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Anything I am missing? GI appt Friday
Hi All!
I just want to make sure I have all my ducks in a row. I always have a list of questions for our doctors' visits, but I am at a point right now with DD that I am not sure what else can be done. Just to refresh:
-DD has been a bottle and food refuser since 9 weeks of age. She was put on Prevacid at around 13 weeks of age until 10 months, without much success. Very little visible spitting (and had scope show no damage to esophagus). At this time, she normally only drank 8 oz of BM and no food per day.
-At 10 months, she got ear tubes, which the ENT didn't think would have much effect on her eating, but did! She went to the teens for BM. Still was pretty bad at food.
-In Feeding therapy (private with SLP and EI with OT) from about 8 months on. Quit SLP because she sucked. She did evaluate her muscles and coordination and determined it was not a lack of motor coordination or muscle control. She didn't give us much help for tips or tricks, mostly got them on line and through the support boards in which I am part of.
-Had swallow study (She wouldn't swallow under the machine, and only took .5 oz of barium, even though she hadn't eaten in about 15 hours, so just saw no internal issues with kinks, etc), had endoscopy with biopsy (thought she may have EoE, but ruled negative) and allergy testing (also negative for the main culprits).
-With time, and patience on my part, she has started to eat foods and gone up to about 20 oz BM a day. She has always refused purees, and only will allow foods if she can feed herself. On a good day, I would guess (but, not having an actual dietician or nutritionist involved yet) that she gets about 700-800 calories. On a bad day, I would guess in the 500-600 range. She is 17 months old and very active. We add coconut oil in her bottles to up calories, as well as add butter, cheese, sour cream, etc. to help.
-I had gone on the elimination diet twice when she was smaller with no improvement (was on for 8 weeks at a time both times).
-We have not tried Periatcin (sp?) or Duocal yet and will be asking about these at the appt
-She used to get sick A LOT at her former daycare, with temps going frequently to 104. She hasn't had a temp (knock on wood) now since Dec. She was getting fevers this high monthly. We haven't been to a specialist for them, because my Ped thought it was a good thing, saying 'I think her body just reacts this way to fight of the infection faster. I think her immune system is really good'. I keep questioning her about that, because it seems counterintuitive, but, hey, I'm not a doctor. Been thinking about going to a rhuematolgist, but since she hasn't had them in a while, I put that to the side for now.
-Her speech was very nasal (actually getting slightly better), and her head circumference didn't show any growth between her 12 and 15 month appt. I had done research on DiGeorge (due to other symptoms as well), and was going to ask about it. I scheduled genetic testing and it is set for Sept- barring insurance issues.
If she hasn't grown since her last appt with GI, they are going to do a CF test. I was going to ask about Celiac as well (but, I thought they could tell that from the scope, if it was bad enough). Any other thoughts of what I should be asking? We haven't had any other specialist involved. I feel that we get to see him so infrequently, that I really need to get my bang-for-buck here. Any suggestion is appreciated!
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Re: Anything I am missing? GI appt Friday
good luck! I know how frustrating the food refusal is. I'm actually really impressed you kept her off of a feeding tube, when Greyson's intake was that low they kept threatening me with one (like somehow I could magically make him eat).
I know th
Hey
Going through a lot of the same with my DD but we just saw GI and are on prevacid - how did you get her to take it btw?! I need help with this - and have a follow up with pending scope and allergist appointment.
Glad you avoided EoE - t
Wow-thank you all for the help!!! This is great- and I will be checking about the pulm!
St. Augbride- what type of genetic testing did you do? I just called our hospital, and said I wanted 'genetic testing'- I really don't even
Mightymom-
For the Prevacid, we took the painstaking approach at first, and dissolved (we use the Solutabs, and I would suggest getting those if you don't have them-we tried the soln and it sucks!). So, we used to dissolve it in a little wa