momcap

Any point in seeing a Pediatirc Rheumatologist?

6 posts in this topic

Has anyone had any luck seeing a Pediatric Rheumatologist? We are trying to sort out this PANDAS puzzle and I have no idea what to do next. Last night ds who turned 7 this week was sobbing on my shoulder, "Why am I like this? Other kids aren't like this?" What do I tell him? What do I do?!! (I'm needing a little support, or maybe a kick in the behind.)

 

After hearing about PANDAS this summer his ASO titer came back at 512. We did a 10 day trial of penicillin. On day 5 he woke up singing (this is my chronically irritable, aggressive, rude, ODD child). He gave everyone hugs and kisses (??!), and went to play outside where he thinks the dreaded bugs are going to get him. He found a big toad and got peed on. This should have been a trigger for a major raging meltdown. Instead he changed his shirt, washed his hands, and went back outside. I couldn't believe it. 24 hours after the penicillin ran out we were right back to square one. So I requested another 10 days of penicillin and saw the same thing to a lesser degree. Day 4 and he woke up singing again. Unfortunately I came down with a fever and saw him regress while still on the penicillin. Doctor 1 has no idea what to do with us and wants to refer us elsewhere. Doctor 2 is not willing to give any more antibiotics and will not consider a steroid test. I emailed Dr. K who said we have enough evidence to strongly consider a PANDAS diagnosis, but we should pursue treatment here in Canada. Where??! Nobody here knows what to do, if they have heard about PANDAS at all.

 

BTW - we also swabbed the whole family and did ASO titers. All back normal, even though dh is on antibiotics for a current sinus/throat infection. Ds5 and I have sinus pain and ds7 & ds3 are complaining of sore throats. It seems we are always sick, but nothing ever comes back abnormal except for that one ASO at 512.

 

So we're waiting on results from Dr. Cunningham. I asked for a referral to an immunologist, but our doctor wants to send ds to a pediatric rheumatologist. That's probably a year wait to get in. I have spent the last 4 years on one waiting list or another and I'm at a total loss as to what to do next. Any suggestions?

Share this post


Link to post
Share on other sites

I know that there is a pediatric rheumatologist at Children's in Boston who is somewhat knowledgable about PANDAS - lists it as a specialty. His name is Dr. Robert Fuhlbrigge. I've heard he's not as aggressive as some others, but he is aware of it and does treat it. If you think about the connection between strep and rheumatic fever, sydenham's chorea and how that led to the discovery of the connection between Strep and OCD - it doesn't seem like an unreasonable type of specialist to see. But, man, you have to wait a year to see the one your doctor referred you to? I suggest making an appointment and asking to get on the cancellation list. You may also want to see if you can have a phone consult or ask if he does treat/is aware of PANDAS.

Then, in the meantime, keep pursuing other options/doctors. If you find something else, you can always cancel the first.

 

Have the doctors you've seen seen the post by the Director of the US National Institute of Mental Health? If not, maybe that can buy some more credibility.

http://www.nimh.nih.gov/about/director/index-ocd.shtml

 

Also, there is a section for doctors on www.pandasresourcenetwork.org. Maybe after reviewing that, they will be more willing to prescribe long term abx until you get to see a specialist.

 

Also, can you show your son the website that the 13 year old boy put together to show him that he is not alone and that other kids feel the same way he does. And tell him many have gotten better. Give him and you some hope.

 

The other thing - if you can't get a long term abx prescription, what about looking into the Olive Leaf Extract that Stephanie has talked about in her "jumping ship" post?

 

Good luck.

Kara

Share this post


Link to post
Share on other sites

Rheumatologists are quite familiar with autoimmune diseases and using IVIg as a treatment. However, not all rheumatologists are familiar with PANDAS. If you can't find anyone in Canada who has treated many kids with PANDAS I would highly recommend that you go see Dr. L, K, or B.

 

Nancy

Share this post


Link to post
Share on other sites

Thanks Kara. I printed everything I could find on PANDAS and gave it to our pediatrician, including the NIMH director's post. I also directed him to the website you mentioned. He's actually heard of PANDAS and believes it exists. He thinks the protocol is to treat any active infection with a standard course of antibiotics and PANDAS will go away. I think I overwhelmed him with all the info because he is no longer returning my calls. I booked an appointment to talk to him about next steps, but the soonest he can see us is Oct 22nd. Our system here in Canada is pitifully slow due to a major shortage of doctors.

 

I will definitely show ds the website for kids. I just checked it out and it's great!

 

I might try the olive leaf extract. We've tried so many supplements. Nothing seems to work for any length of time. But I guess it's always worth another try. Right now he is supposed to be taking probiotics, Vit Bs, anti-strep drops, and Omegas. He is convinced they are all poison, so we're at a stand still. But I will at least look into it. Maybe it's something I can mix in without him knowing.

 

Nancy - I think we may end up going to the U.S. when all is said and done. I just can't find anyone here in Canada. It doesn't seem fair when I pay my taxes into the Canadian health care system, only to be forced to pay out of pocket in the U.S. But I guess if I haven't figured out life isn't fair yet, then I'm really in trouble. ;)

 

Thanks for your replies. I really appreciate knowing I'm not alone in this. It gives me strength to keep on going on.

Share this post


Link to post
Share on other sites

As for the probiotics - will he eat yogurt or does he think that's poison, too. We get by just with Stonyfield Farm yogurt or DanActive yogurt drinks...Clearly, every child's immune/digestive system is dfferent - so it may not be enough. But it may feel less like taking medicine if it is a food like yogurt. If you get whole milk yogurt it tastes much better - not as sour. You could make smoothies, too, with frozen blueberries, vanilla yogurt,frozen bananas (peel and freeze your over-ripe bananans) and OJ or some other juice.

 

Right now he is supposed to be taking probiotics, Vit Bs, anti-strep drops, and Omegas. He is convinced they are all poison, so we're at a stand still. But I will at least look into it. Maybe it's something I can mix in without him knowing.

Share this post


Link to post
Share on other sites

As for the probiotics - will he eat yogurt or does he think that's poison, too. We get by just with Stonyfield Farm yogurt or DanActive yogurt drinks...Clearly, every child's immune/digestive system is dfferent - so it may not be enough. But it may feel less like taking medicine if it is a food like yogurt. If you get whole milk yogurt it tastes much better - not as sour. You could make smoothies, too, with frozen blueberries, vanilla yogurt,frozen bananas (peel and freeze your over-ripe bananans) and OJ or some other juice.

 

I will definitely try. Some probiotics is better than none at all. I tried mixing it in yogurt, but if he doesn't open the package himself he is immediately suspicious (OCD, or because we've tried so many supps, or maybe both). He is also crazy picky - will only eat certain brands, and only the strawberry flavour. I'll have to try those DanActive drinks. If I make a big deal of them I know he'll want to have one too. Thanks for the suggestions!

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
  • Help us learn if blood type has a correlation with PANDAS/PANS   21 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic