ShaesMom

Hi Nevergiveup- My dd just finished her fourth round of IVIG on Thursday. She weighs 41 pounds and gets 10 grams of Gamunex. It was taking about 4 hours but we got it down to 3 this last time. YAH! Are you working with an Immunologist? Other than what Dr. K recommends for the large two day dose I do not believe there is a protocol for treating PANDAS monthly with IVIG. What PID did they dx her with--CVID or Specific Antibody Deficiency? Which by the way, according to some longterm PIDDer's and for insurance purposes is the same disease. Does she have low IGG levels or did she fail the Pneumo titers test or all of the above? Are they planning on doing IVIG monthly for a trail period or indefinitely? I feel that the dose my dd is receiving for her dx of CVID is significant. She only had a few minor vocal tics (which have disappeared) so I'm not really sure I can give you assurance regarding the tics. I can tell you that every month we have seen improvements. After round three we noticed that she finally started eating lunch at school and even began asking me to send more in her lunch box. She also did not complain of leg pain except two days prior to round four. She does not enjoy having the IV done but she has told me on several occasions that having IVIG makes her feel better. She has never complained or thrown a fit when the time has come near. In fact, last week when her legs were bothering her she said "thats okay-they'll stop hurting after I have IVIG." She still has some minor anger issues and emotional labilty in the form of self doubting but we can usually put a stop to these pretty quickly. I'm afraid the anger issues may have become a habit and that we will have to "retrain" her as to what is appropriate. Overall, we are very thankful that she is receiving monthly IVIG and I believe in my heart that we are doing the right thing for her. If you contact the Immune Deficiency Foundation they will send you several publications on PIDD's and the treatments free of charge. They will also connect you with a Peer in your area to help answer questions. You can sign up for a weekly (?) email newsletter. 800-296-4433. You may also want to go to IGLIVING.COM and sign up for there free monthly magazine. It is all about PIDD and IVIG. It is a very good magazine. I don't remember how old your daughter is but you can get a free IVIG Play kit from Baxter Health. It is a really cute blue stuffed bear that comes with everything needed to pretend you are giving him IVIG. My dd and her brother love playing with it. I've posted the link before but I will find and PM you. Good Luck! Sam

I don't need a dog--I have my daughter! She detected strep in her brother four days before he showed any signs of being ill.

Okay Ladies-this is the exact same way my dd presented with strep before we knew she had it. No complaints of a sore throat-only headach & tummy ache all the time. Strep tests came back negative except the ASO titer. Once she started daily abx the tummy aches went away.

Hi Melanie, Glad to hear things are going so well. The actual "life" of the immunoglobulins that he received through IVIG is approximately 3-4 weeks before they start dieing off naturally. However, this doesn't mean that he will slide backwards. I believe Dr. K thinks it takes approx 3 months to see the most benefit from IVIG and it may take a full year for "complete" recovery. If he starts to slide backwards you should consider having the immunological blood work done to see if he has an underlying immune issue. We just finished round four of IVIG and the improvements are amazing!

Shae had sensory issues during her exacerberation but they went away after she had IVIG.

My dd passed both the Diptheria and Tetanus titers but she failed the Pneumococcal titers. She had her fourth round of IVIG yesterday. Her Immuno wants her to get the H1N1 vaccine because as you said above she is one of "immunocomprised" and is at an increased risk of developing complications from the flu. I'm also struggling with what is the right thing to do. She has had regular flu vaccinations in the past and I can't remember any ill effects from those vax's but I wasn't looking at the time either. I really don't want her to have the vax but if she doesn't have it and worse case scenario gets the flu and doesn't make it I would never forgive myself. With that said- eight kids were out of one first grade class today with the flu in her school. A neighbor boy is in that class and his older brother is in my son's class and they play often outside of school. I'm scared to death! I told my son that he couldn't play with his friend this weekend. Next week the live mist is available and my dd is not suppose to be around anyone who gets it because it is a live virus. How do you prevent that from happening??? What a nightmare to try and figure out!

Can you do the sinus xray you talked about and if that comes back negative tell the Immuno that right now you are against doing the Pneumovax and see if he will go ahead and try IVIG?

