Can not find Doctor in Canada

[lovemylittleguy]

Appealing to any fellow Canadians or Americans close to Alberta border who have a doctor on board or know of a Doctor who may be able to help. I am in Edmonton area.

At 2 yrs 5 months my son develops severe separation anxiety, fears (loud noises, taps, dogs, garage doors etc) and regression. All within 2 weeks.

On Feb 2, 2012 (5 yrs 11 months) he is out of control, in rage, hitting. My son is not sick that I am aware of but I have strep throat that I am treated for. Within 3 weeks I have a child who is confused, oppositional, having conversations that make no sense, hyperactive, deep sadness, strange behaviour, unusual jerky movements, hitting himself on the head saying "bonkers" 20 to 30 times a day. What we learn later is harm OCD thoughts. All new behaviour.

3 different ssri prescribed ALL of which had to be lowered from the low starting dosage because of hugely adverse reactions. Now on .70 ml prozac (ABOUT 2.5 MG).

While I am looking (ie charting behaviour) for the correct dose of prozac (I have been keeping notes for over a year) I see spikes in behaviour when I go to that date in diary there is nothing unusual happening but then I notice that within 3, 2 or 1 day after the spike, my son gets sick.

10 day Antibiotic prescribed in Dec. for possible strep causes increase in OCD and now tics that last for 3 days then good improvement in OCD for 8 days after finishing antibiotic.

Psychiatrist does ASO titer at my request and finds it slightly elevated and prescribes 15 day Antibiotic which ends Feb 22 this year. Huge increase in movement, humming, tics, separation anxiety, sadness, and OCD. Then movement humming tics stop. Confusion decreases by 60%. He is able to write letters 75% of time. I have 3 completely symptom free days (never had before) and 12 pretty good days (never had that either) The harm thoughts are gone, but come back 3 weeks after antibiotic is stopped. Where 90% of day would be symptomatic we went down to 10% of day. We are now back to 20 and 30% of day. Psychiatrist does not know what to make of this and recommends special school and has referred me to new psychiatrist. (He basically wants out)

I am reaching the end of what I can bear...please help if you can

Thank you

Janice

.

[Ozimum]

So sorry you are here but glad you've found us.

Just wanted to say that if you feel you can't get to any of the PANDAS specialists in the USA, then you might consider seeking out a DAN!/MAPS doctor as they see PANDAS/PANS in Autistic kids and have some idea of how to treat it. You don't have to be on the spectrum to see one of these doctors. I suggest you contact the MAPS website http://www.medmaps.org/contact-us---patient.html You could also check the Saving Sammy website for a list of drs

A DAN!/MAPS dr helped DS and he's now my #1 hero!

Good luck!

Edited April 5, 2013 by Ozimum

[momcap]

Hi Janice,

 

I could have written your post - my story exactly! Especially "3, 2, or 1 day after spike my son gets sick". Mine too! As he progressed I could also track his flares to others in the house coming down sick.

 

I'm in Ontario - no PANDAS docs here. We are working with a ped who is interested in PANDAS and following the developments in Canada. Unfortunately she's unwilling to do anything beyond a script of amoxicillin, until a protocol has been established here. I had emailed with another mom in Alberta who looked everywhere out there, and no luck either, but that was at least a year ago. If there is anyone in Canada treating PANDAS I am unaware, although I have heard of several docs quietly giving longer term prescriptions under the radar. I really hope you can find somebody, but my guess is you will end up in the U.S. We spent 12 months in the U.S. working with a lyme doc (LLMD). We watched my son healing and it was nothing short of miraculous. Before treatment in grade 2 he missed almost HALF the school year, and life was a nightmare. In grade 3, while on lyme treatment of combo high-dose abx, he had a successful year, made friends, and had a pretty normal life. This was a HUGE big deal because he was almost non-functional before that. Then after 12 months we were forced to stop treatment by our doc here (long story). Now it's grade 4. He's back to all "N"s and "I"s on his report card, hasn't gone to school in months, can barely leave the house, and is stuck on a waiting list for a short-term hospitilization in order to sort out psych drugs. We have tried everything medicine has to offer here in Canada - going to major teaching centres in Toronto, London, Hamilton. Twice he ended up in the E.R. due to adverse reactions to psych drugs. This is a nightmare. I'm going to try this short-term residential thing as a last ditch effort before heading back to the U.S. If that doesn't work (and I'm not holding my breath), I'm going to tell my doc that we literally tried everything and have no choice left. Doc will do whatever he feels he has to do, but I need to do what I believe is in the best interest of my son's health and well-being - which will be going back to the doctor that can offer us a treatment plan with results.

