Wednesday, August 8, 2012

Medical Woes No more

I have been very vocal about our medical woes.  It has been like pulling teeth for the most part.  If I am honest it has been a painful thorn in my rear ever since we moved to SoCal.  I hate the feeling that I am somehow failing my children by not stumbling across the right doctors.  And so imagine my surprise when not just one, but two things went awesome this week.  Let me share.  Dennis and Nolan need pretty extensive dental work but our insurance doesn't cover general anesthesia.  Both would have been upwards of $1300 each so I took them to a specialized dental school at the same hospital we have had some of the boys' surgeries at.  Not only would their costs be much lower for us, but they told me about a program that is funded by the tobacco tax in this county that both boys qualify for which would pay all of our co-pays and general anesthesia up till the boys' sixth birthday.  With time running out because of Dennis' birthday next month I wanted to get this ball rolling.  Of course there was a snag when the pre-anesthesia doctor gave me a detailed letter requesting all kinds of health info on Dennis.  Our general doctor did not have enough records to answer all the questions so after a week, I decided to take things in my own hands.  I called the dentistry team back and told them that if they could not work from the info they have from Dennis' prior surgeries at their hospital or cranial facial clinic then I would have to seriously consider going to someone else.  I wasn't suggesting rocket science.  That got their attention and voila-- two hours later Dennis has his dental surgery scheduled for the end of this week.  Praise the Lord for that and for being told about the program that will cover the all the costs!  

The other good news happened at the Spina Bifida Clinic today.  Alex is in excellent health ( I already knew that) and he will be going to a time released Ditropan pill that he will take once a day instead of the liquid that he is currently taking 3 times a day.  That will make the school nurse very happy.  Though this is wonderful news, there is better news still.  As Alex saw neurology, urology, and then orthotics, he finally ended with seeing the pediatrician.  The pediatrician both him and Dennis have seen for the last two years.  The pediatrician that I have always found helpful and nice.  The pediatrician with the great bedside manner.  We talked about Ritalin for Alex to help with concentration (I"ll save that for another post) but he said that he would rather Alex's regular pediatrician prescribe it since there are usually many adjustments to be made with the dosage.  That is when I confessed that I wasn't very happy with any of our current primary providers and how it would be so much easier if he could just prescribe it or better yet-- be all of my four younger boys' pediatrician.  "I can!  I am very busy, but I will not turn away a child that needs to be seen!"


Why didn't I think to ask this before?
Oh, it doesn't matter because I am on cloud 9 that the boys will finally have a pediatrician that I feel absolutely confident in.  He specializes in helping children with special needs.  I told him about Oliver's reflux (which is doing a little better all on its own now) and how he was put on Regalan but I discontinued it already after learning about the side effects and how the other pediatrician still hasn't followed through with the barium swallow and he said that a barium swallow will show nothing new.   He suggested prevacid and to wait and see a month or two if Oliver's reflux improves on its own like it looks to be doing now.

Needless to say I walked out of that 2 1/2 hour appointment smiling from ear to ear.  The time was well worth it. :)


  1. Glad things are looking up for you guys!

  2. What a blessing! You know, now that I think of it, Ilse has reflux because of her low muscle tone. With Oliver not getting much movement practice etc. in the orphanage, it wouldn't be any shock if his internal muscles were just lazy. As they get stronger it would follow that his reflux gets better.

  3. yay! So nice when you find a dr who actually listens and cares about the child.

  4. I'm so glad you are thinking about trying meds. I know SO many kids who do really well on them. DOn't be afraid to ask the doctor to alter to dose or try a new med. One of the little guys I work with said "I like my meds. They make me feel like ME! and then I can actually listen!"

    Plus a lot of kids are spending SO much cognitive energy on trying to attend to a task, that they have none left over for their actual school work/game/conversation!

  5. So HAPPY for you!!!!!!!! I am so glad you are holding off on the barium study..i looked back I i saw I did indeed comment on that to you the very same thing that the swallow usually changes nothing is annoying. I walk around with a towel. I put away the bibs as they were just in the way..burp cloths were ok...but kitchen towels work marvelous. when it gets on floor I wipe up and toss in laundry..and grab another we have set on the granite in kitchen...

    It WILL get better. It's hard for me to imagine it with our 5 month old...but it has always gotten better with ll our boys( none have DS) just happens...


  6. My son is on prevacid and it works well for him. He has been on it since he was a month old. He is 5 now ;) hope things continue to go well for you guys!

  7. Ah, yes, a smart and wise doctor who you connect with and who is liked by the kids is priceless.

    I just changed dr's for my shoulder problems which had been going on for several years. The first visit- dr. solved one problem. 2nd visit- dr. dx'ed some thing else and dr. said I need botox injections in my shoulder/neck, which led me to seek other treatment. 2 months later, those are complete, and I am like a new person. Still more to go, but most all the old, other pain is going!! I can't stop grinning! Question: why did I wait so long?

  8. I don't comment often, but wondered if you had looked into the side effects of Ditropan much? I have another friend who has a little boy with SB and they were using Ditropan. It was a significant mood-altering drug for him. Once they switched to another med, almost all behavior problems disappeared!

  9. Awesome!!! for you and for all of the boys!!! May God continue to be with you. . .

  10. So happy to hear you found a good Dr. Finding the right Dr. can be such a pain! I'm also happy to hear that the finances are now covered. God bless!


I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.