chrisw

My son had IVIG with Dr. K back in April 09. Before the procedure, Dr. K requested the mycoplasma test among a few others. My son was positive. He also had positive strep around the same time.

This wasn't addressed to me but I did contact Beth about the Augmentin that is not XR. She said she did not know and to ask my doctor. I've emailed my doc ad put in a phone call too and I'd expect to hear back today. I'm not filling our prescription until I hear back that that level of Clavulonic acid is okay for her. My dd has been prescribed 2000mg of Augmentin that is NOT the XR. I'm not sure my doctor knew that the levels of Clavuloic acid were different. I did ask her the difference between XR and regular and the only thing she mentioned was the time release issue and the expense and availability of XR vs. regular. I can't imagine that our pharmacy couldn't order it though. Angela Shouldn't a pharmacist know if this is safe?

Well, I called Diana for more info. She called the father to get clarification. It was JUST the regular flu shot, but it did cause a bad exacerbation. SORRY!! But, I think this speaks to the issue of the fact that we don't always know how our kids will react. My son will not be getting any flu vaccines. Christie

Hi All, Wanted to pass along some info to you about the H1N1 vaccine. I spoke with Diana P. yesterday, and she told me that a 5yr. old Pandas child whose symptoms were under control with antibiotics got a flu vaccine (either a combo of regular flu and H1N1 or just H1N1) and is now in a MAJOR exacerbation. She said that this is not someone who posts on here and she wanted me to post this for your info. I don't know any other details other than this. Thought you should know. Christie

Hi Stephanie, My son had IVIG with Dr. K in April of this year. He runs between 85-95% better than before IVIG, depending on the day and if he has been exposed to things at school. Life is good right now and he is much happier. He takes 500mg. of Augmentin daily (he is now 10yrs. old) and is SO MUCH easier to live with. I have faith that he will continue to get better and eventually grow out of it. You are in my thoughts. Hang in there. Christie

Hey Fallingapart, If your weird, then I am too!! I ordered the colostrum lozenges from Synertek after MUCH research. I have been giving 1 a day to my son for about 2 weeks. I was really impressed with their website and info. Just google Synertek colostrum. When Diana went to see Dr. Cunningham, she asked her about colostrum and Dr. C said it sounded like it was fine as long as it was pasturized (which it is). Evidently, it really strengthens the immune system in many different ways. My son says the lozenges don't taste good, but they don't taste bad. I've taken several and they aren't bad. I just have my son suck on them for a minute or two and then chew it up and swallow with some water. On this website, they claim that colostrum can raise serum IGg levels up to 50%. I have no idea if that is true, but if this will give him just a little boost, it's worth it. We live in Florida and have had MUCH sickness in our schools (swine flu, and strep) lately. The other day at my sons school (he's a 4th grader) they had 95 absent. He has had nothing but occasional sneezing (I should probably be dusting my house right now!) since school started. I plan on getting the powdered form for my whole family also. I wonder if I could add it to chocolate milk without any notice? Christie

Hi Melanie, I'm SO glad to hear that you are seeing improvement! Were you able to secure prophylactic antibiotics for Danny? Without them, he WILL be vulnerable to strep and if infected, he will likely regress. The antibiotics are part of the IVIG equation for success. I hope I'm not preaching, but IVIG is so expensive and such a big deal to not give it every opportunity for success. My son had IVIG in April of this year and continues to do well. Overall he continues to be about 85-90% better than before IVIG, but I can STILL see MILD behaviors (usually just one at a time and manageable) return occasionally and then fade away. I believe this occurs from being exposed to germs at school everyday. His overall health continues to be good and the few times he has acted as if he is going to come down with something, his immune system seems to fight it off quickly. I would say that the IVIG was a successful treatment for him, but I really believe he would be back to where he started or close to it without the protection of the abx. The abx. gives the IVIG an opportunity to work and possibly time for the immune system to "learn how to behave" properly. I have NO regrets about doing the IVIG and would do it again if neccessary. I am SO happy for you and Danny and I pray for continued improvement. Christie

Hi Lena, So sorry for what you are going through! I was just curious about your child's IVIG. In a previous post, you said that he experienced no relief after IVIG. Was he placed on prophylactic antibiotics after his IVIG? I noticed that you mentioned other meds but are you just now starting abx.? From what I understand, IVIG is basically going to be useless unless the child is protected from strep for at least a year. I hope the penicillan helps. Hang in there. Christie

Will be lifting Shae, you and family up in prayer. So sorry you all are going through this on top of everything else. Christie

Welcome!! And WOW!! I know many of us are always wondering about the future for our children and your post is SO encouraging!! I am so excited to hear of your daughters recovery. I think I can speak for many on this forum when I say THANK YOU, THANK YOU, THANK YOU for taking the time to share that with us. Christie

It's bovine cow colostrum. Evidently they can only get it right after or soon after calving.