 

I don't share here very often anymore, cause we're in such a sorry state of affairs. I apologize for the gloomy outlook, and lack of hope. I second Ozimum's advice - get to a DAN here if you can. IMO - Conventional medicine has nothing to offer, other than throwing psych meds at your kid. Which might be fine if they worked, but in our case they don't. Meanwhile, I would look into the U.S. docs treating PANDAS, or a good LLMD if you suspect lyme, and plan on heading there. I don't know about Alberta, but in Ontario there are government disability programs that offer financial coverage, including out-of-country medical expenses. I stumbled upon our program, applied, and was shocked when we were approved.

 

My heart goes out to you as you search for a medical provider.

[Mayzoo]

Here is one I found on www.pandasnework.org.

 

Dr. Ayla Wilson, ND
Naturopathic Medicine
Vancouver, BC
604-988-1411

Edited April 5, 2013 by Mayzoo

[lovemylittleguy]

Ozimum, Thank you for that. (that was something I did not know and you have broadened my search) Mayzoo thank you after I am done here I will follow up with that person.

 

Momcap First off I am so sorry you are in the position you are in. Hugs to you and your son. The fact that you took the time to write me such a helpful note (especially since I know the amount of energy required just to deal with this on a day-to-day basis) I can not thank you enough. You have sort of clarified what I was suspecting (basically no protocol in Canada) and very little awareness. Ditto to pretty much everything you had to say from psych drugs to we have to do what we feel is best for our kids. Also not sure if you have in Ont. I got my sons therapist to fill out her portion of Disability tax credit I think it is federal (which I found on line). I will be sending that away shortly. Long story but I guess I am just getting mad and I am not so patient anymore. Again Thank you!

[JuliaFaith]

We have a Natureopathic Doctor (also MD in office that treats in US 1 month then Europe next month switching every month) in the Seattle area that treats the whole body to heal a patient. There was someone from Vancouver in their office last week. PM me if you are interested.

 

FYI--my mom is Canadian

 

Good Luck!

[lovemylittleguy]

Hi Janice,

 

I could have written your post - my story exactly! Especially "3, 2, or 1 day after spike my son gets sick". Mine too! As he progressed I could also track his flares to others in the house coming down sick.

 

I'm in Ontario - no PANDAS docs here. We are working with a ped who is interested in PANDAS and following the developments in Canada. Unfortunately she's unwilling to do anything beyond a script of amoxicillin, until a protocol has been established here. I had emailed with another mom in Alberta who looked everywhere out there, and no luck either, but that was at least a year ago. If there is anyone in Canada treating PANDAS I am unaware, although I have heard of several docs quietly giving longer term prescriptions under the radar. I really hope you can find somebody, but my guess is you will end up in the U.S. We spent 12 months in the U.S. working with a lyme doc (LLMD). We watched my son healing and it was nothing short of miraculous. Before treatment in grade 2 he missed almost HALF the school year, and life was a nightmare. In grade 3, while on lyme treatment of combo high-dose abx, he had a successful year, made friends, and had a pretty normal life. This was a HUGE big deal because he was almost non-functional before that. Then after 12 months we were forced to stop treatment by our doc here (long story). Now it's grade 4. He's back to all "N"s and "I"s on his report card, hasn't gone to school in months, can barely leave the house, and is stuck on a waiting list for a short-term hospitilization in order to sort out psych drugs. We have tried everything medicine has to offer here in Canada - going to major teaching centres in Toronto, London, Hamilton. Twice he ended up in the E.R. due to adverse reactions to psych drugs. This is a nightmare. I'm going to try this short-term residential thing as a last ditch effort before heading back to the U.S. If that doesn't work (and I'm not holding my breath), I'm going to tell my doc that we literally tried everything and have no choice left. Doc will do whatever he feels he has to do, but I need to do what I believe is in the best interest of my son's health and well-being - which will be going back to the doctor that can offer us a treatment plan with results.

 

I don't share here very often anymore, cause we're in such a sorry state of affairs. I apologize for the gloomy outlook, and lack of hope. I second Ozimum's advice - get to a DAN here if you can. IMO - Conventional medicine has nothing to offer, other than throwing psych meds at your kid. Which might be fine if they worked, but in our case they don't. Meanwhile, I would look into the U.S. docs treating PANDAS, or a good LLMD if you suspect lyme, and plan on heading there. I don't know about Alberta, but in Ontario there are government disability programs that offer financial coverage, including out-of-country medical expenses. I stumbled upon our program, applied, and was shocked when we were approved.

 

My heart goes out to you as you search for a medical provider.

 

Momcap First off I am so sorry you are in the position you are in. Hugs to you and your son. The fact that you took the time to write me such a helpful note (especially since I know the amount of energy required just to deal with this on a day-to-day basis) I can not thank you enough. You have sort of clarified what I was suspecting (basically no protocol in Canada) and very little awareness. Ditto to pretty much everything you had to say from psych drugs to we have to do what we feel is best for our kids. Also not sure if you have in Ont. I got my sons therapist to fill out her portion of Disability tax credit I think it is federal (which I found on line). I will be sending that away shortly. Long story but I guess I am just getting mad and I am not so patient anymore. Again Thank you!