Thursday, February 16, 2012

Q&A #233

I'm just curious, do children with Down Syndrome have a higher change of having leukemia? Just wondering and praying you don't go through that again with another precious child!
Yes. One in every 95 children with Down syndrome get Leukemia, for children without Ds, it's one in every 2,000. We too are praying that none of us have to go through this again... especially Kellsey!


Im so sorry that the results were not what you wanted. I cannot remember if she has reflux or not but Sandifer Syndrome looks a lot like seizures but is a response to reflux. My son has it and we really thought he was having seizures at first. Praying that cancer stays away! 
Nope, no reflux. She actually just had an upper GI to check for that and was cleared. 


Just in case Kellsey ever has to go on Thyroid med make sure it's not generic.. I have fought with getting my numbers right and whenever I get generic the numbers go up.. This was confirmed by my endo.. She said thyroid med's is the one that shouldn't have generic.. and I would really check it out. Thyroid problems mask alot of other problems.. It is the cause of alot of problems.. I'm hypo and the numbers shouldn't be any higher than 2-4 depending.. Hope all gets fixed and will be praying for her blood to be good to her.. 
That's good to know. I actually checked her prescription (her endo gave me one and told me not to fill it until she said so... this way I didn't have to drive back to Denver) and it is for Synthroid, but on the bottom it says "Interchange is mandatory unless the practitioner indicates no substitution in accordance with the law." And she didn't say no substitution on there. :(


Have you send the videos to the Neuro. for evaluation? Have you talked with other people in her life that she is with to see if they notice anything? 
Yes, Frank has seen it of course and they've seen it at school and couple friends have seen it as well. It's definitely not something that can be missed. 


What does it mean to be "pre-leukemic"? 
That she is at higher risk of developing leukemia because of the way her blood is looking. That's why they are going to test every 3 months or I'm supposed to bring her in immediately if she shows any signs... the only problem with that is she NEVER seems to present normally. 


Zoey was born with TMD, I think you know that, and we checked her blood every 3 months up until the flip to AML. in all that time, I never heard the term "pre-leukemia", just the fact that since she was born with a transient form of leukemia, that her chance was higher of developing it. Make sure, and I know you know this, that you love and trust this new oncologist. 
I DO trust her oncologist, however, I sent an email to Kennedy's oncologist from Vandy a few days ago. ;) Never hurts to have a second opinion, right? I HAVE heard the term "pre-leukemia" before, but it was when Kennedy was diagnosed. After her bone marrow biopsy they said she had "myelodysplasia" which is a type of "pre-leukemia", but she was so close to the border they ended up just putting AML on her records. I guess 20% cancer cells is the qualifying "leukemia" status and hers was 19%. They ended up just treating her for AML because they said a week or so later and she definitely would have been over the 20%. 


 I would love to know more about pre leukemic and the sleeping medicine. We give Tommy melatonin but its not helping.
They started Kellsey on Clonidine. It's actually a blood pressure medication, but for some reason it also is supposed to help you sleep... which is good if you WANT to sleep, but I think if I were taking it for blood pressure issues, I might not be so happy about that! haha Anyway, so far it hasn't really helped Kellsey. I was hoping it would. She's on a REALLY low dose though, so I need to call and see if we can try a little more. 


Have Frank send that to you so you can go around shooting all the smoke alarms! lol 
HA! Now THERE'S a thought! ;) 


This is such a cool idea. Doesn't it make you sad to see how much the older kids have grown? I don't even know them and it makes me sad. lol 
It does!! And Kassidy pointed out that this was about the age where she stopped letting me dress her cute and she moved on to jeans and t-shirts! haha And she's right. Poor Kennedy will not like "shopping" in Kassidy's old clothes bins much longer! 


Love Keeghan's shirt!!! Where did you get it? 
I got it at Target the other day, I love it too! :) 


Is kass growing her hair out? 
I'm not sure... I really hope so because I like it better long, but she changes her mind every 5 minutes! haha I told her she needs to be REALLY sure before she cuts it again. 


Do you curl Kennedy's bangs? They look so much cuter straight 
I do. She loves them curled. ;)


HAHA, I have boys. No opinion. It's a girl thing, isn't it? To play with it. You'll go back and forth until she states her opinion and goes back and forth! 
For sure!! LOL I hope that Kennedy always likes her bangs because she inherited my big forehead (sorry, Kenn! LOL). I loved Kass with bangs too, but she decided to start growing them out around age 7. We'll see what Kellsey ends up deciding. Of course my boys are very particular about their hair too... Kameron likes his short and buzzed and Keeghan hates getting his cut. He wants it long and "shaggy". HA! 


On a totally separate note...tell us about the pillows (?) behind Kellsey in the picture with the kids' pictures on them. Where did you get them, etc. From what I can see they look so cute!
Those are from cafepress. I made them on my store quite awhile ago... I think those pics were done in 2007. I love them!! They are great quality and the pics on them turned out great. :)

If she loses the bangs, won't Kennedy want to grow hers out too? She'll be the only girl with then.
LOL No. Kennedy has a mind of her own. She knows what she wants when she wants it... She's not easily influenced by anyone - including me! ;)

Does she like to wear clips? My 4 year-old granddaughter doesn't have bangs and is always taking out her bows so her hair is often in her face....and Gramma wants to see that sweet face. :)
She doesn't mind the clips. She keeps them in pretty well actually. Her hair is very fine so I just have to find the right kind that won't slip out.

3 comments :

Dame said...

Renee, you can specify that you WILL NOT accept a generic for the synthroid. I did this for many years. I don't know about your health insurance - if you do that they may refuse to cover it... but synthroid honestly is so cheap many insurances don't technically cover it anyway.

It is definitely true that generics when it comes to thyroid medications can be pretty different. (Some people can't take the synthetics.) The different formulations and base components can have adverse effects too. (Like synthroid massively upset my stomach to the point where I was vomiting every day for years, but the generic levoxyl just gave me nausea is I took it on an empty stomach.)

Stupidly complicated, but if you request no generics the pharmacy should have no problem given you the synthroid. The script is written out for this - you are within your legal rights to the medication! (If her doctor wrote levothyroxine this would be a different story.) Pharmacy's just automatically have to give you the cheapest medication available (ie the generic.) The box is more so for the times where you have to take a certain brand name because a generic might have other interactions with medications that the original formulation doesn't.

Adam said...

I totally love how Kenn has a style of her own. She looks like such a fun kid. :) I've said it before, that reading your blog and looking at your girls makes me not afraid of Down syndrome. I forget Kennedy even has it!

Lynn said...

When it comes to generic meds it can be something as simple as them adding a color to it that can really throw things for a loop. I've had friends think they were going nuts because the med stopped working and then they found out someone had substituted a generic. The main drug itself might be identical but I don't think there's any control over additives.
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