SubQ is not shots. It is actually subcutaneous infusions that are usually done weekly rather than monthly over a few hours. It involves inserting several needles in either the thigh or tummy and infusioning the IVig. The benefit is that the immunoglobulins are received weekly rather than monthly so the doses are smaller which helps with side effects and because it is weekly it is believed the patient has more consistent serum level concentrations over time without the peeks of regular IVIG. Peglem-call IDF and request a copy of the booklet "CLinical Focus-Subcutaneous IgG Therapy in Immune Deficiency Diseases" It is a free booklet. 800-296-4433 Hopefully, this will really help your daughter! Kudos to your doctor for caring so much!!

Immune deficiency's can run in families. Most people are not dx'd until their 30's & 40's after years of suffering. Perhaps your chronic sinus infections are a sign that you may also have an immune deficiency. I was dx'd with Fibromyalgia last year and also have issues with chronic strep and bronchetis. I have seriously considered the fact that it may be something I myself have but right now I want to concentrate on getting my daughter healthy. Have you considered having the blood work done on your son and yourself?

Sorry, we didn't do the steriod burst so I can't offer any help there. But-joint pain was one of my daughter's main complaints. Ibuprofen and Aspercreme really seemed to help manage the pain. Turns out her joint pain is likely related to the immune deficiency and not the Pandas. Have you done or considered the immunological blood work up?

Worried Dad- Have they already done the blood work and you are just waiting on the results? I'm glad you decided to give this route a try--I hate to say this but I hope the results come back showing something so you can move forward with additional treatments for your son. Shae had her fourth round of IVIG today. Can't wait to see if anymore of the behaviors disappear after this round.

Try calling some allergy/immunology offices as well. We are finding that a lot of these kids may have underlying immune issues and some of these Immunologists have treated Pandas patients. Atkinson, John Patterson, MD Division of Rheumatology Center for Advanced Medicine Medicine Multispecialty Center Washington University School of Medicine 4921 Parkview Place, C, 5 St. Louis, MO 63110 Phone: 314-286-2635 Fax: 314-286-2338 Knutsen, Alan P., MD Cardinal Glennon Children's Medical Center Pediatric Research Institute St. Louis University Health Sciences Center 1465 S. Grand Blvd St. Louis, MO 63104 Phone: 314-268-4041 Fax: 314-577-5398 Referral Centers: Cardinal Glennon Children's Medical Center St. Louis University Health Sciences Center 1465 S. Grand Boulevard St. Louis, MO 63104 United States Phone: 314-577-5600 Fax: 314-577-5398 Center for Advanced Medicine Washington University School of Medicine Medicine Multispecialty Center 4921 Parkview Place, C, 5 St. Louis, MO 63110 United States Phone: 314-286-2635 Fax: 314-286-2338

I was wondering if I could somehow start charging to have Shae dx all the neighbor kids?! LOL

Hi Everyone- I originally posted this message back in April. I can honestly say I completely forgot this was one of her symptoms. She hasn't had any complaints of eye problems since she first started on the prophylactic abx. Sam

Hi Manda- I want you to remember to try and find some time to take care of yourself. I also have Fibro and know that it is much harder for me to deal with everything when I put myself on the back burner. My heart is breaking for you! ((((((HUGS)))))) Sam

I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary. Beth is lucky that Sammy is able to recognize his symptoms and has the maturity to know to self -treat. My dd certainly doesn't have that ability at age 9...don't know what she will be like in 9 years. A big part of her pandas (early symptoms) were irritibility, defiance, and irrational behavior...so if she were starting to get irrational and defiant (and she were away at college), I don't think that she would know to start treating herself. Yah-you said it better than I did. My dd symptoms manifest similar to your dd's. My concern is would she recognize those symptoms or have someone close enough to her who could recognize them so she could get help if I'm not around.

Oh Elizabeth I just the love way you think!! SmartyJones-I find it scary that at the age of 19 he is still having tics and OCD everytime he gets a strep infection. To me that says that the Pandas has never really been cured--just managed. It makes me wonder if it is just a time bomb waiting to explode again with the "right" infection. I want my daughter to be cured--I don't want her to have to worry about managing Pandas when she is an adult.

