momtocole1

Dear Charlotte and Buster, Thank you for highlighting this Vitamin D issue and taking a closer look at the IgG numbers. I will contact the lab today to find out what age range they were using for normal. I will also post to see what others lab results have said about what is "normal". One thing I did notice specifically on my son's lab result sheet was that it notated that the normal range was just updated a few weeks ago. Don't know what that is all about. Do they look at "the communities" results during a specific period of time and adjust what is considered normal. Boy do I wish that was uniform everywhere. The immuno was also arguing with me about the weak responder result on 1 of my son's strep Pnuemo serotypes. He was a "non responder" on 5 of the serotypes and a "weak responder" on 1, and one was just fine. He said we would have to re-vaccinate to get a "true" number. What really bothers me is that this doc was not willing to recognize a problem here. Why do we even have lab "ranges" if a doctor is not willing to say there is a problem if the lab sheet shows one. So the doc was saying, normal is normal is normal, but the strep pneumo was not showing normal, it was showing "non-responder"on 5 of the 7 and weak on one. I am just so confused. There is NO WAY I would want to re-vaccinate. In talking to Diana Pohlman there really seems to be a theme where many of these PANDAS kids show up in the "low normal" range for some or all of the IgG sublasses along with failure on the strep pneumo vacs. Both of which the Immuno we saw at UC Irvine, CA was COMPLETELY unimpressed with. I know I say this so much, I sound like a broken record, but if we lived back east I think his IVIG would get covered, but he is too severe right now to get on an airplane. We looked into a train trip. 44 hours from Southern Cal to Chicago. I don't think my son could do it. He has a huge fear of any windows or mirrors or pictures that reflect. I believe we will be able to get this IVIG scheduled in the next few weeks at Children's Hospital Los Angeles. Thanks again to both of you and others who have commented. I love this forum. Judy... Hi Charlotte, My personal opinion is that momtocole1 child could be considered to have low Igg subclass 1 and the finding with other symptoms might be consistent with CVID. There is a nice chart of Igg1 plotted against age groups in normal children (see http://www.ncbi.nlm.nih.gov/pmc/articles/PMG1554695/?page=2 ) While this is a small sample it indicates that Igg1 should be > 500mg/dl for a 7-12 year old. I'm not quite sure of what age group was used for "normal" in mom2cole1's child. This would be a good question for the lab and easy to check. The expected value for a 5 year old is quite different than for a 12 year old. Can't say from the insurance side, but I think there's a good argument there. Definitely worth nudging the doctor to see if the clincal symptoms are consistent with a CVID diagnosis -- along with the measured Igg1 low band. Regards, Buster

Dear DC Mom, Can you comment on why it is not good to do the steroid burst if they have tics? I know I have read about it somewhere but I don't remember. If that is not good, that may be the reason that my son had such a bad reaction. Since his OCD has gotten so bad recently he has taken to saying his OCD words over and over. Like blurting out, obscure words over and over. I thought they actually were verbal tics, but he keeps telling me it is the OCD. On the second night of the steroids it was like he went into complete overdrive and sounded like he had full-blown tourettes. Dr. K. is not concerned about this at all and actually wanted me to continue, but I chickened out because he was so distraught. Thanks, Judy...

Hi Jennifer, Thanks for the note and the encouragment. I know exactly how you feel and I liked your analogy about standing in the middle of the quicksand screaming. It reminds me of Shirley McClane in that famous movie with Debra Winger. When her daughter is sick and she is screaming out at the nurses desk that it is time for her daughers pain medication and the nurse is looking at her like she is crazy. I can't remember the name of that movie! It has Jack Nicholson in it too. I remember renting it back when I was in high school and my Mom saying, "Oh, you feel like crying today, huh?" Imagine, a time in my life when I had to rent a movie to cry, wow, what a concept. Now I will cry if my son smiles at me for 2 seconds or lets me touch him or hug him. Most days I don't even bother putting on mascara! I will keep the info on Dr. Packard in my back pocket. I think we are going to be able to go to Childrens's Hosp LA to get the IVIG. You are lucky you have the immune def. diagnosis for your son, I can't believe I am saying that, but you know what I mean. Thx again for the note, Judy....

