Diazoxide (Progylcem)

I received this comment on another post. I’m not sure if it’s just a statement of fact (because it is true) or if it’s meant to be a dig at Kaylee but it prompted me to write a post to explain why it is that my oldest is hairy.

Becky wrote:

That’s one hairy child (the older one)! Dang!

Kaylee has a disorder caused by a genetic defect called Hyperinsulinism. Simply put she produces too much Insulin. I thought I had written something up on her disorder before but apparently not. I did write an article about it for Associated Content and it can be viewed at the link below.

Living with a Child Who Has a Medical Disorder
In late October 2006 Kaylee Ott was diagnosed with Hyperinsulinism, which is a genetic disorder, which causes the pancreas to produce too much Insulin, which can lead to low blood glucose levels, which causes seizures, brain damage and sometimes death.
Read More

Kaylee’s blood sugar is maintained with one medication, Diazoxide. Side effects of Diazoxide are:

The main side effects are initially fluid retention (increased swelling of the feet, hands, and face), increased weight gain from excessive water being stored in the body and in small infants, this can cause heart failure due to fluid overload.

A later side effect is the increased growth of hair on the body including not only the head, but also on the face, arms, legs, and back. This is not a sexual type of hair (pubic hair or underarm hair), but rather an increase in the normal body hair found in all infants and children.

Read More On Diazoxide…

We do find Kaylee’s excessive hair growth to be a problem. Mainly because the kids at her school call her dirty. And it’s not to say that they’re being rude, her hair is dark and thus she looks dirty and little ones don’t know to not say things. But Kaylee has recognized that her hair growth isn’t normal. She says it makes her a boy so that bothers her.

So what do we do about it? As recommended by her doctor, because I rarely do anything without clearing it with her doctor, we trim her hair off. We don’t shave her, I find that to be too extreme. We use a woman’s eyebrow trimmer. This is safest in my opinion because it can’t cut her and involves no pain. Plus with a trimmer you don’t have to deal with course hair.

Once a month we trim her hair. It’s been more this summer because hair tends to grow faster in the summer. We have to trim every part of her body. Although the drug information says it should only happen in certain areas, this is not so. It happens all over her body. We’re lucky though since she’s on a low dose of the medication it’s not as bad as it can be. I’ve seen babies on Diazoxide that have hair that is really long and makes them look like they have that disorder where you look like a wolf person.

It’s something we need to do sadly because of her disorder. It’s a part of life though. It’s sad that people comment on it though. What can you do? Luckily Kaylee’s too young to recognize people’s harshness.

On a side note I felt it appropriate to address the comment because well certain folks are going to be angry to see that comment and might reply nastily and I figured Becky or anyone who wants to make comments would like to know why certain folks are going to be nasty about it.

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Houston we have a problem…

I have a problem. It’s not with Annabelle. It’s with Kaylee. She’s up two to three times a night these days. No amount of talking to her and telling her to not do it is helping. It wouldn’t be such an issue if she was coming in when Annabelle was feeding. Then at least I’d not be up five to six times a night. But she doesn’t. She comes in between feedings so I’m getting at most five hours of sleep a night. This is not a huge deal but she can’t continue this.

So I’m debating putting up the baby gate in the hall. This would allow her to go to the bathroom but not get over to our room. But then I worry she’ll sit and scream at the gate similar to what she did this morning, singing a song on how no one was waking up and that she wanted to sleep with us. I don’t like yelling at her but man she just won’t do what I ask. She sleeps with her light on as well.

All these habits have to stop. I’m thinking of stopping everything and doing the gate and forcing her to go back to her old sleeping habits. I just hate when she goes to bed sad. But she knows she’s okay and there is nothing more I can do, at least that I can see.

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So Very Different!

Right after birth some mothers have intense joy and love for their child. I was afraid I’d not have these feelings because with Kaylee I didn’t. I was actually very disconnected from Kaylee until she went into the hospital at 5 months old. I believe it was a bit of PPD. I took care of her, did what needed to be done as a mother, but I wasn’t very connected to her, didn’t feel anything really for her. I think it was because I wasn’t seeing anything from her, she had no real personality and she slept most of the time which I bet didn’t help the situation.

