ShaesMom

Hi Everyone, I wanted to share an update on how Shae has been doing. For those of you who do not know her history, I've included a link to a previous post with the details. http://www.latitudes.org/forums/index.php?...amp;#entry45207 On Friday she is scheduled to receive her 9th monthly IVig treatment. She has been doing amazingly well since the last update. There has been confirmed strep in her classroom for the last three weeks. One of the children was in her "group" of friends. In the past we had always seen some sort of spike in her symptoms usually lasting about three days. I have not seen any increase in Pandas symptoms with these new cases of strep and she has not had strep herself. She continues to receive the monthly IVig for her Immune Deficiency-Selective Antibody Deficiency. She did pick up some sort of viral infection in January. Her symptoms included swollen glands in the neck, fatigue, and she was a little grumpier than usual. It took about a month for her body to heal-she actually seemed to finally kick the infection the week following her 8th round of IVig. A couple of nights she had trouble sleeping and ended up in my bed and she wet the bed a couple of other nights. I really don't feel that these were caused by a flair in her Pandas-I just think her body was having trouble fighting whatever she had and she was exhausted. She heads back to the GI Doc next month to schedule another Endoscope for the Eosinophilic Disorders. We have removed a total of 11 foods to date. She still has issues with constipation but it is much better than it was six months ago. We will be surprised if we hear that all of the eosinophils are gone--we are expecting more food allergies (mother's instinct). Overall her quality of life is 100 times better than it was before-ever! I feel causiously optimistic that we are "healing" her Pandas. She will continue on monthly IVig indefinitely at this point for the SAD. On a personal note--I was dx'd with Fibromyalgia a couple of years ago and adopted a Gluten Free diet in December. All of my symptoms have disappeared. Not sure how the gluten comes into play with Shae and her immune system but we suspect that there is likely some connection. I started having health problems when I was pregnant with her which just seems like to much of a concidence. I sincerely hope all of you are making strides to heal your own children. God Bless! Sam

Have you tried contacting the manufacturer of the IVIG shots that he will be receiving? Some companies, like Baxter, have programs to help patients who can't get approval through insurance.

One of the side effects of IVIG can be migraines especially if you were someone who was more prone to them before IVIG or if there is a family history of migraines. We got an rx for Imitrex Nasel spray to help with the migraines. Interestingly, she has IVIG starting at 9:00 am everytime and like clockwork on the second day post between 3-5 pm she gets a headache and minor fever. All the woman in my family have a history of migraines. Mine were extremely bad when I was a child and tapered off after having children.

Hey Susan, Glad to hear everything went well and you have some options. Keep us posted! Sam

(((HUGS))) My dd had very severe side effects that lasted about a week. We kept up the Ibuprofen and Benadryl for a week. She also had a shot of Prednisone and got an rx for Imitrex for the headache. These two things seemed to help the most. Hydration is very important as well. Hope he is doing better today! Sam

It definitely helps if you have something from a Doctor stating the diagnosis. Have you been in contact with Dr. K? We gave our school a copy of an email he sent me after our phone consultation stating she had Pandas. We also had a letter from her Ped. We have a Section 504 plan in place this year that allows for additional absences beyond what the district allows among other things. It is a Federal program so if you are at a public school you should be able to get one in place. The plan is designed around the individual needs of the student-like additional time for test taking and assignments. I also took in some handouts on Pandas that I could find. There isn't a lot out there. You may to get their emails and send them links to the recent news story that have ran. Here are some handouts I used: http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf http://www.jfponline.com/Pages.asp?AID=2011 Good Luck!

Thanks for posting this. Dr. Kobayashi is our Immunologist. In addition to this article, I know he is working with someone on producing a documentary on Selective Antibody Deficiency. We have been asked if we would like to be a part of it but my daughter does not want to be on tv and I don't feel that she should be pushed into it.

