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Post by Googsmom aka Jennifer on Jan 2, 2010 17:39:34 GMT -5
....Brookster has Asthma Back from the lung doc/sleep apena doc on Thursday. 3 hours we were there. He's so cool he gives out gifts and explained every little thing to me. Brook picked a firetruck He did a major workup on the kid. He studied her x-rays, sleep study video, all the charts and came up w/ asthma. Just great So now we have yet another medicine, not covered by insurance mind you $153.42 to give the poor girl. Her med schedual is getting quiet consuming. I should not complain, it could be worse I know but this breathing thing w/ Brooker is just not cool!! He listed it like so: Ds airways (small) Low muscle tone Both malasias Reflux Apena Asthma Not such a good combo Mrs Garbart, he says. No kidding!! He says this malasia noise has not gone away b/c the kid has asthma. Her floppy malasia throat makes it already hard to breathe for her. Add some asthma to the mix which inflames all her little airways and inflames the floppy throat, makes for some apena and this constant noise. Arghhhhh...... We now will go see the CPAP guy for our fitting. He wants her to play w/ it for a month or so and get her to not freek out. Then we will go back to the sleep study place and get it hooked up to the right settings. Of corse this new med has to be in granuals so it has to be ordered in. He wants to give it a week and maybe that could do the trick w/o CPAP but not likely he says. Giving it a try. It will hopefully decrease the inflamation and hence maybe more air. He stressed the importance of getting into see Dr Pinter (we're schedualed) and getting some ST from ESD for Brook for muscle building techniques. HA!! We all know how that will go.*Bitter Momma* So, thats all I know. Thanks for caring about my little Brookster I'm going to go pout now
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Post by Ericsmomma on Jan 2, 2010 23:28:21 GMT -5
Pout away...you're allowed! at least now you know whats going on with her. Eric was diagnosed with asthma when he was about 3yrs. old. Funny thing, now it doesn't bother him at all. Kinda like he outgrew it. It especially got better when we got his gastro issues under control. (alot of food allergies) and we had his tonsils and adnoids removed. What is the med they are putting her on? Could your pediatrician give you samples? Maybe he could ask the drug rep for a supply. Or write the pharmacutical company that makes it and see if they have a program that helps with the cost. Its worth a shot..... Hope all goes well for Brook. We'll keep her in our thoughts and prayers.
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Post by Emilysmom on Jan 3, 2010 8:55:38 GMT -5
Awwwww Jennifer.........I know you didn't want to come away from that appointment with another diagnosis. I'm sorry.
Great advice from Dolly! ! Lots of drug companies will help, and docs do get samples sometimes that they can give out. Let's hope for that!! She will stay at the top of my prayer list. And you too!!
Susan
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Post by char on Jan 3, 2010 15:32:14 GMT -5
((((((((((Jennifer))))))))))))))) I'm so sorry. Prayers out from Tucson!
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Post by lespring on Jan 3, 2010 16:07:07 GMT -5
Oh man! I'm so sorry you have more on your plate now. And yeah, juggling the meds does get interesting!
Hugs and prayers from us!
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Post by Googsmom aka Jennifer on Jan 3, 2010 16:49:59 GMT -5
Hi everyone. Thanks for the support {{{{{{HUGS}}}}}} Singulair is what they want her on. Good news, I found a $20.00 coupon Bad news, I just don't think i'm going to use it. After much research..... yes A, I know, stay off the google ........ I just don't like all of the side effects. Soooooooo many. Scary ones too. www.medications.com/se/singulairI always look for any side effects on any med I give the Brookster. This one scares the jeebers out of me. I'm going to call Dr Tami tomorrow and give her a shout. Maybe they can find something else w/o so many scary side effects. I have to see what Hubs says too.
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Post by Ericsmomma on Jan 3, 2010 18:41:44 GMT -5
YIKES! I don't blame you for questioning the use of singulair... Does she take anything for her reflux? There is a correlation between the two...if a child has reflux, they usually have asthma too. Not sure why, or which causes what, but there are alot of articles out there linking the two together. Might be something to look into.
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Post by laurasnowbird on Jan 3, 2010 23:31:24 GMT -5
Bleah, didn't like this one either.... singulair.legalview.info/Sorry to hear that you have yet another diagnosis, but at least now you know what the heck it is! Do you have your state's version of Children's Special Health Care? In Michigan, Ethan's sleep apnea is a covered diagnosis, so any medications or equipment related to it are covered by the insurance if our primary BCBS doesn't cover the full cost.
