ShaesMom

This is very interesting..... further confirms my need to find a great SUPPORTIVE immunologist. Our Immunologist seems to be very proactive. I know a Mom whose son sees the same Immuno and he did not hesitate to start her son on IVIG either. We walked into his office for our first appt (her allergy doc did all the blood work) and the first thing out of his mouth was 'Okay, looks like we need to get her started on IVIG. We'll submit the request to insurance and go from there."

Thanks Vickie! Good info to know.

My dd also had a higher dose-2gm/kg.

Hi Wendy, My dd7 has had the two day IVIG, three weeks later she had another round, and she is scheduled for round three this Friday. She had severe side effects following the two day treatment but otherwise she did really well. IMO-the second round seemed to really put her over the hump. I would say she is 95% improved. My dd failed 12 of the 14 Pneumococcal Titers and now receives monthly IVIG. IMO-I am so greatful that she is receiving it monthly. She has a long history of illness so I am convinced that one IVIG tx would have just resulted in full blown Pandas the next time she picked up an infection. She is also one of those who gets symptoms from virus' and infections other than strep. We have also seen her symptoms flair when those around her sick. If your child has an underlying immune issue, I'm not sure PEX would be the answer. I have never seen any information on someone receiving the PEX who has immune issues but I could be wrong. You have a great ally in Diana! Sam

My dd is going to have an Endoscopy & Colonoscopy on the 21st to explore her GI issues. I'll let you know if they find Peptic Ulcers.

Hey Christie, My daugher is not on aumentin (Erythromycin) but I have noticed during the last year that her teeth always look dirty and brown. I have helped her brush and the stains have remained. I'm wondering if it is not being caused by everything that her body is going through these days. She has a dentist appt in a couple of weeks and it is one of the questions I'm going to ask. Sam

No, she said nothing about tonsillitis. How do they check for that? The swelling has just been on one side of her neck and it started out about the size of dime and is now about the size of a small baby carrot. She has also been running a low grade (<100) fever on and off. She is no longer complaining of a sore throat.

Debbie- IMO-do not take a break from the abx at this time. If she is willing to switch-try something else. Again, IMO-amoxicillan is like giving these kids water. Try to get Keflex or Azith. Glad to hear that you were able to get Immunological blood especially since she has had a sinus infection all summer. It may indicate that she has something going on other than the Pandas. Keep us posted!

OCD-No tics for my dd.

I can relate. Last week I had my dd swabbed because she was complaining of a sore throat and had a swollen neck and I just knew I was going to lose it if the results were postive. I was ready to cry just thinking about it. She came back negative on rapid & culture but the swelling is still there. Glad to see despite everything you can still have a sense of humor about it. I hope she improves quickly. So, do you think you will switch abx since she had a breakthrough?

I just had Shae swabbed yesterday because we saw some low level anxiety & anger issues on Wednesday night (she wanted to sleep with her Dad's dirty tshirt-classic symptom for her) and then yesterday she woke up complaining of a sore throat which she hasn't done since April or May and had a swollen lymph node on the side of her neck. The rapid, was of course, negative so we are waiting on the 72 hour culture. My doctor said it may not even show positive since she is on the proph. abx. She missed school yesterday and today but no more anxiety or anger issues really since Wednesday night. She is stuffy today and can't breathe but no complaints of a sore throat so I think she just picked up a bad cold. I'm thinking it's going to be a long year.

My dd has always been a sick child. It seems like she has spent more of life on abx rather than off and this is not only because of the strep. It has been other illnesses as well. She has was also hospitalized at the age of 18 months because of the flu and again about a year later because of an abx resistant infection in her bladder. Of course, we now know she has the immune deficiency disease.

Falling Apart- So sorry to hear that your FIL is not doing well. I understand your concerns about your daughter not becoming ill again as so many of us have sent our kids back to school recently. IMO-I think you need to give your daughter a chance to say her goodbyes to her Grandfather and him the opportunity to see his Granddaughter one last time. Those are memories that she will never be able to replace. I think there are some steps to help cut back on the possibilty of infection. Obviously you can have her wear a mask and gloves. Hand sanitizer would be a must. I would try to arrange the flight during one of the least busiest times of the day/week. Is it possible to get a direct flight? You could pack your own snacks. I'm sure others can offer some additional good ideas. So glad to hear that she has continued to do well!!

I didn't realize your son was older. Good luck-I hope it all works out okay!

Wow! So are so lucky that another child/parent has already broken down some of the barriers at the school with Pandas and what a great resource for the two you to be able to relate and "get it" I can completely relate to being scared of them getting sick again. I was in tears the first day for that exact reason--the kids did fine--but I was a mess!

