https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 28 Apr 2026 01:27:17 +0000 https://boards.hellobee.com/topic/swallow-study#post-2901311 Fri, 01 Nov 2019 11:48:03 +0000 magnolia 2901311@https://boards.hellobee.com/ <p>My almost six month old has laryngomalacia and silent reflux. .We had a ENT appointment this week and he recommended a swallow study and a GI visit</p> <p>Any experience with the swallow study? All they really told me was not to feed her before 6am. </p> https://boards.hellobee.com/topic/miralax-cleanout#post-2900948 Tue, 29 Oct 2019 01:30:11 +0000 thepaperbutterfly 2900948@https://boards.hellobee.com/ <p>Has anyone else had to do this? I'm dreading it :( My daughter is almost 3 and has suffered from chronic constipation for about a year. I personally suffer from IBS with constipation and diarrhea since I was 15, so I thought I could handle her problems. She's been on Miralax, milk of magnesia, fiber supplements, and probiotics, which seemed to keep her regular in the past, but things have gotten really bad in the last two weeks. Nothing is working besides glycerin suppositories. She's had two in the past week and a half. She last had a glycerin suppository on 10/26 (after not pooping for 5 days), which cleaned her out, but hasn't pooped since then. I've given her 3 tablespoons of Miralax and 25 ml of Milk of Magnesia in the past 24 hours and still no bowel movement. I'm just dreading doing another glycerin suppository tomorrow night because she was kicking and screaming as I inserted the last one :( </p> <p>We're going to start the cleanout on 11/1 and I just feel so bad for her because I know how much it is going to suck. Her doctor explained that her colon and large intestines have probably stretched out and aren't as elastic as it should be, so her poop has to be really soft. My husband is being a bit of a jerk about it. He was asking me questions tonight in an accusatory tone like why did this happen, how abnormal this is, how safe is Miralax, and interjecting that he doesn't want her to be on medicine everyday. I asked him how he would like to fix the problem, and of course he had no answer. I also asked if he wanted to go to the doctors with me next time and again NO ANSWER. . He works like 80+ hours a week, and I work about 34 hours, so I'm home with the kids more often . After spending two hours at the doctor's office today with my toddler and baby, I didn't expect to be grilled at home by him. Ugh, I'm just really annoyed with him right now. </p> <p>Sorry for getting sidetracked. I just feel that i'm torturing my daughter with the enemas and now a bowel cleanout. Those are horrible enough for adults. I called my mom from the doctor's office crying Granted, this is kind of minor as far as health issues go., but it's definitely impacting her quality of life at the moment. </p> https://boards.hellobee.com/topic/graduated-off-the-g-tube#post-2888856 Mon, 24 Jun 2019 20:07:42 +0000 Mrs. Tiger 2888856@https://boards.hellobee.com/ <p>And it only took 5.5 years! Just in time for D to start kindergarten this fall. So thankful it helped him grow but so excited to leave it behind! We will continue following up with his GI team a few times a year, but he graduates off the tube at 72% weight, 78% height! He hasn't used it for calories since Nov, meds since Feb, docs gave the all clear for removal at his checkup today. </p> <p>I've been quiet on here lately but still love and cherish the HB community for all the support I got during the hard times, thank you ladies ❤</p> <p>Pic is when he got the tube at 6 weeks old vs today right before I removed it 😊 </p> [attach=1630/19/ptmr4u.600x600.IMG_20190624_195548_374.jpg] https://boards.hellobee.com/topic/laryngomalacia#post-2888089 Tue, 18 Jun 2019 20:33:13 +0000 magnolia 2888089@https://boards.hellobee.com/ <p>Does any one have experience with this? </p> <p>My little one was just diagnosed with it after a stressful few days between the ER and the ENT</p> <p>Any advice on how to cope with this and especially with making her more<br /> Comfortable when she is having breathing difficulty would be much appreciated </p> https://boards.hellobee.com/topic/chronic-roll-call#post-2810965 Tue, 20 Mar 2018 20:11:39 +0000 Mrs. Tiger 2810965@https://boards.hellobee.com/ <p>hey there hive! Any mamas/papas with LOs with ongoing health concerns would like to introduce themselves? Updates from the original crew? Hope everyone has been doing awesomely! </p> <p>My D is 4.5, has a g-tube, short gut syndrome, and (relatively newly diagnosed) asthma. Need to write a blog post on what's been going on and how we're dealing with asthma (spoiler alert, it's