Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Ursula: Sorry to hear Macey is sick -- hope she's better soon. Congrats on that report card, it's great that she's doing so well at school! (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Ursula: Sorry to hear Macey is sick -- hope she's better soon. Congrats on that report card, it's great that she's doing so well at school! (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Ursula, That is such great news about Macey's grades!! I am always rejoicing when I hear of kids like Macey who are so sick and yet are able to hold their own at school. I am amazed at their ability to concentrate no matter what else is going on!! Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Ursula, That is such great news about Macey's grades!! I am always rejoicing when I hear of kids like Macey who are so sick and yet are able to hold their own at school. I am amazed at their ability to concentrate no matter what else is going on!! Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I would agree with Dale, it sounds like it might be time to check in with some other resources. $300.00 every three weeks per child as well as all the other meds would amount to $4800.00 per child not to mention all the copays. We finally have our kids on secondary medicaid. The state of WA pays for about 1/2 of there premiums and then picks some of the differences. But basically we continue our primary so that the docs will see us. IF we switch to all medicaid I think we would have difficulty getting treatment especially with the Specialty servcie providers. In many states there is a spend down policy . It means that if you hit a certain amount of out of pocket per family then they will give you a coupon to pick up the difference. It sounds like it does not matter what you make that you have probably hit that spend down. I am working on this on the national level. We also have an organization in WA that is a consumer advocacy program that is attached to the Office of the Insurance Commissioner. You may want to check with them to see what support they can provide for you. It is part federal and part state dollars. The illnesses are overwhelming enough the bills are a major slap in the face. insult to injury. I had to finally say that I would learn everything I could so that I atleast know my rights. It is definantly the most challenging part of my work. Call Dales contacts and consider advocating for your family to be able to take atleast some of the financial stress as time goes on. ( I will have to say sometimes when I think I have it figured out I find that he insurance companies change their policies. BARBIE ( Lucas, 6, CVID, Bipolar etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Ursula, That is great news about Macey's grades!! Good for her! I can't imagine an infusion rate of 90! Caelan reacts if we go over 30!! He anaphylaxed one time when we went from 15 to 30 and ever since he hasn't gone above 30. He was getting 10g I think. We are in holding pattern right now. He was off IVIG for the summer and so far is doing really well so we are waiting to see if we need to start it again or not. I am hoping he can slide by at least until January. We'll see though. Right now both kids are isolated b/c Grace is homeschooling, but she will be going to KG in the winter so she'll be bringing home all kinds of yuck! Our insurance coverage is getting worse after Jan. We used to have IVIG covered at 100% but now it will cost about $300 per treatment. I know that probably sounds great to many on this list, but $300 every 3 weeks could get really difficult, especially since all other medical is going up too. Three times the price on meds after Jan. I am stocking up on 90 day rx for everything I can get my hands on before Dec 31st! Grace 8/97 (IgA def; Specific T-cell deficiency; pneumococcal antibody def; asthma; allergies) Caelan 8/99 (Iga def; specific t-cell def; pneumococcal antibody def; asthma; severe food allergy; Latex allergy; Bactrim, Biaxin, and Pencillin allergy; Eosinophilic espophagitis, on IVIG) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 In a message dated 5/5/04 3:50:07 PM Pacific Daylight Time, uahollem1@... writes: Either bronchiectasis or sarcoidosis. interstitial Ursula, I'm sorry to hear this. Does Macey have any other symptoms of Sarcoidosis?? It's one of my diseases--part of the mix. I will be curious to see how the sub cu works for you guys. We're not done with Bri's testing, yet, but we are finally heading in a direction that may lead us to IVIG. If so, I would like to explore the possibility of sub cu before IV. Take care-- Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot, Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD, Carnitine Deficiency, possible Tethered Cord Syndrome. Quote Link to comment Share on other sites More sharing options...
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