Requesting Helpful Articles To Give To The Pediatrician....

[TessaKrista]

Hi,

 

I feel like I am on a roller coaster ride. When I initially started a post on this site, I was so down, distraught, depressed, shocked, alone, worried, bewildered, and I felt helpless. The people on here have helped me to understand more about PANDAS. I realize that my son had to be on something, so I repeatedly requested azithromycin. Finally, finally after a lot of asking, I finally got a 5 week course. I had asked his pediatrician, and many many doctors. They all said that pandas is controversial or a fad. Some said that they could not treat this, because his pediatrician is the one to treat it. So, at least I was able to get him the first 5 day course, which was at 300 mg for 5 days. I felt hopeful, based on what the folks on here were saying about their children and all children requiring azith or augmentin. Then I went to a walk in cinic and was very lucky to be able to get another 5 day course. Very lucky. The doctor said that he would give him a 5 day course even though he didn't think that my son needed it.

 

My son's behaviour improved on the 11th day. My husband even noticed. His tics diminished 90 percent (except when he ate a McFlurry and some bubble gum out of the machine), the tags on clothes did not bother him, elevators didn't freak him out, and he didn't need me to be right there with him. He even stopped coughing, which is something that he had been doing for so long.

 

I only had some azithromycin left over, so I started giving him a reduced dose, and have been for 3 days. I went to his pediatrician again today, really hoping that she would see the benefit in all of this, and she said that she doesn't see pandas at her hospital in Mississauga. She said that the Hospital For Sick Children is interested in studying PANDAS so, she referred my son there, to the movement disorders clinic, explaining that it will take a few months for an appointment. She already set up an an appointment for my son to meet with a neurologist this October or November (don't remember). That is a few months away.

 

So, today she said that she cannot prescribe any more azithromycin for a few reasons: pandas is controversial and she does not believe in it, the literature does not proved that it is real, the studies do not have representative samples, strep cannot cross the blood brain barrier, he likely has no infection now after being on azithromycin for 10 days, she said that my son might end up having an anaphalactic reaction to azithromycin by being on it for a few weeks, she has never prescribed it for any patient more than 10 days, his immune system will go down, and it is not good to be on a broad spectrum antibiotic for a long time.

 

I don't know what to do. I e-mailed Dr. K a while back, and he requested blood work. I will fax him the blood work. He is in the U.S. and I am in Canada. I don't know what he can do when I send him the blood work up that was done before my 7 year old son started taking azithromycin.

 

By the time my son gets to see someone at Sick kids Hospital in Toronto, it will be a while.

 

Are there any articles that I can give the pediatrician to have her see a different perspective?

 

What do you all recommend that I do?

Edited July 8, 2010 by Sweet Cheeks Mom

[TessaKrista]

Just to let you know, the blood workup that his pediatrician requested included a compete blood count and an antistrptolysin O titre (streptozyme) test. His results showed that he has 77 IU/ml, and the reference number is <65. Is that number significant or insignificant?

[thereishope]

Is there any other doctor you can see? One thing off the bat that I want to respond to is that no one is saying strep crosses the BBB. The antibodies are. As for articles to bring, if you look under "helpful threads" in the pinned threads you can find a lot of good info.

 

Amongst the info you bring, I suggest Buster's PANDAS Fact Sheet. We have it on here in a thread, but it also on www.pandasresourcenetwork.org. It will at least look more official than a print off from a forum thread.

 

In that Fact Sheet you will studies many studies cited. You could print off any of those as well. Everything stated in the fact sheet is backed up by research. No anecdotal information. One of the more recent studies that I would bring is the Columbia Mouse Study that was done last year. Here is a link to that http://www.mailman.columbia.edu/news/antib...e-disorder-mice

 

Another good article is one that discusses the failure rate of amox and pen. Granted, your child already had Azith,but this will help explain why strep is so hard to erradicate http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Finally, another article I like is "What Every Psychiatrist Should Know about PANDAS" http://www.latitudes.org/forums/index.php?showtopic=6506

 

I'm sure others on here will be able to provide more things for you to bring.

 

How is your son now? If he is doing better, would she consider putting him on a different antibiotic? What abs has he been on so far?

Edited July 8, 2010 by Vickie

[KaraM]

Hi,

 

Our pediatrician had heard of PANDAS, but his understanding of how it presented was incomplete. My daughter had a negatvie throat culture, so he did not think my daughter could have PANDAS. A few months later, after we discovered another child in her class with tics and other PANDAS symptoms that tested positive for strep, we pushed for (ok, demanded) abx. He very reluctantly prescribed a 14 day dose of Omnicef. She, too, improved around day 11. Then about a week after stopping she back slid.