nebulizer treatments). He chose that pose for the pic below, I didn't prompt him :)</p> <p>As always happy to answer any questions or commiserate re: super tubies, GI issues, developmental issues, extended NICU stays, toddlers with things they can pull out of themselves and cause a health crisis, fighting with insurance, etc. </p> [attach=1630/18/p5x1zf.337x600.1224171933d.jpg] https://boards.hellobee.com/topic/medical-records-frustrations#post-2875243 Wed, 06 Mar 2019 19:22:04 +0000 jhd 2875243@https://boards.hellobee.com/ <p>DS2 has seen some specialists for tests lately and I’m super frustrated that records are never just sent quickly to the referring physician. </p> <p>In one case I called several times yet it still took over 3 weeks before the records reached the right place. Now that doctor is out of town and won’t see them for another ten days. </p> <p>We had another test on Monday and the tech told me I would get a call that afternoon. Fast forward two days and I have heard nothing. Call the ped and they haven’t received any records. I called the office and the receptionist gave me no info other than asking for the fax number to send it over. Which I had already provided on Monday. I will call the ped’s office tomorrow to ensure they received it.</p> <p>Anyone else deal with this or have we just been unlucky? </p> https://boards.hellobee.com/topic/anyone-have-an-lo-with-eoe#post-2518576 Thu, 07 Apr 2016 13:44:50 +0000 MrsRcCar 2518576@https://boards.hellobee.com/ <p>My oldest N was diagnosed with EoE last fall. Fast forward to now we are being sent to an allergist to figure it out. So tell me your experience. </p> https://boards.hellobee.com/topic/any-parents-out-there-with-an-eoe-baby#post-2848185 Sun, 30 Sep 2018 11:18:00 +0000 fik219 2848185@https://boards.hellobee.com/ <p>Does anyone out there have any experience with EOE? Our GI wants yo scope out little 4 month old son due to his CMPA and history of reflux that we cant seem to get under control with a PPI. I am so nervous. Help! </p> https://boards.hellobee.com/topic/making-it-through-doctors-appointments#post-2813958 Tue, 03 Apr 2018 11:11:17 +0000 luckygirl 2813958@https://boards.hellobee.com/ <p>We have an orthopedic appointment this week to discuss pain management and medicine for DS (4 years old), and are looking for suggestions for entertaining him so we can actually talk to the doctor during it. </p> <p>DS is pretty tired of seeing doctors all the time. We seem to go at least once or twice a month. He gets bored or just doesn’t want to be there, and tends to spend the whole time trying to talk to us and get our attention, while my husband and I are trying to talk to the doctor. We bring a lot of things to try to distract him – a new coloring book and markers, a new small toy, books, small random things from the dollar store, and a tablet. While he can be entertained by watching something on the tablet for a while, the problem is we can’t rely on the tablet for the whole time, because DS gets upset if the doctor then wants to examine/speak with him when he’s in the middle of watching something.</p> <p>Does anybody have any tips for making it through lots of long doctors' appointments? </p> https://boards.hellobee.com/topic/prayers-and-good-thoughts-appreciated#post-2739774 Wed, 24 May 2017 22:22:10 +0000 jhd 2739774@https://boards.hellobee.com/ <p>LO has an appointment tomorrow am with a geneticist to test for some genetic conditions. He was previously cleared by genetics, but a new symptom that we discovered this year has caused his team some concerns. I would appreciate your prayers or positive thoughts. </p> https://boards.hellobee.com/topic/ddd-intake-appointment#post-2510881 Wed, 30 Mar 2016 19:53:06 +0000 lemondrop 2510881@https://boards.hellobee.com/ <p>We are in the middle of setting up autism testing/diagnostics for Cameron. I just found out that we qualified for an intake appointment with the Department of Developmental Disabilities next week. I know this varies quite a bit from state to state, but I haven't found many details online about what to expect. Does anyone have any personal experiences to share about the process? HB has a great blog entry about it, but I'd love to hear more experiences from those regarding autism or chronic health. </p> https://boards.hellobee.com/topic/juvenile-arthritis#post-2519453 Fri, 08 Apr 2016 08:10:06 +0000 sashaskog 2519453@https://boards.hellobee.com/ <p>My 2.5 year old daughter was just diagnosed with Juvenile Idiopathic Arthritis. At this point it is only affecting 3 joints: her knee, ankle and wrist and all on the right side. We have started naproxen and are will be doing injections in