Even more importantly, Do you have a PANDAS doctor? Can you tell me more about your boys. I have twins too! I can't find anyone in OC who has successfully treated children with PANDAS. We are going to see an immunologist at UCI on November 4th and we are doing a phone consult with Dr. K. next week. Currently we see a DAN doctor but he has little experience with PANDAS. My heart goes out to you with two little ones with PANDAS. My twins do not have PANDAS, I have a boy and a girl, they are 7. My little boy, Cole has Down syndrome and my daughter is typical. It is my older son that has PANDAS, he is 12 next month. I can't wait to hear if you have a doctor that you are happy with. I can drive to LA in 75 minutes and it would be well worth the drive. My son has way too much anxiety and OCD symptoms to be on a plane. Thanks, Judy...

Dear EA Mom, Could you please explain baseline to me. My son has been sick for so long I don't know what a baseline is for him. Is a baseline where we would expect our kids to be with now OCD or tic type symptoms??? Sorry if I sound dumb, I still am learning so much... Thanks, Judy...

Wow, my son was chewing his shirts too. It was when he first got strep and I believe PANDAS, but I did not know about PANDAS then. It was 5 years ago. He would chew his shirts in the first grade so much that the ribbed collar that was around the t shirt would be completely torn away. He would run out of his class at the end of the day and his shirt would be completely soaked up front. What is really strange is now that we just started the high dose Augmentin he has started to chew his shirts a little again. Not anything like before. It is like he is replaying some of his old OCD behaviors and tics. It is like on rewind a little. It is so strange to watch. Thanks, Judy....

Dear Coco, I feel like I could write a book on impetigo. The sores you are talking about really, really sound like impetigo. It starts out itchy for them and my son tells me that the skin is tingling, and then this very red sore appears. The sore or sores look like a very perfect circle on my sons mouth. Then they turn a honey color and they look like they have these lines across the sore from left to right that look almost like a scrape. They sometimes ooze just a little bit, sorry I know this sounds so gross. My son, when he gets them cannot stop opening his mouth as wide as he can and it cracks them open again and prevents healing. He also will lick the sore, it kills me. It becomes a new tic! Once I finally got one cleared up on one side of his mouth and then the next day another showed up on the other side. I almost screamed when I saw it because I could not believe it. He really looked like a clown that had two red circles painted on either side of his mouth. They are usually about the size of a dime. I have tried neosporin, bactroban, even went to a dermo and got a steriod cream, that did not help all all, it just irritated the heck out of it and made him fuss with it even more. Now I now more and the only thing that clears it up for him is oral antibiotics. I just know after reading so much on this forum that my son has a nasty strep infection SOMEWHERE in his body! I really think it is an immunity issue now and I think that the skin has been so broken down there that he is now really suceptible (sp) to these sores. I had one cultured recently and they did not show strep on the lab report. But my ped said that there is never enough on the skin to show a positive result. What did show up on the lab report was candida albicans. That is yeast right??? They never even called me to tell me those results. Do you think it is because we all have yeast on our skin? I still have so much to learn. Thanks, I hope that helped a little. Do these sores sound similar to the ones your daughter go under her nose? I feel for you and for her...

Dear Coco, My son failed 6 of the 7 strep pnuemo strep serotypes. He is older than your daughter I think, he is 12 next month. Back in 1997 when he was born they were only vaccinating for 7 strep strains. Can I ask if you did IVIG for your daughter? There is another mom on the board who has a son or daughter that gets monthly IVIGs because of this and they have all been covered by insurance. Thanks, Judy...

I don't know why the doctor ordered the HHV-6 test, he is a DAN doct. He may have done this because he keeps getting impetigo infections on corners of his mouth. It is usually an indicator that a strep infection is coming. But, now with all that I have learned about PANDAS I am wondering if he gets the sore do to a virus and then because he keeps cracking open the sore and licking it and touching it, that he then gets a strep infection? The doctor is not very knowledgeable at all about PANDAS even though his own son has PANDAS. The reason that he hasn't really studied it is because his son has very severe autism and he is focused on that. He is also not currently showing significant OCD symptoms. Thank you for responding...

