♥ Eliza's Medical Problems

I've had several questions about Eliza and her shots so I thought I'd do a post on Eliza's "issues"! :)

When the twins were born everything was totally normal and we were completely tired & worn out happy with everything! Lane was born first at 10:58pm the good old fashioned way and then Eliza was born at 11:59pm (almost on different days) she decided that she didn't want to come out. Perhaps having all that extra room to stretch and move around was just too much to give up so soon! She decided that she'd turn herself just enough to lodge her shoulder in the birth canal. With much prodding, shoving and turning she still wouldn't budge so she came Cesarean. I was lucky enough to get the best of both worlds. Lane was 7 lbs 4 oz and Eliza was 6 lbs 15 oz. We were able to take them home right away. They were both very healthy little babies. My doctor had tried to induce me the week before and I was in the hospital for 12 hours receiving pitocin and NOTHING happening at all! My doctor said this wasn't normal and that usually it doesn't take much to start labor with twins. He then went on to say that I was "built" to have twins! I'm still not sure if that's a compliment or not! I love being pregnant and never have any problems (thank heavens) but I would never want to go through having twins again. Not the pregnancy part, that was FINE. It's the year and a half up to four year old stage that sucks! I'd take 2 pregnancies any time! :)

When Eliza turned about 5 months we started noticing stuff that a 5 month old shouldn't have. So we took her to our family doctor and he happened to be gone so we ended up with another doctor that was in the same office. He referred us to a pediatrician who referred us to Doernbechers in Portland. We still weren't sure what was going on and all we knew was that she was starting to go through puberty. "WHAT?", were our thoughts, how can our little baby be going through puberty!

The Pediatrician here had us get some labs done to get us started before we headed up to Portland and can I just say that seeing your 5 month old baby getting stabbed by a bunch of retards that seem to have little to no experience taking blood from a baby will really tick you off. We live in a little town so I'm sure that was the problem they just haven't had the experience but it still did not make me happy AT ALL...

In Portland we had more tests done however these guys are WONDERFUL. Eliza only had to be poked once and they didn't root around in her tiny arm searching for a vein either. It was almost pleasant compared to the first one that was taken. The tests were to determine if her brain or ovaries were telling her to go into puberty. They thought it could be a cyst on her ovaries or a tumor in her brain. The tests came back saying it was coming from her brain. So them we had to go through an MRI. For babies they have to sedate them so they won't move and that was really very scary seeing my baby lying on the table. She didn't look "asleep" she looked like she was without life. They told us that she had a hamartoma in her brain!

Here is the official meaning of hamartoma:

A hamartoma is a focal malformation that resembles a neoplasm in the tissue of its origin. This is not a malignant tumor, and it grows at the same rate as the surrounding tissues. It is composed of tissue elements normally found at that site, but which are growing in a disorganized mass. They occur in many different parts of the body and are most often asymptomatic and undetected unless seen on an image taken for another reason. Hamartomas result from an abnormal formation of normal tissue, although the underlying reasons for the abnormality are not fully understood. They grow along with, and at the same rate as, the organ from whose tissue they are made, and, unlike cancerous tumors, only rarely invade or compress surrounding structures significantly.

Hamartomas, while generally benign, can cause problems due to their location. When located on the skin, especially the face or neck, they can be extremely disfiguring, as in the case of a man with a hamartoma the size of a small orange on his eyelid.[1] They may obstruct practically any organ in the body, such as the eye, the colon, etc. They are particularly likely to cause major health issues when located in the hypothalamus, spleen or kidneys.