two of the affecting joints (the wrist isn't too bad at this time). At this point it's just a waiting game to see how she responds to the injections and whether or the arthritis will continue to flare up. She doesn't appear to be in pain, but has a significant limp due to the knee. I'm trying to be optimistic, but the unknown is hard. Her doctor is optimistic though, which helps. </p> <p>Does anyone else have experience with juvenile arthritis? </p> https://boards.hellobee.com/topic/care-package-for-parents-of-nicupicu-baby#post-2508050 Mon, 28 Mar 2016 10:06:17 +0000 Ash 2508050@https://boards.hellobee.com/ <p>A bunch of us are going in on a care package for parents of a baby just diagnosed with a brain tumor. We're doing gas and food cards and snacks. Any specific snacks that come to mind? Or anything else you can think to add? </p> https://boards.hellobee.com/topic/chronic-mama-roll-call-amp-updates#post-2110925 Mon, 16 Mar 2015 21:02:01 +0000 Mrs. Tiger 2110925@https://boards.hellobee.com/ <p>Hi ladies!</p> <p>I think there's a few more of us since the last thread was really going. In an effort to be more inclusive can we give a brief summary of our LOs situation, and then dive into whatever is going on in your world these days?</p> <p>My DS2 (D) is 1.5yo, was 8 weeks premature and had a brain injury at birth - it appears that the "only" long term affects are mild CP affecting his oral skills. He relies on a feeding tube, gets regular immune IV boosts, and has short gut syndrome. </p> <p>D's 1 year early intervention testing/eval is under way, his OT started going through the categories at her last visit. He actually scored at the 18m level for gross motor skills which is a big deal! His self-help (ie oral skills) are behind, 12-18m but that's not surprising to me. He has a few garbled words here and there, including dada, mama, anna (means big brother, what he calls K), yeah, cracker (of course, cracker!), woof, go go go, car car... I think that's about it :)</p> <p>How's everyone doing? Happy it's almost spring? </p> https://boards.hellobee.com/topic/happy-feeding-tube-awareness-week#post-2452902 Sun, 07 Feb 2016 16:39:40 +0000 Mrs. Tiger 2452902@https://boards.hellobee.com/ <p>Not going to be blogging about it this year but you all get free passes to ask about feeding tubes if you'd like! As long as it's not on this bingo card ;) </p> <p>D has had his g tube since he was 6w old, now 29m! The hardest part is when he pulls it apart while he's getting fed overnight and we wake up to a soaked, hungry boy. Its such a wonderful piece of technology and I am thankful every day that he can use it safely. </p> <p>Any other tubie parents hanging around? </p> [attach=1630/16/o275i5.585x600.Screenshot_2016-02-07-16-25-37-1.png] [attach=1630/16/o275i6.600x337.0130161545a.jpg] [attach=1630/16/o275i7.337x600.0125160935d_HDR.jpg] https://boards.hellobee.com/topic/does-it-ever-get-easier#post-2368220 Tue, 24 Nov 2015 12:58:55 +0000 LuLu Mom 2368220@https://boards.hellobee.com/ <p>My LO has been under anesthesia 4 times in her short 3 years. This doesn't include the local anesthesia used for certain tests. We just got a call that our GI''s office that they want her to get another scope done, even though we thought we were done and they haven't seen her in over a year. We are going to discuss with our pediatrician if she thinks it's necessary but I started to cry. She's older know, she knows what is happening and I just hate to see her so upset. It's so unfair for her to deal with. I'm sure I know the answer to my own question, but does it every get easier? I feel like it gets harder with age. </p> https://boards.hellobee.com/topic/article-by-mom-of-child-with-rett-syndrome#post-2139877 Fri, 10 Apr 2015 12:50:43 +0000 Ms.Badger 2139877@https://boards.hellobee.com/ <p>I know that I'm not technically a parent of a chronically ill child anymore but I thought this article may resonate with those who are:<br /> <a href="http://www.huffingtonpost.com/beth-whitley/damaged-goods_b_6980494.html?utm_hp_ref=parents&#038;ir=Parents" rel="nofollow">http://www.huffingtonpost.com/beth-whitley/damaged-goods_b_6980494.html?utm_hp_ref=parents&#038;ir=Parents</a></p> <p>Hope you are all hanging in there! </p> https://boards.hellobee.com/topic/the-trouble-with-down-syndrome-awareness-month#post-2319907 Wed, 14 Oct 2015 15:17:48 +0000 Mrs. Tiger 2319907@https://boards.hellobee.com/ <p>Great post from a fab blogger. I clearly don't have a child with Downs syndrome, but her hesitations for celebration sound familiar! What do you guys think?