Got some not so great news on Megan

coasterqueen wrote: It isn't absolutely terrible news, but not great either. Megan had her gastro appointment - the follow-up after her colonoscopy/endoscope. Yes, we've had to wait a long time for this appointment, too. While waiting the only comforting thing is so many people have told us that at least she will outgrow her lactase deficiency. WELL....she won't. It will only get worse. I'm not great with medical terminology so pardon me for that, but the doctor said that the usual "number" (can't remember the real term) should be at least 15 and Megan's was an 8. Since she's had symptoms almost since birth (just not found right away ) this means she was born with it. A rare thing, but does happen - a gene mutation is sort of what it is. So he said that this means Megan's symptoms will only worsen over time - in fact could get MUCH worse is how he put it. This isn't life threatening, but can make her very uncomfortable even managing it the best we/she can. So.......at least we know she will deal with this the rest of her life and we will help her be as comfortable with it as possible. My sister and mother are "secondary" lactase deficient, meaning they got it after childhood and have it into adulthood. So they "deal" with it and as long as they know what they can and cannot eat they don't have terrible issues, but sometimes do.

He also said when doing those scopes her bloodwork on her pancreas came back not so good, but was hoping that getting the lactase deficiency in a manageable state, he would then see those numbers go up. So she goes back in 6 months to have more blood work and HOPEFULLY it's working properly. If it's not, it means it's sucking all the nutrients her body really needs and even though she's gaining weight, it's not healthy to her body. (that was how he put it) We were afraid to even ask what it meant if the numbers come back bad again.

We've decided to remain positive about all of this and hope it all turns out just fine. Just because the doc says one thing, doesn't mean that will happen and we are going to take the positive approach. We realize that now we know about the food allergies and lactase deficiency and that she's improved since we've gotten them under control that we should be nothing but happy. No use fretting over something we can't control at this point.

Maddie&EthansMom replied: Karen I'm sorry it wasn't better news, but you and Ryan have the right attitude about things! Keep thinking positive and being the great parents you are for Megan!

coasterqueen replied:
Thanks, Aimee. Hey! Long time no *see*. Glad to *see* you here. Miss you!

cameragirl21 replied: I'm sorry you didn't get better news, Karen, here's hoping that in six months you'll get the news you are looking for.

boyohboyohboy replied: Karen, I think your post sounded like you are taking the right approach, let me also tell you that we had dr's who gave us really bad news, and really bad prognosis, and as it turned out, we learned to work thru it ourselves..dr's are not always right...
Keep the faith.
megan has made great strides so you are on the right track.
have you considered taking her test results to another dr for a second opinion?

Boo&BugsMom replied:

coasterqueen replied:
Thanks. No we haven't considered a second opinion at this point. I guess we'll wait to see the results in 6 months and go from there.

A&A'smommy replied: Karen I'm SO sorry to hear that you didn't get the news you were wanting but I hope that in 6months when you go back that it will be better news!! I also second the second opinion!

Jamison'smama replied: I'm so sorry the news wasn't what you were hoping, you are doing such a great job working through all of this.

<<hugs>>

my2monkeyboys replied: I, too, am sorry the news wasn't better. Hopefully the 6month check will be better.
I'll keep Meagan in my prayers... doctors do not have the final say in these things.

HuskerMom replied:

~Roo'sMama~ replied: Oh Karen, I'm sorry you didn't get better news! Even when it's not life threatening it's hard to know that your child has a health problem that they might have to deal with for the rest of their lives. My sister and brother-in-law have struggled with that since their daughter was diagnosed with diabetes. It might be manageable, but it still just sucks.

Good for you for taking the positive approach though! Maybe in six months you will get better results and it won't be so bad after all. I hope she keeps getting better!!

CantWait replied: Karen I'm so sorry you didn't get good news. I hope that it's easily managed and when Meagan goes back in six months the doctor sees some positive results. Hang in there.

gr33n3y3z replied: I will keep Megan in our prayers
maybe she will out grow it you never know

My2Beauties replied: Oh Karen I'm so sorry you didn't get the results you wanted, I think your approach to it is a good one though. I hope you get the results you want when you go back in 6 months.