I have been researching bovine colostrum and think I have decided to give it a try. It has a bunch of immunoglobulins (IGG, IGA, IGM) in it which are evidently the same whether from a cow or human. Go figure. My son's IGG1 subclass is below normal and his IGG3 is on the low end of normal, so I don't think it can hurt. From what I have read, it is not classified as a drug, but a food so it supposedly has no side effects. Here is a VERY informative website (I don't know how to do a link) all about colostrum. It is www.icnr.org. I just want to do all I can to protect my son through this school year. I'll let you all know what I think when we try it. Christie

Hi Eddie, Is your son on prophylactic antibiotics? Did he get his IVIG with Dr. K?

I was fortunate to have an easy going Vet who just agreed to put my dog on a round of abx. She said that they don't even do a test for strep in that office.

Wonderful, wonderful news!!! I am still in awe over the last 2 wks. of school with NO problems concerning separation anxiety or homework issues for my son. Is anyone else out there toying with the idea of making there kid where a mouth and nose mask to school??? I'm still really nervous about germs. Hope things continue to go well. Christie

Hi All, Wondering if anyone else's child is experiencing discoloration of teeth which is listed as a side effect of Augmentin? My son is on 500mg. a day (post-IVIG) and has developed some brownish tint to the grooves on his teeth. He is about to turn 10 and is in 4th grade. He is beginning to feel self conscious about it and told me that a girl asked him if he is brushing his teeth. It's not horrible or the first thing you notice, but I don't want it to get worse. Any suggestions? Thanks in advance. Christie

My son has always been pretty sick. He's had pneumonia 2-3 times, tons of ear infections, lots of viruses and of course strep. Ever since his IVIG in April, he has been very healthy. He has seemed to be fighting something or coming down with something a couple of times, only for it to never "take hold". One example of this would be when he got a mouth ulcer (inside his mouth) in early July. He used to get these all the time, and they would cause him lots of pain. It usually took them about 2 weeks to go away. The one he got in July only lasted 4-5 days. He complained of a sore throat for about 2 days, (strep test was neg.) and it never turned into anything. His PANDAS symptoms did act up during this time, but on a MUCH milder level. I doubled his abx. for 10 days and this calmed things down. I still get nervous about all the germs, but I know we can't stop living. It is hard to know what to do. Hope this helps. Christie

Happy update!!! Today was Jacob's first day of school in 4th grade. He was nervous, but not resistant at all (unlike in the past when he would run from teachers and have to be wrestled into the school by 2 or more people). I walked him to his classroom, and he went right in!!!! I felt like he would, but because of the nightmare we had last year I was anxious. I am SO relieved! I think I'll email Dr. K and give him the good news. So glad I can share here. Christie

Did your daughter have any reaction to the immunization? Is this what is considered a "live vaccination" or immunization? I would do it if I wasn't terrified that it would kick start his PANDAS again.

Amy, SOOO HAPPY to hear of your daughter's continued improvement!!!!!!!! You and your daughter give me and others much hope. Take care. Christie

So happy things went well for all of you!! Sounds like progress!! I know you must be very relieved. Christie