 

We ended up participating in the Cunningham study. What eventually convinced him to give her prophylactics were her results from that, the article describing the study and Buster's FAQ, which he thought was very reasonable and well written (again, the FAQ can be found in the helpful threads here or can be printed from pandasresourcenetwork.org.)

 

So, if you can, participate in Dr. Cunningham's study. It may also give you some reassurance about whether you are following the right path. If you need more information on how to get into that study, just post again. It takes about two weeks between getting the kit, doing the blood draw, sending it in and receiving some preliminary results.

 

Hope this helps.

 

Kara

[justinekno]

I think if you search "cunningham" on the board, you will see alot of informative threads about the study and instructions on how to request the packet. I agree that it is a good tool to see if you are on the right track.

 

So, if you can, participate in Dr. Cunningham's study. It may also give you some reassurance about whether you are following the right path. If you need more information on how to get into that study, just post again. It takes about two weeks between getting the kit, doing the blood draw, sending it in and receiving some preliminary results.

[norcalmom]

http://www.pandasnetwork.org/buster.html

 

The above link is a summary of most of the pandas studies that have been done. Summarized by Buster. Also on that site are some videos, Lauren Johnson, and there is a presentation by Susan Swedo at last years Autism One conference under video library.

 

The Cunninghams Study - you can read the summary of it at :

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf

 

Thats another good one for your doctor. Although, I'd try to find a different doctor rather than try to change her mind!

[Chemar]

perhaps the "helpful threads" sticky here at the top of this forum may also be of help to you.

http://www.latitudes.org/forums/index.php?showtopic=3928

[sf_mom]

Perhaps finding a LL Dr. in Canada.... more likely to treat with antibiotics rather than convince existing Pediatrician that is obviously NOT versed in antibiotic use based on comments. They will have the ability to provide all tests to rule out other issues/co-infections. Make sure you read the symptoms listed at their website. It is scary how it can mirror PANDAS.

 

http://www.canlyme.com/

 

-Wendy

Edited July 9, 2010 by SF Mom

[TessaKrista]

Sneider 2005 Thanks Vickie, I checked out the thread, and there is a study by Sneider in 2005 that says:

 

Thus, azithromycin prophylaxis should not routinely be recommended for

children with post-streptococcal neuropsychiatric disorders. The

results of this study suggest that penicillin prophylaxis might be

considered for children who meet all criteria for membership in

the PANDAS subgroup and who have ongoing risk of GAS

exposure.

 

This is interesting.

[TessaKrista]

Thanks. I'll look into this to see who is known to treat this, and perhaps is more likely to be willing to look into a change in my son when he was sick with a sore throat and fever, a few months after having diagnosed and treated strep. As I mentioned in other posts, his pediatrician says that if a child has had strep, then it does not make sense to do a strep test a few months later, because they will always test positive. Then, two months after that...it just got worse, but the odd symptoms actually started while he was home sick on his 6th day. The symptoms worsened all at once two months later, with the initial ones remaining.

 

I will also look into requesting to have my son see an immunologist.

[TessaKrista]

Thanks Chemar. I will read everything in depth.

[TessaKrista]

Thanks Norcalmom. I will review everything in detail.

[TessaKrista]

Hi Kara,

 

It sounds like being involved in the cunningham study makes sense. How do I get started?

[KaraM]

You just need to email Dr. Cunningham. I included a brief history of my daughter's situation when I emailed her.

She responded within a day or two that my daughter could be in the study and that they would send out a kit. In our case, the kit did not arrive after a week or so. I followed up with one of her assistants and somehow our request got lost in the shuffe (Dr. C's mother had just passed away, so it was completely understandable). The kit arrived a few days after I spoke with her assitant. (My point is, follow up if you don't get it after a few days). There will be instructions, but here's the gist...

 

Once you get the kit, you bring your child to a lab and have the blood drawn. then you need to bring it to a fed ex drop off (they include the label) and have it shipped out for overnight delivery. You don't want to do the draw on a Friday or it will sit over the weekend...They will also want a copy of your child's health history from your doctor. There are some study forms to complete as well.

 

I copied the below from Pandasresourcenetwork.org:

 

If you are interested in participating in the research trial, please contact Dr. Cunningham at madeleine-cunningham@ouhsc.edu This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Hi Kara,

 

It sounds like being involved in the cunningham study makes sense. How do I get started?

[thereishope]

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Edited July 9, 2010 by Vickie