PKM
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Posts posted by PKM
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I just called an LLMD to book an appointment for my son when we go see Dr.B in December. I was quoted a price of $1965.00 for this appointment - no lab fees or anything included. Is this typical? He is one of the bigger names but still - I think this is a bit expensive...
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We are in Canada (Winnipeg, Manitoba) and wondering if anyone knows of a good LLMD in North Dakota or (anywhere else close by)?? My son tested +ve on Igenex which was ordered through Dr. B. We believe he picked it up when my in laws lived in the North Woods of Minnesota where we often visited. My father-in-law has since developed a Parkinson's like illness and he has also had many other strange symptoms that no one here can explain. We are now wondering if he too has Lyme. We are wanting to have him tested through Igenex as well but we need to see someone who will sign the requisition form - we are pretty sure no one in Canada will do that for him. As such we are thinking we have to cross the border to have it done - but we don't want to waste time going to doctor's in the US who may also not be willing to sign the Igenex requisition form. So....if anyone knows of a good LLMD in North Dakota or anywhere else close by we would very much like to hear from you!!
Thanks
PKM
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I don't know if you have heard about geocaching?? It is a fun thing to do while you are out walking (especially for boys). You can go find the caches in your area first, but once you have completed those, you can drive to other areas, go for walks, and find the caches in those areas. There is a lot of info about it on the internet - how to get started etc. It might be worth checking out, especially if he is supposed to be walking for exercise.
PKM
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Like Worried Dad's son, my son was initially diagnosed with Sydenham's Chorea (and rheumatic fever). He suffered from extreme chest pain that was primarily exertion enduced. When he had the chest pain, he had to stop whatever he was doing and rest. He clutched his chest in pain and became bright red and sweaty. The pain generally went away after about ten minutes or so but the redness and sweating often took closer to an hour.
He had a cardio work-up. His heart valves were fine but he had a pronounced left axis deviation and a murmur. The cardiologist thought that the strep antibodies had attacked his heart muscle.
As time has passed, this has improved significantly (he has been on antibiotics since he was diagnosed). He rarely has chest pain today but it still does happen on occasion.
For him, these were not anxiety induced - he is not an anxious child in the least and does not panic about much of anything - "cool as a cucumber" describes him well.
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Hi and welcome to the forum.
I am from Canada (Winnipeg) but we haven't had much luck here at home. We were recently approved to go to the US to see a specialist (he had an appointment on Jan 20 with Dr.
- it took us a long time (and a lot of jumping through hoops) to have him approved for this. We are very grateful that he was approved. Feel free to PM me if you have any questions.PKM
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PKM, just wondering how you got insurance to cover it? We're seeing Dr. B in 2 weeks but he's out of our network. Can give you feedback about hotels after our visit.
Are you in Canada? Or the US? Things work differently in Canada than they do in the US. Before being approved for the USA for health care, we had to prove that we had exhausted all options for our son both in our home province of Manitoba and across Canada. As such, we saw 2 specialists in Manitoba and one in Alberta. After this, and having letters written by the doctors that my son would best be served by someone with both an interest and expertise in post-strep conditions, we got the approval. We have been working towards getting him to the US for a year now. Wait lists here are very long for appointments etc. so the whole process has been very long with various struggles along the way.
I don't know if this helps you at all, but that is how we got it accomplished here in Winnipeg, Manitoba. However, the way you mention the words "out of our network" makes me think you are in the US. Maybe there are some "hoops" you have to jump through first in order to see someone out of your network?? Like somehow proving there is no one in your network that has the expertise to help your child?? Have you tried phoning and asking about this?
PKM
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We got lucky! Our provincial health care plan said yes to sending us to Darien to see Dr. B for a consultation and diagnostics. It has been such a long journey/fight to get us this far. We are very pleased.
His appointment is on January 20th and so I am wondering if anyone has any suggestions on where we might stay while we are there?? Has anyone here had any experience with any of the local hotels that are reasonably close to Dr. B's office?? As always, any recommendations/thoughts would be greatly appreciated.
