[Ski]

#1071095

Let me just say WOW and THANK YOU for sharing your story! You have definitely been one of the rare cases, over and over, haven’t you??

My heart goes out to you and Ava and Ella for all you’ve been through, and in such a short time!

I just want to clarify one thing so I understand completely ~ are you saying that your babies were born hyperthyroid, but only because YOUR antibodies crossed into their bloodstream and made them that way? In other words, after they are born, they are treated just for a short period of time, until your antibodies are no longer affecting them and their own thyroid function returns to normal? Or do they actually have lifelong Graves’ Disease of their own?

I see that your 11-year-old is currently an active Graves’ patient (and it’s lucky you already know the ropes!), but I’m curious about the situation with the infants.

It is great to get information like this here, one of our most common questions is "what happens if I get pregnant?" I realize your story is an extreme one, and doesn’t happen often, but it is so important to get these stories so we have some context to use for answering the question. I really appreciate the time you have spent to share the story.

Please let us know how the twins are doing, I want to give you and both of them an e-cuddle! And don’t leave out the rest of your kids, even the healthy ones ” title=”Wink” /> ~ cuddles all around!

[bradybunch6x1]

#1019354

Hello all,
I am new to this site, and wanted to share a bit about myself and my family. I have Graves disease, and have three children that were born with Neonatal Graves disease. I know that it is rare, and have learned alot about Graves disease threw my journey as well as my childrens. I also have a child that is now 11 that has Graves disease, although he is not on medications at this time. I had my thyroid ablated 7 years ago. I was under the impression that I didn’t have Graves disease after that(oh I know now that was wrong). I already had two children at the time I was dignoised, and they seemed fine. I then got pregnant with another child several years after being dignoised. She was born a month early due to high heart rate. The sent her to a bigger hospital than were I was at, due to the fact that they weren’t equiped to deal with a very ill child. She was there for 14 days before someone thought about checking her thyroid(my docs at the other hospital failed to pass along my medical history). When the peds doc told me she would be testing her thyroid and started to tell me what that entailed I replied, I know I have Graves disease. She was shocked to find that after the tests were back my daughter had it too, although it is the type that passed due to my elavated antibodies, it took 3 months. So I started doing alot of research and found out alot of things I hadn’t prior to the birth of our daughter. I wasn’t planning on having any more children, but that all changed a few years later, when I had a accidental pregnancy. I was pregnant with TWINS! I had found a great doctor that would care for me, and new my medical history, and the struggle I had had. She listened to everything I ever said and took it into consideration. She had treated me for my Thyroid eye disease that accured after my daughter was born, when my eye specialist left me hanging high and dry. She then took notice that I also had some skin manafestation of the Graves disease. She tried to help with that as well. I tought her alot, and she me. Well she cared for me during my last pregnancy which was 14 months ago, along with the help of a Fetal Maternal Specialist. There were ultrasounds every other week, until I was 18 weeks, and then I was having them every week, because the doctors had found that they twins had goiters,and could see that they were hyperactive. Threw all the research my doctors and myself had done, none of us had heard of Neonatal Graves being found in a fetus that early. Mind you twins. They were also checking thyroid levels every other week until that point. At which time we knew my TSI were elevated. Not alot but above the average. So during this time I ended up with a TSI over 800 with the normal being >130. After they found the evelvated TSI as well as the goiters we had to have fetal blood sampling done, but they could only get to one baby. It showed that her thyroid levels at that time were more than 6 times the normal. So I was started on PTU, all the while taking my Armour thyroid meds for me. The PTU worked for a short time, enough to get me to 32weeks 6days, and then the babies heart rates started to get elevated, and on of the twins stopped growing. So it was time to take the twins. They were both born with Neonatal Graves disease, did well with treatment on there PTU and betablocker, but both of them were very sensative to the PTU, so alot smaller dose for them than most newborns. There names are Ava and Ella. Ava was the one that stopped growing, and has really had the worst complications from the Graves disease. Ella’s thyroid levels were always higher than Ava’s, Ella also had a thyroid storm in the hospital, but has had less complications than Ava. Then twins were on meds for about 3 months, same as my first child. This story has really yet to play out, as it seems we have all the woderful doctors trying to guess at what the Graves has actually affected on the twins. So there’s the short version…Haha. Just wanted to share it.
Valarie

[mamabear]

#1071096

I truly think this post should be a sticky. This is so important for so many people and it is huge for these children. I’ll post a different time but for now I give you this…

This image is artwork by Gary B. Clark.

