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this is a little whine, so please bear with me.
Kendra is finally interested in food, but the kid has a reaction to most of the food we had offered. we trialed yogurt and she liked it, but failed it
(terrible eczema patches for days, loose poos and night waking/crying). we had blood worked for celiac and it was negative (i am not very convinced by this results) we had the skin testing at 7 months and it was negative (milk was one of the test) (not sastified with these results either). we have an appoinment with the ped Gi on august 23. this is so far away. i have called everybody i can possible call to move this appoinment, but no luck. my ped called them and they told her the same thing, “will let you know when you have cancellation”. Hello my baby is finally wanting some food, can you help? i want to scream
iam hoping to talk or (demand)about an endoscopy with biopsy to really check for allergies like EE, which i highly suspect, celiac and other. iam so tired of “swimming against the current”. i feel the docs are so desinterested sometimes and you really has to be a pain in the a. to get some help iam being so impatient
, i can wait any more!. the OT therapy is on hold, the dietician appoinments is on hold, until we know what we are dealing with. i am scared to death to try any new food. so far she has a reaction, to carrots, peach, applesauce, baby cereals, yogurt, peas, bananas. i was advised by the dietician not to try anything new for fear of causing a microscopic(blood that won’t show in diaper) GI bleed and resulting in anemia and other problems. She was on the low side for iron last blood work. none of her diaper have been positive for blood, just one was in the middle last time it was tested. ughshe hates the taste of the neocate, so we are just doing baby pears, cut green beans (one or two bites) and plums. these is not bad considering our predicament), but i want her to eat more of the other food, specially if she is liking them. She still vomits 1-2 times a day and only tolerates 4 oz a time. the ph probe results came back within normal limits, so the only thing left similar to reflux is EE.
i am sorry about my whine. my problems are small compare to others here, but i just feel so much under the weather by this situation.
thanks for listening
I’m so sorry Leo.
That must be beyond frustrating. I pray that you will be able to get into the GI and finally get some answers. *hugs* You and Kendra will be in my prayers!Oh Leo, I feel so bad for you and Kendra.
It’s so sad that she wants to eat but can’t. I hope and pray you find some answers and solutions soon. Leo, wow, what a frustrating time it is for you. Poor little Kendra to. It certainly sounds like something pretty significant going on with all those reactions to the food.
BTW, it certainly didn’t come across as a whine. I think we have all been there “frustrated” I mean in this roller coaster journey called reflux.
I tried to make an appointment with my Pead today to discuss Alana’s milk intolerance and how we would handle it in the next 12 months (nothing like poor little kendras intolerances but bear with me). Anyhow I have to wait 3 months because….two of the peads have left the region and everyone is just overworked. My pead has to cover the hospital pead wards too. I guess its probably like that everywhere in the world, too many patients, to few Drs. Luckily for me we can afford to wait, but I would certainly be frustrated it it were more serious, like it is for you.
I was speaking with the nurse, because i suspect Alana may be a little intolerant to wheat as well. I was talking about how it limited us somewhat to fruit, veges, gluten free foods. Anyhow, she said her son lived nearly entirely on cucumbers (and formula) for months. Even now he still takes 1/2 a cucumber in his lunchbox daily. So I suppose that gave me a bit of perspective
. Sorry if this post sounds like its all about me, but I guess what I wanted to say, is if Kendra can tolerate the plums and the pears, just stick with them until the appointment. I’m sure that Kendra will be taking them to school in her lunchbox in years to come, next to her peanut butter and jelly sandwhiches
rice? rice noodles? sorry for the suggestion, I’m sure you’ve thought of it all
hang in there!!!!
and please keep us posted!
Thank you everyone, i apprecciate the support.
Therese,
i am sticking with the pears and prunes for now (they mostly help her poo). it’s just hard to get her off (at least one ) night and day time tube feeds with that kind of diet. it would be easier if she at least drinks her milk on her own, i guess. please don’t feel bad talking about your concerns, trust me they are still worries even if they don’t seem serious compared to others. i like what you said; kendra will certainly enjoy pears and prunes in her lunch box!
Thais,
i was not so sure about the yogurt, but the dietician said it was worth to try, since it is so beneficial in “normal” settings and it could substitute one tube feeding . we stopped for sure
. my next food to try was potaoes and rice. i am just nervous right now with new food, specially high carbs one, since i don’t know what kind of intolerance she may have. i will give it try though.Laura,
thank you for the suggestions; yes i was going to try that too.
at least it will keep her munching on something until you get some anwers.
she’s been fuzzy today and her poo is diffrent too. ughh. certainly a guessing game right now. thanks again everyone. i try to be more patient (yeah right!
)you guys woudl not belive this…… are you ready?
THEY CALLED ME JUST NOW FROM THE GI PED OFFICE TAHT THEY HAVE A CANCELATTION FOR TOMORROW AT 11:30 AM!!!!!!!!!!!!!!!!!!!!!!!! OMG IAM STILL IN SHOCK! I SAID” YEAH WE’LL TAKE IT IN A HERAT BEAT!
i just went to our hospital this morning to get copy of kendra’s mediacl records so i can be ready for my appoiment if they happen to have a cancelattion and my gosh i am just in shock
i did called her other ped GI in Columbia (3 hours away) yesterday and i talked to him and pretty much begged him to call the ped gi in Charleston (1 1/2 hour away) and explain to him our situation (we din’t go see him b/c he wasn’t very helpful when we first went). i don’t know if he called or not, but WE ARE GOING TO SEE THE ONE IN CHRLESTON TOMORROW!! YIPEEEEEEE!! YIPEEEEEE!
ok, ok i am stopping now. THANKS EVERYONE FOR YOUR PRAYERS
That is awesome news, Leo!!
I’m so glad you were able to get in tomorrow! Prayer works for sure! I’ll continue to pray that you can get some answers tomorrow. Keep us posted! Thank goodness!! I hope the appointment goes well. Please give us an update tomorrow. I’ll say a prayer for your little angel!we had a very productive GI appointment today.
absolutly NO FOOD until we get all the test done. they gave us something called lactulose to help her poo and we will be using water to practice spoon feedings and the therapy toys to keep up oral skills. we also will try to push the neocate intake by mouth. we are schuduled for gastric emtying scan next week. and an endoscopy for the end of July or beginning of August; hopefully will get more answers. we got refered to a ped allergist as the doc was concerned about her ongoing eczema problems (the patches look so raw and itchy). she was 25% for wt and 3% for hight
. we were all a bit worry about that and will be monitoring her ht for another month, if not improvement, will be referred to an endocrinologist (sp?). i don’t understand why her hight will be so off. she said it depends on a lot of things (how is measured, who measurers it and so on). i went there for one problem and came out with two
.overall was good. the ped gi was EXCELLENT
. he is familiar with marci kids stuff and even uses the guidelines when he has to. i will post his name on the recomendation site. he was very attentitive to my concerns and told me he will help us get kendra better or on the right track how is that for a doctor!thanks everyone. i should post this in the hip hip forum.
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