Still gagging, coughing, choking during some feeds

[Anonymous]

More suggestions, sorry.

Risa Kirsh — she is Matthew’s private therapist. not sure if she does infants. we see her in westchester but she has an office in upper east side… she is super busy but is so so nice… maybe she can help

Lisa Brideson-Glynn – now the problem with Lisa is that she was moving from the city to a town near norwalk… so don;t know if you google her, you will get her old or new contact details. If all fails… i have her cell phone but Risa should be able to give you her details (they trained together) if needed..

Other people i have heard about but not spoken to:

– Lauren Manheim – 9178064404 — but this person also trained with Risa… so i would not waste phone calls… try to talk to either Sara Rosenfeld or Lori or Risa

– Sarah Scharf

– Erica Gross

Don’t know anything about these 2 — other than they are SLPs focussed on feeding in NYC…

All of the people above are the ones mentioned in all the special needs boards for NY… they are all private though.

What happened to St Joes though? I am sure if you email dr eicher she would have someone from her team see you ASAP??!!

Hope this helps

[Anonymous]

Thanks Christine and Thais,

Christine-Yes, we use the solutabs as with Ian. Also, we use the dose Marci-kids recommends. She’s so little-only 6 weeks that I would hate to go above it right now. We also use Pepcid too. Did your kids cough too during reflux episodes? Just curious. Also, what a miracle you kept them both going for so long (I admire your patience)-right now, Lauren is screaming after 1 1/2 oz in dh’s arms and it’s just killing me (I have zero patience and am all about fixing things)! Part of me thinks the screaming is from pain and from just being hungry and not able to eat. We’ve even switched to Neocate because she seems to like the taste better than Elecare (however she still isn’t pooping without an enema so I’m sure Neocate won’t help).

Thais-I called all those people and talk tools referred the same ones. I’ve yet to hear back from most except one who said she doesn’t do Infants. I can’t believe it’s this hard to find an slp! I’m calling all the hospitals in the city. Children’s hospital said it’s a month wait! Her suck is getting worse with her spitting out after drinking BUT I saw it much better in the beginning so I still kind of think it’s self protection. Did Matthew show signs of good sucking in the beginning or always have a hard time? Also, I know he was on high meds but did he ever show progress or improvement after being on the 30 so early? Again, thanks for getting all those names. Oh, and Moon said they will test for dysphasia but wanted to give Lauren a week on Neocate and higher meds until doing radiation testing. She wanted to rule out reflux cough. I do agree however, think it’s a good chance she is aspirating. Sometimes it sounds so wheezy and mucousy in her chest. Does anyone know what that will mean for us if she is…..I gotta take a breath here and calm down!

Finally, I ordered Simply Thick and am waiting for it to come in until I can see a SLP. My GI has never heard of it. Does anyone know if it’s ok this young? I ask because I know it’s a fiber… My GI said she’d prefer going to a higher calorie with formula to make it thicker and make sure she’s getting enough but how thick will 4 extra calories make it?

Gosh, I really thought reflux would be easier the second time but with all of her own little issues added to the mix, it isn’t. It just never gets easier to see your baby in pain. Hugs to everyone here!

[Anonymous]

Hi there,

i am so sorry you are in the middle of this reflux nightmare.

I would definately check her sawllowed drinking problems. Kendra also choked and coghed and all that reflux nightmare in those early months. She had a Upper GI and a barium sallwed test and they din’t see anyhting. She still kind chokes on water now and we will be repeating this test next week.

Also i noticed she is on the prevacid solutab, can she be reacting to the lactose in the Prevacid? can you give Zegerid a try for while, to see if you see a difference? Kendra was just switched to see if her symptons improve.

Also doe she has DGE (delayed gastric emptying), this can make reflux symptons REALLY worst. as a matter of fact all Kendra reflux test are normal now, but she conitnues to struggles b/c of her severe DGE. You can have an emptying scan done (pretty harmless test) and medicine like Erothimin (sp?) can help. also reglan, but i would try the other one first.

I apoligize, but i did not read all the anwers posted, so excuse me if this has been mentioned already.

We started simply thick at 4 weeks old. It helped for while, (didn’t noticed any side effects)but we ended up with a feeding tube.

