Just can’t get it right….Simply Thick??

[Anonymous]

Hello everyone,

I am so glad to have found this board. As I write this my 7 week old daughter is in the hospital. My husband is there with her as I have to be home with our other two children. I feel awful and helpless being home without her.

My daughter has terrible reflux, laryngomalacia, and has to have her feeds thickened as she aspirates her feedings. My problem is that we just cannot seem to get things right for her. We were thickening with rice cereal and it just wasn’t going well for her. It made her reflux worse and she grunted and was gassy and upset the whole time. We were then put on a thickener called simply thick and her gassiness and fussiness greatly improved but she has again been choking on at least one feed a day. They said that the Simply thick has a “slimier” consistency than the cereal and that may be why she isn’t doing as well on it. I just don’t know what to do and feel so helpless. The rice kept her from choking but she was miserable in other ways. The Simply thick is much better on her stomach but now she is choking. They are observing her in the hospital for much louder breathing today and horrible episodes of reflux where combined with the laryngomalacia she was having a hard time catching her breath. She looks so scared when that happens and I just panic. I should mention that her older sister also had feeding issues and laryngomalacia and her older brother had reflux and tracheamalacia. So we have been down this road before but she is by far the worst. So sorry to be long winded. I just really need some advice. I feel like I can’t make it right for her. Anyone have any thickening advice or suggestions?? She is on Prevacid and Zantac and also takes Pulmicort Nebs.

Thank you!!

Sarah

[Anonymous]

Sarah

I cant imagine how scary it must be for you with your little one in the hospital. Has she had a swallowing study done? I have seen others post that at a swallowing study they determine the level of aspiration and then work out the right consistency of simply thick that is required. I think a speech therapist does these tests. I would definately stay away from rice, it causes alot of babies to have gas, cramps and constipation. Oatmeal might be a better alternative. In Australia we use a thickener called “carob bean gum” not sure if you have thickeners in the US with that in it. Hope things improve for you soon, the people on this board are great and will give you tons of support.

[Anonymous]

Sarah, that is exactly what happened to my daughter at that age. We did the swallow study to find out what consistentcy would help her. We are on the nector ST and we also thicken with oatmeal. While in the hospital, we insisted we talk to a pulmonologist (sounds like you have that taken care of though) we asked for an ent, but I had to find one on my own.

Also, they were compounding the prevacid wrong in the hospital and giving it with the zantac. The nurses wouldn’t listen! The prevacid needs to be given 30 mins before a meal and then activated at the 30 min mark with a bottle. And the zantac needs to be given 2-4 hours after the prevacid or they cancel each other out. This may be useful info for you to take back to the hospital.

Did they get her a sling and wedge and place her to sleep on her tummy? I had to fight with them about that too. Ask for the sling and wedge and an apnea monitor so you can go home all prepared.

I have been where you have and I send lots of hugs to you and your family. I know how scary it can be!

Ohh, just a thought to help get the reflux under control. I didn’t know that some babiew were intolerant to milk and soy and that it makes reflux episodes worse.

[hellbennt]

hi & welcome!

it sounds like you’ve got your bases covered, but here is a link chock full of info to help you- it’s long & probably overwhelming, so just scroll through, mark the page and come back to it as needed: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;am p;am p;PN=1&TPN=1

~laura

[Anonymous]

So sorry about your baby being in the hospital. I wish I had more advice, except to say that I, too use oatmeal to thicken and it’s worked very well for both of my babies who have had reflux.

I’m glad you found us. The women here all have so much support and advice to offer.

I hope your little girl comes home soon and that things improve soon for her. Hang in there.

[Anonymous]

My son has/had Larygomalacia AND tracheomalacia and massive reflux. Make sure you daughter lays on her side or stomach! My son would gasp for air if I laid him on his back, it was hard for him to keep the ‘floppy airway’ open on his back – they thought he was having apnea episodes, but he would be fine on his side or back (he slept on his tummy until he was 21 months old, and now he still prefers his tummy, but will sleep on his back too).

The thicker the formula, the easier it is to get down the right tube and not aspirate. Also, my son had to be fed completely upright with his head tilted way back, facing the ceiling. Prevacid works – a high dose twice or more a day – ZANTAC DOES NOT DO THE TRICK! Zantac only blocks acid, Prevacid cuts down on the amount of acid produced!

For the formula, I would try the nutramigin (? – it’s discussed all over this board) with the rice cereal added. Milk is very hard to digest and I think that the high acid levels in the stomach (from the reflux) make it even harder to digest the milk. My son only drinks milk with acidophilus added (a good bacteria that helps with digestion) – he wouldn’t drink soy milk either. Yesterday at daycare I didn’t bring his “special milk” and the daycare said ‘by law she had to give him milk twice a day’ – you could smell it fermenting in his stomach for 12 hours later!!! Rotten breath!

FYI: the prevacid and the zantac have to be given at least 4 hours apart, or they will cancel each other out.