</p> <p><a href="http://www.kidscreektherapy.com/down-syndrome-awareness-month" rel="nofollow">http://www.kidscreektherapy.com/down-syndrome-awareness-month</a> </p> https://boards.hellobee.com/topic/chronic-skillzzzzzz#post-2304413 Mon, 28 Sep 2015 15:55:50 +0000 Mrs. Tiger 2304413@https://boards.hellobee.com/ <p>Show off your LO's unique skills!</p> <p>D (2yo) can:<br /> - pee in a cup on command<br /> - take his own pulse ox reading<br /> - knows how to attach his feeding tube pump, almost knows how to turn it on! He can open up his extension line as well. Although an impressive skill, it's problematic when he messes with his overnight setup! </p> <p>Also if you're new around here (especially to the chronic board) please introduce yourself 😃 </p> [attach=1630/15/nvenh2.480x600.IMG_20150928_164324.jpg] https://boards.hellobee.com/topic/toysactivities-for-toddlers-hospital-stay#post-2296284 Sun, 20 Sep 2015 12:30:50 +0000 Lilbear 2296284@https://boards.hellobee.com/ <p>We will be spending 2.5 days in the hospital this week with our 29 month old DD. she will be wired to an EEG machine for that entire time, and therefore confined to her hospital bed. I am trying to brainstorm activities for her, as she is a very active kid. So far I have coloring books/crayons, 12 piece jigsaw puzzle, Minnie Mouse toy that can change outfits and fits in her own car, wooden beeds with string set, floam, and an iPad for cartoons &amp; educational apps. </p> <p>Does anyone have any additional ideas on ways to entertain her during this time? I know (due to previous hospital stays of the same nature) that they have toys already at the hospital that they let the kids use during their stay. However, in the past, she was only 7 &amp; 9 month old for these visits, so the lack of mobility &amp; crib confinement made it much easier!</p> <p>Any advice is appreciated! </p> https://boards.hellobee.com/topic/swallow-study-please-keep-us-in-your-thoughts#post-2260722 Tue, 11 Aug 2015 10:41:41 +0000 MrsRcCar 2260722@https://boards.hellobee.com/ <p>E has been battling with all kinds of feeding issues among his OT/sensory issues. Today he is 18 months and going for his first swallow study. I am nervous but hoping we can get some answers to his problems. Just this morning he threw up because he was choking on his cereal. :crying:<br /> It is so hard to watch him struggle. His appointment is at 1:45 EST. </p> <p>Could you please keep E in your thoughts? </p> [attach=2880/15/nsxcxh.450x600.image.jpg] https://boards.hellobee.com/topic/asking-questions-at-doctor-appointments#post-2248238 Tue, 28 Jul 2015 16:57:09 +0000 jhd 2248238@https://boards.hellobee.com/ <p>How do you keep track of questions you have for your LO's healthcare providers? Are you good at coming up with questions on the spot when you get new diagnoses or plans for LO's care?</p> <p>Basically, I spend all my energy trying to keep LO calm and I can't think straight. I can't even begin to think about questions until I'm driving home or trying to explain to DH what's going on! </p> <p>Today after our ENT appointment I just ended up calling back to leave a message for the doctor. He had the afternoon off, but the nurse was able to address some questions and said she would have him call me in the morning as well.</p> <p>Any tips or tricks? </p> https://boards.hellobee.com/topic/our-gi-adventures-with-n#post-2238808 Thu, 16 Jul 2015 19:01:34 +0000 MrsRcCar 2238808@https://boards.hellobee.com/ <p>Today we met with GI at the children's hospital for N. Overall it was a wonderful visit. His GI doctor is a wonderful lady. We discussed all of his issues and my concerns. She looked over N and said that overall he looks very healthy (largely due to fact that I am diligent with his diet), but said she understood my concerns.<br /> She ordered celiac genetic testing, stool studies (can I just say YUCK), Upper/ Lower scope, and something about testing for acid reflux. They will be calling tomorrow to schedule the scopes. </p> <p>We did go ahead and get the labs drawn for the Celiac genetics test. It was AWFUL! He had to be stuck twice. The first stick there was no flash of blood and he just screamed and begged to be done. The second stick was fast and at least it was only one tube of blood. I guess I got pale, the lab person kept asking if I was ok. :meh: We should get the results in about a week. </p> <p>Is it bed time yet? This momma is exhausted. </p> https://boards.hellobee.com/topic/doctors-office-griping#post-2243042 Wed, 22 Jul 2015 13:35:45 +0000 Mrs. Tiger 2243042@https://boards.hellobee.com/ <p>I'm so annoyed although I've ultimately solved the problem (for the nearterm). D's bili levels were elevated in the last labs he got taken at IVIG, which that doc then faxed to his GI team (which he last saw in early June). They were totally unresponsive, I called, left messages, and emailed everyone I had contact info for multiple times over two weeks, asking for them to look at the labs or schedule us for an appt, no response. </p> <p>I finally sent an email this morning saying that this is my last attempt to contact them and if I don't get a response I'll take D somewhere else. They're supposedly the best (for short gut kids) but I'm sure other groups have good docs too. </p> <p>Lo and behold I get email responses from two different team members, and four voicemails. They changed his meds based on the labs, asked him to come in for new labs next week, and scheduled him a next appt sooner (it was in Sept, now early August). </p> <p>I'm glad they're paying attention to me now but seriously, so annoying! If they give me any crap about losing my cool or aoemthing when I see them, I'm done. </p> <p>Does this happen to you guys? Would you consider leaving a specialized practice for poor communication skills? </p> https://boards.hellobee.com/topic/feeling-overwhelmed-6#post-2228108 Mon, 06 Jul 2015 18:41:15 +0000 MrsRcCar 2228108@https://boards.hellobee.com/ <p>Since we moved I have been feeling very overwhelmed with everything regarding N and E's health. </p> <p>N is 33 months old. He has speech delay issues. They diagnosed him with: severe expressive delay, sever articulation delay, and mild receptive delay. We recently changed doctors because we moved. The new doctor has been extremely helpful in getting all the specialist appointments. N is scheduled to see the developmental ped, audiology, speech, nutrition, and (once blood work comes back) GI. We recently did the Mchat testing for Autism. He does flag for autism but only in respect to his speech.<br /> Fast forward to this weekend, N got glutened on Friday which meant for us that he has been miserable all weekend. We saw the doctor today and they sent a prescription for a new cream to see if it helps. They also ordered a lot of blood work to see if we could rule out some issues for N. Getting his blood draw to day was terrible! The lady was great and gentle, but listening to him beg and scream for it all to stop was heart breaking. :crying: I just hope that all of this was not for nothing. I know some of the testing was for Celiac reaction, markers for crohns. Depending on how the blood work comes back they will be referring us to genetics. This just has been so much in the last two weeks. We also start speech therapy this week and see the new EI folks on Friday. </p> <p>E (16.5months) has had chronically low iron since birth. They had orders waiting for him to get his hemoglobin checked. This meant that he also got blood draw done today. There was so much screaming. :crying: He is also seeing feeding therapy, because he struggles with thin liquids. He also has a bit of oral aversion. He is slated to see Developmental peds, audiology, speech, and nutrition. Plus EI on Friday!</p> <p>It has been so much. I feel a little like I am under water with all this medical stuff going on. :bummed: I have very little support here in our new town. DH is very supportive but he is gone SO much for school and work, it leaves me to solo parent a lot of the time. </p> <p>I am not sure what I am want here just support I guess.... </p> https://boards.hellobee.com/topic/so-now-canker-sores-and-weight-loss#post-2177579 Wed, 13 May 2015 22:12:46 +0000 lizzywiz 2177579@https://boards.hellobee.com/ <p>She is 3, now, 37 inches and 27 pounds and it puts her into 3rd percentile. So now she is 'flagged' and I need to bring her in next month for a weigh-in. She was 28 pounds two months ago for one of our regular respiratory visits, but now her illness cycle goes canker sores, then croup attack, then illness, then post illness hives, and the canker sores are messing with her eating, even ice cream.<br /> This isn't really a 'how-to' thread- I stuff her with fatty food as much as I can, and so does daycare. It is more of a *sigh* thread.<br /> Anyway, tips for toddler canker sores? </p> https://boards.hellobee.com/topic/appreciate-good-juju-tomorrow-for-swallow-study#post-2145198 Wed, 15 Apr 2015 15:20:22 +0000 Mrs. Tiger 2145198@https://boards.hellobee.com/ <p>D goes in for his next swallow study tomorrow! Hopefully he passes this one with flying colors which would mean no restrictions on what he could eat by mouth! Right now he can only have food and thickened liquids and heavily relies on his feeding tube.</p> <p>I really appreciate the HB community's continuing support through all this! Thanks for any prayers or kind wishes you can send our way tomorrow morning. </p>