Hi Faith, I know it must seem strange that I am calling it a waste of time. I guess because after all that I did, dragging Ryan in there, getting more blood work, I am still at the same point. I need to find someone else to do the IVIG and it is still not going to be covered by insurance and I still am dealing with a this doctor that is so closed off and stubborn. Yes he did order the IVIG but it is using his protocol. It would be $14,000 just for the medication do do it with him and that does not include any of the "infusion center or doctor fees" and we would not be gettting the dose that Dr. K. wants him to get. So what I am concerned about is if we go through all this and it is not a high enough dose to help Ryan, especially with how severe he is then am I back at square one? I'm sure it would not hurt him to get a lower dose and in some ways I'm sure it would help him. But I feel that I have come this far and I want him to get all that he needs. All Dr. K. kept saying on our phone consult was, your son is not able to function, he has started into puberty, your only option at this time is IVIG and with that, at his age you can expect a 60% to 70% recovery. It was so hard to hear that. I feel like I am running through quicksand trying to get this treatment for Ryan while he is slipping away. I just don't want to put him through all this with Dr. Gupta and take a chance that he won't respond. Also, with Dr. Gupta it all seems so "back alley". He won't do it at UC Irvine, because he said it is not FDA approved for PANDAS kids. His "infusion center" is ASG Infusion Center which stands for his wifes name, his name and then Gupta. The other thing that concerns me is that a Mom that I have been talking to in Los Angeles priced out the Gamunex. She contacted many different distributors and the highest price being charged was $115 per gram. Dr. Gupta was going to charge us $135 per gram. That is $20 more per gram than the highest price found in LA, at 110 grams that is a $1200 difference. When I asked him if he would be there when Ryan would get the IVIG, he said "Oh no, I don't do that". He acted insulted that I even asked. My poor little boy is so sick. We have had to take every picture and mirror down in the house so that he won't see his reflection in it. He can barely even leave the house anymore, hardly will ever even shower and this doctor won't even pick up the f*&*&*&ng (excuse my french) and call Dr. Lattimer or Dr. Boubalise to see how they are getting this covered for children that have the exact same lab results as Ryan: low normal IgG numbers and a failure on the strep pneumo vaccs. Before I left his office, I said, okay, forget the insurance, I want to give you these resources and information so that when there is another mother sitting in this chair you can help her child too. He said I have many other children in my practice and their IgG numbers are far lower than your sons and I can't get their IVIG's covered by insurance. He even insinuated that these other doctors that are getting it covered are just lying. Then when I called him on that he got very defensive. He also said, this is why I don't even go to those "DAN" conferences anymore because these crazy doctors are there saying these things that are not science, it is just not science. So that is why I won't be going back. I will send him a letter though, in a year, when Ryan is doing better and I will tell him that we got the proper IVIG treatment that he needed and how well he is doing. I say that and I may not even waste my time. This doctors heels are dug in so deep it is no use. The scary thing is he is training other doctors. Okay, I know I really went on a tangent. Does it make more sense now why I am so upset? Also, I think you are right, he does not want to get involved with the whole PANDAS thing... Sorry, if I went off on a tangent there. Thx, Judy...

