mama2alex

In our case we had some degree of adverse reaction, but a few days after stopping (we only did 3 days instead of 5) we saw a vast improvement. Not sure how all this might correlate with IVIG success in our case though, as we haven't had IVIG yet. I'm not sure where this idea that a good experience with prednisone = IVIG success came from. Prednisone is a powerful drug and I believe side effects are common with it. I wouldn't worry too much.

So glad to hear this! I agree, one good day definitely deserves a happy dance!

We are home schooling right now and for us, it's been a challenge. My son is constantly refusing to do what I ask, crying, negotiating to reduce the amount of schoolwork. He's also been very uncooperative with the home teacher they send us three hours a week. It's exhausting. Everything he gets done has my sweat all over it. That said, it has also been a big relief because there is so much illness going around his school, I just couldn't leave him up there. We are waiting to do IVIG for PANDAS and then start IVIG monthly for immune deficiency and he will return soon after the first dose. I think that you should just follow your own instincts as to what is best for him. It already sounds like you think he should take a break. I don't think it hurts them not to be in school for a while, and most likely helps due to reduced stress (on you and him), less exposure to illness, etc. Our principal seemed unhappy about our decision and made a point of telling me that even the kids with leukemia at our school are still showing up because THEY want to be there. She doesn't get PANDAS, no matter how many articles, videos or explanations I give her. She just thinks my son has a bad attitude and that we are enabling him. But she had to go along with it once our doctor signed off and the district office approved. You have the right to do this, and it sounds like he could use a break, so I think you should think about giving it a try.

I haven't seriously wondered about myself (although lately I've been so stressed my eyes have been blinking involuntarily on occasion), but I have wondered about my brother. He's had diagnoses ranging from ADD, anxiety with OCD tendencies, depression, panic and social phobia. I know first-hand that he had rages when he was growing up, and at 13 he turned to alcohol and drugs. He doesn't know when his anxiety started (he doesn't remember not having it), but I think the ADD was diagnosed pretty early, maybe 2nd or 3rd grade? He got into AA in his early 20's and is much better, but still struggles with anxiety/OCD. Interestingly, he also has very frequent illnesses, and I am trying to convince him to see an immunologist. I don't know if he had strep as a child (he's 6 years older), but I should ask him.

Hi, I'm so sorry this happened! I don't know how some of these people get medical licenses, seriously. I just got back from the pediatrician (DS has sore throat and PANDAS symptoms are amping, so we got a throat swab) and I saw your post and wanted to chime in. I looked back at your other thread and wondered what happened with your local immunologist and trying to get IVIG based on Specific Antibody Deficiency or other immune deficiency diagnosis? Is that still a possibility? And your not bipolar! Crying in fetal position sounds very familiar to me, and very normal for what you've been through. Hang in there, Jennifer

Good news - Dr. Lewis is going to squeeze us in this Thursday. So we'll be able to have a discussion with him and he'll be able to see Alex before he decides on the initial dose. I was probably worried for nothing.

This is a great idea. I usually just bring my binder, but I'll send the most important information ahead of time. And thanks for the encouragement. I feel very worn down at this point, and it's getting more and more challenging to stay positive.

Thanks Buster. This is great advice. Thankfully, I think we've done all the labs they'll ever need (much of it at Lucile Packard), and they've already identified his immune deficiency. So hopefully we'll just need to discuss the initial dosage. I will try to stay calm and be patient a little longer.l Thanks again, Jennifer

Thanks EAMom and Buster. We scheduled an appointment with him a while back, but it's not for another 2 1/2 weeks, which seems like forever. Do you think I should just have them wait until we see him then? Or do you think if I took in the CamKinase results and a list of symptoms (it's long and impressive!) and gave it to the nurse, he might go ahead and order the higher dose without seeing us. I wish I could move up the appointment, but I've called them 5 times in the last few weeks to try to reschedule and he never has any cancellations.