The thickener might help if she is aspirating.

Big hugs

kendramom2007-09-15 09:56:42

[Anonymous]

Have you tried your ped for a referral to a feeding therapist? Again, your best i believe is getting one of the feeding therapists that work with the NICU babies… your ped should know this or be able to set it up. Those feeding people teach preemies how to suck etc… so i would think it is a good start.

I know that Lori Overland does infants with disabilities… but you may need to wait for an appointment, so just make it and get some testing done in the meantime.

I can see why Moon wants to wait for a combo of meds + elemental formula. We never really saw an improvement for Matthew with the meds, so do not reallly know how that feels.

Simply thick should be fine. Babies nowadays are tested for dysphasia/aspiration early on, and their feeds are thickened. I would not concentrate her formula, especially given her motitly though.

Good luck.

[Anonymous]

Thais-our ped was useless. Every number they gave me was out of service. Where did you give birth? Do you have a phone number of the maternity ward-maybe I could call them?? I also emailed Eicher last week and no response. I’m really trying not to travel out of state for this because I don’t own a car here. Also, do they know why meds never worked for Matthew??

Thanks Leo. Can I just ask what was the turning point from ST that you had to go to a tube? Was she not eating or growing at all…? Again, just trying to do everything possible to avoid if possible. How is your daughter doing overall now? She’s a cutie. And big hug back. Thanks for your input.

[Anonymous]

Tracy,

We struggled greatly the first 7 months of Kendra’s life to get her to eat. pretty much she wouln’t suck at all on her bottle or breast. She choked, gaged, then puked. She had apnea episodes the first two months, couhped a lot and got bronquiolitis (sp?) due to her reflux.

It used to take me 1-1 1/2 hours to get her to drink 4-5 ounces of Breastmilk ( i pumped for her and also tried the elimination diet, but this wan’t enough). Then i would be finished with one feeding then it was almost time for the next!! Sometimes she would puke what have just taken me 1- 1/2 hour to get her to drink, then i would have to start all over a gain!this went one for 7 months. You can only imagine our nightmare.

I cannnot thank Christine ( and many others here) enough for lending me her ear and her great support on those days. At first our problems was indeed related to her reflux and pain.

At 5+ months she started to eat a bit better. We were excited!. She then had her 6 months shots and evrything went down hill since them. i did not know that inmunizations can increase gastric acids and she had 4 at one time!!. Also her body has to “work” hard to build up those antibodies to her shots. With all the stress she was in, i think that was just too much for her body to handle.

Our struggled got more difficlult (as if it was’nt already difficult!). Eventually she stopped eating, none of the tricks we tried before worked and she started to lose wt by 2 ounces a day. She was alreday in the 7th pecertentile so at this point i had a nerve break down at the ped’s office and a feeding tube (NG) was mentioned “temporary”. Scared to death and defeated by reflux, i agreed. It WAS THE BEST THING it happened to Kendra and my family. Yes, as “unnormal” as that sounds that gave Kendra her “life” back.

Bacause of her feeding tube, Kendra started growing and cacthing up on her milestone (she was a bit behind). At 7 months she was sitting w/o support, but wasn’t rolling over form back to front. She also had no interest in toys or playing until she got that tube. in two months time i have a different baby. We started feeding therapist and after two months she started , drinking and eating on her own!!! (not alot, but she was doing on her wown).

Our progresswas halted b/c of supected food allergies. She has gone thrugh all the reflux test and they are normal. She also had an emptying scan and it was very DELAYED. The allergist and Gi ped agreed that her main problem now is her BAD emptying. She can only tolerate 3-4 ounces every 4 hours and when she gets a viral infection or a simple illness she has to be put on coninuous feed until her illness goes away (7-10 days usually) b/c her stomach hardly works.

In conclusion, her reflux is better, but due to her emptying problem is like we have reflux stiil. She throws up a lot and can’t tolerate solids very well. the allergist told us that any solids could make her sick and umcomfortable b/c is not being able move it out from her stomach fast enough. The proteins in the food just lingers around in there. She has been tested for a lot of food and no reaction has been found except for a mild reaction to white potatoes. Iam sure she may had soem MSPi, but w/o eating solids we won’t be able to tell for sure. She also had an endoscopy and it was clear.

