ShaesMom

Another good place to learn more about IVIG is www.IGLIVING.com You can search past articles.

You can google IGA deficiency and IVIG to see the risks. IVIG is predominately made up of IGG but there can be very, very small amounts of IGA (basically as a contiminate). If someone has an IGA deficiency they are at a greater risk of having an anaphylactic reaction to the small amounts of IGA that may be present in the IVIG. I do not believe that it is routine to do test for an IGA deficiency prior to IVIG. When my dd had all her Ig levels checked it took about two weeks to get the results back. Read up on the side effects of IVIG before you go in so you are prepared. Are you having it done at a hospital or infusion center? It is very important that the nurses keep checking on your child every 15 minutes. Don't let them go past 30 minutes without checking temp and blood pressure. At the first signs of a headache, neckpain, nausea, increase in temp or change in blood pressure, they should slow the rate down. Make sure they start slow, around 9, and increase it slowly. If you are having it done at an infusion center they will likely be more educated about how to infuse than the nurses at a Ped ward who do not do it every day. Do not be in a hurry. If your doctor does not do so, make sure you medicate beforehand. Motrin and Benadryl are commonly given beforehand for side effects. Some doctors will give a steriod as well. Get a RX for EMLA cream or ask for it. This will numb the IV site. If you get the RX, pm me and I will tell you how to apply it and where to apply it. I would give motrin & benadryl the night before and the morning of. I assume you are doing a two day IVIG, continue to give the meds throughout day 1 and day 2. I would also keep them up through day 4 & 5. This is common amoung those with immune deficiencies who receive monthly IVIG. Give Danny plenty of liquids the day before and throughout. This will help with the side effects. when I say plenty, I mean a lot! If Danny complains at all of neck pain you need to tell someone right away. Asceptic meningitis is a possible side effect. If he experiences any neck pain at home, take him to the ER. My dd had vomitting at the beginning of day 2 and throughout the morning. She also spent the majority of day 2 asleep. She had a severe reaction and should have been kept in the hospital but the nurses and her Ped didn't know what they were doing. Her reactions lasted through the entire next week. She has since had another round of IVIG and scheduled next week for round 3. Minor side effects with round 2 but the nurses knew what they were doing. She has an immune deficiency in addition to Pandas so IVIG will be monthly. Lastly, their are people all over the world who receive IVIG every 3-4 weeks. Some have been doing it for years. So, while I completely understand how scary it is to have it done on your child, please know that it is very safe and that serious reactions are rare. Try the below link for a guide from the Immune Deficieny Foundation written for nurses. The publication has some good info on possible side effects and the overall procedure. Good luck on Monday & Congrats on getting insurance approval! http://www.primaryimmune.org/publications/.../book_nurse.htm

Does Julia have any siblings? I asked to be notified of any significant illnesses in my nonPandas childs class as well (strep & flu) so that I could keep an eye on him and therefore protect her. I also had them include that she has significant leg pain and now migraines and that participation in PE and any other activities is at her discretion and they have to respect her decision. If she abuses it-we can reevaluate.

Here is a link to an article in IG Living about Special Education Plans. http://www.igliving.com/web_files/feat_a-s...pec_edplans.pdf

That's awesome Christie!

Oh Susan, I really feel for you right now. The separation anxiety is horrible for everyone. It was so heart breaking to have to send Shae to school when she was sobbing and clinging to me. Did you see the link to the article on separation anxiety I posted on the post about returning to school? I shared it with the school so they wouldn't try to tell me this year that I was causing her anxiety like they did last year. I'll keep you in my prayers this week. Sam

This is our first year of having a 504 plan. I made sure they understood and had it written into the plan that if she started experiencing severe anxiety at school it was a sign that she was likely sick and they needed to call me. She also experiences joint pain in her legs so I told them if she was complaining of pain and didn't want to participate in an activity, ie P.E., they had to respect her decision. Same for complaints of migraines. If they feel she starts to abuse this then they are to call me and we can reevaluate how to handle it. It is also written in that she will likely miss more than the required number of days of school due to illness and doctor appts. If we know of an absence in advance, I've requested that the teacher send any lessons home beforehand rather than having her try to catch up. Because she has also been dx'd with an immune deficiency, the school is to notify me if anyone in her class and her brother's class has strep or the flu so that I can watch her for signs of illness. If there is a significant number of ill students in her class or the school, I can pull her out at any time.