I went for a follow up appt yesterday for my son with an Immuno at UC Irvine, CA. He is an immunologist. He was very difficult to talk to. He was not willing to make any phone calls or email any of the other "PANDAS" docs on the east coast or Dr. K. I was armed and ready to see him. Diana Pohlman helped me to gather information/articles to help "educate" him. It was very clear that he did not want a "crazy PANDAS mother trying to educate him". He said because my son's IgG numbers were still in the normal range he was not willing to even try to submit a request to insurance for IVIG coverage. I told him that Dr. Lattimer at Georgetown and Dr. Boubalis (sp) an associate of Dr. Leckman at Yale Univ. had been successful in getting IVIG covered for children that had LOW normal IgG numbers and have failed their strep pneumo vaccines. My son was at the rock bottom of the normal range for IgG sublcass 1, very low normal on IgG subclass 3 and rock bottom of normal on total IgG. This meant nothing to him. My son failed 5 of the 7 strep pneumo strep strains in the vaccines and was in the weak responder range for the 6th. (Because my son is 12, he was only vaccinated for 7 strep strains instead of 14 like the younger kids are now). I was shocked at this doctors arrogance, and his lack of cooperation. I was really careful not to give him information about "the forum", you know that term that someone mentioned recently that I love, TMI - Too much Internet. He said "there are no recent studies on PANDAS and he said Dr. Swedo isn't doing anything with PANDAS anymore". I made sure to correct him on that. He also said that because Ryan's ASO titers were negative and Anti Dnase B was normal that he did not have PANDAS. He said, "you have to have a strep infection to have PANDAS". I said, that my son had 4 positive strep throat cultures. (I had all of that documented and gave it too him at the first visit). He never even bothered to read through any of it. After he realized about the 4 positive strep throat cultures and the rapid onset of tics and then OCD he then agreed my son does have PANDAS. I am so exasperated! Anyway, all in all it was a complete waste of time for me to see him. All was not lost, at least he ordered IVIG and when I asked him if he would be willing to follow Dr. K.'s protocol he said no, I have my own protocol. I am concerned that the dose he wants to do it too low and also I am worried about doing it in his "infusion center". I am going to pursue getting the IVIG at Children's Hospital Los Angeles, with Dr. K.'s protocol. Another Mom on the forum just had her twins get their IVIG their (they are 5) and the hospital was fantastic. Other people have seen this immuno and found him to be fine. I was just so put off by his lack of understanding and empathy for my son and his complete unwillingness to educate himself with more up to date information. If anyone is thinking of going to an immuno doc at UC Irvine, feel free to PM me for more detailed information. Thanks,

Dear MamatoAlex, If I were you I would print out the PANDAS in the school info that I found on the old posts. Let me know if you want me to find it again and forward it to you. I would specifically show them the article that was written by the grown man with Sydenham's Chorea. PANDAS is so closely related to Sydenham's Chorea. The man that wrote that article talked about what it was like to sit still that it was like torture for him. He said that if he were given a choice whether to sit still for one minute or cross a tight rope between two sky scrapers on a windy day he would most definately choose the tight rope. He also talks about why people with SC have to movee all the time, that moving is what stops the horrible antsiness (sp) that they feel. I'm not sure if your son has had the Madeline Cunningham blood work done, but my son's CAM Kinase II number was 165. He was in the upper range of PANDAS on the JNI article. There were only 3 PANDAS kids on the scale in that article that were higher. (I know that there are kids being tested know with numbers much higher, like in the 200's) What I keep looking at is how close our PANDAS kids are to the SC kids range and some are even in the same range as the SC kids. It just makes me so angry that they are putting you through this. Dr. K explained something to me on our consult the other day that really hit home to me. I asked him how we can possibly explain PANDAS to our family. We have some people that don't even believe that my son Ryan has PANDAS, they think he just has a bad attitude and that he is "playing us". Dr. K. said that it is no use, there is no way to explain it to our families (or schools). That they will never understand. He said if your son had a huge gash on his forehead, people would come from 5 miles to hold him and help him. If he then spit in their faces and called them bad names, everyone would say, oh no, he can't help it, he has a head injury. But when there is a brain injury, and that is how I look at it. Our kids have swelling of their brain. He said people can't SEE psychiatric symptoms and because we are raised in an ideaolgical, freudian society we are taught, "If we want to get better bad enough, we can work on it and get better", but these kids can't get better on their own. They can't be talked through this, counseled through this, they can't just "pick themselves up by their bootstraps and move on". Sorry, now I'm venting. Is there any way possible to move him to a private school? Does he love the school he is in? My son was so relieved when I finally took him out of public school, he was scared, but relieved. I also wonder if you could send a letter or email to the school, explaining in more detail about what is going on. Just some suggestions. Once my son's teacher read the handouts that I found on this forum, she told me he should stay home and be homeschooled until after the IVIG. I know that is because he is in a private school. The schools are just so by the book, they just want the money they get from our kids sitting in a seat! My heart goes out to you, Judy...

