BabyLiam is losing weight and vommiting alot on regalin and pepcid meds make no diff i would like anyone that can give me some feed back that is going through this he is 20 months old and is 13 lbs Hospitelised at the momment after a rutine visit at high risk clinic they felt he needed to be admitted for failure to thrive he is on boost essentials 1.5 even feeding him through his g tube he is very sensitive and will gag and puke after feedings or even way after even in car rides . need more info on this cause and if anyone can offer any solution
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Boy, I don’t know what to say. Kendall was throwing up 3-4 times/day and she grew out of it. We slowed down her feedings to a trickle and fed her all day long until she started stabilizing her weight. We would give her 30mls/hour and gave her prevacid at the same time. It took time, but she snapped out of it. Lauren Ulrich may have some clues for you as she seems to be on top of this kind of thing. Try her at laurenuhrich@comcast.net.
Mia used to vomit all the time. When they did her g-tube they also did a nissen to stop the reflux. She has not had any since and is not on any meds at the time for it.
We have been through the same thing. Riley has a g-tube but the doctor opted not to do a nissan, looking back I wish we did it. Riley was vomiting 3-4 times a day initially, but now she only does maybe 1-2 times a week if even that much. Riley is on erythromycin for gastric emptying, but what we have also found to help is probiotics. There has been research done that shows probiotics aid in digestion and speed digestion, which helps reduce vomiting. We use Udo’s infant probiotics and just add the powder to her feedings twice a day. Maybe something to try.
I want to say thank you for all the feed back baby liam was just put on prevacid and regaling since tuesday the vommiting did decrease but it hasnt stoped on friday evening he had a major seizure was little over 25 min they gave him diestat 4 times and finally with a stronger medication that was administered in 7 min he stopped seizing . They have found he didnt have his kepra in his system with all the vommiting .I was notified today he does have a pretty bad neomonia since he vomitt while he was seizing and asperated some . so he will be in the hospital until he gets better . I just feel very fustrated he is an a very good well known hospital and i feel drs just want to do anything to make him gain weight i asked the GI is she upgraded his feeding to a healthy child his age or to children his age with whs . And she said to normal children his age . They are over feeding him that while he still eating he start to gag they went from 80 ml 7 times a day and 4 oz of baby food. To 150 ml 8 times a day 50 ml of water 8 times a day and no other food whats so ever. I love my child and i would do anything to make him feel better but when i speak up or i dont agree with the treatment they threten me with reporting me with cps for neglecting medical treatment . I had enought this is my child and im going to make sure i can make him happy and grow at his own pace not force his little body to grow at every other healthy baby does . So im researching for a primary care doctor with knowlege on the syndrome and knows how to care and follow up We live in southern California if anyone knows of a good specialist please respond thank you Im very upset with the care of my baby so sorry if i sounded mean . But Baby liam is strong and i will always be there for him i dont see any problem with my liam I just want to make his life better and i will always do that.
Emma is on prilosec for reflux and it has been helping a lot (though we are currently trying a slow wean to see if she still needs it). I wanted to comment on the weight gain. When Emma got her G-tube the dietician kept upping her calories and she became overweight and her pediatrician called and had the dietician decrease the calories so that her height and weight would be more proportionate. Have they told you what his weight to height ratio is? From what I understand that is a much more important number than just how many pounds they weigh! Thinking of you and baby Liam! I hope he recovers quickly! It sounds like you are doing a wonderful job of doing what’s best for your little guy!
Brenda,
Where are you in SO. Cal. We live in the LA area and have a great Pediatrician. Feel free to e-mail me personally if you wish, I would be more than happy to help you.
Kristyfisher79@yahoo.com
🙂 Kristy
hi shannon and thank you for your reply well i know baby liam hasnt gained any weight since march and at that time he was 16 lbs but he was on HCTH injections for his spasms so we has very swollen. and since then he has lost weight. I want them to find a medication that can control his vommiting first then we could focus on the formula . They did the acid reflux text where they put a wire like thing down his nose yo his stomach but they said his reflux was normal. today was alot better than yesterday his neurologist has taken over his care now and i truly love her she understand s my concerns and explains her plans and steps before doing anything . Baby Liam is doing better today he is in antibiotics for his nemonia he had a very long seizure and vommited and he asperated his puke and he developed asperated nemonia it can be very bad. i have learned that growth charts for infants should not be use for children with whs . the is a docter that in 1990s developed a specific growth chart for children with whs base on their growth rate and gestational age . even children with down syndrome have had their own growth charts for years. I will be taking a printed copy to Liams doctor im hopping he would aknowledge it and hopefully use it. Baby LIam has fallen of the charts for almost 10 months, They have said his head is no longer growing. So I was wondering if anyone knew of these charts i found them in emedicines there is a pretty good new report and some rare cases of whs if interested ,