Friday, August 3, 2012

A Full Friday

Sveta and Annalyn both just earned I-Pods for their 8th grade graduation.  Grandpa and Grandma got them for the girls just like they have gotten all the other kids who graduated 8th grade.  Sveta just came up to me a minute ago and said, "Look Mom. I can set reminders on it like to pick up poop in the morning."  She sure makes me chuckle.  She got the I-Pod for music and games and to type reminders to herself. :)
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At the suggestion of many of you,  I requested to get a referral to a cardiologist for Oliver.  I also asked for blood work to be done to make sure everything looked good.  Ever since our first visit with the pediatrician I have called to follow up every two days about the barium swallow.  Needless to say, this office does not have their stuff together.  Yesterday while on the phone with them again, they asked me to come in since I was adamant about getting paperwork in my hands and having them address Oliver's reflux immediately.  I brought him right in and we saw a neonatologist who happened to be there.  Finally I thought Oliver was in great hands.  I told her all of my concerns with his heart and something being missed and how I wanted a cardiologist to see him and after listening to his heart for a long time, she reassured me that his heart was great.  I still pushed as politely as I could since we have a PPO and don't need insurance authorization until she flat out told me that she would not refer us.  I asked about the bloodwork and about seeing a geneticist and she told me that both were not necessary given his age and how healthy he looks.  She wanted to poo-poo his reflux too until he threw up all over her a few times in which I told her that if she didn't do something about it, I would go elsewhere.   She prescribed Regalan and told me I should get a barium swallow. (??) (Did she not read his chart??)  I told her that I was trying to get one and the problems I was having with the office and that I needed a prescription and for them to fax it over to the hospital.  Well if writing UGI for reflux on a prescription pad counts then she did her job.  But she told me countless time that I didn't need them to fax anything.  Good thing I was there to remind them to weigh Oliver before I left only to find that he has lost an ounce since three weeks ago.  I called this morning to schedule the test only to find that the doctor's office had still  not faxed anything over.  I was livid but remained calm while the scheduler called the office while I was on hold.  Fast forward to this evening and the scheduler called me back to say that the office has still not faxed them the prescription and so they can't schedule the barium swallow.  I also found out when I got the Regalan prescription that the other doctor wrote up the prescription for the Zantac every 10 days instead of 30 days even though she approved Oliver to be on it for two months.  And here I thought I must have measured wrong since I ran out a few days ago.  Both are supposed to be be given three times a day for two months but one I can get once a month and the other I need to go and get 3 times a month because I have nothing better to do but run to the pharmacy and spend three times as much for three separate prescriptions.  Big sigh.  Of course I asked the pharmacist to call and request the change but the doctor office didn't correct it by the end of today.  It is okay to think and feel this office is totally inept?   Actually please don't answer that.  I already know the answer but am trying to give them a few more days to make things right.
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Today I finally went to the Social Security Office to change Galina's name on her card.  I took her and William.  Once there I was reminded why I had put off doing it for so long.  Thankfully we were out of there in half hour.  To do a little something special with them, we went to Wendy's for lunch.  Of course William loved it the best.
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Yesterday I went to buy the boys' bus passes and since the skateboard park is close by, William begged me to drop him and a few of the kids off to skate.  I was very hesitant to leave them without adult supervision but after thinking about it for a little while, I asked Caleb to go with them.  I agreed to drop them off only for the twenty minutes it would take for me to run and get the passes.  They were still very excited.

I think I have hit a new milestone in parenting.  I can't stop the kids from growing up.
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We just watched this movie.  It was fantastic.  At the beginning Annalyn thought it was very predictable.  Well it's not.
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I finally got around to posting the rest of our pictures from Ukraine.  You can see them here.

17 comments:

  1. I'm sorry you had to deal with a doctor like that. Makes you wonder why some people become doctors. I have a lot of success choosing doctors in clinics/hospitals by looking at their customer reviews on Yelp.com. I can't remember if you have said if you have tried that or not, so I thought I'd suggest it anyway!

    Do you live near any "Center for research and treatment of Down Syndrome" clinics? Or by any of these down syndrom clinics in CA? http://www.ds-health.com/clinics.htm

    I am shocked she flat out refused to refer you...it doesn't cost her any money or anything!

    Things can only go up from here!
    Sarah

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  2. It's so hard to let te kids out of our site these days. . .my sister calls me a helicopter mom. I don't mean to be, but Aidan is only six! So much can happen in the blink of an eye! I think you are doing great an the fact that you ahve older and really responsible children to help out is a wonderful asset you should enjoy. God Bless!

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  3. Hi Christine,

    I was also going to suggest accessing your nearest Children's Hospital which will likely have a Down Syndrome clinic. Care will be coordinated and knowledgeable about the quirks of DS kids. Even if it is a fair distance it will be well worth it for his care on all levels. As for genetics, there is little point, There is no doubt Oliver has DS and unless you are concerned there is another genetic disorder you will gain nothing from genetic testing or referral. First principle of ordering any medical test- will the results of this test change or influence the management of this patient? If not, there is no purpose in doing it.