Dear MamatoAlex, If I were you I would print out the PANDAS in the school info that I found on the old posts. Let me know if you want me to find it again and forward it to you. I would specifically show them the article that was written by the grown man with Sydenham's Chorea. PANDAS is so closely related to Sydenham's Chorea. The man that wrote that article talked about what it was like to sit still that it was like torture for him. He said that if he were given a choice whether to sit still for one minute or cross a tight rope between two sky scrapers on a windy day he would most definately choose the tight rope. He also talks about why people with SC have to movee all the time, that moving is what stops the horrible antsiness (sp) that they feel. I'm not sure if your son has had the Madeline Cunningham blood work done, but my son's CAM Kinase II number was 165. He was in the upper range of PANDAS on the JNI article. There were only 3 PANDAS kids on the scale in that article that were higher. (I know that there are kids being tested know with numbers much higher, like in the 200's) What I keep looking at is how close our PANDAS kids are to the SC kids range and some are even in the same range as the SC kids. It just makes me so angry that they are putting you through this. Dr. K explained something to me on our consult the other day that really hit home to me. I asked him how we can possibly explain PANDAS to our family. We have some people that don't even believe that my son Ryan has PANDAS, they think he just has a bad attitude and that he is "playing us". Dr. K. said that it is no use, there is no way to explain it to our families (or schools). That they will never understand. He said if your son had a huge gash on his forehead, people would come from 5 miles to hold him and help him. If he then spit in their faces and called them bad names, everyone would say, oh no, he can't help it, he has a head injury. But when there is a brain injury, and that is how I look at it. Our kids have swelling of their brain. He said people can't SEE psychiatric symptoms and because we are raised in an ideaolgical, freudian society we are taught, "If we want to get better bad enough, we can work on it and get better", but these kids can't get better on their own. They can't be talked through this, counseled through this, they can't just "pick themselves up by their bootstraps and move on". Sorry, now I'm venting. Is there any way possible to move him to a private school? Does he love the school he is in? My son was so relieved when I finally took him out of public school, he was scared, but relieved. I also wonder if you could send a letter or email to the school, explaining in more detail about what is going on. Just some suggestions. Once my son's teacher read the handouts that I found on this forum, she told me he should stay home and be homeschooled until after the IVIG. I know that is because he is in a private school. The schools are just so by the book, they just want the money they get from our kids sitting in a seat! My heart goes out to you, Judy...

Thank you so much, I was able to get many codes. I am bringing them all. Thanks for the kind note. I can tell that you can relate! I'll keep everyone posted... Thanks, Judy...

Dear Suzan, That is a good question about whether she is in between the equivocal and positive range. I wish I knew the answer. I will ask my immunologist tomorrow at appt. What is even more confusing is that I think different labs can show different ranges as to what is normal and what is not, then different docs have different opinions. For example, my son's IgG numbers were very end of normal range for two subclasses and also for total IgG, I mean rock bottom of normal range. Dr. K. said he was not impressed by any of those numbers. This is frustrating... I am hoping that the immno IS impressed with those numbers so that the IVIG will get covered. I am going to talk to my son's ped who is a DAN doctor about the HHV6 numbers. Thanks again for posting this. I love this forum! Thanks, Judy... Hi Judy, I am in North Carolina. There has been some talk about a strong strep strain here too since we have a growing population of pandas kids. I think my dd's hhv6 titer was 1:90. If so, does that mean that it's in between equivocal and positive? I hope I get a copy of the report tomorrow. I am glad your son is showing signs of improvement too. I was trying to decide today how much improved dd is in 5 days. I'd say she's at 90% at least. Maybe even 95%. Since she has had pandas for so long, I don't even know what 100% means. Susan

Hi Faith, I think it helped for a short period of time and then when we had the toot extractions things started to go way downhill again. We started back on azith a few days back and he is doing a little better, but still struggling quite a bit. Some really good things have been happening, but there is still severe ocd going on. I see Dr. Gupta, Immuno at UC Irvine tomorrow. I'll keep you posted. Thanks for the birthday wish! Judy...

