Canada: Trouble getting doctors to follow algorithm

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Canada: Trouble getting doctors to follow algorithm

Postby StephanieH » Feb 04, 2011 5:19 pm

Hi Everyone,
I am new to the forum, but not to HG. This is my fourth HG pregnancy (1 m/c) I was wondering what your experiences have been trying to get your OB's to follow the MotherRisk treatment algorithm. 

This is the first pregnancy I've had that doesn't seem to be responding AT ALL to the Gravol/diclectin/Zantac approach and I am desperate to get on the Zofran before I'm so far gone that I have no choice but to be admitted. 

Currently I'm 7 weeks and have 4 ok hours in the morning where I feel good enough to eat. The rest of the day, is a write off. In 2005 I was admitted to a hospital in the US after passing out in the bathroom of a conference center. They immediately identified me as HG (something it took me 3 months and 25 lbs. of weight loss to do in Canada) and gave me Zofran via IV and I literally felt wonderful for two days. When I returned home no one would prescribe it to me.

Six years later I'm having the same problem. Today I faxed all the MotherRisk data to a private clinic (yes they exist) and a walk- in.  Both doctors said that despite the paperwork they didn't feel comfortable prescribing it. My OB appointment isn't until Monday and I know by then it will be too late. I even have my doubts that he'll give it to me. He very reluctantly followed some of the algorithm last time - but basically still treated me like the illness was in my head.

Does anyone know of a doctor in Montreal or Ottawa who is up on the HG research?

Have you also been denied meds that could help you? I'm so depressed and angry, ---  I'm essentially being forced to sit around and just deteriorate.

Thanks for your input...
StephanieH
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Postby Cin » Feb 05, 2011 12:03 am

I'd get Motherisk to email or call you doc. Call the NVP line, tell them what's going on, and beg the nurse to ask Dr. Gideon Koren to help. He's a great guy.

Also, try name-dropping: "You know Dr. Gideon Koren, the doc at Sick Kids considered a worldwide expert on drugs in pregnancy? The guy who runs Motherisk? You know, the guy who discovered some mothers metabolize codeine into morphine and got docs to stop giving codeine to post C-section BFing moms? Yeah, HE says this drug is perfectly safe."

Then show him the Zofran study from this link: 11 years ago, Dr. Koren was saying Zofran was safe:

http://www.nvp-volumes.org/

Many hugs!
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Mom to Alex, 12 -- NVP
Isaac, 10 -- NVP
Naomi, 8 -- HG
Edward, 4 -- avoided clinical HG through aggressive pre-emptive treatment and pure luck (aka medicated fluffy)
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Not taking no for an answer

Postby StephanieH » Feb 05, 2011 3:43 am

Hi Cin,

Thanks for posting and giving me the extra motivation to not take no for an answer. I've been speaking to MotherRisk every few days since I found out I was pregnant. They managed me through my last pregnancy and if I hadn't found them I never would have attempted to have other children after my first. Unfortunately, they can't prescribe meds so I was forced to make the rounds with clinics yesterday (by phone) armed with my MotherRisk algorithm and studies. They refused to treat me and told me to wait it out until Monday to see my OB or go to emergency. Three days to them was nothing - to me it's the difference between my sanity and mental collapse.  I just can't do another severe HG pregnancy, especially after my last which was well managed.

So at 2 am I called the maternity caseroom at the hospital where I will deliver.  Yesterday when I called they refused to help me because I'm not 20 weeks yet. After my last round of puking I got so mad I decided to call back and not take no for an answer. I got a nurse who actually new what HG is, but she still tried to refer me to emerg. I explained that emerg.  has  continuously failed me - one doctor even told me to "suck it up you're just pregnant" (I went home sick and humiliated and ended up losing 25 lbs.). I told her that I recognize the signs from my first extreme pregnancy and that I'm at the crossroads point - either I get the drugs now and have a managed pregnancy or I wait until Monday when I'll have to be admitted to hospital with severe dehydration.