I was extremely nervous before the first IVIG. I think it's definitely normal. Is he having IVIG on all three days? As far as I know yes 3 days So I'm just curious--will he be receiving the dose that Dr K recommends over two days or is your doctor doing something completely different?

I was extremely nervous before the first IVIG. I think it's definitely normal. Is he having IVIG on all three days?

Sorry Debbie, but I would not have a lot of confidence in a Doctor who was concerned about being yelled at by senior doctors nor would I be impressed that she even shared that bit of information with you. Very unprofessional all around. I think you are right to disagree with your Ped on the testing. How does he ever find any underlying issues with his patients if he is unwilling to explore? Sounds like another overpaid doctor who wants to do nothing more than prescribe abx for ear infections and send you on your way. The reason to test is if there is an underlying immune issue your child is going to continue to get sick no matter what abx they are on. AND you would have a solid dx if you need IVIG that insurance should pay for. Sounds like you are definitely going to have to be your child's advocate with this one--find someone who is willing to do the testing. If it all comes back negative at least you've ruled out an underlying immune issue. ARG! I hate doctors with small minds and big pockets!!!

Glad to hear she is doing better once school starts. I will say you are lucky you can still go to lunch with her. Last year I basically wasn't allowed in the school because any time she saw me she would start crying.

Vickie, I've ran across the mention of oral IVIG a couple of times in my research into immune deficiencies. If I remember correctly, what I've read has not been positive about the overall effectiveness of the oral IVIG and it has not been recommended. Call the Immune Deficiency Foundation and ask they have someone on board who can tell you more about it. 800-296-4433

Hi Debbie, Our Ped originally referred us to a Rheumy to rule out Rheumatic Fever and Rheumatoid Arthritis. We happened upon the dx of Pandas on our own through internet research like so many others and knew it fit her to a tee. My dd7 has a food allergy so when it was time this summer for her regular allergy appt I asked her allergy/immuno doc about Pandas, her chronic illnesses, and if we could be missing something. He ran some additional blood work which showed the immune deficiency disease. Have either one of your children been chronically ill since birth? Constant ear infections, sinus infections, or upper respiratory infections? These are common signs of a problem with the immune system. Do you or your husband or extended family members have any autoimmune illnesses? Arthritis, Lupus, MS, Fibromylagia, etc... Family history is also indicative of problems with the immune system. Your regular doctor should be able to order the immunological blood work for you. If not, make an appt with a Immuno and give them your family history, tell them several families with Pandas kids are finding out that the kids have underlying immune issues and you want to explore it with your children. You will want to have IGG, IGG subclasses, IGA, and IGM levels checked in addition to the Pneumococcal Titers, Diptheria Titers, and Tetunas Titers. Several kids have come back showing low levels in IGA, IGG subclasses and the Pneumococcal Titers. My dd is now receiving monthly IVIG based on her test results. You can try finding an Immunologist in your area by calling the Immune Deficiency Foundation at 800-296-4433. Visit their website at www.primaryimmune.org, click on publications and then Patient and Family Handbook. Read chapters 1, 2 & 10 for more information. However, my dd never presented with constant URI's, sinus infections, or ear infections. Other than the chronic strep her main health issues have always been chronic urinariny tract infections and constipation. So, she has more of the GI issues that go along with the immune system. T

Sorry to hear today didn't go so well. It is so hardbreaking to send have to send them when they are upset. I told me dd teacher's that if the anxiety and tears are still there an hour after dropping her off that they need to call me. I figure it is not doing her any good to be sitting there in school crying in front of everyone. I'd keep a close eye on her-sadly it's possible she may have already picked up something at school.

Colleen, Check out my post titled "Immunological BloodWork" from last friday. I have all the tests listed that need to be done for a dx of CVID. Depending on the type of immune deficiency, the most common treatment is monthly IVIG. Insurance should pay for it too! You can also visit the Immune Deficiency Foundation's website at www.primaryimmune.org Click on the publications link and then Patient and Family Handbook, read chapters 1, 2 & 10. CVID can run in families. Sam

VERY common to have a lot of ear infections and upper respiratory infections with CVID. I would definitely explore the possibility of CVID. Autoimmune illnesses are also very common with CVID.

--We've had BCBS of NJ pay for IVIG with the CVID dx. We are still waiting to see if they will pay for the large two day dose that was also coded as CVID. Seems to be a shortage of Immunologists in NC. I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, Robin Lacroix who is an infectious disease doc but also does immunology. I believe she is located in SC. Has your dd been sick a lot with sinus infections, ear infections, upper respiratory infections? If so, maybe try getting her in for immune testing based on history of illnesses and not mention Pandas until you get in the door.