Okay, any input on this would be much appreciated. My son has been diagnosed with an immune deficiency (Selective Antibody Deficiency to strep pneumoniae), and Lucile Packard is planning to give him monthly IVIG. We are very happy and thankful for this, BUT the problem is, through an unusual set of circumstances, we haven't actually seen the immunologist there yet and through the nurse he's saying he's "not comfortable" giving 2g/kg to start. He's only willing to give 1g/kg. I know he prescribed 2g/kg for another family, so I don't know what's going on behind the scenes. We saw an immunologist at UCLA who ordered the tests, so maybe he called the immuno at Lucile Packard and recommended the lower dose. Or maybe it's just because he hasn't seen my son yet and hasn't seen his Cunningham results. In any event, I'm very frustrated and upset because this is just a random dosage, not the dosage used by Dr. K in Chicago or by Susan Swedo. I'm so upset my stomach is in knots - I hate to say it, but I knew there would be some kind of roadblock thrown up. I told the nurse about the Swedo study and said I knew another PANDAS child had been given 2g/kg. I also asked her to have him call me. I need some input on what to say to him - I do NOT want to do this half way! My son is suffering so much, I have not worked for 5 months to get him help only to get a lower dose than we need!

Buster, Thanks for providing this information. I imagine it will be useful to more than one person here at some point. Our pediatrician (not a nurse or receptionist) gave me a hard time about getting my son's records a few weeks into his June exacerbation (his first severe one that led to finally getting PANDAS diagnosed), but I gave her a hard time back. In the end, she charged me $50 for about 50 pages. Hi Pixiesmommy, Under HIPAA you have rights to her medical record with three exceptions: psychotherapy notes can only be given to other licensed psychotherapists records created for use in litigation are not made available to you if access would result in harm to you or another person These are federal requirements and their license can be in jeopardy if they fail to comply. In particular, they are required to present to you a privacy notice that includes information about how you can obtain copies of your medical record. If a written request is required, the privacy notice must tell you this. If you are denied access, you can file a complaint with the U.S. Department of Health and Human Service's Office of Civil Rights. Your state's medical privacy law might also enable you to file a complaint with state regulators. For a state-by-state guide to health privacy law, try http://hpi.georgetown.edu/privacy/records.html If you want a sample letter that is quite effective, use http://www.privacyrights.org/Letters/medical2.htm Given the severity of sanctions that happens if a provider fails to comply I am really surprised you are having any difficulties. Technically, HIPAA gives providers a maximum of 30 days to provide the records. One 30-day extension is allowed for good reasons. State laws typically provide even less time (and cannot extend the time). Essentially the state law can put more pressure on providers but cannot relax the requirements to provide records. I highly recommend sending registered letter using the form above -- don't call them, just send the letter. They can charge you a modest fee for the records -- typically this fee is waived but can be 1-5cent/page. Even if they have failed to respond to your demand before, you should restart the clock by sending them a new letter. If they fail to respond to you then within 180 days of the breach you can file a complaint with DHHS ( http://www.hhs.gov/ocr/privacy/hipaa/compaints/ ) Upon receipt of a complaint, the DHHS will contact the party. A person or organization that fails to follow the Privacy Rule can face an immediate fine of up to $25,000 and in extreme cases can involve the department of justice. If the DOJ get involved then this can be 10 years in jail and a fine of $250,000. Bottom line, you should be able to get the records. Buster

I'm so happy for you that you're seeing some healing starting to happen! Thanks for sharing this will all of us. It's very exciting and I hope you continue to see more changes for the better. Diana's an absolute angel, isn't she? Jennifer

Oh my gosh! They won't give you your daughter's records??!! I don't think that's legal!

DS9, 153 after several weeks of Zith (125mg) and 3 days of prednisone. Moderate OCD, severe separation anxiety, severe fear of robber in house, bombs in house, house starting on fire. Sleep issues, definace, anger, mild eating restriction. and aversions.

Susan, I like the letter idea. The nurse can't prevent the doctor from seeing that! If it would help, you could probably post it here and ask for people's comments. Talking to your uncle also sounds like an excellent idea. 500 mg for 10 days is a full dose, but not overdoing it (as far as I know) for a 68 lb girl. My son is 58 lbs and did 10 days of 500 mgs and is now on 375mg daily. In addition, we are working with a DAN doc to make sure any hidden strep colonies in his gut are eradicated. You can look at my posts on biofilm (a few days ago) for more on this. In one of the threads someone posted a link to a lecture by Dr. Usman on biofilms that is very informative (if you're interested). I don't think it's unreasonable at all to ask her to give you a quick call and then try to determine where she's headed, what her "experts" told her, who they were, etc. If she won't even call you, I'd find a new doctor. Good luck! It will all work out.