Dear Colleen, Sorry that I did not respond until now. I accidentally posted on the OCD forum instead of PANDAS so I reposted there. To answer your question my son is on 1000 mg. of Augmentin twice per day. So 2000 mg total of liquid. We have noticed a HUGE reduction in his OCD symptoms on that higher "saving sammy" dose. Don't want to mislead, he still has major OCD, but it is less intense. He is not as volatile. Certain OCD behaviors are being shed and he is not as exhausted. I will post his recent blood test results, I am still so confused. It will help to discuss with immunologist on November 4th for sure. His ASO was actually negative, no number at all, Below are the other results that I am confused about: My dr. ordered quite a few tests for my son and I think he ordered some that were not accurate for strep/pandas. He is not very knowledgeable about PANDAS and charges me $175 (cash) every time I go in, because he is a DAN doctor. We have a phone consult with Dr. K coming up next week, but I wanted to see if anyone here understood these results. Results: Anti-Dnase B Strep Antibodies was: 1:120 The comments say: Preschool child should be < 1:60 School Child <1:170 Adult <1 :85 My son is 12 years old and is in 6th grade. It seems that he is on the low end of this test for his age. What is confusing is I thought it would be a whole number not a ratio. The next one is HHV-6, IgG Antibodies, Quant Results: 1:80 The comments say: Negative = 1:20 Equivocal = 1:20 - 1:80 Positive = >1:160 Seroology ASO was negative, no number given IgA was 118 rage was 53-204 IgE was 59 range was 1 - 183 igM was 53 range was 31 - 179 Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004 Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines) I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right? So confused.... Thanks, Judy...

I think that I did not get the right blood tests, because nobody has replied to this post. I am so confused. I'm sure consult with Dr. K will help. Could others share their anti-dnase b strep blood test results from their kids? Thanks

My son would rather stay in the same clothes until they dissolve on his body! I still continue to have an issue getting him to take showers and to change his clothes. I finally settled on letting him change into clean clothes the night before and he sleeps in them. I am so embarrassed to admit he only takes a shower once a week. It is just too much trauma to fight it everyday. I scour the stores finding the softest t shirts, with no tags, socks with no seams and currently he will only wear the long basketball type shorts but they have to have pockets. I have accepted a "new normal" regarding this. I pick my battles! I just wanted to vent and see if others are experiencing this. His first diagnosis was sensory integration dysfunction. I am wondering if it has always been the PANDAS. Thanks...

My dr. ordered quite a few tests for my son and I think he ordered some that were not accurate for strep/pandas. He is not very knowledgeable about PANDAS and charges me $175 (cash) every time I go in, because he is a DAN doctor. We have a phone consult with Dr. K coming up next week, but I wanted to see if anyone here understood these results. Results: Anti-Dnase B Strep Antibodies was: 1:120 The comments say: Preschool child should be < 1:60 School Child <1:170 Adult <1 :85 My son is 12 years old and is in 6th grade. It seems that he is on the low end of this test for his age. What is confusing is I thought it would be a whole number not a ratio. The next one is HHV-6, IgG Antibodies, Quant Results: 1:80 The comments say: Negative = 1:20 Equivocal = 1:20 - 1:80 Positive = >1:160 Seroology ASO was negative, no number given IgA was 118 rage was 53-204 IgE was 59 range was 1 - 183 igM was 53 range was 31 - 179 Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004 Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines) I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right? So confused.... Thanks, Judy...

We tried Melatonin with my son for quite a while and I felt that it made him rage more. I could have just been the PANDAS but it seemed to get a little better when we stopped. We now give him 2 teaspoons of Calcium/Magnesium before bed, mixed in with OJ. If he does not have it now, he has trouble settling in. Although during this most recent PANDAS episode it is not making dent. If I give him his Augmentin too late at night he seems to have trouble getting to sleep so I am going to start it earlier. Good Luck, I know how hard it is to go without sleep and that feeling that they will wake up at any time!

Dear DeAnn, I am so glad that you are here. You will get so much information from this forum. It has saved me. These Mom's and Dad's are so full of knowledge about PANDAS. Some of the parents continue to post long after their kids are recovered, how amazing is that. I think part of the reason is that we as parents suffer so much to see our kids suffer and no parent wants another child or parent to go through what they have. Sorry I had to hang up today, my son Ryan had a melt down because the alarm testing for the local power plant went off again! Talk to soon, Judy...

