ShaesMom

Thank you everyone for the support and the prayers! It brought tears to my eyes to read your posts today. Unfortunately, I have no family and my husbands family in not very supportive so it is nice to know some many are thinking of us. Yesterday was living XXXX for both Shae and myself. She was admitted about 3 pm. She was dehydrated due to her refusal to drink after taking the laxatives and she refused to drink the mag citrate-which I expected. They had to put a tube down her nose and gave her the laxative over a five hour period. She also needed an IV for fluids. She was extremely upset about the tube and asked me why I chose to have them do it. It was not my choice. She also told me that "her life was the worst in our family" and that her "life was bad". I don't really know if it possible for a 7 year old to be suicidal but sometimes I wonder if she is. It was incredibly difficult to hear her say those things and know she feels that way. Maybe it's just the Pandas talking-she has said similar things recently. They didn't find anything visually in the endoscope or colonoscopy (no peptic ulcers). Now we have to wait a week for the biopsies. I did ask about the strep and they said that strep would not show up on the biopsy. Our GI doctor did tell me beforehand that she doubted they would see anything but The Urology appt went well. This is the third different urologist we have seen in four years and he was by far the best. Her kidneys are fine. She possibly has something called UPJ Obstruction. Her renal pelvis on her right side is enlarged and the ureter tube to the bladder is small but not restricted. He wants to do another ultrasound in 6-12 months. In the meantime, if she develops recurrent UTI's, another pseudomonas infection, or has pain on the right side, we need to contact him immediately and have a Lasix Renal Scan. So, it is something we need to monitor but nothing life threatening. I'm glad that we have this information but like my husband said after we left the appt-it could have been handled differently. We both were physically ill with worry over the weekend that it was cancer or she needed an emergency kidney transplant. He did tell us that IVIG should not be a problem. So, I'm off the research UPJ Obstruction.

Dr K told us no vaccines period. Our immunologist told us no live vaccines which would include the Flu Mist. He also cautioned us to not let anyone in the family have the flu mist and try to avoid those who have had it recently.

Do you think the sore throats are chronic or more related to an illness? Individuals with Chronic Fatigue and Fibromyalgia often have chronic sore throats. Do you have additional symptoms with the sore throats? I have Fibromyalgia and my throat is always sore without strep.

We have actually had the best luck with the younger doctors. Our Ped has only been in practice for 6 years and she never flinched when we mentioned Pandas. Our Rheumy who is in his early 30's told me that he had seen an actual "true" case of Pandas during his residency. I believe his definition of "true" meant that there was inflammation on the MRI.

Great question!

Let's us know when you get the results. I'm sure we can all figure out together how to interpret them.

thanks Elizabeth!!

So it's basically the same thing as saying autoimmune-the body attacks itself rather than the infection. Great explanation!!

These are also questions that I have...I can't seem to understand the molecular mimicry paper...this has been a struggle because I have don't have a medical background. Perhaps we should start a new thread...the mechanisms of PANDAS I don't get the molecular mimicry stuff either.

I think it is unlikely that it relates to the IVIG. She gets Gamunex which does not have any sugar in it. She did receive Gammagard for her two day infusion which does have sugar. I'm sure whatever it is was preexisting. She has a history of chronic UTI's since 2006 including one which was a pseudomonas infection that required hospitalization and IV abx. I have no idea what to even begin researching because I literally know nothing other than there is a problem.

Hi, I shared with some of you that on Wednesday my daughter had an ultrasound of her kidney's and they found something wrong but of course they tell you nothing. Earliest appt we could get with the Urologist was for December 15th. After reviewing the report from Radiology-the appt has been moved to Monday afternoon. They still won't tell me anything but now I am really concerned. Please kee her in your thoughts and prayers on Monday as she has an endoscope & colonoscopy in the morning and then we meet with the urologist in the afternoon. Thanks, Sam

How is your son doing?? Don't want to hijack the thread, so I'll (try to) keep it brief. Haven't been posting much lately: my wife and I are emotionally drained (which I know everyone here can appreciate). It's been 3 months since our 2nd round of IVIG in Chicago with Dr. K, 2 months since the 3rd round. Dr. K really expected those 2 rounds, 28 days apart, to do the trick. Just haven't "seen the magic" this time vs. 1st round last October, when we saw about 70% improvement in the first month after IVIG. Slow, subtle improvement this time - maybe 30%. Fearing that his age (13) and the severity of that last exacerbation (on 3/29/09 - worst yet by far) are making recovery pretty tough. And we're scared. Even after that 1st round of IVIG - and even on prophylactic augmentin - he still had a major relapse from what appeared to be an upper respiratory infection. With 2 younger boys in school / daycare, don't know how we'll keep infection away from him this winter. Things would be much less stressful if we had a local doc to help. Our DAN doc who originally diagnosed our son passed away last October. Been searching (fruitlessly) for a replacement for almost a year. Three pediatricians who said they were accepting new patients declined to take him because "they weren't equipped to deal with something like that." Endless series of ped neuros, infectious disease docs, and child psychs who don't even bother to order any tests: after months of waiting to see them, they just tell us it's not PANDAS (although none of them agree on what it is) and we need to see somebody else. Finally have a line on another DAN doc in our area whom we hope will be willing to help... guess we'll see. Have been waiting to post until I had better news. This past week has been better, so maybe we're getting there. We just have a long, LONG way to go to approach anything like normality! I love the positive updates and success stories I read on here. Gives us hope. I pray to be able to share good news someday soon!!! Can you tell us what state you live in? maybe someone can recommend a doctor in the area. Have you been reading the recent findings on the immunological issues? Could this be something your son may have as well. Please tell us how we can help???