Hi All, First, an update. My 9yr. old son had IVIG in April of this year. He continues to do very well. Some days are better than others, but overall on most days, he is 90% better than pre-IVIG. We have had some minor symptoms crop up following times when I think he may be fighting something off. He had a minor sore throat for 2 days with an ulcer in his mouth and he also vomited once. No fever but just didn't feel very good. Since then, he has had some anxiety at bedtime, with nightmares around the same time every night. The nightmares went on for about 3 weeks and then got better. He still has the nightime anxiety (doesn't want to go to sleep without me in the room) but that seems to be decreasing also. None of this is a problem during the day. He also has had some very minor tics on and off since then, but they are gradually getting better also. I did double up on his abx. for 10 days, which did seem to help. He is enjoying football this year, whereas last fall he was an anxious mess. He is much more confident and is not afraid to tackle at all. In fact, many of the other boys are afraid to go against him. That really is progress. I am nervous about school starting on Monday, as his separation anx. before school was his most difficult symptom. I feel like it should go well, but it is so hard to fully relax after what we went through last year. I'll be praying alot before Monday. On a different note. I did take him to an Immunologist and request some tests. I'm not sure what to think of the results, and the Immunologist was rather vague when he spoke to me on the phone. He said my son's IGG subclasses total was in the normal range, but his IGG1 subclass was below normal. I asked him at what point he would treat this (IVIG) and he said if there were recurrent serious infections. My son appears very robust right now, but last year he was a sickly mess. His medical records are at least 2 inches thick because of his history of repeated illness. Not sure he "got" this part. From what I've read, IGG1 deficiency is the most rare of all IGG subclass deficiencies. He also did not acknowlege that this might be or might have been a problem for my son. He also drew strep pneumonaie titers ( not strep A). He wanted to immunize my son before he did this, but when he saw my face, he said he would draw them without. My son failed 9 out of the 14 strains. I'm wondering if this is a valid test because he didn't get the immunization to see how his body reacted. If it is valid, I'm concerned. Wondering if anyone out there has had these tests, and if Shaesmom had her daughter immunized before titers were drawn. Also, the recent study by Columbia with the mice mentions IGG1. Can anyone out there who is smarter than me shed some light on this? The Immunologist seemed like he wanted no part of all this and I could tell he was iffy on PANDAS. Thanks for any input in advance. Sorry is this is rambling.

Hi MomMd and all, My son had IVIG in April this year. He continues to do well, with a few minor blips. Let me explain what I mean by this. Almost all of his symptoms are about 90% better than pre IVIG most of the time. I have noticed a mouth stretch "tic" that seems to occur after exposure to pool water. It usually happens occasionally for about 2-3 days after and then dies out. Also, he developed an ulcer in his mouth that lasted about a week (these used to last about 2-3 weeks before IVIG) and with this, his nightime separation anxiety kicked in, but in a milder form. He began a lip licking tic that only lasted about 3-4 days. He also seemed to have a stomach issue along with this "viral" type episode. He ran no fever, just loss of appetitie and a little nausea. Anyway, all these symptoms faded as he felt better, with the exception of the sep. anxiety, which is gradually improving. I emailed Dr. K when I noticed all of this, and he wanted me to double his abx. for 10 days. I actually didn't do this, because I wanted to wait and see if it got worse, which it didn't and then quickly improved. To Mommd, I think I would like to have my son tested for immune deficiencies also, because I am suspicious that he may have this because of his history. I realize that treatment for some of these deficiencies is IVIG on a regular basis and my question to you is do you think a deficiency will show up in my son post IVIG? Would just one IVIG possibley cure a mild immune degiciency? I know you are not an immunologist, but I respect that you probably have a better grasp on this than most of us. I think I am getting nervous because school is around the corner, and I see that he does have mild reactions to sickness (this does not surprise me). Wish I had gotten him tested pre-IVIG. Thanks for any input you or anyone else has on this subject, Christie

An eye rolling tic (eyes went from side to side then up and around) was the straw that broke the camels back for me. When I saw this, I freaked out and began to realize that something was seriously wrong with my son. That is when I began my search and found out about PANDAS. This was a very disturbing tic for me to see and I am so glad it is now gone (post IVIG). Dr. K did say that the tics were the last to go. My son still has a slight mouth opening tic. I see it about 3-5 times a day, only on some days. Otherwise he is still doing tremendously well. Tics were not his main symptom.

Michelle, My son had urinary frequency that was very bothersome to him. His teacher reported that he was going an average of 8 times a day during school. He also had OCD issues concerning toileting. When he would go #2 (not sure what is polite here) he would wipe so much that he would often clog the toilet. Then he would feel like he had to change his underwear, eventhough there was nothing in them. This would usually happen before we were leaving to go to school, which was a major anxiety trigger for him. Most of the time I would have to wipe him to make sure there was nothing left (this occured even up through age 9) so that we could leave the house. It did help when I got flushable wipes, but then if he felt wet down there from using the flushable wipe and didn't get to wipe again with dry toilet paper, he had to go change his underwear. Thankfully, this is not an issue anymore since IVIG, so I would say from my experience that IVIG may help in this area. I'm SO sorry you are dealing with this. That must be VERY difficult and I truly sympathize. Christie