Getting the nurse to go against protocol was tough -- but I refused to let it go - finally she agreed to speak to a doctor that's coming in for a delivery. He has a good reputation (not taking new patients- I tried) so I had hope he would give me the Zofran. She just called me back and he's going to call in the prescription in the morning! 
Let's just hope I can still hold it down!

To everyone who may read this afterwards - we clearly need to advocate strongly for ourselves, as Canadian doctors seem slow to work through the algorithm. It's difficult to fight this uphill battle - but don't give up! Keep demanding to get the care you need and eventually you'll find someone who will help.

Best wishes to all.
StephanieH
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Postby Cin » Feb 05, 2011 2:12 pm

Good for you!!!

Yes, we haveto fight like hell during a tome when we are very weak -- it's terrible.

Hang in there and keep us updated.

PS you can take 32 mg of Z and up to 12 diclectin a day.
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Mom to Alex, 12 -- NVP
Isaac, 10 -- NVP
Naomi, 8 -- HG
Edward, 4 -- avoided clinical HG through aggressive pre-emptive treatment and pure luck (aka medicated fluffy)
Cin
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Postby Fluffyinsk » Feb 06, 2011 6:58 pm

I am in Sask and I was just prescribed Zofran after being admitted to the hospital with 4+ key tones and feeling like crap, and after losing 15+ lbs. I felt like this for 11 weeks and my GP said I just had to stay like this there was nothing he could do....but I found the Dr. that is going to deliver me and she immediately suggested the Zofran. It is somewhat working at least for the vomiting, but not really for the nausea, I think I need fluids every few days for it to work for the nausea since I think I am still de-hydrated and therefore is less effective, but I don't want to spend 3 days of the week in hospital.....so I am hoping that she is open to more discussion on something more permanent for providing fluids which I just can't seem to get in me.

I hope the script works for you and you start to feel better soon. Keep us posted on your progress, there are so few of us in Canada to get advice and support from. Hang in there!
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Postby saskHG#2 » Feb 06, 2011 8:37 pm

See, and Kathleen and I are in the same city and getting different treatment ;), although I got Zofran in the ER and was at least being considered to go home with the prescription for it.

Luckily the 12 Diclectin is working for me and my midwife has been encouraging me to just stick to whatever works and go for fluids when I need them.

I haven't talked to Motherisk yet but will remember to keep it in mind (thanks for the reminder Cin!)
Rhonda
Tai Lin, June 1 2000 mild HG
Kayah Lily, May 29 2008 mild/mod HG
Jonas Zephyr, June 28, 2011 mild HG
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Postby Arias » Feb 10, 2011 1:57 am

Hi Stephanie,
I'm from Montreal and have also suffered from HG. I can give you my doctor's name and number. She did give me a prescription for Zofran right away.

Here is her info (but you might need a referal to see her). Just let her secretary know that you are suffering from HG and desperately need a good doctor.

Dr. Louise Johnson 514-344-8330.
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Postby StephanieH » Feb 11, 2011 10:19 pm

Thank-you Arias!!! And everyone else. I'll call on Monday.

I've been taking the Zofran with mixed results. The first two days it was like a miracle. Then as my hormones began to peak (I'm now 8 weeks) it seemed less effective. I've now added about 3 new meds to combat the Zofran constipation, so along with the Gravol, diclectin and Zantac -- I'm popping pills every 2 hours. I must admit I'm utterly miserable. Each day I can't imagine living through the next. My husband keeps telling me I'm doing so much better because I'm not in the hospital, but I feel almost as bad as with my previous pregnancies and am now expected to function because I'm not puking every 10 minutes.

And I'm sorry to be on a venting streak here, but I swear if one more person asks me to do anything remotely social I will freak out. What part of I feel sick 24/7 do you not understand???!!!! I realize everyone is trying to "help" but having to say "no I really can't" every day to someone makes me feel worse!!! Every bit of energy I have is focused on surviving and taking care of my other two kids as best I can. This is why I stopped even answering the phone in my other pregnancies - it's the constant "crackering" from everyone. How I will possibly live through 7 more months of this? I just can't believe I have to wake up tomorrow and do this all over again.