WOW-My dd throws a fit every time we try to brush her hair as well. I never even considered it might be a Pandas thing. Needless to say, the only time her hair is combed is after a shower and even that takes some wrestling.

Here are some links to articles/research I have found on Selective Antibody Deficiency. http://www.jacionline.org/search/quick?res...dy+deficiencies http://pedsinreview.aappublications.org/cg...tract/21/10/358 http://www.liebertonline.com/doi/abs/10.1089/pai.2006.19.51 http://www.uptodate.com/patients/content/t...~/3O3rTLTTn__c/ http://www.wane.com/dpp/wildcard_1/wildcar...mune_Deficiency

I can't comment on the connection between Pandas and thyroiditis. No one is sure at this point if there is a connection between Igg levels and Pandas but several children have recently been tested and had low levels of either one of the Ig's, Ig subclasses or titers tests. My dd7 has been dx'd with a PID this summer and recently started on monthly IVIG. I know from reading posts on the PID forums that public pools pose a threat for children with immune deficiencies. I know my own child had a flair in her Pandas symptoms two days after swimming in the public pool.

Prevnar was introduced in the year 2000 and is now given to anyone under the age of I believe 5. Anyone older than 5 and adults receives the Pneumovax vaccine.

I have the names of two Immunologists who were recommended by a Mom in PA who has a son with a PID. They are: Dr. Rebecca Buckley at Duke in NC and Dr. Perez at the Children's Hospital of Philadelphia.

Excellent Idea and it reminds me that Diana and I are trying to keep track of how many kids have these tests and what the results are. So, please inform one of us if you have this bloodwork done and what you find out. Also, if you have these tests done and find your child has low levels of Ig's or fails the titers but your Doctor doesn't want to treat--Get a second opinion!

Hi everyone, I'm not really sure where to begin so here's goes: Many of you have probably read that Shae was dx'd in June with a Primary Immune Deficiency called CVID or SAD in addition to her PANDAS. This was discovered by her allergy doctor running a complete Immunological bloodwork panel. She came back with normal levels on all antibodies or immunoglobulins (Igg, Iga & Igm) and her Igg subclasses levels were all normal as well. They also did what is called a Pneumococcal Titers test. Buster can probably give you a better description of how it works but the gist of it is that they tested her antibodies to see if they actually worked when faced with an infection. She failed 12 of the 14 strains. What this means is that even though her body makes normal levels of antibodies they do not work correctly. When she has an infection, instead of going to work and fighting it-her antibodies do nothing. I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection. If your child is under the age of 10, it is likely they received the Prevnar vaccine during their routine vaccination schedule. The Prevnar vaccine is to guard against seven of the Pneumococcal titers. Another name for the Pneumococcal titers is streptococcus pneumonea. The vaccine protects against strep. pneumonea, meningitsis, and pneumonia. You can learn more about the vaccine and what it does at www.prevnar.com. Click on the dancing Pneumo guy and it will take you to a link with an animated video regarding the vaccine. Any doctor out there is going to tell you that strep pneumonea and strep A are different strains. This may be true, but if our kids cannot fight infection to strep pneumonea how do we know that they have the ability to fight off a strep A infection? We don't and neither do the doctors. The benefit of being dx'd with a primary immune deficiency (PID) is that if IVIG is recommended-insurance should pay for it! Unlike Pandas, it is a recognized disease. I would strongly like to encourage anyone who has not already done so to please request the following tests for your PANDAS children: IGG & IGG subclasses IGM IGA Pneumococcal Titers Test Tetanus Titers Test Diptheria Titers Test You can learn more about PID's at the Immune Deficiency Foundation's website www.primaryimmune.org Click on the link to the Publications and then the link to the Patient & Family Handbook. Read Chapters, 1, 2 & 10. You can call them at 800-296-4433 and ask for a doctor in your area. You can also visit www.jmfworld.com and click on their link to find an expert in your area. We are very possibly on to something here that has the potential to help our kids. Sam