They took the MRI and we got to talk with the Dr briefly and then told we could go home so that they could do whatever they do. We were called the day after we got home and they wanted us to come right back to talk with the neurologist. I was about 5 months pregnant with Olivia and Joe would have to get out of school AGAIN to go, so I tried to get everything taken care of over the phone but the rude office assistant wouldn't do anything. I tried to tell her that I was pregnant and we JUST got back from up there and and and... She wasn't even in the least bit sympathetic and told me, "Well, all of our patients have to make sacrifices and they all have busy lives." Oh seriously I was so mad. Not all of their patients live SOO far away either. I was so mad. All I wanted to know was if it was of HUGE importance or if I could just see him when we came up next. She said that they NEVER made appointments that weren't necessary! I told her I'd get back to her but wasn't very nice about it basically hanging up on her! I just find out my baby has a tumor in her brain and I'm supposed to put up with her crap as well. errr... I still don't care for her. Last time we went in for an MRI she was gone and can I just tell you HOW happy I was. I was only able to talk to Joe briefly because he had to get back into class so I basically had to make the decision. I called our Pediatrician to talk with him because I wanted to know if this appointment was even necessary or if it could wait until we went back. The secretary I talked to was very nice and understanding. I hadn't really come to terms yet with everything so I was very emotional talking to her. She was great though and just what I needed. The have a couple of kids in their care already that have the same problem. So she had some understanding of what was happening with Eliza. The Dr was on vacation so I wasn't able to find out what I needed to know so we ended up going.

We went and the Dr told us a bunch of stuff but it COULD have waited and that made me really mad because it was and expensive WASTED trip. He said that Eliza's harmartoma was on the hypothalamus and it was definitely causing problems. He told us how big it was and how easy it would be to remove. It is basically just hanging there from a little piece of tissue that is about the size of 3 human hairs. He even said he'd really like to take it out but... he'd let us discuss it for a couple of months to think over his options... Brain surgery or let it go and not worry about it for now! We discussed it and knowing that if seizures did occur they can cause brain damage from lack of oxygen while having them but having brain surgery is a huge risk as well. So many complications can occur. With even the slightest mistake she could become brain damaged or have any sort of complication arise. And they didn't even know if removing the hamartoma would stop the the precocious puberty. We opted not to have surgery UNLESS she started having seizures.

3 months later we were back in Portland for another MRI and an EEG. The EEG went pretty good. Eliza had little electrode all over her little head. Same thing for the MRI although this time we were much smarter since we knew what was going to happen. We took Emma & Lane to my mom's and we brought a stroller for Eliza. When the sedation wears off she is very wobbly and it's really hard to hold her. The last time we had gone in my arms were killing me by the time we were able to leave from holding her and we couldn't put her down because she could get hurt very easily since she wasn't stable. Her coordination was horrible. They found that the tumor hadn't grown at all and so most likely wasn't cancerous (relief).

So she continues to take the Lupron Depot and having MRI's done yearly. About a year ago we started noticing the same kinds of problems so I called our endocrinologist in Portland that very day. They increased her meds from 7.5 mg to 11.25 mg. When it was 7.5mg we were paying 750 dollars a shot which was once a month. When they increased it to 11.25 mg the price increased to 1800 and is now at a whopping 1956 dollars. Insanely expensive but this is the ONLY drug that works for this type of problem. Increasing the meds took care of the problems which was a relief and we haven't had anymore since then. I have found out that many children with this problem never have to have the meds increased. There is a 7 year old here in our town that is still on the 7.5mg. I'm not sure why Eliza's wasn't working right but I'm so grateful that everything is stable again.

Our last appointment was this last summer and I posted about that HERE.

Eliza will be taking this shot until she is puberty age and then we won't have to worry about it anymore, as far as we know. She does really well with the shots. She doesn't enjoy them that's for sure and she knows when it's getting close for it. We know when it's getting close as well because she gets moody and a little extra cranky. Lately she hasn't been showing the signs as much which is nice. But I think it's because she's getting older. The hardest part is that she doesn't know why she's cranky or that she's being cranky yet so there's nothing she can do about it.

I guess that about covers everything. She has one more MRI in about a year and then they think that we won't have to do anymore unless she starts having seizures. We'll still have our appointments with our Endocrinologist once a year as well. Looking at her you wouldn't know that she even has any of these problems. She is very tall for her age but that's normal since Joe & I are tall. She is a little bit taller than Emma was at this age but not much. They try to keep track of this by doing what they call a bone age scan. Which is just an x-ray of her hand that they keep on file and reference the new one to the old one. This helps to make sure that she isn't growing too much. If this did happen they would probably do tests and see if she needs more hormones to suppress the effects!

We're very open about everything so we really don't mind people asking questions! :)