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Posts by RoadWorkAhead

Joining in, though not strictly a DR follower.  We're in a weird spot right now, and I think we're basically not in a step?    Right now, we have $$ in savings (~$3200) but $1500 is going to fixing up our main family vehicle and the rest is in a marked fund for a possible SSA overpayment (I strongly suspect they overpaid, but I'm not sure what our repay penalty will be, etc.). We have slightly more than half of what the maximum penalty could be, so we may have to...
DS2 was not in daycare and breastfed, born at home, non-vaccinated (at the time), and spent 5 days in-patient on o2 with RSV at 3 months old.  His 2 year old sister brought it home to him, and she herself developed pneumonia.  Both kids now have RAD/asthma due to RSV.  Now I have to worry with every single cold, URI or bout of bronchitis that we'll land inpatient again.  I'd get the Synagis and not chance my child's longterm risk of asthma, which is greatly increased by...
DD has had developed full immunity to DTaP (well, TD are the titres checked) within normal dose ranges. The titres will be followed to monitor any possible drops. She specifically didn't respond to Prevnar. As of now, she's had a single dose of Prevnar at 2.5, a dose of Prevnar 13 in June, and she'll get Pneumovax in August. The Prevnar 13 helps with immune response to Pneumovax so we opted to do both instead of just one. We have not checked other titres as the normal...
The lack of vaccination titres may make it impossible to diagnose his specific issues. Until we vax'd DD, we had no specific proof of an immune issue despite chronic infections that appeared to be t-cell related. When we vaccinated against pneumococcus and found a very poor response, they were able to diagnose her with Specific Antibody Deficiency. DD has many hallmarks of CVID but she does not clinically present with CVID (no specific Ig deficiency). I'd still be...
Well, I would imagine anyone's stomach feels weird on a new diet by a new method. HOw much is she getting and how often? What are her specific complants? Loose or too formed stools are common on any elemental diet and aren't a cause for concern on their own.
I have no idea. I know that DD has a higher propensity for luekemia due to her chromo deletion, but I never thought about that part!!
Loose green stool (and the reverse) can both be normal. She could have the flu. Remember, her nasal passages are now irritated by the tube so she's probably a little more susceptible right now. That said, what formula? If its less refined, I would be tempted to switch, and I don't think I'd give it much over a week or two tops if it is Neocate or Elecare unflavored versions. I do know for DD, we had to do limited cals for a little while to build up her tummy tolerance...
I'm still stuck in BS#2. This weekend I landed in the ER after trying urgent care. I expect to pay through the nose for this since I've got the deductible plus my portion to cover. However, by the time I went in, everyone around me was horrified I hadn't gone before I was in so much pain (migraine times a million). I just kept focusing on the $$ part, but I really have to sometimes realize that money isn't everything too. Hopefully this won't set us back even further...
Quote: Originally Posted by Kristine233 Hmmm, my child would not be placed in an institution but respite care (like once a month) was suggested several times by his ADAPT worker and other professionals and that was to help US as we were getting pretty burnt out (and his siblings) and I couldn't even work outside the house at the time because of it. It was never documented though, although I know he would have qualified for respite. Instead, after we got...
Considering they are all very well studied and given to some very medically fragile children, you can rest assured they are quite high quality wise. It is not right to say they are made of "corn syrup" - First it's corn syrup solids, and second, they are broken down to an amino acid format. My daughter would be dead without elecare. I know she's not alone. We've had multiple rounds of nutritional testing, and she is always perfect with Elecare. Neocate is the same. A...
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