Then she went into the hospital and they started pumping her full of D20 and getting her well and she suddenly was a new kid. The difference was amazing really. So nothing like having your child almost die and also finally seeing her personality to snap you out of it.

I was afraid I’d be the same way with Annabelle. Add on top too those feelings of how can you love another as much as your first. And oddly enough it’s true, your heart makes room. But I did have that joy and love right away with Annabelle. It’s just one of the many things that is different about caring for a healthy child.

You’d think I’d never had a child before. So many questions and worries about what is and isn’t normal, mainly because I have no idea what normal is. I’ve never had a baby who refuses to eat the amount she’s been eating (although perhaps she was going through a growth spurt). Or one that pees and poops like she does. I’ve never had a baby who’s awake so much, even at night. I’ve never had a child who mimics your face expressions or talks back if you talk to her. It’s amazing the difference.

In a way though it’s sad because Kaylee was obviously suffering as an newborn and no one knew. I know she won’t remember any of that and we’re damn lucky she didn’t have any brain damage from the lows, so in the end it’s not something to be sad about.

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New Photographs…

So the pictures of Kaylee holding the baby, she’s actually singing to her because the baby was a bit fussy. Click on the picture to view the rest:

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There’s Nothing to See Here…

I know there is something I wanted to write about but at this moment I can’t remember it and frankly I have nothing else to write about right now. Although I do want to speak on something that happened today.

We went to a camp that my friend was doing. She did it as a child and wanted to do it for her kids so she put it together this summer. We had tons of fun, I like that Kaylee gets to learn about the Bible and get together with friends and so forth.

I’m not sure whether the church that my friend goes to is a bit more conservative than Discovery church or what, but I’m not used to it for sure. They are obviously of the belief that kids can make the decision about whether to be saved. I know there are denominations that believe children need to make this decision sooner rather than later and other parts that believe that until a child can understand the difference between right and wrong that they can’t make the decision to be saved.

I am of the belief that until a child understands right and wrong, they can’t make the decision. I believe this because I see the decision to become a follower of Christ as a decision to also recognize that you are a sinner and repent from those sins and so forth. This is not something I believe a 4 year old can even understand. They don’t understand the concept of repenting at all. I mean my 4 year old hardly understands that taking a toy from a friend hurts them. You can explain it and they have some empathy and understanding but it’s still very limited because the 4 year old is thinking in mainly terms of how does something benefit her, not on how it harms or benefits others.

Kaylee luckily didn’t take them up on their offer cause it would have been a bit embarrassing to stop her. Maybe it’s because I know full well that at this moment she doesn’t fully understand Jesus or why He’s important. She’s learning about Him and is new to the concept of God. She doesn’t at this moment make the distinction that God is real (and I know not everyone who reads this believes this but we do). Right now she puts Jesus up there with Disney princesses. She can’t see Him so she assumes He’s pretend, like Disney princesses. So she obviously can’t give her life over to Jesus when she doesn’t technically believe in Him. I’m hoping that with going to church and so forth she’ll come to believe He is real.

Of course I wouldn’t necessarily have to stop her but I’m not sure I’d be okay with just letting it go. Kaylee enjoyed the time though and had fun so that’s what is important. It got me thinking that it would be nice to have some sort of Vacation Bible School at Discovery. I mean I know why they probably haven’t done one, but I think it would be popular.

On a side note they were raising money for a mission trip and asked the kids to bring in money for them. Kaylee, in true form of total honesty, said, “We don’t have any money!”

Yes Kaylee we don’t have any money to give. We do have change around and I’m gathering change for Sarah’s House which provides help and care to homeless pregnant women. It’s something Discovery is promoting and I liked the cause so I want to help out. I’m all for mission trips and all but I find helping homeless pregnant women a bit more along something I’d want to help with.

Those were my thoughts today.

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