Thanks
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We got lucky! Our provincial health care plan said yes to sending us to Darien to see Dr. B for a consultation and diagnostics. It has been such a long journey/fight to get us this far. We are very pleased.
His appointment is on January 20th and so I am wondering if anyone has any suggestions on where we might stay while we are there?? Has anyone here had any experience with any of the local hotels that are reasonably close to Dr. B's office?? As always, any recommendations/thoughts would be greatly appreciated.
Thanks
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Emerson,
My son got stuck in certain positions with his dystonia...his head would be frozen so that he would be staring up at the ceiling and his shoulders would also be fozen up so that they were almost touching his ears or sometimes he would be frozen so that his head was stuck leaning over to the left side. I had him at home when his dystonia was so bad because, like you, holding a pencil and writing was simply out of the question. His muscles were just sooooo tight. It really was like he was "frozen". He is young though and never complained about much pain with it - so I don't know what kind of pain he experienced with it (not much of a complainer). Whenever his dystonia was bad, his CPK levels (blood test) were always very high - so I would have to imagine that it was painful to some degree.
I don't really know what might be available to you to help with the dystonia because his resolved on its own in time - he never had any other treatments for the dystonia. Will we see it again?? Who knows, but we just take things one day at a time. I hope someone else might have some thoughts on what might help you with this. I am sorry I don't have more to offer.
My son was diagnosed with Rheumatic Fever and Sydenham's Chorea. The PANDAS question remains. We have no PANDAS specialists here in Canada. No savvy doctors trying to help us out much! We are thankful at least for the Penicillin VK - it seems to be protecting him from strep (as far as we can tell). He has had many throat swabs with the 72 hour cultures (no rapid strep tests with my doc) and so far they have been -ve since starting the penicillin. I know that Sydenham's (for some children) can take a long time to resolve. I have heard from others that it has taken up to 3 years - and so we still remain hopeful that things will resolve on their own. He does seem to be SLOWLY getting better with the antibiotics and TIME. He has essentially been symptom free for about four months now (and he even had a few viruses thrown in there). We will have to see what flu and strep season brings for him this year. At the same time - I think that Sydenham's can evolve into PANDAS - it is my opinion that all of these post-strep conditions are on the same spectrum. This forum keeps me up to date on all of this - and there is not a very active Sydenham's Forum out there to be found. So I tune in daily to this one!
I have read all your posts (I really do read the forum daily!) and I think you are a really great kid. You are really trying to be active in your health care and treatment. I encourage you to keep fighting the fight! You are doing a wonderful job!
I hope others might have more to share regarding dystonia and possible treatment options........ has your doctor offered any thoughts on how to possibly treat it??
PKM
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My son was diagnosed with Rheumatic Fever/Sydenham's Chorea almost 2 years ago. He has had chorea, tics, and dystonia with exacerbations. He has been on Penicillin VK since diagnosis. He seems to be slowly improving as time passes but still has movement issues when his immune system is challenged.
He had very severe dystonia on 2 separate occasions. At one point he could not walk because all the muscles in both legs had seized up completely. This was shortly after he initially fell ill. He also had dystonia in his neck and shoulders. When he had a second bad exacerbation last winter he had severe dystonia again - but only in one leg. I haven't seen any dystonia since that time.
I haven't seen too many others mention dystonia on here so I am curious to see what others might have to say! Thanks for creating the post!
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I live in Canada and my doctor is submitting a request to have my son looked at in the USA. I was asked if I wanted to see Dr. Latimer or Dr. Bouboulis. I am wondering if there is anyone out there who has experience with either doctor that might be willing to PM me so that we can chat?? I am having a hard time deciding and would like to talk with some others before making my decision.
Thanks!
PKM
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If it were me - I would get it checked out ASAP. The stiff neck thing combined with the head pressure are a little concerning (especially since your child is describing it as not a typical headache - and your child is generally used to severe head pain due to migraines).
It could just be the "typical" IVIG reaction but better safe than sorry.
How stiff is her neck? Can she rotate her head in all directions or is it too stiff for that? The fact that she is alert is a good sign but I would still be inclined to check it out.
Hope it is nothing serious and she feels better soon.
