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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBook?  Our helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 

 


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Any point in seeing a Pediatirc Rheumatologist?


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#1 momcap

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Posted 24 September 2010 - 02:13 PM

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?
DS9 - Lyme & PANDAS (IgM & IgG positive on lyme Western Blot, chronic elevated ASO in 300-500s with baseline ASO of 27 before scarlet fever, CamK II @ 176, and anti-dopamine 1 @ 4000)
DS7 - Lyme (IgG positive) & "strep carrier"
DS6 - lyme (IgG positive) & chronic elevated ASO in 500-700s


#2 karam

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Posted 24 September 2010 - 03:21 PM

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....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

DD 11: Severe OCD & other PANDAS symptoms Fall 2009, PANDAS dx spring 2010; Bartonella dx spring 2011; Lyme diagnosis Fall 2011.
On various abx combos for three years. Stopped abx in March 2013. Doing GREAT!!!!!
DS 13: Emotional Lability past 4 years; suspected Lyme spring 2011, confirmed January 2012.
On abx since Feb. 2012. Doing really well, too.
Myself: Lyme dx Jan 2012. Treating. Improving.


#3 nancyd

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Posted 24 September 2010 - 03:30 PM

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

#4 momcap

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Posted 24 September 2010 - 04:44 PM

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.
DS9 - Lyme & PANDAS (IgM & IgG positive on lyme Western Blot, chronic elevated ASO in 300-500s with baseline ASO of 27 before scarlet fever, CamK II @ 176, and anti-dopamine 1 @ 4000)
DS7 - Lyme (IgG positive) & "strep carrier"
DS6 - lyme (IgG positive) & chronic elevated ASO in 500-700s

#5 karam

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Posted 24 September 2010 - 08:37 PM

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.


DD 11: Severe OCD & other PANDAS symptoms Fall 2009, PANDAS dx spring 2010; Bartonella dx spring 2011; Lyme diagnosis Fall 2011.
On various abx combos for three years. Stopped abx in March 2013. Doing GREAT!!!!!
DS 13: Emotional Lability past 4 years; suspected Lyme spring 2011, confirmed January 2012.
On abx since Feb. 2012. Doing really well, too.
Myself: Lyme dx Jan 2012. Treating. Improving.


#6 momcap

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Posted 25 September 2010 - 09:21 AM

[quote name='KaraM' timestamp='1285378648' post='85736']
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.[quote name='momcap' timestamp='1285364697' post='85709']

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!
DS9 - Lyme & PANDAS (IgM & IgG positive on lyme Western Blot, chronic elevated ASO in 300-500s with baseline ASO of 27 before scarlet fever, CamK II @ 176, and anti-dopamine 1 @ 4000)
DS7 - Lyme (IgG positive) & "strep carrier"
DS6 - lyme (IgG positive) & chronic elevated ASO in 500-700s




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