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Post by laurasnowbird on Jan 3, 2010 23:37:29 GMT -5
Oregon Center for Children and Youth with Special Health Needs (Oregon) Oregon Health and Science University Child Development and Rehabilitation Center 707 SW Gaines Road Portland, OR 97239 Phone: (503) 494-8303 Toll-Free: (800) 307-7070 Toll-Free Restrictions: OR residents only Fax: (503) 494-2755 Email: occyshn@ohsu.edu or pday@ohsu.edu Website: www.ohsu.edu/cdrc/oscshn/index.html
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Post by laurasnowbird on Jan 3, 2010 23:40:12 GMT -5
About Us Children and Youth with Special Health Care Needs are children from birth to 21 who have health problems requiring more than routine and basic care, including children with or at risk of disabilities, chronic illnesses and conditions, and health-related educational and behavioral problems. This includes children who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. We have the goal of developing and implementing innovative, replicable models of community-based care for children and youth with special health needs in the following core outcomes areas: 1. All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home. 2. All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need. 3. All children will be screened early and continuously for special health care needs. 4. Services for children with special health care needs and their families will be organized in ways that families can use them easily. 5. Families of children with special health care needs will partner in decision making at all levels, and will be satisfied with the services they receive. 6. All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence. Click here for more information about the six critical areas that will indicate our progress and the core outcomes we strive to achieve through our programs, projects and grants. This page contains information about the Special Projects administered by our office. To find out more about our staff visit this page. Learn more about the groups we partner with. www.ohsu.edu/cdrc/oscshn/about/index.html
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Post by Chris too on Jan 4, 2010 8:14:08 GMT -5
In Indiana, the Children's Special Health Care also covers therapies related to the diagnosis, so would cover any oral motor therapy that the doctors think might help.
Praying for you (decision-making and peace) and Brooker.
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Post by Googsmom aka Jennifer on Jan 4, 2010 12:09:11 GMT -5
Thx Laura. That is Brooks hangout already. They do have some papers to fill out to be on the list. I better find them and fill them out. I tell ya, out of all the hospitals around here, I will only go to OHSU/CDRC. Love that place Dr Tami just called. Singulair would not have been her first choice. She says Flovent. Arghhh, going gray as we speak LOL She said Flovent takes longer to work but is a safer way to go. Oh how she knows this freeked out Momma LOLLLOLLL We shall see Happy Monday everyone
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Post by laurasnowbird on Jan 4, 2010 13:24:54 GMT -5
Just the extra help with prescriptions would make it worth the time to fill out that paperwork. Our Blue Cross covers Ethan's Prevacid, but if we didn't have it Michigan's CSHCS would cover it completely. Without insurance, that stuff is over $400.00 per month!
Ethan also had therapies covered through CSHCS, and they were things our BCBS wouldn't touch! The odd thing is that they covered therapies that were unrelated to his "Qualifying diagnoses" which I was never able to fully comprehend, but we were thrilled to have the extra OT and speech! I've never been one to look a gift horse in the mouth......
I hope you're able to access the coverage. We were denied twice in Michigan before we got him on, we just kept trying. I know the guidelines are different from state to state, but in Michigan DS was not a qualifying diagnosis. His otitis media was, as well as his sleep apnea.
P.S. Glad to hear that Dr. Tami respected your concerns, she sounds like a good doctor for an informed mom!
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Post by wrblack on Jan 4, 2010 15:36:54 GMT -5
We used to give Charlie Flovent. Gave it by aerochamber, 2 puffs twice a day. Then we would brush his teeth and try to get him to rinse, to prevent thrush. Flovent is an inhaled steroid, I believe, prevents or reduces inflammation. We had a couple of other meds to use when and if Charlie got sick, congested. For those times, my drug of choice was Xopenex by nebulizer. Think it's about 10 times as expensive as albuterol but was glad our doctors got our insurance to cover it. CHOP pulmonlogist told me that only long term side effect of Flovent was possible weight gain. Sounded good, we were trying to bulk Charlie up at the time. Thanks to T&A and getting reflux under control and getting a bit older, we think Charlie has outgrown his asthma. Just our experience. Good luck to you and hugs to Brook. -- Bob
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Post by Googsmom aka Jennifer on Jan 4, 2010 16:45:44 GMT -5
Thx Bob. That is what Dr Tami has her on now, Flovent. She even did her two puffs like she was a pro. This cute little tube thing (aerochamber? ) has cute little bears on it. Funny thing. Insurance wouldn't touch the Singular but they covered this stuff which is $75.00 more. I'll never understand either Laura. I did call up to OHSU and all her CPAP related stuff is going to be covered Yeaaaa So, this is not so bad. We will get by. I do have to give some prop's to the Hub's who for years now was saying this is a lung issue. I best listen
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