I'm sorry I'm so miserable. I just can't talk like this anywhere else...no one understands how physically and emotionally devastating this is.
Mom to:
DS Jan 06 - HG
Miscarriage @ 12W Nov 07 - HG
DD Oct 08 - managed NVP
DS Sept. 2011 - HG
StephanieH
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Postby Cin » Feb 12, 2011 6:45 pm

Would a phone call from a fellow HGer help? I'd be happy to call if you send along your #via PM.
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Mom to Alex, 12 -- NVP
Isaac, 10 -- NVP
Naomi, 8 -- HG
Edward, 4 -- avoided clinical HG through aggressive pre-emptive treatment and pure luck (aka medicated fluffy)
Cin
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Postby Atsie » Feb 13, 2011 8:33 pm

Hi!!
Sorry to be so late in the game on this one.

I live in Ottawa, I have had the same Dr for all of my pgs. I broke him in. All other HG women that follow in my foot steps have it good.

With my first he tried, but I was extreme but managed.

With my second it came on bad and strong. I asked about Zofran, a PICC and even steroids. He veto'd it all. He said the picc was for cancer etc. That homecare didn't do pg and Zofran was strictly PRN. He told me that when I needed it and fluid to just go to ER. I begged him after being in the ER 4 times in less than 9 days. I was finally admitted for a few days. They sent me a dietican to make a menu with me. I LOVE LOVE LOVE her. She was amazing. I gave her my little list of 3 things that often stayed down, so that was what she sent me, plus extras. Strage trays though, nothing went together! LOL. Then she asked about drinking, I said I can't. She said fine lets get you a PICC. HEAVEN SENT!!!! So she called my Dr and told him.

Third pg. I got my bfp at 4 ish weeks. My referall for a picc was in before I saw him the first time, my list of meds INCLUDING zofran, was called in to the pharmacy.

He is a wonderful Dr and has since told me that he just didn't know. He is a wonderful OB but cases like mine are rare and he was just unaware of the extended treatment options. It took 3 pg and a pile of printed drug info for him to feel comfortable but by the end I got what I wanted when I wanted it!

Keep at them, call, bug them. Bring info, Advocate for yourself. We have all been conditioned to belive that ALL meds are bed for baby. Not true, but even the best Drs are still uncomfortable unless they have done it before. If you get desperate I can give you my Dr info. But its a 2 hour drive. PM me if you need anything.

Erin
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Postby StephanieH » Feb 17, 2011 7:17 pm

Hi Erin - my experience has been the same. I asked about the picc line and my doctor looked at me like I had two heads. I just figured they didn't do picc lines in Canada.

My husband actually works in Ottawa. I'll drive in one day with him -- I'm ready to try anything -- I'm still puking even with the 4 x 4mg Zofran, diclectin and gravol. Last night I was ready to give up -- I'm better today. We think I may have had a touch of gastro too as my daughter started throwing up. Today my son said that mommy's sick must be contagious...LOL

@Cin thank you so much for the offer...I may need to take you up on that. I've never been so down in all my pregnancies...I was really clinging to hope that magically the HG wouldnt come back and then that the Zofran would be my saving grace. I can only imagine how bad it would be if I had no meds.
Mom to:
DS Jan 06 - HG
Miscarriage @ 12W Nov 07 - HG
DD Oct 08 - managed NVP
DS Sept. 2011 - HG
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Postby Maria'sMommy » Apr 11, 2011 5:10 pm

I'm so sorry you're having such a hard time. I know I'm really late to this thread and I just want to tell how brave you are for attempting another pregnancy. The medical system in Quebec is horrible. It's screwed up in ways that us Western Canadians can't even fathom. We lived there for two years and it's the only reason I won't go back.

