[bradybunch6x1]

#1071109

I think the biggest thing they missed was lack of chatter. None of them really made alot of noise. Ava and Ella at a month old were rolling over, and crying like they should. Ava couldn’t hold her bottle on her own until she was about 4 months(a 2 oz nursette). I think she was lacking hand eye corndianation. Ava could sit up, but couldn’t get herself into the postion like she should. You might want to actually check into early intervention in your state, since Kenleigh was born with this disease, they can monitor her for any developmental delays, and if it starts to appear they can come into your home and do therapy at no cost to you. Neonatal Graves puts babies at a higher risk for having developmental delays. Not always the case, but good to know. Neonatal Graves automatically quilifies Kenleigh for monitoring threw the Early Intervention, not to include the premature birth.

Also the big thing I want to warn you about that if your doctors haven’t told you about is the CT and/or MRI of the head. They wouldn’t allow our twins to leave the hospital without one, so if you haven’t had one don’t be scared if the doctors order one soon. It is to make sure that she doesn’t have Craniosynostosis(premature closing of the sutures in the skull). It is sometimes found in infants that have Neonatal Graves. It isn’t always though. Faith had a CT of her brain when she was younger also, but didn’t have Cranio. It’s good practice for the doctor to do this if for any reason it seems there head is of a miss shape. Also since Kenleigh was born premature a bit it is good for you to know to look out for this, since it may not really show until a bit later. Keep your eyes open. It’s better to be prepared for it all.

I hope that Kenleigh does well off the PTU. If the blood samples were done and sent off, then it could be several weeks, but if your doc doesn’t have them and after having Kenleighs off the PTU and she has to go back on, it might be the best place to look for an answer.

Also the part about the CT, I had one, was put on steriods(IMO I wouldn’t do that). Then given radiation of the orbits. That wasn’t to bad, but I also had developed some pressure in my eyes. The CT showed that the muscals around my eyes were affected, nothing to do except wait for the disease to go into the cold phase. So that is where I am at now.

As for the meds being cut, you can not say that your antibodies are lower, that is not always the case. Antibodies have nothing to do with our meds really. I can say this because my levels are normal, and have been for awhile, but I also had my thyroid ablated. but I still struggle with the disease, which is also indication that my antibodies are elevated.
Anyway here is praying for you and yours, I hope that Kenleigh does great without the PTU.
Keep us updated on you and her.
Valarie

[jmarvin]

#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.

[bradybunch6x1]

#1071111

Your very welcome, that is why I am on this board. I know how hard it is when you have a newborn that is sick, and you have questions that seems like you won’t get answered. I have been there and done that and it’s not easy. I am still after having 3 born with this trying to figure out some of it.
I just thought of something that may sound a bit ahead of its time but figured I would mention it so as you have it. Now that you have had a child born with Neonatal Graves, you need to be aware that you are more abt to have another child with this. I know that is scary, but as long as you are aware, then you can take the proper steps in the future to have a healther pregnancy. It would best serve you to have a Maternal Fetal Specialist in the future. One that has experience in doing things like fetal blood cord sampling, and one that is very skilled at doing Ultra Sounds. Also one that knows a bit about pregnancy levels of the thyroid. So if you are intending on having another child it would be best to set these doctors up in advance than wait until the last minute. You can have a healthy baby, but the steps of getting a doctor with this kind of specialty is best so that they can make sure it is a healthy pregnancy. Also please if you do see a different doctor for any pregnancy that they know from the get go that you have had a child with Neonatal Graves. Also would be good if you change your Endo that the Endo is aware if you become pregnant again that you have had a child with Neonatal Graves, that way they can check the thyroid levels, as well as the antibodies early on in the pregnancy as well as in the second trimester.
If you come across anything that seems scary, or you think you need to ask, or even just want to talk I am here.
Oh you will find this of some interest. Our daughters(all 3)have seen an eye specialist. They checked Ella, and she appeared to have a slight case of lid retraction, and Ava and Ella both have lid retraction and lid lag. So it was often that we would walk in on them when they were sleeping with there eyes open. They haven’t had any serious issues with this, as it seems they have really grown into the eyes now.
So anytime just post or ask I will try my best to answer with what I have run across or even just have a person to vent to I am here.
Valarie

[jmarvin]

#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

[bradybunch6x1]

#1071113

I know what you mean as Ava is the same about the small percentages. Although most of the time she tends to show us what a fighter she is when it comes to that as well. Ava and Ella both also suffered from reflux, and were on meds, they soon out grew it. Ella’s was alot worse than Ava’s though, she appeared to be a fountain after eating, it was awefull. After about 4 months it was better.
The twins also because they were born premature would forget to breath when they were eating, it was scary, and we had to stop feeding them to let them breath and start back up. It was not something I want to relive again. The feeling that your baby has stopped breathing makes your heart race everytime.
Your Opth, should be able to answer some question concerning Kenleighs eyes, as that is how we started for Faith. Then for the twins we found a great doctor that was able to see both girls. He was awesome. He did refer us to a specialist that had seen children with these issues, but only for Ava, since her eyes were not tracking.
That is also something that ALL three girls seem to have a very small problem with. Faith failed that part of her eye screening to get into Preschool. So now we are going to have to take her and Ava into the Peds Opth here.
We just moved here a year ago from Idaho, so finding doctors isn’t very easy, as the largest hospital from here is 4 hours away.
We did have an awesome doctor that was a Peds Endo from Oragon that we saw he specialised in thyroid research and disease(not alot of them out there). We were also sent to see doctors of Genetics as they thought that Ava might have some type of dwarfism, but it turns out that every test they have run has been negative. I did however have a doctor from the dysplasia registery say it could be caused by a thyroid disorder(haha easy way out of a real answer). It was said and then put to the side. I don’t know if you have seen the link that I posted about Neonatal Graves, but it is really good, and tells you alot about it all. If you haven’t seen it, let me know and I will post it to you so you can read it.

Valarie

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