FallingApart

How scary!! Every part of this story is scary. Do you know if PEX should be strong enough to help your child get through this?

We had our second round of IVIG for DD only 20 days ago. Earlier this week we had 2 sleep episodes that were completely PANDAS. DD woke up at 1 am and was unable togo back to sleep even with the help of Benadryl until 6 am. 2 days later we had the same thing but this time it only lasted for 2 hours. This morning, we were awoken with her pre-IVIG wakeup ritual of 4:30 for the day. This was followed by a rapid return of all of her PANDAS symptoms. Just like last month, the symtoms returned hourly. She is not yet as bad as she was last month, but I am completely devastated over here by today's events. I know there is the topic of turning back the pages. But I feel this is too similar to what happened last month where she needed another round of IVIG. Obviously, right now she doesn't need another round since ith as only been 20 days. But, I feel this is more than just turning back the pages. I'm starting to feel that I am on the wrong forum or need an additional forum to PANDAS. There must be something else going on here. The lifespan of the antibodies is more than 20 days isn't it?

SF Mom, what is the link with Scarlett Fever? It is strange that you say that because the same is true for DD on this end. Our youngest daughter was diagnosed with Scarlett Fever and then boom the PANDAS daughter developed PANDAS. But, we never tried abx until 5 months later because she was totally asymptomatic .

Ok, I am confused,. We had a test done for Mycoplasma Pneumoniae IgG and IgM. We did this at the time of our MRI per Dr. K's request. He said that if we had this it would be bad. Our results were <=.90. The paperwork I have in front of me says that <=.90 for Mycoplasma Pneumonia IgG is Negative. Is this different than what you are saying SF Mom?

I believe Dr. K told our ped to have us tested for this over the summer. We did not have this condition. I just finally got a copy of all of our bloodwork yesterday and will look through it all and let everyone know. But I am almost positive that we did this test and it was negative. But we also failed the strep titers too. So far, ALL of our blood work is normal. THis is becoming a problem because we have ZERO tests that show anything abnormal.

This excerpt is from: http://www.lupusinternational.com/Resource...ochures_09.aspx I take this to say that the child can present with anxiety and behavioral issues and will respond to IVIG. I can see his point here but I am not sure I'm buying it. Would Lupus respond to abx? What are the clinical manifestations of CNS lupus? The spectrum of clinical presentations in CNS lupus is broad. The major clinical syndromes seen in CNS lupus are: CNS vasculitis: This is an inflammation of the brain's blood vessels due to lupus activity. This is the most serious syndrome associated with lupus, and is one of the two specific CNS syndromes that are part of the American College of Rheumatology's criteria for defining lupus. It usually occurs early in the course of disease (over 80% of episodes occur within the first five years of disease), being seen in about 10% of lupus patients. The typical patient presents with fevers, seizures, meningitis like stiffness of the neck, and psychotic or bizarre behavior. Brain MRI may demonstrate multiple or single areas with infarcts. A spinal tap may be needed to diagnose this condition (and exclude infection), and usually shows a high number of cells, high protein level and a high synthesis rate of immunoglobulins. Anti-neuronal antibodies may be present in the serum and/or the CSF. Usually, high dose steroids and/or cytoxan are needed to treat this syndrome.

In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart. I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.

I got this book after reading this post. James Patterson is my favorite author and I didn't even know this book was out! OMG, this book is scaring the bejesus out of me! For those of you with older children, how closely do you see Corey's symptoms relating to your children's symptoms? The alcoholism is terrifying!!

We didn't have either condition here.

Vickie, your post has made me realize something possibly very important! And, I don't think you should be beating yourself up about it. ALthough, how can you not. I know that is what we do. But, I just realized with 100% certainty that my sister had undiagnosed PANDAS. And my uncle had RF as a child. Should I do anything with this information? Does it mean anything? Or is it just a genetic predisposition?

Good luck today!