Can't answer the steroid question but according to the excerpt I copied-then it looks like "yes" you should follow up with something. I'm not sure that IVIG would bring the immune system to a "baseline". What it does is gives the body healthy IGG antibodies that can then attack any of the foreign invaders that are lingering in the body still. When you have someone with an immune deficiency either they do not make enough of the antibodies (low Ig's or subclasses) or the ones that they do make are worthless (defective antibodies)-they do not go to work or even recognize a foreign invader. My immuno explained it like this: Our body=house Our antibodies=dog Bacteria=thief In a healthy immune system when the thief enters the house the dog will attack it. In an unhealthy immune system when the thief enters the house the dogs sits and wags his tail at the thief but does not attack him. So, the IVIG gives the body plenty of healthy Igg's that immediately attack the bacteria that was floating around untouched by the faulty Igg's. So, my thinking is that when given IVIG for Pandas-the healthy antibodies eridicate any of the remaining strep that may be left over. But that brings up the question of why didn't the abx kill all the strep bacteria?? Can't answer that one. Is it possible that the abx can't "reach" the inflammation in the brain (can abx cross the BBB?) and that the healthy Igg's do? the steriods would bring down the inflammation but that affect isn't always long lasting right? So, let's say there are some left over autoantibodies hanging out in the basil ganglia-having a party-all of a sudden the healthy Ig's arrive and surrounded them and kill them. No one more autoantibodies attacking the brain- so slowly over time the inflammation would start to subside and pandas symptoms would decrease. What do you think? Make sense? Way off base??

An important use of plasmapheresis is in the therapy of autoimmune disorders, where the rapid removal of disease-causing autoantibodies from the circulation is required in addition to other medical therapy. It is important to note that plasma exchange therapy in and of itself is useful to temper the disease process, where simultaneous medical and immunosuppressive therapy is required for long-term management. Plasma exchange offers the quickest short-term answer to removing harmful autoantibodies; however, the production of autoantibodies by the immune system must also be suppressed, usually by the use of medications such as prednisone, cyclophosphamide, cyclosporine, mycophenilate mofetil, rituximab or a mixture of these Okay, so you remove the autoantibodies immediately with PEX. but the body is going to remake antibodies after a few weeks and if your immune system doesn't function properly to begin with then how does the PEX prevent the new antibodies from going haywire? According to above-it doesn't. There will still be an immune issues. Am I getting any of this right or am I completely off base??

I wish someone would explain to me how PEX is able to cure some of these kids.

Thanks for looking this up PixiesMommy. It was mentioned in a post I had about strep in our house by maybe Colleenrn or Peglem. I haven't had a chance to look into it either so this is very helpful. I just glanced at the first one but it looks like gum chewing may be encouraged at my house. I'll read them more closely tomorrow. Sam

I found this paper today and thought I would share it. It gives a break down of the different abx to treat strep. http://www.thechildrenshospital.org/pdf/Co...-19-07COLOR.pdf

Since it sounds like more kids will be doing monthly IVIG, I wanted to remind every one that you can get a free IVIG playkit from Baxter manufacturing. It comes with a stuffed blue bear and all the medical supplies for IVIG. It is really cute and my kids love playing with it. Shae has even taken it with her to her IVIG appts. Sam

Did you ever track down that blood??

I don't know the exact number who have been tested. I'll have to check with Diana. I did read a post last week or earlier this week from a Mom whose child did not fail the titers or Ig's. But that is one out of the approximately 15 that I believe have had the blood work. With my dd-it looks like a total of six have actually rec'd a dx of an immune deficiency and four of those will be have monthly IVIG for six months or longer. I need to make a better list but just haven't had the time. Can you have your Ped or someone run the tests and then you can try finding an Immunologist with results in hand if there are irregularities??

Kelly, I forgot to ask--what is the treatment plan for your son? Are they going to start him on monthly IVIG?? Sam

Okay, I received another pm from a different Mom today so counting your child Kelly & her's we are up to five kids in three days!!! Immune Deficiency's can run in families so I wouldn't be surprised if you or your husband would find something off in one of your immune systems.

My initial thought is "yes" it would change the results. But it may not be a long term change. The immunoglobulins live for approx. 3-4 weeks and then they start to die off on their own. It is recommended that you wait 3-4 months before retesting the Ig's and titers after IVIG so that you may get more accurate, true results. Doing IVIG less frequently would just open the door for a new infection. I wish I could say I completely understood why a large two day dose of IVIG seems to be benefical to so many but I can't. My inital thought is that maybe those children do not have an underlying immune deficiency. I believe Dr K states an 80-90% success rate with one IVIG treatment. Maybe the kids who have immune issues fall within the other 20%. Excert from IDF publication: It is important to understand that the immunoglobulin that is given partly replaces what the body should be making, but it does not help the patient’s own immune system make more. Unfortunately, the immunoglobulin only provides temporary protection. Most antibodies, whether produced by the patient’s own immune system or given in the form of immunoglobulin, are used up or “metabolized” by the body. Approximately 1/2 of the infused antibodies are metabolized over 3 to 4 weeks, so repeat doses are required at regular intervals. Depending on the route of administration, this may be done by giving small infusions under the skin as often as every 2 or 3 days, or larger intravenous infusions once every 3 or 4 weeks. Since it only replaces the missing end product, but does not correct the defect in antibody production, immunoglobulin replacement is usually necessary for the patient’s whole life. Currently Shae receives IVIG every 4 weeks. The week before her treatment she has an increase or return in some of her symptoms. Especially the leg pain and fatigue. Both disappear the day of the infusion.

Dut- Is this a parent that you know? Is there a way you can somehow bring up Pandas and what your child has been through? I feel like it is our responsibilty as parents to spread the word about this disease since the medical community isn't doing a very good job.