Hi Faith, Thanks for the note. I just wish Ryan could swallow pills. We keep trying. I did not know until last week that fear of choking can be a PANDAS symptom. My son gags even when we try to have him swallow really small pills. A friend told me to try orange tic tacs to practice he just can't do it. If he can't do a tic tac there is no chance he will swallow an Augmentin pill which I heard were huge! One other thing that I noticed on this forum or I heard it somewhere is that they can develop fears around eating in general. Isn't that strange. My son has had the hardest time eating at school???? He had such a tough day. We live near a nuclear power plant called San Onofre. They decided to test the alarms for that plant that is 20 miles away! I did not even know that we had alarms in our city. It was so loud, and he did not know what was going on. We were actually driving on the freeway when we first heard it and I did not know what it was. He went into a full blown panic and he tried to jump out of the car. I finally got him calmed down at home and the alarm went off again. I could not get him to stop shaking and crying until I called 911 to see what was going on and the 911 operator was so rude. He checked and then told us about the alarms. It just seems that when we are starting to make progress something happens and we take so many steps back. Ryan has always been petrified of any types of alarms. There are good things happening too though, he really is shedding OCD behaviors and other fears. He rode his bike today for the first time in many, many months and played OUTSIDE with a neighborhood friend. I guess I have to accept the bad with the good! I'm sorry to hear that your little guy is feeling nausea too. I did get a new probiotic today that is supposed to be more natural and really good. You can see the name of it on this post. I'll let you know how it works. I am a little nervous about yeast die off reactions but I have to do this to help his stomach and replace some of that good flora that is being killed off by these heavy duty antibiotics. I can't wait until you see Dr. Lattimer, you are soooo lucky! Talk to you soon... Judy...

Wow, that sounds familiar... Thanks for posting, glad to know we are not alone....

I wanted to poll the group to ask about your son's and daughter's and their school situations. Can you folks share whether your child is in public or private school? Did you have to move them out of public school because of PANDAS, OCD, etc....? Are they able to go to school when they are in an exacerbation/flare up? My son Ryan was in a public school until the last two months of 4th grade. (He just started 6th) We had to take him out, he just could not do it. He was putting his head down, giving up, losing friends, etc., the list goes on. We moved him to a private school last year and it was not the right fit so we had to move him again. He is now in a VERY small school. It is actually in a woman's home. She is from India and she is absolutely amazing. She has her Master's in Special Ed and she has turned her home into a school. There are only 18 kids and they have a varying range of disabilities: Down syndrome, Cerebral Paulsey, Asperger's syndrome, more severe autism, brain injury. They are all very sweet kids, but they all for one reason or another cannot be in a large school and they would be lost in the special ed world. My son is still struggling at this small school. He is shedding OCD behaviors on the high dose antibiotic which is great, but as you all know it is a slow process. We continue on this road that is more like a roller coaster. Hoping every day that we are one step closer to IVIG. I am trying to explain things to his teacher. I gave her the saving sammy book. She feels really guilty because he is not getting much of an education right now. He is struggling with all writing and REALLY struggling with math (he could be a poster child for PANDAS symptoms). I told the teacher that Ryan is improving everyday, that he has been through a very traumatic time with his most recent episode of strep, worst reaction/recover ever. I also told her that I don't care if he does any math problems or for that matter does any school work. I just want him to get out of bed every day and go to school. He is on a modified day because he just could not do all 6 hours. He is there for 4 1/2 hours a day, but some days that is a struggle. The teacher is so wonderful, loving, understanding, but she sees him so happy during the social times and when they sit down to do the work he unravels. I talked to him about it tonight and he said that he just can't sit still, that he is hot and that he feels like everyone is crowding around him. It is like he wants to jump out of his skin, and just bolt, like it is too hard. If I take him out of school, I am afraid he will just fold. He is so lonely and just craves the contact with other kids. Plus, I don't think I have what it takes to home school him. But then I don't want to push him too much. I thought about hearing about other kids school situations that I would be able to explain to her that we are lucky that he is even going to school at all, right???? Thanks for letting me vent...

Dear EA Mom, Unfortunately my son does not need the calories, but we will tackle the weight hurdle when we get him well again. I think I mixed some old behaviors and some new behaviors into my post that made it sound more Panads-sy. The new behavior with the high dose antibiotic seems more that his stomach is bothering him and he does not want to eat. Feeling nauseous, bloated etc. I am going to get the new probiotics tomorrow and start up again. I don't know about the acyrlamide issue, can you please elaborate. Thanks, Judy...

Dear Stephanie, Re: your comment: (see below) Saccharomyces Boulardii is really good b/c the antibiotic cannot kill it (it is a "good yeast" that you would have to dose away from the nystatin). Is that brand available in a health food store? Or would I need to get it from a nutrceutical type company? Also, I didn't understand the part about a good yeast that you would have to dose away from the nystatin? Sorry, still kinda new to the yeast stuff, if you could elaborate on that I would really be grateful. Have a good night, Judy...