I am SO sorry you are going through this!! I've had a frustrating day and am feeling upset as well, but I have to say, I haven't spoken to Nurse Ratchett today (but it sounds like you did! ). Try to hang in there - you will solve this. Is it a big office? Sometimes when I get someone unhelpful or difficult on the phone, I just say thanks and hang up, then call right back hoping I'll get someone else. If you get someone else, you could say there was a mistake and try to get back on her schedule, or at least maybe they will pass your message along. I don't know how you feel about this, but I might be tempted to tell them that I did get a psych appointment after all. You could then try to get one before the immuno appointment, or just tell her it fell through when you get there. After I read through your post, I did wonder if she never got around to calling the "experts" and is just trying to stall. Who knows what's behind it though. Not sure how helpful any of this is, but I do hope your day gets better! Jennifer

My son's score was 153. No tics, but OCD and separation anxiety, and many other things that go along with this. Not sure how to characterize it - to us it feels severe, but in the big scheme, it's probably moderate. He can still attend school and hold it together, although he usually won't eat there.

I posted earlier about our DAN doc putting my son on a regimen of digestive enzymes, EDTA, fiber supplement and garlic to cut through the alleged biofilm that could be protecting a colony of strep in his gut. Well, we've barely started it (only added the enzymes and fiber plus a different probiotic) and BAM, tonight my son's was through the roof. He was yelling at us, afraid to get near me, wouldn't let me or my husband touch him or anything he was touching. He was frantic. I'm going to call the DAN doc tomorrow and see what he thinks. On one level this was terrifying and heartbreaking to us - he's never been afraid of us touching him or his things, but I'm wondering if our doc is on to something and we are already cutting through this mucus layer and getting the hidden strep out into the open where the antibiotics can do their stuff on it. The doctor did say that if he's right about the biofilm, my son would go through a regression for a bit. If this is what's happening, it's pretty good timing because we just upped his Zith to 375mg per day. I hope we haven't made things worse, but I have a feeling we may have actually made a breakthrough here. Will post more as we go.

NeverGiveUp, Thank you for this information! We are waiting for them to call us back after I told the nurse yesterday that we want to start with 2g/kg for PANDAS and then go to whatever dose they recommend for SAD. I think this threw her for a loop, because the immunologist at Stanford hasn't actually met with us yet. (It's complicated, but we initially went to UCLA to see two immunologists there, but have done all the labs, vaccine, x-ray, etc through Stanford because we live in No. CA and see a pulmonologist in the same practice as this doc). So we'll see what they come back with. I thought I remembered the UCLA docs saying they do 600mg/kg for SAD, but I can't find where I wrote this down, so I'm not sure. The nurse said 6 month trial initially, but I'm not sure she'd even spoken to the doc yet. I will post under a new thread when I know the details. Can you post more about how they measure globulins before and after each IVIG? Do you think this is something we should ask them to do? Is there a name for this test? Thanks! Jennifer

Peglem, Just want to clarify that I (and I think NeverGiveUp) were not referring to Srep A infections when we said to compile a list, but to ear, sinus and lung infections (such as pneumonia) that would support the low strep pneumoniae titers in giving an immune deficiency diagnosis. Has your daughter had recurrent sinus, ear or lung infections? These are caused by streptococcus pneumoniae bacteria, which I understand is not "strep," just has the name streptococcus in it for some reason (this is what one immunologist told me - very confusing). I agree you should try one more time to work this out with your existing immunologist, but move on if they aren't helping you. I can't believe your daughter has low IgA, IgG and IgG4 and they still won't give you a diagnosis and treat! What more do they want?? Hang in there. You can push this through and get her the treatment she needs.

Peglem, Thanks for posting the link! I watched half her presentation the other night and it's very interesting. I'll watch the rest as soon as I have a chance. Do you have any info on intracellular strep that you can post? I had never heard of it until this forum.