In your last post you mentioned you're taking zofran (ondansetron) 4 x 4mg/day. I believe the max is actually 4 x 8 mg/day.

I think I remember a previous HG momma posting about extra homecare being available to women having difficult pregnancies in Quebec. It wasn't nursing care, but things like housekeeping, meal prep for the rest of the family and things like that. Maybe your husband could call your local CLSC to find out if this is available to you.
DD 2006 - NVP
DD 2008 - mild/mod HG
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Postby StephanieH » Apr 11, 2011 11:00 pm

Hi Krista,
Thanks for your reply. You're absolutely right about the terrible care and the Zofran. I figured out on my own (with no help or support from my doctor) that taking 8mg at a time was the only way for it to be effective. I still feel miserable but no significant weight loss and no hospitalizations! 

I did call the CLSC and the nurse nearly laughed at me when I asked about the homecare. I'm thinking you have to be referred via a hospital maybe? Too bad - during my worst 5 weeks it would have been a real help.

The system is so bad in the Montreal region right now that a pregnant woman who can't find an OB taking patients has no choice but to be followed by a walk-in clinic. That means a different doctor every time and a 3-5 hour wait for each appointment. Hence the reason I'm sticking with my clueless dinosaur of a doctor who actually wanted to wait for me to be hospitalized before giving me anything stronger than a ginger candy :)

BTW I noticed you're from Duncan. I did a student exchange there when I was 18 and got to know two great families and a big group of students. What a wonderful community. Small world!

Stephanie
Mom to:
DS Jan 06 - HG
Miscarriage @ 12W Nov 07 - HG
DD Oct 08 - managed NVP
DS Sept. 2011 - HG
StephanieH
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Postby saskHG#2 » Apr 13, 2011 12:36 pm

Stephanie - it's the same situation here, therea re very few doctors who are practicing obstetrics and the OB's want to be referred... so if you have no family doctor (which many don't), you go to a walk in clinic and see "whoever" for your prenatal exams. I got caught in that nasty whirlwind when my doctor was on holidays last pregnancy, this time I just didn't see anyone and finally got in to see a midwife half way through. Never been better, but we only have one midwife in the city and she can only take four to six momas per month. It's so ridiculous. Our government is resisting putting funding into midwifery and the OB's are getting their hands on the healthy pregnant women, so when someone like me comes along with HG/needs a referral, it's a minimum three month or more wait for an appointment! I'm glad my OB was three months away, it gave me time to have a midwife who treated my HG better anyway. I've only had one OB actually treat my HG and he was only available for super high risk mommas, now I know that he strichtly works with addictions, gestational diabetics, and severe pre-eclampsia.

Anyway, the situation in Regina is pretty crappy. It's the same all over Saskatchewan. No doctors...crowded units. Even our NICU has been so full that they are sending mothers to other provinces and even to the US to deliver/house their babies.
Rhonda
Tai Lin, June 1 2000 mild HG
Kayah Lily, May 29 2008 mild/mod HG
Jonas Zephyr, June 28, 2011 mild HG
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Postby RalphsMom » Sep 14, 2011 11:11 am

My first two HG pregnancies were in Saskatoon. I had a fairly good doctor with the 1st and she knew about HG but I never got anything stronger than Diclectin and Ranitidine. They might have helped a bit (heartburn wasn't as bad) but I hated being on fluids in the hospital so I withered away at home for the most part. She never offered anything stronger and just gave some food suggestions, as if I could keep anything down.

The 2nd was not really worse HG-wise but I ended up having problems with my gallbladder so I was in hospital for the last 2 months where they actually threatened me with a PICC line because I was losing so much. I was never treated for the HG but I was very alone in that city with no family and an absent husband. I could barely talk most days and advocating for myself never crossed my mind.

This time I'm in a smaller community in Sask so there are no walk-in clinics and no docs accepting patients. The one I was seeing is a total quack and my health has deteriorated drastically under his care so my mom's friend miraculously got me in with her doctor after begging him (and probably bribing him with lots of baking).

