All the kids

goldenrose222003 · #1 (**permalink**) 07-18-2008, 07:47 PM

We had the twins down for a good chunk of this week. We took them to the doctor yesterday for their 15 month checkup (a month late). They got their shots as well.

Justin has some signs of autism, but at the moment it is most appropriate to wait and see how he develops a little longer before we pursue anything. His signs are there, but he is developing despite them. He is 33.5 inches long and 23 pounds 4 ounces. Doing well for the most part.

Kaylee has lost weight again. She was 21 pounds at 12 months, 18 pounds at 13 months, 21 pounds at 14 months and now 19 pounds 5 ounces. She's 31 inches long (I think...close to that). She is not growing well even though she eats constantly. Labs were taken this time to check for metabolic problems, and the results came in today. She has to have more labwork done on Monday because her liver function is abnormal. We were expecting hypoglycemia or a thyroid issue, not another child with a liver problem as that's very rare and comes from the mother, and she's not biologically mine.

Their old pediatrician is in the town where their mother lives. He was not addressing the concerns we have had with the twins (autism, growth) despite the major problems that have been arising, plus if/when they move here they'll need a local dr anyway. One step closer on that count.

As far as the other kids go, the doctor isn't definate yet but suspects Josh, myself, my sister and my nephew, have something called pyruvate dehydrogenase deficiency. I can't find any useful information regarding it. She also thinks that Cassie may have OTC Deficiency, or could be misdiagnosed and actually have lysinuric protein intolerance, which is another very rare disorder I can't find information on. Cassie's treatment would be the same either way at least. And now we are wondering what Kaylee has and if Justin also has something genetically wrong because a lot of metabolic diseases cause symptoms of autism as well.

Seriously, what are the chances? It may sound bad, but I'd really like to know there is someone out there with a family with more stuff wrong than ours this time. I get through things by thinking things could always be worse, but can they? We're all alive at the moment, but for how long?

Yea that was really down, sorry.

psycojenni · #2 (**permalink**) 07-19-2008, 07:04 AM

I am so sorry Amy. That is alot to have on your plate. I hope that you guys willl have some real answers soon and be bale to deal w/ it all and keep moving on. It feels like you guys have been in limbo now for awhile.

moonation · #3 (**permalink**) 07-19-2008, 08:35 AM

I don't know what to say. The chances are slim, but still possible, and it looks like Murphy's law likes you right now.

Noah has asthma (I have it and unfortunately passed it on to poor Noah) but that's all.

Maybe things will get easier as the kids get older?

jenn1976 · #4 (**permalink**) 07-19-2008, 09:45 AM

(((((hugs)))))

Anna_H_66 · #5 (**permalink**) 07-20-2008, 03:07 PM

Hang in there, I am. I go in to see her on the 28th, and hopefully can get some answers then. Dr C said OTC is still possible for all of us, but she really doesn't think so. That one blood test they ran was called serum redox. I looked it up online and it said something about oxidation reduction. Does that help?

goldenrose222003 · #6 (**permalink**) 07-20-2008, 08:23 PM

Nope. They're running more labs on Kaylee tomorrow, too.

rac · #7 (**permalink**) 07-23-2008, 04:55 PM

I don't know what to say either,
you sure do have WAY more than your fair share
Hopefully when you get some clear diagnosis and you know what you're up for, things will improve as you will be able to manage their health as you will have some more knowledge
Don't apologise for feeling 'low' at times - perfectly justified!

Houseplantgirl · #8 (**permalink**) 07-24-2008, 12:50 PM

hugs Amy!
You are so strong and brave and just wonderwoman to be able to deal with it all!
I don't know how you do it.
And yes, it does seem as if your family is getting it ALL, and that is not fair!!
I'm so sorry!
Here for you!
HUGS!!!!