Karen (costerqueen)

Kaitlin'smom wrote: have you calmed down enough now to update us on what the feeding teem said? If not its okay I am just wondering.

C&K*s Mommie replied: I do not know the other side of the story, it sounds like something negative happened, but I hope you are okay now.

coasterqueen replied: Yeah. I would have responded back, but I also had Megan with me at work yesterday after her appointment so it was hard to respond, then last night it just slipped my mind.

This might get kinda long.

She definitely lost weight, about 4 ounces in one months time. That is a concern for both docs because even though she's crawling she hasn't started walking yet so she's no more mobile than she was a month ago. This was their fear all along that she would lose weight which they do not want her to do. She's been at least maintaining all this time. Their fear is if she weans anytime soon she'll lose too much weight, so we'll definitely not let that happen. They want to get her to a place that she'll maintain/gain weight when she's not nursing anymore. So they were not happy that I wouldn't put the cream in her bottles of ebm, but I told them I compensated by giving her whole milk yogurt which had more calories. So now they want me to give her whole milk with instant pudding mix in it to help her gain. Just seems obsurd to me. Haven't decided if I should do it or not. I'm going to look at more healthier ways to achieve the same goal, I think.

She was definitely diagnosed with Sensory Integration Disorder (SID), which they think is causing her to be attached to me emotionally for the comfort she needs to deal with her sensory issues, so when I'm not there, she sorta shuts down and doesn't want to eat as much as she would if she was with me. Made me feel bad because I can't help that I have to work and I feel so awful that if I was home she would have me to help her w/her SID. So I'm supposed to call the physical therapist again to see if we need to come in for more therapy or whether she can give me tips over the phone. She usually doesn't give them over the phone but she also says she's not used to dealing with clients who take such an active role in their child's issues (educating themselves, etc).

They also think that since she had so many issues when she was born with reflux, gag reflex, not fully developed, etc and that it took SO long for her to grasp the concept of drinking from a bottle correctly (which was about at 7-8 months) that she's just not ready for a sippy cup. She gags, her eyes water, she chokes and gasps for air every time she drinks from any kind of sippy, even the specialty ones they've ordered for her. She just can't get the swallow mechanism down right to do so. Before I was sending one bottle and 2 sippys to slowly wean her from the sippy. Since she's having so much problems w/the sippys they are afraid that is one reason she's not getting much milk while I'm gone so they told me to just send bottles. So I went out and bought the bottle they requested and sent just those today.

They want to hold off on giving more instruction til they hear from the ENT today. So we go there later this afternoon. They will check her adenoids, ears and go over issues with possible sleep apnea since she snores when she sleeps. Also when Megan was a baby her extremities turned blue easily,especially after a bath. It was very frightening, but the doc seemed to dismiss it at teh time. She did, however, seem to grow out of it. Then a last week Megan and I were sleeping in her room. I was covered, Megan was not but the room wasn't cold. She woke up and I looked at her and her lips were as blue as blue could get. Her hands were turning blue and her feet where white as a ghost. Her extremeties were as cold as ice. We were so freaked out. So they want us to mention that to the ENT to see if it could be sleep apnea, if it's not it's a circulation issue that we will have to go back to the doc for. She's only had this episode a few times, but they are still scary.

So I think the only reason I was upset with them yesterday is because I'm just so frustrated with all of this. I just want answers that seem to make sense and none of them do. How could she be losing weight when she eats solids like a PIG? The girl could put more food away than I can and she always seems unsatisified, like she always wants more 24/7. She also nurses well when with me.

Thanks for asking and thank you if you got this far.

mammag replied: Oh Karen, I can only imagine how frustrating and scary this must get for you. You are such a good mommy! She is a lucky little girl to have you. Hopefully you will figure it all out soon.

Kaitlin'smom replied: Your a great mommy. Your really wanting the answers to help her, I can tell how much you love that little girl. This must be so frustrating and exausting. I hope you soon find answers to help her.

jacobsmama replied: Wow Karen

I can totally relate to alot of what you said Jacob is 2 and still has some of those issues and I took him to the ENT and the guy was a real jerk, although jacob doesn't have the appetite of megan. He has the gag stuff and blue stuff and febrile seizures and snoring and noisy breathing. I hope they tell you something at ENT, and give you some light at the end of the tunnel. Definetly talk to them about sleep apnea because with snoring it can be very common, I found out. KUP. It will be ok.

amynicole21 replied: Ugh - that is so frustrating! Let us know how the ENT goes. I hope you get some answers soon.

coasterqueen replied:
Thanks everyone. Kristi - what was Jacob diagnosed with by the ENT? I keep hoping most of her stuff is just the adenoids and they'll take them out and this will all be done. Because swollen adenoids can account for why she has trouble swallowing. If the ENT doesn't find anything out the feeding team thinks he'll request a barium swallow test next.

Did they give you any reason for the extremities turning blue? Does he have this ALL the time or is it something that happens here and there? It totally freaks me out I know that.

My2Beauties replied:
A girl here at work's son just had his adenoids removed due to this exact same reason. I think his extremities used to turn blue as well. I will ask her what his symptoms were and why the ENT decided to remove them and give you some more information. I just need to get in touch with her.

I am really sorry all of this is going on. This really stinks

A&A'smommy replied: OH Karen how scary!!! I hope they can give you some answers fast!!

Maddie&EthansMom replied:

~Roo'sMama~ replied:

ashtonsmama replied:


Much love--

BAC'sMom replied:

siblingtoolivia replied: Don't know if this helps at all but I have a girlfriend whose daughter had bad refulx but instead of refluxing up and out she was refluxing into her LUNGS....she was having alot of breathing issues......just a thought.....don't know if you have had any other types of testing done on the refulx thing but it can really reek havoc on a child...mine had it horrible and didn't gain weight for a long time, it wasn't so much she was puking it was she wasn't eating because when she refluxed it was so acidy she wouldn't eat much....never took more than 3 ozs until 4 months old..........just some food for thought....

Hope you get some answers soon!

3_call_me_mama replied: HUGS! And prayers going your way Karen!! Hope that littel bugger of yours gains some weight and all this mess gets figured out soon ! Hang in there ! (OH adn I can totally see where you are coming form with teh cream and stuff!)

CantWait replied: Karen, I'm so sorry. It sounds like the appointment was nothing but a gong show and absolutely no help at all. I hope you can get some answers soon.

MyLuvBugs replied: I'm so sorry sweetie. THat's horrible. Be sure that they check her heart and lungs also. Turning blue is not only a sign of breathing probs, but can also mean heart probs. I'm hoping and praying she'll be ok and you'll get good news soon.

mummy2girls replied: oh no karen that sounds scarey! I hope you get the answers soon!

b&bsmom replied: Lots of ((((HUGS)))) medical problems are always so frustrating. I am sure you just want answers and then you start feeling so helpless. Hope you get the answers you need soon. Hang in there!!

amymom replied: Karen I wish I had great advice for you, but I do not. Just lots of hugs and prayers.