No, they are not checking her Igg levels pre & post IVIG. Her liver function is checked every three months and I know at some point he will run her trough levels. He ordered an AntiNeuronal Antibody test which from what I can tell is different than the ANA test. There was a lot of confusion at the lab over this test when they drew her blood so I'm not sure they ran the correct test. He wrote antineuronal on the order but I'm guessing he meant antinuclear. We see him again next month so I'll double check then. She receives 20 grams every 4 weeks. At this point the plan is to continue for two years. She has other health & immune issues in addition to the Pandas & CVID.

Hi Everyone- I wanted to share that I just finished reading an article in the December/January 2010 Issue of IG Living Magazine (igliving.com) about two brothers, now ages 16 & 9, who were dx'd with Pandas at the ages of 8 & 5. The family faced many of the struggles we are facing as far as finding a Doctor who was willing to treat but eventually found an Immunologist who was willing to RX IVIG. Both boys did receive IVIG and our now healthy. Unfortunately, the article is not clear if they receive monthly IVIG or had a one time treatment. There is not a link to the specific article but here is a quote from the Mother when asked by the interviewer if IVIG helped: "Definitely. I now have two healthy, socially adept, wonderful boys. Nick still has a few residual tics because it took so long to get the correct treatment, but Danny has had a complete recovery." The mother also states earlier in the story that the older child did receive a one time treatment of IVIG that worked wonders for a couple of months but he became sick again and all his symtpoms returned. Leads me to believe that the boys may now receive montly IVIG-I'm going to email the writer and see if I can't find out more details about their treatment. IG Living magazine is available for free to anyone who receives IVIG or has an interest in Immune Issues. I have been receiving the magazine for about 6 months and literally read it cover to cover. It is VERY informative. I would recommend it to anyone whose child is receiving monthly IVIG. Last month I posted an update on my daughter. I was hesitate to do so because I didn't want to jinx us. Well, I did just that! LOL Both kids who sit next to her in school had confirmed strep and based on her behavior changes we assume she had it as well. Her Ped did not want to do a strep test because in her opinion the chances of a false negative are great because of the prop abx but she did treat her. All of her symptoms were extremely mild and no one but my husband and I would have probably picked up on them (You become so fine tuned to anything!). Compared to how she reacted when her brother brought home strep in September, I would say she was a 1 1/2 this time compared to an 8 when he had it. A ten day dose of Omnicef cleared any infection and behavior changes. Unfortunately, we have since found out that one of the little boys now has Mono! Her Ped & Immunologist both told us there was nothing we could do except wait it out. He could remain contagious for months and it could be two months before we see any infection in her. So, we have our fingers crossed. Her teacher was very understanding and moved the child so he is no longer sitting next to her. She had her 6th IVIG on Monday and all signs of a recent strep infection are gone. I read in another post that someone's child always seems to have a three day flare in their OCD after the monthly IVIG-we have not experienced anything like that. Overall she continues to be doing extremely well and we remain grateful for the monthly IVIG and PIDD diagnosis. Sam

Great news! Thanks for the update. I've been wondering how everything was going with Pixie. Sam

Erica, My daughter is also 7 and has had Pandas since 11/08. It was mild through 2008 and became severe in 1/09. She received IVIG in July (2g/kg over 2 days) and now receives monthly IVIG. She is also on prophylactic abx. I can tell you without hesitation that my daughter has not only returned completely to her prePandas self but is actually healthier & happier than she was prior to 2008. Today we were at the Doctor's office for my son and she was talking up a storm to both the nurse & Doctor. She would have NEVER done this before. Do not give up hope. You can and will get your child back. Sam

We see an Immunologist and he is the one treating my daughter with monthly IVIG. He also treated her with the larger dose for her Pandas. He has been a saving Grace in our lives. IVIG is readily available at his office and he has staff who specalizes in this area. She receives the monthly IVIG for an immune deficiency which we discovered shortly after the Pandas dx.