PKM
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My son had a bad reaction to clonidine (which is an antihypertensive like Tenex is). He had a dramatic increase in movements and had a lot of trouble sleeping (no nightmares - he just couldn't sleep while he was taking it). My son's negative reaction was immediate though (the next day). So it sounds like it could be a "turning back the pages" type of reaction or like TRG girl said - maybe the Tenex is playing a role.
PKM
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Thanks Buster........that was helpful. I don't know where this forum would be without you!
PKM
oops thought of one more question.
You said that #3 was probably the most likely - that there is inflammation (from whatever virus/infection) and that causes the BBB to open. I get that part but how do those bad anti-neuronal antibodies get triggered again to even cross the BBB if strep is not there to trigger them - just some other random immune system challenge. Is it because these anti-neuronal antibodies can now just be made again and again in the absence of strep because the immune system has a memory of them?? Like for as long as the BBB is open (or when it becomes open) they think they have a job to do (when they encounter the neuronal tissue they believe they should attack??)
Sorry to pick your brain so much - I'm just having a hard time understanding why the immune system seems to make those same anti-neuronal antibodies even in the absence of strep - if untreated strep is what originally caused the creation of those anti-neuronal antibodies in the first place. Anyhow - perhaps that is the million dollar question that no one really has the answer to yet!!!
Thanks again Buster.
PKM
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Again Buster - since you do seem to have such a great handle on all the science behind this..........!!
If the antibodies go away after 3 months, why do so many kids seem to have exacerbations with any kind of immune system challenge?? Is it because as soon as the immune system starts to work, it brings out all of the antibodies in its memory (both good and bad) while it tries to figure out how to deal with this new assault - even if it is not strep (because our immune system keeps a memory of all of our antibodies right)?? And then if the BBB is open when our immune system "kicks in", these bad ant-neuronal antibodies (originally caused by untreated strep) find what they think they should attack (brain tissue) - and as a result more of these bad antibodies are made because they think they have found a job to do??
Sorry Buster - my mind isn't super scientific!! I hope you understand what I am trying to ask!
Thanks
PKM
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Hi there.
I'm another fellow Canadian struggling to find help for my son. Our health care system is tough to navigate - especially for anything out of the ordinary!! I just sent you a personal message.
PKM
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They gave me a referral to a new pediatrician, who just contacted me to see my son on Monday.
Hi Sweet Cheeks Mom,
As a fellow Canadian also trying to find help for my son....just wondering if this new pediatrician was PANDAS "friendly". Did you have any success at your appointment yesterday?? How is your son doing?
Thanks
PKM
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This appears to be the guideline for Canadian coverage of IVIG for PANDAS:
http://www.bloodmed.com/contentimage/guidelines/2854.pdf
If I were you, I would look up the authors, and figure out which one is the neuro person, or contact Heather Hume directly (her email address is on the paper). This is the group that made the recommendation that IVIG should be covered by the Canadian Health Ministry - hopefully at least one of them contributed to that recommendation and could direct you to someone who would implement it, or at the least, they obviously communicate with the ministry and could make a recommendation that Canada cover treatment administered in the US - my understanding is that this does happen in some cases (not necc for PANDAS but for other things).
I hadn't thought of contacting the authors directly myself - that is certainly a great idea and I will give it a try. My son's neurologist was trying to get him to the US but Manitoba Health was really pushing her to find someone in Canada - then when we got to Calgary, the neurologist there said she was not an expert in this area and she had nothing to offer. What a waste of Manitoba Health resources and our own! (Manitoba Health paid for our flight and the dr's appointment but we were expected to pay for our hotel, car rental, incidentals, etc.)
Perhaps now that this did not work out they will be more willing to send him to the US.
I noticed that in order for the IVIG to be covered in Canada for PANDAS, the diagnosis has to be made by an "expert". I would really like to know where these so-called Canadian "experts" are. Hopefully one of the authors will be able to help with that.
Thanks for your thoughts and input!