Has anyone seen their child lose their appetite on the "saving sammy" dose of Augmentin. 1000 mg 2X per day. My son is turned off of food! He already is a pretty picky eater. He eats the sames things all the time, which has been a pattern that I have seen on this forum with other PANDAS kids too. He will come into the kitchen ask for something to eat, I will make it and then he will get really upset and not want to eat it. He goes from being not hungry at all to being starving but nothing sounds good. All he wants is fast food which we all know is the worst thing for him. I have been giving in more though, because I am so desperate for him to eat especially right around the time that he is taking the Augmentin. I still have not started more probiotics but I am going to start culturelle tomorrow, I have just been a chicken, because of his adverse reaction last week. I think the probiotics I have are too heavy duty for him. Did anyone ever read that book, "The Princess and the Pea" about a princess that could feel a tiny pea at the bottom of a hundred mattresses. My son is the prince and the pea, he is sensitive to touch, smell, seams, tags, COMMENTS, looks, fans, tastes, my breathing! It has calmed down a little bit on the antibiotic but we have a long way to go. Thx.

dear ShaesMom, Could you share your daughters numbers if you are comfortable with that. I have heard that some docs have a different opinion about what failing is and also the labs show differences in what they consider non-responder, weak responder and good responder. My son's were as follows: 4 = 0.10 26 (6b) = 1.12 68 (9V) = 1.48 14 = 0.67 56 (18) = 0.47 19 (19F) = 2.43 23 (23F) = 0.16 According to the lab our local Children's Hospital used which is called ARUP A ratio of less than twofold is considered a non-responder A ratio of two to fourfold is a weak responder A ratio of fourfold or greater is a good responder So the way I interpret the results he is a non-responder on 6 of the 7 strep pnuemococcal Serotypes. We see the immunologist for the first time on Nov. 4th. Don't worry, not asking you to be a doctor, just curious what a failing ration is for your daughter in your dr.'s and labs eyes. Thanks, Judy..

Dear Wendy, I am confused on this too. I just got my son's results back yesterday. He is almost 12 (next month). He showed a result of 0.04 on Pneumococcal Serotype 3 and it does not look like they even tested number 26. He showed up with a ratio of less than twofold which for this lab means non-responder for 11 of the 14 serotypes they tested! I am so confused. I went to meet with my pediatrician who I thought was pretty knowledgeable on this and he was clueless. He did not even know what strep strains my son was vaccinated for. He went to go and try to find a box insert from one of the Pnuemo vaccines and he had thrown them all away. In talking to Diana Pohlman she mentioned that it can also depend on the lab as to what is out of range and what is not and different dr.'s have different opinions about what is an acceptable response number and what is not. I don't know that I really helped you except to let you know that your not alone in your confusion. If you can help me in my confusion after you meet with your immunologist that would be great! Thanks, Judy... I guess for now I just have to wait to see the immunologist on November 4th.

Dear Peglem, It isn't like crazy laughter outbursts it is just like he just wants to be really silly and make me laugh. I can't even remember when he would do that before. He is not hysterically laughing really, just trying to be a ham and be really silly and very dramatic. More like a younger child. I am really enjoying it actually, and I can't believe it is happening. But I got scared when his teacher just called and said that he is itchy. I stopped the probiotics because he had what seemed like an adverse reaction when I gave them to him last week. Pediatrician wants me to start Nystatin, heavier duty probiotics, biofilm stuff, vitamin c, d, e. I don't want to change anything until I have my phone consult with Dr. K. next Monday. Do you think the itching is yeast? Thx, Judy... Silly, giddy as in playful, or silly. giddy as in crazy laughter outbursts that seem a tad extreme...the second kind can be a sign of yeast.

My son started on the "saving sammy" dose of Augmentin about 7 days ago and he is complaining of a lot of itching. I'm thinking it from the Augmentin. Should I do Benadryl? He is also losing his appetite. OCD is still less than it was so that is good. He is also really silly, I mean silly like a 4 year old. Giddy almost? Last night he ran in the bathroom and told me that he threw up. I was so worried that he threw up the Augmentin. He was just kidding. Trying to play a joke on me. It is like he is going back to a younger age? Like where he left off? Does that make sense? Thanks, Judy...

Dear Faith, I got your message this morning and replied, but your mailbox was full. I will try to resend in the morning... Thanks, Judy..

Dear Alex, Yes, Yes, my son has very dark circles under his eyes and is very pale. I was just going to post and ask if others have seen this too. We are hoping to do IVIG soon. If the Omnicef is working to lessen the symptoms, can you stay on that prophylacticaly? (sp)