Jump to content
ACN Latitudes Forums
mom md

Here we go again...

Recommended Posts

I will give you the cliff note version. My older two sons have both been diagnosed with PANDAS and have been through the ringer. PEX and IVIG for one and IVIG for the second. Interesting though, their disease presented more with hyperactivity, sleep disturbances, mood swings, tics, and sleep disturbances. They are both doing well now. My oldest has not had symptoms in two years (he was very severe) and my 8 year old is finally almost back to baseline (he was caught much earlier).

My daughter, 6, started kindergarden and right around the beginning of school I noticed some anxiety and a hugging ritual. She has had some separation anxiety, ramped up OCD, and now just yesterday started touching things two times. I know this disease can have a 40% sibling rate, but come on! Have we not been through enough! I made an appointment with a behavioral psychologist who has experience with the disease to get documentation and we have an appointment with her pediatrician tomorrow.

She is VERY early. I do not think a non-PANDAS parent would even notice her behavior. My husband is not even convinced, although it took my oldest to get to full chorea before he agreed it was not a behavior issue. He agrees though my maternal instinct has never been wrong before. She did have an ear infection (psuedomonas it turns out) that went for almost three months before we got it cured that may have been the catalyst. What is the current thought is you catch these kids this early? Antibiotics to shut antibody production down? antibiotics and steroids??? She is not severe enough for the NIMH study. Thanks for your thoughts. I know what to do when the kids get bad but what if you catch them this mild and early?

Share this post


Link to post
Share on other sites

Just wanted to share our experiences/observations - my daughter has presented drastically differently than my son. She's far more emotional, obsessional thoughts rather than rituals, perfectionism is a big deal. Where with our son it was undeniable that something was going on (hyperactivity, rages, violence, etc...)

 

She was caught early, partly because everytime my son tested + for strep the whole family was dragged in for swabs and more than once she tested positive with no physical symptoms, so she was treated.

 

Like you - I saw it about a year before anyone else was willing to entertain the idea - she was acting out, seeing the attention her brother was getting, I was a paranoid maniac (probably some truth there ;) ) But eventually, it was undeniable.

 

She got dx last year in kindergarten - and thankfully so. We have seen her symptoms more clearly in the academic setting than anywhere else - thankfully her K teacher had a special ed background and was wonderful!

 

We consider my daughter "mild" - she also wasn't severe enough for the NIH trial. On a scale of 1-10 at her worst, she probably ranks a 5. I would describe her outbreaks similar to a teenager going through REALLY bad PMS. (Which makes us dread those years all the more!!!)

 

One of the fellows at Dr. Murphy's office even confirmed that boys tend to present differently than girls.

 

As for catching it early - I feel that we have. And although she got strep 4 times last spring (I think they were just giving it back and forth to each other) and already 1x this fall (first week of school!!) - she tends to clear completely with an extended round of abx (4-6) weeks, with no lingering symptoms between infections.

 

While we're still struggling with my son significantly - we feel that because we were proactive in getting the family tested/treated early on, we helped catch hers early enough that she's a "manageable" case.

Share this post


Link to post
Share on other sites

I would have blood drawn (aso antidnase b, Lyme western blots, etc) then throat culture and abx. I personally would wait on steroids and try to get bloodwork before the abx start as they can skew lyme tests etc.

Share this post


Link to post
Share on other sites

Mom MD,

 

I have to admit your post gave me a chuckle. I mean, you're a doctor and if your husband gives YOU the skeptical hairy eyeball.....how do any of us stand a chance???

 

God bless the dads who fight for their pandas/pans kids. My husband is a great guy who trusts my instincts....especially when my instincts and his wallet do not intersect. But the pandas dads who take this fight head on are truly exceptional fathers. :wub:

 

I thought of you when it was reported that Swedo said not to chase titers as we both have kids whose DNAseB titers had risen and fell with degree of behavior. My younger dd9 is mild and we have managed with abx and a steroid taper or two. Her IgG is on the low side, low 600's when the bottom of normal range should be high 600's. Dr. B said not to use her IgG level as a measure of her health.

 

Jill

Share this post


Link to post
Share on other sites

I have the same as you. Two older kids, both pex and IVIG (though they are 13 & 14) and a 7 yo who was "mild and caught" early. I am working on catching our 4 yo NOW before the potential spiral down!

Our doc gave the 7 yo steroids ( a month's worth) and zithro at first. That was almost 2 years ago (she is 7) and she is just starting her 4th steroid month and now, cefdinir for this most recent exacerbation. It started with only a vocal tic, squeaking. At 5 years old, that could easily have been a wait and see deal. Well, wouldn't you know, the subsequent exacerbations included OCD, frightening thoughts, wetting, the whole nine yards- though not all at once.

 

I would jump on it early- and for all my kids, steroids have been a real lifesaver. I counted my lucky stars when my preschooler (not diagnosed with PANDAS- but seeing the neuro next month) needed IV steroids and IV abx for pneumonia and asthma last fall-- it shut down her intrusive thoughts and other OCD symptoms in a few days! She has been in good shape until this summer.

We just saw our PANDAS doc and she said the rate is about 50% for siblings. That would be accurate here.

 

Best of wishes to you!

Share this post


Link to post
Share on other sites

Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation).

My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.

Share this post


Link to post
Share on other sites

Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation).

My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.

 

OH...maybe she could qualify for the NIMH IVIG study? they still need kids.

Share this post


Link to post
Share on other sites

Can anyone help me understand why PANDAS is passed genetically like this? Would you consider having another baby knowing that there is a 50 percent rate that your next kid could have this?

Share this post


Link to post
Share on other sites

Bttrfly1 --

I'm neither a doctor nor a scientist, but I would venture that the tendency for multiple kids in a family to be susceptible to PANDAs/PANs is part and parcel of one or both of the following inheritable conditions:  1) the constitution of one's immune system; and/or 2) one's methylation cycle and any mutations that potentially impact one's inherent ability to properly process nutrients, maintain neurotransmitter balance and control the body's inflammatory responses.

The methylation cycle and all of the genetic code and mutations stuff is way over my head, but you can find multiple threads with some good information here on the forum.

I'm sure the prospect of a second kid with PANDAs/PANs challenges is a daunting one, but it might help to remember that susceptibility, and even genetic mutations, don't necessarily result in gene expression or manifestation.  And forewarned can be forearmed, so there are likely some steps you could take during your pregnancy and your new child's early months/years that might curtail or even potentially  prevent any future expression of PANDAs/PANs issues.  I'm not sure what part of the country you're in, but Dr. Kenneth Bock in New York State runs a medical practice which is aimed at promoting the healthiest possible in-utero environment and nutritional and health practices for infants and children that result in strong, healthy, "neurotypical" immune systems.  If his practice is an option for you, it might be something to consider.  I've heard him speak and read his book (Curing the New Childhood Epidemics:  Allergies, Asthma, ADHD and Autism), and he's quite impressive.

All the best to you!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
×