We did the biofilm protocol for about 9 months. My son's DNASE went down but then shot back up again, so we did IVIG and haven't done biofilm protocol since then. The theory is that the biofilm is a mucus-like substance (like a raw egg white) that surrounds and protects the yeast, bacteria and viruses within, and makes it difficult for any antimicrobial products to penetrate through the coating and kill the bad stuff inside. You take the EDTA, garlic, and enzyme on an empty stomach to attack the biofilm; wait about 30 - 45 min and take the antibiotic to attack the "newly naked" strep bacteria. Then take the pectin fiber supplement an hour after that to grab hold of the strep bacteria, etc., and carry it out of the body. Ideally, this whole process should be done twice per day. We could only fit it in once per day on school days, and twice per day on weekends. Hope this helps... Mary Thanks for responding - this is helpful. Do you think the protocol was working and then your son got a new infection? Or do you think the protocol stopped working? Did you see a reduction of symptoms along with the change in titers? How has your son done since IVIG? The protocol he gave us is a little different - same stuff, but more complicated timing. We'll see if it does anything

I'm sorry - this must be so frustrating! I think it's NeverGiveUp who's father is an immunologist. First of all, don't take the nurses word for it (or even the doctor's) - have them give you a copy of all the results. If they push back, tell them you have a right to a copy and will pay for the copying costs. Then look at all the numbers carefully and ask some questions here if you need to. Many of us have learned to read these lab reports out of necessity. Second, has your daughter had repeated infections? Sinus, ear, lung, etc? A history of this can support the argument that she has an immune deficiency, without it I think they have a weaker case for the insurance co. My son failed his s. pneumo titers as well, and we decided to revax a month ago. We did this because he's had 6 pneumonias in 5 1/2 years, plus repeated ear infections, so we were highly suspicious of Specific Antibody Deficiency. We just got the results back yesterday (although I haven't seen the numbers yet) and the nurse said he made a "very poor" response to the vaccine and she would start the paperwork for monthly IVIG. We were assured before we ever got the vax that if he failed the post-vaccine titers, there would be no revaxing. So I can't understand why your doctor did it twice the first time! Then to want you to give your daughter a third dose of an essentially adult vaccine in two years?! I think this is ridiculous. We've read that adults are only supposed to get it every 5 years. Can you get another opinion - just on the immune deficiency portion of it? Then if they are willing to treat with IVIG you can talk about PANDAS and possibly starting with a higher dose. We called an immunologist in Omaha, NE who was recommended by one of the mom's here. He was willing to do a phone consult with me after I faxed him our lab results and was very helpful. I can send you his info if you're interested in talking to him. It's so frustrating - all these immunologist work differently and many of them think giving a vaccine to a kid who already has immune problems is no big deal. Good luck and keep us all posted on how it goes. Jennifer

Our DAN doctor told me about biofilms today. He said they're a layer of protein and sugars produced by strep (and other bacteria) that help it resist antibiotics. He said it also attracts calcium, magnesium and iron, which somehow help to protect it - I can't remember exactly what he said about that. He's putting my son on a protocol of digestive enzymes, EDTA, a fiber supplement and a garlic supplement to help break these up and make the strep more vulnerable to the antibiotics and immune system. Has anyone else heard of this and/or been on a similar protocol? Here's a link to the Wikipedia definition and a paragraph on formation of biofilms: http://en.wikipedia.org/wiki/Biofilm Formation of a biofilm begins with the attachment of free-floating microorganisms to a surface. These first colonists adhere to the surface initially through weak, reversible van der Waals forces. If the colonists are not immediately separated from the surface, they can anchor themselves more permanently using cell adhesion structures such as pili.[5] The first colonists facilitate the arrival of other cells by providing more diverse adhesion sites and beginning to build the matrix that holds the biofilm together. Some species are not able to attach to a surface on their own but are often able to anchor themselves to the matrix or directly to earlier colonists. It is during this colonization that the cells are able to communicate via quorum sensing using such products as AHL. Once colonization has begun, the biofilm grows through a combination of cell division and recruitment. The final stage of biofilm formation is known as development, and is the stage in which the biofilm is established and may only change in shape and size. This development of biofilm allows for the cells to become more antibiotic resistant.

I promised I would post after speaking to our DAN doctor. I spoke to him this morning and he couldn't really give me an answer about Biotin being depleted by antibiotics (he didn't seem to know). However, we are testing my son's vitamin and mineral levels, including Biotin, so we will know for sure if we need to supplement this or anything else. If my son is deficient in this, I'll post again. I'll know in a few weeks. He's never had a Biotin deficiency in the past.