Shelly, How old is your daughter? I agree with the other posters on definitely testing for immuno issuees. Especially if you will be poking your daughter for any reason anyway. Or, when you do the IVIG, ask the doc to write to draw extra vials of blood to be drawn. That way you will have the blood that was drawn prior to the IVIG if you desice to run a test at a later time. I have a 3 yo daughter that has had IVIG 2 times. The infusions were 35 days apart which is why I am starting to think immuno issues. I'm so sorry to hear that this horrible situation has returned for you. How is your daughter handling it? Does she realize what is happening?

We also did the 5 day course and had dramatic positive results. But, sadly, they only lasted for a week and then all of her symptoms returned and got worse by the hour. Please keep us posted.

This is a great question! The thing I need to know how to screen for is someone who will only help. What I mean by this is not add to your workload and become another child. We had a helper - 20 years old - this summer during the worst of our times. She wanted to treat my PANDAS child like a typical child and discipline her when DD did odd things or wrong things. This created HUGE friction among my girls and the helper. DH and I tried to explain to the helper that what we needed from her was just someone to entertain the girls and not do any disciplining. She attempted this and then 24 hours later nicely told us that we were not treating our girls fairly because we don't hold them to the same standards. It got extremely tense. The helper was correct in her observations, but was unable to provide the service we needed. How in the world do you screen for this? Perhaps this is easier when the caregiver won't be working with toddlers? Please do keep us posted on how you screen for this. DH and I are completely alone where we live and our one trusted babysitter just left for college. We have absolutely no one. And I know I need to find someone but it seems so overwhelming.

Hello, Does anyone have Kathy Alvarez's phone number? I have her email and sent her 2 emails last night. But it is urgent that I get in touch with her ASAP. It appears that even though I asked repeatedly to have DD's pneumococcal titers run, they never were. And now, the only vial of blood that can be tested for the titers is on its way to Kathy. We are most likely not able to wait 3 months without IVIG to get blood that we can test for the titers and I need to ask Kathy if she can help me with this. If anyone has this info, I would greatly appreciate it. Perhaps we should also start a sticky with the names and phone numbers of these important people. Just a thought.

Mom md, Prior to PANDAS, was your son a sick child? Also, have you done IVIG? I would assume that at this point, you will be doing it in the near future if you haven't yet done it.

T. Mom, is one round of abx enough for the dog, or is this something you need to check regularly like you would a human?

I would wonder the same thing about using it with abx. Is it one or the other or can you do both?

Manda, Looking forward to today's update. I am thinking of you and your family.

The flu has just hit our house as well. Our 2 yo DD has it. I'm wondering if the PANDAS DD had it last week and that is why all her symptoms were back. But would the IVIG clear it up if that were the case? So confusing!!!! Can you explain once more in very simple terms why we should do a 5 day round of abs? I'm not quite getting it. Also if both siblings are on the abs, should both siblings get the 5 day round of the abs?

How many visits would one need in order to make a real plan with her? We are on the west coast and I am considering contacting her next. But am not sure how the logistics would work with such a distance.

That is fabulous!! Please keep us posted as the progress continues!!! I'm thrilled for you!

Colleen, what was the method you used to test your animal(s)?

Thanks for these responses. I will be taking these to our ped when I meet with her this week. I agree with all of you that the IGs must have died off. However, DD has yet to fail a blood test. I believe that we have been pretty extensive with the testing. She did the pneumococal titers, she did the Igg, Iga, Igm, etc. All of those yests yielded a normal result. Wouldn't that be bad in helping me build a case that she has an immuno deficiency and having an immuno doc take me seriously?

Hello, Well, we are out of the hopital and this round of IVIG seems to be working. DD is getting better - she is not all the way herself, but is slowly getting there. This would clearly indicate that she is in need of IVIG or something that IVIG is providing her with. Our ped wanted to wait until DD was symptomatic before doing the next round of IVIG because she didn't think it was useful to do it when she was asymptomatic. I told her that some of you are doing it at regularly scheduled times, even before your children show symptoms. She was surprised about this. She is open to this but wants to know the reasoning your docs have behind that. Also, I know you have suggested the immunologist route, and we are working on that route as well. Our ped spoke with Dr. K and he responded to her with "No child needs more than 2 rounds of IVIG". Have any other Dr. K patients been told this?