PKM
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WOW this is really disappointing and I bet highly frustrating for you, to know its covered there but it doesn't mean squat if noone will treat it. Wouldn't they consider coordinating care with a docotr from here , phone or email for a protocol so you could get your child treated? very interesting and sad ) :
It is indeed very frustrating and confusing (how is it that it is covered but no one is using it??? - seems so odd to me). I am trying very hard to get care for him but it is very difficult. It seems that the old NIMH guidelines are standing in my way most of the time. I really wish they would update their recommendations - soon!!!!!!! I will keep trying though - can't give up!
PKM
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Also- this is prob a dumb ? but since PANDAS isn't an "on the books" disorder how is it Canada has it as something they pay for then? Does Canada have a protocol for what they consider PANDAS and we just don't here- how confusing and strange
As a Canadian I don't get it either. I don't get why it is even listed as treatment for PANDAS here in Canada because my son's neurologist has been trying for a very long time to find someone in Canada with some experience using IVIG for PANDAS or post-strep problems (Sydenham's etc.). VERY FRUSTRATING!!!!!!!! So, it is listed here in Canada as a treatment option for PANDAS but apparently there are no Canadian doctors actually using it!!!!!!!!!!!!!!!!
(Sorry - just venting a little!) But if anyone in the USA thinks Canadian kids are actually getting IVIG treatment for PANDAS - it seems that this is not the case. In fact we just got back from a medical trip to Calgary (that Manitoba Health sent us on) only to be told that no one in Canada has PANDAS etc as an area of expertise - that my son would have to go to the USA or to London, England to be seen and treated.
PKM
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Interesting...........my son has a heart murmur and pronounced left axis deviation on his EKG results - but the echo looks ok. He had this before he actually had Sydenham's chorea. But we also know now that he was having repeated untreated strep infections between the ages of 2 1/2 and almost 8 when he was diagnosed with Sydenham's. He started having problems with his heart about a year before the Sydenhm's diagnosis (severe chest pains etc.). Is it the strep antibodies that caused the problems or the high Cam K II?
Something for us to monitor for sure.
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I am desparately trying to figure out what is wrong with my son. I was worried about Kawasaki and still am, but wonder for those whose children had rheumatic fever, what were your abnormal labs??
His ESR (sed rate was 35) which is elevated and his CRP (c reactive protein) was 0.3 on Friday, but up to 1.6 on Saturday. We have drs appointment in one hour but trying to get info ASAP from parents who have gone through this.
TIA.
Colleen
I won't give exact numbers here because things seem to be measured a little differently in Canada but my son had elevated CRP, ESR, Neutrophils and ASO Titre. I hope your son is OK and you have some answers now.
PKM
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Our 8 year old son, who either has Tourettes or PANDAS started ticcing again a month ago after almost complete cessation of tics after 2 rounds of amox last September. He is back on amox and we are awaiting ASOT results, but he had a c-reactive protein test and the result was 12 which I understand is a little elevated. I have not had a chance to discuss this with the ped can anyone tell me any info about this result. Is it high?
I don't know how high that is because I am from Canada and I think the test is taken a little differently here (using a different measuring system I think). What I can tell you is that an elevated CRP is indicative of inflammation in the body. My son's was elevated when this all began for us with rheumatic fever. It has not been checked again so I don't really know what his level of CRP is now. Do you know why they checked his CRP?? If you are trying to figure out how high his level is, you might find a lab's or hospital's website that provides the normal range for CRP using the same measuring method that was used to measure your son's CRP (my son's was measured in mg/dl for which the normal range is between 0 and 1.0 but it can also be measured in mg/L and nmol/L..........and I'm not sure what else).
Hope that helps at least a little.
PKM
- it took us a long time (and a lot of jumping through hoops) to have him approved for this. We are very grateful that he was approved. Feel free to PM me if you have any questions.
The Doctors
in PANS / PANDAS (Lyme included)
Posted · Edited by PKM
Beth Maloney and Sammy are on the episode of The Doctors airing today. I have not watched it yet but PVR'd it and plan to watch it later. Just thought I'd let people know in case they want to check it out.
PKM
Edit....
Oooops - my bad - I didn't scroll down far enough to see that this has already been mentioned etc. I also can't figure out how to delete this post that is clearly not needed!!
Sorry!
PKM