Welcome Robin, It sounds like you have had quite a journey. You are very lucky that you were able to find a doctor who believes in Pandas and is treating your son. My dd7 started second grade on Wednesday and it sounds like you've already read my post stating I was scared to death to send her. So far so good this week. I hear she even raised her hand and volunteered on the first day. If you haven't done so, I would ask about getting a 504 plan in place for your son. this will allow you to pull him out of school if there is an outbreak of strep or the flu for an extended period of time. I agree with Meg's Mom. Find an Immunologist and have a complete immunological workup done. If your son has had that many ear infections he clearly has something else going on besides the Pandas. My dd had all the blood work done in June and was dx'd with an immune deficiency called selective antibody deficiency a form of CVID (common variable immune deficiency). Since that time, nine other kids have had this bloodwork done and all nine have come back being deficient in one way or another. We are fortunate that our Immuno Doc has started her on monthly IVIG therapy. In addition to the chapters she recommends, I would also recommend chapter 1 for the basic overview. You should also checkout the Prevnar website and click on the dancing Pneumo guy. This will take you to an animated video and explain what the pneumococcal titers tests and the Prevnar vaccine relates to. You will also want to go to www.jmfworld.com and click on the link to find an expert in your area. If nothing is listed call the Immune Deficiency Foundation at 800-296-4433. You will want to request the following tests: IGG & IGG subclasses IGM IGA Pneumococcal titers Diptheria Titers Tetanus Titers Good luck! Sam

Judy, tried answering your PM but it says you have this feature turned off. Will try again later Sam

Nancy, Is your daughter receiving monthly IVIG based solely on her Pandas diagnosis or does she also have some additional immune deficiency issues? How is the Rheumy coding it for insurance purposes? Did she have an immunological workup done? Bloodwork for all Ig's, subclasses and vaccine titers? Thanks Sam

When did you have the blood work done? It is my understanding that it takes about three months after IVIG to get accurate results.

Hi Christie, Shae received the Prevnar vaccine four times between the ages of 2-3 during her regular vaccination schedule. Our Immuno felt this was enough and did not want to revax her. He started her on monthly IVIG based on her failing the Pneumo titers and was thinking he would continue the monthly IVIG for maybe two years and then revax her. At this point, I'm not in any hurry to have her revaxed--I want a 100% guarantee that there is absolutely no connection between strep pneumo and strep A. I can't take a chance with her Pandas. Also, she received her first vax shortly after her 2nd birthday and we now think that her first Pandas symptoms started shortly afterwards--she started eliminating foods from her already restricted diet. We had her tested for celiac's and several other food allergins at the time. All tests were negative. She never did add any of those foods back to her diet. Call me.

Melanie, You might try contacting Diana to see if she knows of anyone this age who has had successful IVIG. Her website is www.pandasnetwork.org

hi Susan, She did fine. The teacher sent me an email yesterday afternoon and said she raised her hand in math and seemed happy all day. She had some anxiety this morning so I hope tomorrow goes well. She wants me to walk her to class and this really seems to be an issue. She gets clingy and weepy so I have to find a way to get her to class without me. Glad to hear S. is doing better. Good luck next week with school. Hope the doctor's appt on Monday goes well also! Sam

Check out Diana P.'s new website www.pandasnetwork.org Her 9 year old son has Pandas. Also, Dr. K's website is webpediatrics.com

So are so not alone!!

Hi EAMom, Just thinking about you and hoping that all is going well this week and she is still improving.