    Ellen

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  4. Please watch for neuro side effects with Reglan!

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  5. Hate it that you've had such a hard time with your pediatrician, I'm so glad my insurance doesn't require referrals. Of course, that doesn't prevent us from having to wait 3 weeks for things like a visit to the dermatologist for a "suspicious" spot, that will probably be gone by then. You have more patience than me, I just threatened to leave our practice because I waited for 2 hours in the lab, with 5 kids who hadn't eaten anything, because they forgot to send lab work orders.

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  6. You have already given your new ped more then a few chances to make things right. From the sounds of things they will continute to be the same. You may want to look for another ped one that listens to your concerns and treats you as you should be and not as you have been.

    I just saw the traliior for the movie and it looks like it would be good for our older kids to watch, thank you for sharing.

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  7. Christine, you having to deal with a doctors office like that breaks my heart. It is so hard to find a good dr. We searched and searched for one for my little daughter. She has smith Lemli Opitz syndrome and her care is pretty involved. The first dr after the NICU told me not to bother filling out the development page for two mos, because "she couldn't do it anyway". Shame on that dr because Ilse COULD! We switched after that to the most wonderful pedi ever. I am guessing your insurance makes you have referrals? I am so thankful ours doesn't, although I know our pedi would give them. My suggestion is to call some new dr. offices and interview the dr before switching, make sure they know they are a team with YOU, and that you are not some dumb parent. Every time you leave that dr office you should feel like every concern was addresses. They should do want you want for things like referrals!! It is not like we have socialized medicine yet where care is rationed. I am sure the cardiologist would love to take your money. I am surprised there is no down syndrome clinic. We have one or more here in the DFW area. Don't know know far you are from a bigger city, but a lot of those clinics will see you with only a diagnosis. I cannot stress enough how important it is to have the doctor understand that she works for you, and even though I didn't hare it that way, inside tell ours when I interviewed her that I didn't want a negative dr and I wanted one who understood that we were a team. I hope you can find somewhere better because you and Oliver deserve the absolute best!!

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  8. Also, the benefits of genetics, if I can disagree Ellen, is that a geneticist will help you with everything that is ahead with down syndrome. A good clinic will have geneticists. Opmy dauter has two geneticists. One is a regular pediatric geneticist, and one is a metabolic geneticist. He manages so many things for me, and if you could see one for Oliver, he would deal with the reflux.... Or even a GI. Ilse has one of those, too. The metabolic geneticist is at our local down syndrome clinic actually.

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  9. I know I am leaving a lot of comments, but also something I have found to be invaluable is support groups. On fb we have a SLOS group that is amazing. Also there is a yahoo group. The other moms can answer so many questions, and while ds isn't as involved as smith Lemli Opitz, I bet you will have questions someday. Maybe the mommies of miracles goup on fb can point you to other local mothers of kids with ds.

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  10. You can buy zantac over the counter here. Just look at the dosage and follow accordingly.

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  11. Isn't it disgustingly amazing how much time we need to spend chasing people around to do their job? Persistance is the key to life...not intellegence or a Ivy League education! LOL!

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  12. I won't address the cardiac stuff...but the reflux stuff is sooooooo common. Our 5 month old projectiles spit ups everytime we feed him..everytime! My DH is a Dr and I am an RN..all 3 of our boys did this (all adopted..no genetic sharing:)) We always mention it to our Ped/int med dr and they say as long as they are maintaining or gaining weight no problem. Those few ounces no biggie really.I have known countless of family and friends who go through the barium swallow and then just get a diagnosis of "reflux" and are put on the meds you already have scripts (kinda) for. Just my 2 cents. If it is all driving you crazy...the barium swallow usually doesn't change anything. My husband and I are big on not putting our kids through tests if the meds or plan will not change. unless you think it is something besides reflux....i do think it's a good idea for Cards to see him.

    Praying for ya!!!! Liz

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  13. Look up Reglan and tardive dyskinesia. We gave Reglan to our son without knowing about it. He got tardive dyskinesia but we didn't find out until after spending 3 days in the hospital on a video EEG because it looked like he was having continuous seizures. It causes permanent changes in the brain. There is a big push to get a black box warning on this medication. It is not tested for children. There are many lawsuits revolving the damage it causes.

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  14. You might think about looking into CHOC, Children's Hospital of Orange County. It is not very far from the Inland Empire.
    http://www.choc.org/

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  15. Watch for side effects on Reglan. Our son used it for a week or so when I discontinued it. I told the doctor there's no way I will continue using it after the neuro side effects our little son was experiencing. I really hope you are able to find doctors willing to help and work with you.
    Blessings!!

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  16. Wow, you are going through it! You have been more than fair. Medical practices that want to improve will not punish their families for advocating for their kiddos! When I go "Mama Bear" on our kid's team and have to apologize later they all reassure me they would rather I advocate for our kids than stop being involved like so many other parents do!
    Praying you find the right team for your family soon!

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  17. Hi! I do not like to deal with insurance co. so at times I just pay out of pocket for special treatment my children need when I am able. Pat

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