[bradybunch6x1]

#1071097

Hello again,
I tried to respond to your responses the other day, but my server went down and was down until this afternoon. I wanted to answer Ski’s question about the antibodies, yes, you are right the antibodies once passed out of the babies blood streams cause there thyroid levels to go back to normal. Although they don’t have Graves antibodies, they still can suffer from the effects of the Graves disease, as our children are. All three girls have large eyes, and have been dignoised with lid lag and lid retraction. Ava has developed Craniosysnostosis from the Graves disease, as well as having developmental delays. She also is very small, as is Ella. This disease may seem like not such a big deal, but in an infant it can cause death if not properly dignoised and treated. It’s important to make sure that while pregnant that you have your TSI check at the beginning and middle and towards the end to make sure that the antibodies are not really elevated.
Thanks,
Valarie

[mamabear]

#1071098

What valuable information you have and are giving us.

May God keep your children safe and help give you the strength to continue to educate others and care for your own children through out the years.

[npatterson]

#1071099

Dear Valerie,

That is a truly awesome post. One of our trained Support Group leaders, in North Carolina, had a baby under the same circumstances. If you will contact me at "nancyngdf@bellsouth.net", I will try to put the two of you in touch with each other. My guess is that neither of you have ever talked to someone else in the same situation. The doctors ignored her Graves’, too.

I can relate to the twins, part. I didn’t have Graves’ at the time, but twins are twins–at least in the physical "space" they occupy–before and after birth. They are grown, and don’t have Graves’.

Keep us posted.

[npatterson]

#1071100

Valerie,

I just talked to Anna, and she wants to talk to you! I kinow you sent me an e-mail, but I can’t find it. "nancyngdf@bellsouth.net" and I will connect the two of you. She even knows another woman who is pregnant, due in two weeks, and her antibodies are high.

[jmarvin]

#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

[bradybunch6x1]

#1071102

Ya do have a shred of hope! Many times it can be as long as 6 months, sometimes longer depending on the amount of antibodies that are in there system. For most of them it was around three months, I do believe Faith our oldest daughters was a bit longer than that something like 5 months I think. In most written liturature for this disease it is said to be about 6 months. So you have hope. As for the jumps in thyroid levels this too is also common. Our daughters were up and down all over the place. We were having to have blood drawn every week, so that they could adjust there PTU. When we got to the end of it, we actually were really only giving a drop! Even that little of an amount changes there levels. I think that you should be thinking about what the Peds Endo is saying as it is more common for them to know what is going on with the little one than our Endos that is why they speacialize in the treatment of Pediatrics. Also it is even more uncommon for a baby to be born with Graves that isn’t transient than for it to be transient, so the likely hood of that being the case is alot slimmer. I think you will find that sometimes in the care of our little ones we tend to think that the Endo that treated us isn’t the best choice for our children, as they are alot more complicated than us adults. Give it time your Kenleigh will surprise you and she will also teach you alot about this disease. It’s so different for them.
If you do not mind, could you tell me were your seeing these doctors? As I am often interested in finding out where the doctors are that are treating little ones with Graves.
Valarie
Oh P.S. I had to actually look at Faiths medical records to make sure I was right about it being that long, and I see now that it was about 4 and a half months, not the 3 I mentioned earlier or the 5 I mentioned in this. I guess I am not really good with my memory about the length it was, but medical records were here so I looked. I do however remember more than one doctor telling me it could be as long as 6 months, and even had a doctor tell me that the TSH could stay suppressed for our twins for as long as they lived…..found that strange, but for our children it was not the case.

[jmarvin]

#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]

#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).

[Kimberly]

#1071105

jmarvin – I don’t have children, but I have heard of cases where kids “outgrew” early allergies. However, I wouldn’t introduce a suspect food back into your baby’s diet without proper medical supervision.