Hi Bronxmom, We are home schooling right now. I am hoping and praying that after IVIG he can return. He is in a very small private school that has teacher that is loving, patient and understanding of this disorder ( I flooded her with documentation on PANDAS) She has a heart of gold so we are so grateful. Thanks, Judy...

Dear Susan, I am so excited for you about how the increased Zithromax is helping your daughter. We took out son off the Augmenting 3 day ago and put him on 500 mg. of Zithromax and we have noticed quite a bit of improvement. He is still struggling significantly in other ways but overall he is happier. What part of the US are you in. There has been some discussion regarding a strong strep strain in Cal. that is resistant but seems to respond well to Zithromax. Can I also ask you what your daughters HHV6 numbers were? After reading your post, I went back and looked at my sons that were done recently. He showed: HHV-6 IgG Antibodies, Quant - 1:80 The results range says: <1:20 = Negative 1:20 - 1:80 -= Equivocal >1:160 = Positive My son is at the very top of the equivocal range, but not in the positive range. He does get impetigo sores frequently and canker sores here and there. I just wanted to compare. Please, please keep us posted on how your daughter does on the Valtrex.... Thanks, Judy... She is 8 yrs old and is 70 lbs and pretty tall (4 feet 10 inches maybe) - Edit: She can't be that tall, maybe 4ft 7") She was on 250 mg daily and we saw an initial improvement the first 6 weeks but then as we started weaning her down, things went down hill and never got back to what it was even after going back on 250 mg daily and was getting worse. I double her dose to 500 mg daily and I noticed a change in less than 24 hours. We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith). Susan

I have read a few posts that list the insurance codes that were used for IVIG. I could kick myself for not writing them down. We see our immuno at UC Irvine on Monday and I wanted to talk to him about the codes. Actually also about the fact that we want him to do an IVIG for our son as soon as possible. He did fail 6 of the 7 strep pneumo serotypes (strains). Also his IgG numbers are at the very bottom of the normal range on 2 subclasses and total number. I tried to do a search on insurance codes on the forum to find where others have written about it and I still could not find it. I am a little sad tonight... My son turns 12 tomorrow and he is slithering along the floor trying to avoid seeing his reflection in any mirror or window in house. If he sees himself he has to go through a whole slew of "OCD" words. His knees are all scraped up because my husband took him out with his sister for icecream last night and he crawled up the driveway. Oh, and they never made it to the icecream shop, he was too scared. My neighbor went on vacation to Kauai a couple of days back. Her husband called me from their 5 star luxury hotel to ask me if I would get their mail, pick up their paper and oh, yeah, the trash too. Oh sure, just call me Cinder-frickin-rella! Meeeeee? Jealous???? No. Hey, I have an idea, maybe my son could just crawl over there and pick up their paper, yeah that's a good idea. I actually really like these neighbors, they are our friends and they are so loving to my son and our whole family and they would get our paper, mail and trash for us if we can ever go on vacation.... Sometimes I just feel sorry for myself, our son and our whole family. Then I snap out of it and keep going... Anyway, if someone has the insurance codes that helped them get their IVIG covered that would help so much. I guess I need a 4 or 5 digit number procedure code and then another one that is a diagnosis code? Have a good night... Thanks, Judy...