Judy, My daughter has received four of her five IVIG infusions at our Immunologist's office (Infusion Center). The first was in the Ped's ward at our local hospital. We did not have the greatest experience at the hospital. It was very clear that the nurses did not have any experience with IVIG and could not answer any questions that we had. In fact, we had to call the Immunologist's office when she started having side effects because they were completely clueless. We never saw a doctor during the two days that she had the infusions. We have never had any problems at the smaller infusion center. The nurses there are trained specifically for this procedure and do it daily. We do not have a Doctor attending to us every 15 minutes but the nurses do and if the Doctor is needed he just down the hall. IMO-I would not have any concerns regarding doing the infusion at his center.

Sounds like this Mom needs to make an appt with a good clinical Immunologist. have her visit the following website and see if it sounds like her son: www.jmfworld.com

Judy, We have BCBS and as far as I know the code that is being used is for Common Variable Immune Deficiency - 279.06.

(((HUGS)))

I wanted to share an update on how my daughter has been doing. Since I see so many new parents online I will give some history. Overall brief health history: -Born full term only weighing 5 lbs 15 ounces and with anaphylactic allergy to dairy. -Hospitalized at 18 months for complications from the flu. -Recurrent UTI’s starting at age 3 lasting thru this summer (approx. every 8 weeks) -Hospitalized for a Pseudomonas Infection in her bladder (very rare) -Chronic Constipation -Has remained a very small child—not even on growth chart -Spends more time on abx than off -Unexplained fevers -Many trips to the Urologist & GI doc who tell us to “repotty train” her -11/07 Strep Infection -12/08 Mild separation anxiety starts & teachers report frequent urination -Spring 08-7/09 Refuses to ride bike & scooter because of leg/knee pain (assume it is growing pains) 12/08 Classmate has strep 1/09 Full blown PANDAS starts to rear its ugly head In June, Dr. K confirmed that she had PANDAS. The following day based on some blood work that was completed by her allergist and her history, she also received a dx of Selective Antibody Deficiency which is a Primary Immune Deficiency Disease (PIDD). My dd had normal levels of all Ig’s & subclasses. She did not mount any response to 10 of the 14 serotypes in the Pneumococcal Titers test. The results of this test, her history of repeated infections, and her autoimmune illness were what led him to dx the SAD. She received 2g/kgs of IVIG on July 16 & 17. The dose was prescribed by her Immunologist because this is the dosage that is common with autoimmune illnesses. Three weeks later she received a smaller dose that is consistent with immune deficiency diseases. She has continued to receive that dosage every four weeks. She completed her fifth IVIG treatment about two weeks ago. There were many ups and downs after the first treatment. During that first week, my husband and I were both convinced that it was a complete failure. She gradually improved over the next few weeks. After her 2nd IVIG, she was 95% improved. A couple of days after her 3rd IVIG, she started having mild raging and emotional lability. Five days later my son was dx’d with strep through a culture. Four days after he started on abx all of her symptoms disappear. Interestingly, we only saw a return in her behaviors when she was around him. At some point between round 3 & 4 (and after his strep) all of her PANDAS symptoms disappeared completely. I can honestly say now that she is 125% improved over where she was PRIOR to PANDAS. IMO-ALL of her Pandas symptoms feel like a distant dream. She never had “turning back the pages” or waxing and waning after starting the monthly IVIG. My daughter has always been a little more “difficult” to manage. Through the years we would occasionally see a little girl who was full of energy, laughter, and a complete joy to be around. We always suspected that she had some lingering infection somewhere in her body that we were not getting rid of. We began to believe that she felt crummy most of the time but was so use to it that she didn’t even know she was sick. I’m happy to report that she is now the happy child on a daily basis. The changes in her are nothing short of a true blessing. If we had to live through the PANDAS nightmare to get to where we are today we are truly grateful. We have revisited the GI Doc & Urologist. She has also been dx’d with Eosinophilic Gastrointestinal Disorder (EGID) and UPJ (kidney obstruction). Lucky for us the EGID is another new disease that has only been around for about 10 years. The dx led us to more complete allergy testing. She is now allergic to a total of 10 foods that we know of and highly allergic to both dogs & cats (of course we have each) and the grass in our yard. Once again her immune system has failed her—she has absolutely no symptoms of being allergic to the animals or grass. We now know with the addition of the EGID dx & results of the allergy testing that her Immune System is just flat out messed up. Her Immunologist plans on doing IVIG for two years before we redo any tests. He has stated that he will not have to revax her with Pneumovax. In fact, he told me it was too big of a risk with her PANDAS. This is contrary to what some Immuno’s believe but I’m not going to argue with him on this one. Also, she is allergic to eggs and pork which prevents her from receiving some vaccinations. I have seen more than one post suggesting that monthly IVIG is a “huge issue and a huge expense”. I completely disagree with these comments. Once we reached our deductible for the year-insurance has paid 100% of the IVIG costs. We spend 4-5 hours once every four weeks at our allergy office receiving the IVIG. This seems like a very small inconvenience in exchange for all the benefits. My daughter has never complained about IVIG-in fact-she has commented on how much better she feels after each treatment. I am not advocating monthly IVIG for everyone with PANDAS. Her monthly treatments have been because of the PIDD dx-not because of the PANDAS. Whether or not she is completely “cured” of the PANDAS remains to be seen. The big test will be when she has another strep infection. Hopefully, the IVIG will help to repair any lingering damage and fight off the infection and it won’t be an issue. On a separate note—The Principal at my children’s school has a friend whose daughter was in the original Swedo study. I have been told that she has done well through the years and is now in college and has elected to stop her abx. I have asked the Principal to see if the Mother would be willing to talk with me. She is willing to ask her but did make the comment that the Mom had said she doesn’t like to talk about that time frame because it was so difficult. I will keep trying.