Now my suggestions:

1-A feeding tube is not what any mother wants for her baby, but it can be so worth it in some situation. I do not regret it at all.

the Gi Ped just told us he hopes she outgrows her DGE, if not they are a few options to consider, but will talk about when time comes.

2-GET your little one pain under contro ASP, even if higher med is needed. Kendra’s pain was not under control for a while. Maybe it would have helped a bit if she had a higher dose of med, although i can’t say for sure.

3-Definately feeding therapy is sooooo worth it.

i pray you find reflief for your little one soon. It is heart breaking to see them struggle and not be able to do much.

leo

kendramom2007-09-15 12:44:58

[Anonymous]

I delivered at Columbia — although only saw a mt sinai feeding therapist when matthew was first hospitalised. no idea about phone numbers but it seems like you have contacted enough people… i would just wait and see then if someone can help. It takes some time to get therapy evals unfortunately.

On the meds — well Matthew’s stomach is really acidic, even on the prevacid. We know that through endos + the GI people at KKI were amazed at his vomitting (consistency, 5 min after eating). His LES seems to be working fine and there seem to be no hernias (my LES does not close for example, everyone in my family has hernias)… so not sure but for some reason, the prevacid is not enough to lower stomach acids and his digestive system must have been really weak/immature or maybe, like the SLPs have said lately… his upper body is just weak/has low muscle tone… so the combination of those 2 just did not make things better and it was only time…

other possibility, and something that prob coexisted… was that it became behavioral too — so he learrned very quickly that eating=pain and maybe the drugs were working, he just was too scared to try/freaked out when he did.

Who knows… if they could only talk! When Matthew is eating and he is getting full or he is refluxing, or he gags a little bit… he will ask me for a hug. this is his way of saying he needs a break… so i give him some time and feed him after a while. maybe he just cried as a baby and was trying to tell me the same thing?

How come you are doing Neocate now and stopped the Elecare? Just curious… i already have the alimentum at home ready for this baby and have to get either Elecare or Neocate again. I was going to get Elecare this time because i heard it was slightly better than Neocate… you used Elecare for Ian… just wondering what made you switch.

[Anonymous]

Wow, Leo. Everyone’s stories are just so heartbreaking but I’m so glad it worked out for you. I’m sure her belly will catch up and she’ll be able to eat more in one sitting. Did you know from day one that she had dge issues (meaning did she always take small amounts or was she ever able to tolerate bigger quantities). I ask because Lauren was eating 4oz in one sitting fine before the 4 week mark. She’s not vomiting or spitting up either except for “spitting out” her feeds. It all went downhill after she stopped pooping. Sounds good that Kendra is growing and developing and she sounds very happy. Reminds me that my son miraculously outgrew everything at 15 months out of nowhere! I will fight for higher meds but I feel I should give it the full 14 days to kick in first. Thanks for everything.

Thais-We’re trying Neocate because the first day she was rejecting Elecare and she seemed to like the taste better. However, now after a full day, I realize she’s not eating that much either. I may try Elecare again. Especially because of her motility issues. Where did you hear it was better than Neocate? In what ways?? I’m curious too. I agree with you on breaks. Lauren will eat 3 oz over three hours but lots of breaks. I never realized how much muscle tone plays into everything. I’ll be really surprised if she’s weak in her upper tone because the girl is already doing push ups on the floors-she seems super strong to me but who knows? How are you feeling btw? At least the weather is a little cooler??? One good thing about this stress is I already lost the baby weight!

[Anonymous]

Tracy,

no, i did not know from day one wether she had DGE issues or not. She started out sucking on the breast fine, until mature milk came and then the choking began. She drank 4 ounces, really fighting her the first 4 1/2 months. She then started drinking up to 6 ounces around 5 months until she got her shots ( i mentioned that before). Then just things didn’t go well after that.

Getting treatment/ test done ASP in my opinion could really help our reflux babies and the outcome could be very positive. It was/is my first time dealing with reflux, so i did not what do, or what to ask for.

You said she does not vomit a whole lot; She could have silent reflux, which is more painful as acid is being passed through the eshopagus twice (going up and coming back down). I hope that helps.

Leo

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