Dear Michele, When I read your post it brought tears to my eyes. It reminds me so much of my son. Hold old is your son? Mine is 12. My son had so much trouble in the public school system. His worst fears at that time were bees, high winds, thunder storms and potential earthquakes. When I tried to do homework with him it became impossible. We would go on for hours just trying to get him to do just one little section. The best decision I ever made was to take him out of public school. Some of the other children discussed in this forum are in public schools and they are doing fine there. But for my son, it just got to be too much. I think if I really pushed it, I could have forced the issue, he is very bright and there was no question that he knew the material. He did fine in 1st and 2nd grade. Not to say he didn't have quirks. He got his first strep infection at the end of 1st grade (April 03). It was when he got into 3rd grade when it got too difficult. The multi-step math problems just became too tough for him. I just did not understand. In 1st and 2nd grade math was a breeze for him. He started to put his head down and gave up. We had an IEP meeting in the 3rd grade and they modified the amount of work that he had to complete. It was still too much for him. Doing less problems also made him feel "dumb" if the other kids noticed. Please take a look at a post that I put on the PANDAS forum on November 1, 2009. It references some very good articles about PANDAS in the school and what is like for a child with PANDAS to sit still in school (while in an exacerbation especially). I found these great articles when I did a search of the archives, somebody else originally posted them and they are great. One of the articles is written by a grown man that had Sydenham's Chorea and he talks about how torturous it was for him to try to sit still. I know that Sydenhams's Chorea is not the same thing as PANDAS, but there have been many discussions about the similarities between the two disorders. The post # I am referencing is Post# 43616 by MomtoCole. My heart really goes out to you. I hope that this forum is a source of help. Take Care, Judy...

Hi Faith, I am hoping Dr. Gupta will do IVIG, second choice is Children's Hospital LA. When things calm down I need to call you and talk to you about consult with Dr. K Thanks, Judy...

I'm asking this a differenty way now, because I can't sleep I am so worried. Has anyone's child had an adverse reaction to the steriod and they went on to do IVIG with a successful outcome? Dr. K. wrote me back and was not overly concerned at all about my son's reaction. He said it happens and it usually settles down in a day or two spontaneously. He told me to just stop the burst since we are doing IVIG asap... Thanks, Judy...

Ahhh Vickie, it's so nice to know I am not alone... Thx, Judy... I do that too! You're gonna get through this, lady! Things are going to get better! You may even retrieve your sanity!

Dr. K. told me I could stop, so I did, he is still having trouble but he is so much better tonight. I am going to post something more about what you just asked... Thanks, Judy...

Yes we have been using ibuprofen generously and it helps him calm down quite a bit. It was the onlly thing that broke the horrible situation we got into last night. Dr. K. said to stop the steriod since we are doing IVIG no matter what at this point...

My son had a very adverse reaction to the steroid burst last night. It was after his 3rd dose. He is on 30 mg. twice per day. 60 mg total, he is 12 (next week) and 120 pounds. He was not able to swallow the brand name of prednisone crushed up, he vomited it up. I called the pediatrician (after talking to the pharmacist) and asked him to write it for Orapred which is Prednisonlone, my ped said it is the same as prednisone. We were able to get it in an oral disintegrating tablet that you put on the tongue. I can honestly tell you that we had the worst night we have ever had with our son. He was screamin uncontrollably for many, many hours. He was screaming out many of the "OCD words" that he has said over a long period. Food items, random items, jumbled words that are merged together to make new words. He would not let me touch him or hold him. It was the most heartbreaking thing ever. I am so afraid that because he had such an adverse reaction that it could mean that he does not have PANDAS or that IVIG will not help him. I don't even want to say that, but I am absolutely terrified. My 7 year old daugther was woken up by all of her brothers screams and was so frightened. Trying to block her ears to drown out the screaming. My husband finally had to go sleep with her. I tried to have Ryan lay next to me. He was sweating profusely. Every time I tried to touch him he would scream and ask me to retouch that same arm or shoulder or whatever again because the ocd would tell him to. We had our phone consult with Dr. K yesterday so I just tried to call him. He is doing an IVIG right now, so his secretary said I can call him at 12:30 Chicago time. My question is, does anyone know if prednisolone is the same as prednisone? Has anyone on the forum had their child have an adverse reaction to the steriod and then still be able to have IVIG be successfull? I am terrifed, all I ever hear on the forum is how their child did wonderfully on the steroids, that all the symptoms went away. Please write back as soon as you can. Thank you, Judy...