We received a total of 2 g/kg over a two day period. I believe this amount is standard for autoimmune illnesses.

My dd played with her two neighbor friends immediately after they had the nasal vaccine (regular flu) without our knowledge. I was a bit scared when I found out but it was three days later and she did not have any reactions when she had been around them. I asked our Immuno about exposure and he told us that we shouldn't really be concerned-it was highly unlikely that anything would happen-but recommended no one in the immediate family have the vaccines. As long as no one is sneezing on her-she should be fine. Keep the hand santizer in your pocket and don't be afraid to ask the adults to use it.

That's great news! I have heard of C. Dif but don't know anything about it.

Wendy, My son had strep about a month and my daughter never got it. She would have flares in her symptoms whenever she was around him but she was fine as long as she wasn't in close contact with him. You may want to increase his abx dose but if you don't see any flares at home and his teacher doesn't notice any changes in school behavior I would try to ride it out without stressing.

Great news! Hopefully after the next round you'll see some of the other symptoms disappear too.

Hey Elizabeth, How is he doing? Any more improvements since the 2nd IVIG?? We had very high range numbers on CD3 & 4 and the lowest number possible within range for CD8. The percentage ranges came back as elevated & low on CD8. We were also told it meant an infection and not to worry about it. I also had trouble finding info on the internet.

http://www.apfed.org/ http://www.cincinnatichildrens.org/svc/alp...out/default.htm http://www.curedfoundation.org/ http://www.nlm.nih.gov/medlineplus/eosinop...cdisorders.html

I've visited with our Immuno and the nurses who do her infusions about SubQ. They didn't encourage us to look into that option right now because she is so tiny and wouldn't have anywhere to place the needles. It is my understanding that it can leave really large welts and sores. Plus, she doesn't like needles so I'm not sure for her multiple sticks would be a good idea. You can google it and find pictures of what the welts will look like. Also the IDF has a publication devoted solely to SubQ on their website. Lots of people on the immune deficiency forum's seem to love SubQ and swear it has been better for them than the IVIG. One caution-some insurance companies won't pay for it because of the expense.