Please feel free to e-mail me if you have any more questions about the ‘malacias’ – I know all about the choking and gasping – it does get much much better after they start sitting up and their tummy muscles get stronger :o)

[Anonymous]

Thank you all so much for your replies! My daughter did have a swallow study..she aspirated almost immediately. They then thickened her feeding with the Simply Thick (honey consistency) and she did fine but they only let her have a few sips because she drinks so FAST that they thought she already had too much of that barium in her stomach so they didn’t watch her nearly long enough. They sent us home with the Simply Thick and Avent bottles with the variable flow nipple. Even with the 1 under her nose it was pouring out her mouth and she was still choking. We are now on the Vent Aire bottles with stage 2 nipple and it’s much better but she is once again choking on at least a bottle a day. It is so scary and frustrating. I feel horrible saying it but I dread the feedings as the choking scares me to death. That look of fear in her eyes just kills me.

I had no idea you could not give the Prevacid and Zantac together. I called my doctor about that today and her nurse called back and said it was fine to give them together???? She seemed to know nothing about that and I am so confused on that as well. My son took Zantac and it did nothing for him. My two girls have been on Prevacid and that has worked so much better. The dr. added the Zantac as my daughter still was so uncomfortable. It is hard to know how it’s working as we seem to have formula issues as well and I don’t know what to put her on. We did try the Nutramigen and it did not thicken right at all with the ST. Has anyone else had this problem??? Maybe I should try that thickened with oatmeal but not sure if I should make both of those changes at once. She does have diarrhea all the time which my dr again didn’t seem that concerned with but that doesn’t seem acceptable to me.

For those of you who had your child sleep on their stomach…they told me this time they could not recommend it because of the whole SIDS Issue. All I know is the only way she sleeps is for us to sit up and hold her upright on her tummy all night. We get no sleep and are exhausted. I feel terribly for her and know she is so uncomfortable but some sleep would be nice!! It’s hard to also deal with a 5 and 3 year old who fight a lot when you haven’t slept in a few months!! We do have the sling for the crib as both of our other kids slept in it but she won’t sleep in it on her back. Marsha, I know exactly what you mean about the gasping for air. It’s awful and that is what my daughter does as well.

One more question…what is the Alimentum formula that I see people on here use? I haven’t heard of that one!

Thank you all so much for your help! It so helps when I feel exhausted and like things will never improve. We went through this with the other two but this time is so much worse.

Sarah

son 5-4-00 reflux, tracheamalacia

daughter 6-25-02 reflux, apirator, laryngomalacia

daughter 2-6-06 reflux, apirator, laryngomalacia

[hellbennt]

An overview of available formulas: https://www.infantreflux.org/forum/forum_posts.asp?TID=4394&a mp;a mp;a mp;a mp;amp;PN=1&TPN=1

Zantac & PPIs: https://www.infantreflux.org/forum/forum_posts.asp?TID=546&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=dr+philips&PN=0&TPN=1

excuse pronouns here- I’m copying & pasting:

This is from the American Academy of Pediatrics & how they recommend that tummy sleeping is best for GERD babies. http://www.aap.org/new/sids/question.htm (thanks Sherry & Christine!)

There’s a monitor that you can use called the Angel Care Monitor that many of the parents on this board have had great success with. Jonah was sent home with a monitor from the hospital, so I don’t know firsthand about the Angel Care monitor, but here’s all about it: https://www.infantreflux.org/forum/search.asp?KW=angelcare&am p;SM=2&SI=TC&FM=0&OB=2

BEANIE BABY: for day time naps I suggest this: Try putting her on her tummy & put a beanie baby on her back for 2 reasons- to see that she’s breathing (the beanie baby will go up & down )

& for the weight- put your hand on her back & then slowly leave it & the beanie baby is there instead…

For sleeping, there’s also the Tucker Sling that people rave about: https://www.infantreflux.org/forum/search.asp?KW=tucker&S M=1&SI=TC&FM=0&OB=2

as well as the Amby Hammock: https://www.infantreflux.org/forum/search.asp?KW=amby&SM= 1&SI=TC&FM=0&OB=2

[Anonymous]

Here’s a link explaining the interaction between the two drugs:

A special note—never use H-2 blockers along with PPI drugs. This is because the H-2 blocker will prevent the PPI drug from working. It is ok to give a PPI drug at breakfast and supper and then four hours or more later at bedtime give an H-2 blocker. But this is not together. http://www.marci-kids.com/treatments.html

[Anonymous]

We are going to split up the Prevacid and Zantac and see how it goes. My dr called today and said she talked to her pharmacist friend who said it was fine to keep giving them together??? We will still try and give them separately as it seems there is something they just don’t know!!

Heading to my daughter’s breathing specialist tomorrow and hoping we can get an apnea monitor so she can sleep on her stomach. The Amby bed looks interesting but I am not sure I understand how it works and is safe once they can roll over.

Thank you everyone for the advice and all of the links. It has helped a lot!

Sarah

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