Dear Elizabeth, How is your son doing? Were you able to get any of the IVIG's covered by your insurance? Thanks, Judy...

Dear ShaesMom, I am so happy that your daughter is doing so well. It was really helpful to see the history. You have been through so much. Could you share the insurance codes that your immuno used for your daughter. We just had a phone consult with Dr. K. and he wants us to get IVIG as soon as possible. We see immuno that will hopefully do the IVIG next week. My son failed 6 of the 7 strep pnuemococcal strains from his vaccines. They did not vaccinate against 14 strains when he was born. 3 of his IgG numbers are at the very bottom of the normal range. I am hoping for an immune deficiency diagnosis, but I think it depends so much on the immuno doc, and the insurance company. What is very interesting is that they still covered it even though her levels were normal on all IgG subclasses. Can you tell me what insurance you have. We are potentially switching to a new plan in January and I want to find one that I will have a better chance at having the IVIG covered. I know that the main reason that they may be covering it is because her clincal history but I am just hoping against hope that we can get this covered. My husband is self employed and we don't have the money to pay for this up front. I have seen these codes before on this forum and I have been trying to search for them so I can call my insurance company to see if IVIG will be covered. I think I need the diagnosis code and the procedure code right? I can't wait to see if you are able to talk to the Mom that had the child in the PANDAS study that is doing so well now. I can understand why she does'nt like to talk about that time. My fingers are crossed that she will agree to talk to you Thanks, Judy...

We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense. Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on. That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful. Yup Just checking, on things -- it looks like the only cultured strep was all the way back in February. About 3 years ago, your ds was diagnosed with PANDAS when he was 8. In February he got a strep infection and had sores in the corner of his mouth You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse You tried motrin (advil) and this seemed to help but couldn't be sure You then tried 14 days of azith and then switched (?) to 600mg Augmentin By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping. You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant. You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg Augmentin Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentin Then yesterday, things sound like they got better where he's able to wear certain shirts again However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated. Is this about right? Buster

Dear Buster, Wow, you are pretty good at summarizing things. I am going to add in a few things in bold... We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense. Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on. That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful. Yup Just checking, on things -- it looks like the only cultured strep was all the way back in February. First Cultured positive strep was 4/03, he then had 3 other documented positive strep throat cultures and 11 documented pharyngitis episodes, at least 75% were precipitated with the impetigo sores on outer corner(s) of mouth. About 3 years ago, your ds was diagnosed with PANDAS when he was 8. - 1/31/06 - went to ped. for strep culture. Doc notes state "Mother states when son was put on Azithro recently all tics stopped, ?pandas?" In February he got a strep infection and had sores in the corner of his mouth You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse You tried motrin (advil) and this seemed to help but couldn't be sure You then tried 14 days of azith and then switched (?) to 600mg Augmentin He was actually on azith from April until July of 09. By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping. You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant. You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg AugmentinBlood draw was pre-1000mg of Augmentin. Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentinSome things have gone well and others have not. OCD is still there but it was less intense. Very few rages, then things went downhill after recent dental work Then yesterday, things sound like they got better where he's able to wear certain shirts again However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated.Symptoms have gone up 10 notches. Complais of sore throat, rapid strep was negative, may be experiencing a viral infection that is causing symptom flare up. Is this about right? Yes, thank you for doing that. I am still so confused on all the IgG stuff, but I'm sure immuno will explain it more. I can't believe I was actually hoping for an immune deficiency. Thanks again, Judy... Buster

Reposting, the results were spaced out when I entered them but they were squashed together when it posted. One more time: My son's result Reference Range IgG subclass 1**** My son's Result was 425 Normal range is: 423-1060 IgG subclass 2*****My son's Result was 349 Normal range is: 76-355 IgG subclass 3*****My son's Result was 41 Normal range is: 17-173 IgG subclass 4*****My son's Result was 39 Normal range is: 2-115 IgG total *********My son's Result was 860 Normal range is: 821-1835