[jmarvin]

in reply to: Neonatal Graves Disease #1071112

Kenleigh’s eyes are often open a bit while she sleeps. The pediatrician thought/thinks this is a preemie thing (the poor girl has just outgrown a heart mummer that was due to being premature, is on reflux meds because of an immature sphincter, has a slight curve at the bottom of her spine — again due to being premature). She seems to be the baby of small percentages — whatever she has a slight percentage of suffering from, she has.

The ophthalmologist I’m seeing is apparently THE GUY to go to for graves patients in the Toronto area. I’m going to ask him about Kenleigh’s eyes at my next visit. Thanks for the tip — I would have never thought twice about it otherwise.

My OB has warned me that if we plan on having any other children we need to meet with a high risk pregnancy team well in advance to talk about options and take precautions. A third was never something we talked about seriously — although it was always on the table. After being in the neonatal ICU and seeing just how bad things can be (there was one baby having open heart surgery at 8 hours old, another’s leg came out from the hip and went sideways, etc), I’m too scared to even think about another baby. I’m done. I can’t take the risk.

Jennifer

[jmarvin]

in reply to: Neonatal Graves Disease #1071110

you’re right. I never thought of that. You always have graves, so the antibodies could still be there. Thanks.

Seriously, thanks for holding my hand through this.

[jmarvin]

in reply to: Neonatal Graves Disease #1071108

Hi Valarie,

My OBGYN told me MacMaster took the cord and placenta to run a battery of tests on — neither of us heard anything after that. My endo tried to run the antibody test a couple of times, but the lab kept running the one for women with hypothyroidism. My levels are dropping again — my meds were cut a bit yesterday. So I’m sure the antibody levels have probably dropped too.

My eyes did get really bad during pregnancy (the double-vision, eye rolling up), but they’re starting to return to normal. I had a CAT scan done two weeks ago, but haven’t seen my ophthalmologist again to get the results.

Kenleigh was back at MacMaster yesterday. The endo she has been seeing is on vacation, so we saw the head of the team. He decided to skip her blood work and take her off the PTU to see what happens. She goes back for blood work on Friday. Fingers crossed.

I must say, I do feel soooo much better after talking to you. ” title=”Smile” /> This board is amazing!

Although, I am concerned about the developmental issues your little ones encountered (speech, etc.). Were there any early developmental milestones that were missed, that I can watch out for?

[jmarvin]

in reply to: Neonatal Graves Disease #1071104

PS: Kenleigh was having her levels checked every 3 days. Then every 10 days. The last check was 2 weeks ago (she goes again tomorrow).

[jmarvin]

in reply to: Neonatal Graves Disease #1071103

we live in a town about 30 mins west of Toronto, called Milton. My Endocrinologist is at Credit Valley Hospital in Mississauga (the city between us and Toronto), Kenleigh is being treated at MacMaster Children’s Hospital in Hamilton.

Being born at 32 weeks gestation, Kenleigh was immediately transferred from our little hospital to MacMaster’s NICU. The medical and support staff we’ve had the pleasure of dealing with has been amazing — both as in patients and out.

She’s gaining weight really well. She was 4 lbs, 5 oz at birth. She was 9 lbs, 4 oz last week.

The thing that scares me — when I was first diagnosed, a colleague and fellow graves patient, mentioned that she sees a naturopath as part of her graves treatment. The naturopath treats her for food sensitivities/allergies that may or may not be linked to her graves. I started seeing one as well and went through a series of allergy tests. The results came back showing some level of sensitivity/allergy to eggs, shellfish, milk and lentils. I was quickly heading into remission after cutting those out — until I got pregnant. I’m breastfeeding Kenleigh and she recently had an apparent allergic reaction to something I ate. She was covered head to toe (literally) in eczema. Her pediatrician thought it may have been caused by soy milk or peanut butter. I’ve cut those out and she hasn’t had another outbreak since. I’m worried that if the food allergy and graves thing is true — and she has food allergies — could this really be a lifetime thing for her.

[jmarvin]

in reply to: Neonatal Graves Disease #1071101

Thank you for your post.

I was diagnosed with graves in Feb. 2009. I became pregnant about 2 months later. My daughter, Kenleigh was born in December (8 weeks early — placental abruption, possibly caused by my graves).

At about 5 or 6 days of age, they decided that my antibodies had passed to her and began treating her with PTU. They’ve tried to take her off PTU a few times over the past 3 months (she’s now 14 weeks old), but her levels jump each time.

The pediatric endocrinology team she sees still believes this is transient; my endocrinologist thinks she has graves and this will be a lifetime thing.

You mentioned that your children were treated for 3 months, and (for lack of a better term) cleared. Did I read that correctly? Exactly how old were they when the PTU treatments ended? (I’m looking for any shred of hope right now).

Thanks,
Jennifer

[jmarvin]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067543

thanks everyone!

[jmarvin]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067541

Sorry, I hope I didn’t confuse you. I know my immune system isn’t compromised. My concern is taking something that acts as a booster for my immune system (like the adjuvant in the H1N1 vaccine). I was told that I even have to stay away from echinacea, because taking something that will kick my immune system into drive could cause problems (make my thyroid levels shoot up, I assume).

I’m just trying to determine whether or not the adjuvant in the vaccine will have a negative affect/act as a catalyst to bring me back to my pre-diagnosis state. Which is further complicated by the fact that I’m pregnant.

[jmarvin]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067539

the scary/frustrating thing is that none of my doctors (GP, endo, OB/GYN) are able to answer any questions on adjuvants. The answer I keep getting is: I have no clue.

[jmarvin]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067536

I saw my naturopath today. She didn’t know enough about adjuvated vaccines to make a comment. She did however add an amino acid combo to my treatment (I’ve been on fish oil, selenium, probiotics, and vitamin D since my graves diagnosis — in combo with tapazole/PTU) to help keep my immune system strong. Fingers crossed .

[jmarvin]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067534

thanks ewmb,

It’s a mess here in Canada too. The un-adjuvanted supply they were making for pregnant women wasn’t manufactured/ready fast enough, so they’ve ordered like 200,000 from Australia.

They opened vaccination clinics in most cities on Thursday or Friday (with the adjuvanted vaccine). The plan was to vaccinate those in the high risk groups (pregnant, young children, those that suffer from chronic illness, etc) first. But pandemonium hit last week when a 13-yer-old boy died, so healthy people jumped the lines and we’ve now pretty much run out of the vaccine supply — in 2 days!

The un-adjuvanted vaccine should arrive from Australia and be distributed through the country next week (from what I hear). And the Canadian-manufactured supply the week after. They’re now ramping production back up on the adjuvanted version and hope to back-fill the short supply in the next few weeks.

Thanks so much for your feedback. It helps to hear from those who are able to give first hand accounts of H1N1.

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