He's never dealt with HG and the OB he sent me to (the only one of three in North Battleford who actually passed his last exams) has also never heard of it. He gave me a huge box of free Ensure that his office received as samples and said "take it all, none of my patients have ever needed it". I see him again today but I'm not expecting any help from him either. They all look at me like I have three heads.

I made quite a few trips to the ER this time in the beginning before I refused to never go there again unless I was unconsciously brought in via ambulance. They did try Zofran with me along with quite a few other things that did scary stuff to my body but nothing worked because I was so badly dehydrated. Any of the doctors I saw at the hospital that knew a bit about HG was because they were reading info to me from their Blackberry on some website. Info I had already read a billion times myself.

I've ended up treating myself at home by keeping down as many fluids as I can to stay as hydrated as possible. I also have a little sumthin' sumthin' I use for nausea which also helps stimulate a bit of an appetite so I've managed not to get below 85lbs. Without it, I'm not so sure I'd be here. At the very least I'd be making a permanent home in hospital until this baby is born. No drug a doctor has given me has ever worked as well as one little toke. And it doesn't make my heart rate and blood pressure drop to dangerous levels like the stuff they gave me in the ER.

If I ever do this again (and I'm having serious doubts) I want to be prepared and have a good doc who will treat me aggressively. But I feel like everything I've already gone through has compromised my long term health. My body doesn't feel like it would handle another one. I feel like I'm barely hanging on by a thread most days now.

If I could do all of this over again, I would have demanded the proper care from day 1. Unfortunately, I realized too late how strongly we need to fight for ourselves just to get treated effectively. And there are still too many clueless doctors who think it's just a mental problem.
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Postby Cin » Sep 14, 2011 12:22 pm

Ralph's Mom, please private message me. You are in a dangerous place. You need help.
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Mom to Alex, 12 -- NVP
Isaac, 10 -- NVP
Naomi, 8 -- HG
Edward, 4 -- avoided clinical HG through aggressive pre-emptive treatment and pure luck (aka medicated fluffy)
Cin
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Postby Arias » Sep 14, 2011 9:27 pm

Hi Ralphsmama,
I'm so sorry and angry about the miserable medical treatment you are getting! It's outrageous. Maybe these doctor's should go back to med school!

I'm interested in knowing about how much the "sumthin sumthin" has helped? I've decided to try it in my next pregnancy if I get too dehydrated and sick, which will most likely happen. Did it really stimulate your appetite and ease your nausea? I read that it is one of the only things that can help in HG

Take care!
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Postby RalphsMom » Sep 15, 2011 10:09 am

Thanks Arias :)

(And thank you again Cin!)

I asked my OB yesterday about my horrible gallbladder pain and he said it's my guts getting compressed because I'm so thin so I need to eat more. He said eat lots of McDonalds and fatten up and the pain won't be so bad. This is the one who passed his exams. I agree these doctors need to take a refresher course.

As for my medication, the efficacy varies depending on how I'm feeling and the strain, but it always gives me quick relief and allows me to eat not just one bite of cereal but the entire bowl (and sometimes a second one) and keep it down. There have been times when I was already so sick that it barely made a difference but I'm talking passing out sick.

The difference for me when I use it is night and day. My mom has seen what it does for me and now she makes sure that people leave me alone when she sees I need to medicate. It's the only thing that has allowed me to eat and keep weight on. It doesn't always get rid of the nausea completely but on the really bad days it takes it away enough that I can read a book and try to take my mind off it. I'd say that it stops the vomiting about 70% of the time, maybe more.

The best way would be to eat it so I'll be trying that right away. I've never done that but I'd rather eat a little cookie and have relief for hours rather than one hour. Smoking it is no fun. You only need a tiny bit at a time but the smoke sometimes bothers me. Vaporizing it would be a better option but it doesn't seem to work as well for me and it doesn't work as fast.
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