PTU can occasionally cause hives as a side effect, but since the problem cleared up when you eliminated soy and peanut butter, hopefully the food was the culprit.

I don’t know that scientists fully understand the link between food allergies and autoimmunity. We *do* know that in both cases, the immune system misfires and launches an all-out attack when it shouldn’t. The attack is either against a harmless substance (food allergies) or our own healthy tissue (autoimmune disease).

Not all docs agree, though, over whether “sensitivities” or “delayed” allergies really have a part to play in developing or healing autoimmune conditions. I’ve done some “sensitivity” testing myself, and my conclusion is that if cutting out certain foods makes you (and your baby!) *feel* better — and is making your labs move in the right direction, then go for it. My only caution would be to talk to a doctor about finding a way to replace any nutrients that you might be missing out on.

[bradybunch6x1]

#1071106

I just wanted to say that Ava gained weight during her early development, but it started to drop off. Kenleigh was pretty good sized for being 32 weeks, as Faith was. She didn’t have a hard time gaining. She did well. I can say the only thing that it has affected in her is speech. It was slow to start, but once it did look out. She didn’t have any Occupational therapy, or physical therapy. She did do speech for about 3 months right before she turned three. She does have some hearing issues, but we don’t know if that is related to the Graves, who knows with that one(it would be hard to tell). Other than that man she was a fighter. I do remember she and her sisters would get this funny looking almost like rash when they were little. It almosted appeared to be bite marks or welped bites. It turned out that they couldn’t tollerate the heat, the doctor did say it was something that was caused from the Graves. Heat intollerence is a common symptom, so for them it was kinda like a rash. They stopped dressing them in the NICU and poof it was gone. I recall that this happened often at home, and as soon as the babies had there clothes off for a period of hours it would go away.
As for the food allergies, peanut butter is something most Peds docs warn us against until they are older, so I would think that you eatting it could cause something of this nature, but that doesn’t always mean much. Just keep that thought in your head when she gets older, and keep a good eye on her if you do introduce the peanut butter. I would even ask the doctor before thinking about it later, never know they may want to check her for that allergy since it is often a very serious reaction if they are allergic. I have a relative that is allergic to corn, nuts, and tree pollen, as well as grass, and soy. She just found out this year, and she is 15, they told her if she didn’t take in any of these, then she may outgrow them. So I too also believe that you can out grow them.
Is Kenleigh’s heart rate high? Do they have her on beta blockers? Just curious.

Well I better go for now.
Valarie

[bradybunch6x1]

#1071107

Hi again,
I just thought about this, and it may or maynot help your doctors answer a question your having. I remembered the doctors did testing on the blood from the cord after our twins were born, this may help answer if your daughter has the transiant type of Graves or not. I don’t know if your doctors did do this, but they may have. Sometimes they don’t. Another thing they could check would be your antibodies now, to see if they are still elevated. See if your antibodies are elevated then the babies would also be if it is transiant, if yours were not(from the cord blood) and hers are then you have an answer as to what is going on. Although after having had the baby yours may not be that elevated. So this may or may not answer anything, but if they have already done these tests what would it hurt.
Let me explain a bit more because it would be possiable to have elevated antibodies and her also have them. But if she had them, and you didn’t then that would be an answer. Some doctors aren’t willing to do these tests(because they are not approved for clinical treatment), so you may of not had them. Also if you have your antibodies checked now, it may not answer the question because when your pregnant the antibodies rise, and then after birth they fall, for me though I had my antibodies checked at my 6 week check up and they were still very elevated(at least after Faith was born).
So it may answer something, but it may not. If these tests weren’t done by now, you may just have to take the wait and see approach.
Just something I remembered about what happened to me.
Valarie
Also I wanted to mention that while I was pregnant with Faith(our 4 year old) I started into a hot phase for the eye disease part of this, so if your eyes do start to bother you I would be for sure running to a doctor. Mine at first was alot of watering and burning. It got worse from there. So keep an eye on your eye health.

[jmarvin]

#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?

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