This sounds EXACTLY like our dd. I can relate to the spitting and wearing the medicine myself. I also have an anaphylactic allergy to penicillin. We have never come across a successful way to give it to her. In fact, we have given up on trying anything new. She will still take her abx, Benadryl and Ibuprofen but she refuses to take anything else. Before the colonoscopy we had to give her Ducolax - my husband and I wrestled her to floor, he held her down, I plugged her nose and then I put the pills in her mouth. For some reason she didn't spit them back out but ended up chewing them and then swallowing with some water. We may have to try other pills in the future to see if this works again. At the hospital, she refused to drink the mag citrate so they had to put a tube in her nose and give her the laxative over a five hour period. She did not enjoy it but maybe next time she will not be so defiant when it comes to new meds. I feel for you girl - this has been more of our major struggles. It causes soooo much stress and anger. We finally learned too not to try to bargin with her for hours--she now gets five minutes to try it on her own and then we do what we need to. Less stress for everyone and we can move on with our day.

I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary.

Either that or she just wasn't able to hold the titers results for an extended period of time. It would be interesting to see what her response would be to the Pneumo titers blood work two years later.

No bees but we did have eating issues-- Last year during her worst exacerbation, Shae completely stopped eating breakfast and lunch at school. After we started the abx, she started eating 5 pretzels every day for lunch. She did this for two months. This year she has been able to eat breakfast before school but was again not eating lunch. I went to the school during the second week to see what was going on at lunch. She wasn't showing any signs of anxiety but was eating so slowly that she was only able to eat a few crackers or cookies. I started packing less in her lunch in the hopes that she would eat her sandwich. Still didn't work. When asked she always told me that she didn't have enough time. After her third IVIG treatment--she started eating all of her lunch and started asking me to pack more. I asked her what had and changed and she still told me that she didn't have enough time BUT she also finally told me she was afraid of choking if she ate to fast. Classic Pandas symptom but it took her months to tell me the underlying reason as to why she refused to eat at school. I know I'm not really helping any but just thought I'd share that despite consistently being told by her that it was a time issue it was really an issue of a fear of choking.

Good Idea on the travel size toothpaste!!!

Peglem- I've never heard of the Igg shots. Could he possibly have been talking about something called SubQ? If your daughter has a pretty severe IgA deficiency you will need to be very careful with the IVIG infusions (if you can do them at all) because individuals with the IGA deficiency tend to have the more severe anaphylactic reactions. You need to call the Immune Deficiency Foundation and ask them some questions about the Igg shots & Iga deficiency. Don't rush anything until you have some more info. 800-296-4433 Here is a link to one of their guides that talks about SubQ. Take a look at page 26. I'm not sure that this is what your doctor is talking about but it is the only type of injections I have heard about with the IGG. http://www.primaryimmune.org/publications/...urses_Guide.pdf Sam

It went on for around two weeks. On Friday evening my husband and I both commented on how she had not been herself that week-quick to get mad, wanted to sleep in our bed again, very moody (started on Tuesday). I had even sent an email to her teacher that day asking if anyone in the class had been gone that week with strep-NO. On Saturday my son came home from a football game and looked terrible-he was pale and couldn't stop coughing. He looked really rough. Shae and I had spent the entire day together and had a great time-she even played with one of the younger neighbor kids and did great. Her brother was home for 15 minutes and she went nuts-terrible raging. After a few hours I decided to take my son to the urgent care clinic-H1N1 was at his school and with my daughter's immune system disease we need to be on top of everything. They said no flu but looked like strep. Rapid was negative. She was in a terrible mood on Sunday as well. On Monday I found out that his culture had come back positive for strep. It wasn't until Thursday after school that I noticed she was back to being herself. She was great Friday too. On Saturday she was playing with all the neighbors and was again struggling-emotional, moody and grumpy. We went through the whole-"Nobody is my friend-Nobody plays with me etc..." I told me hubby that I bet one of those kids was sick and sure enough on Monday a little boy named Matt was home from school until Thursday. It's amazing to me that her body is so sensitive to other people.