Posted By Posting
Jul 20, 2009
prekteacher
Reflux or Hypotonia
My DS has been diagnosed with reflux. This is my second son to have this. With my first one, he was allergic to milk, soy and egg. I took all out of my diet while nursing him and he responded well to Zantac and Prevacid. Now my new LO is 6 months old. For the last 6 weeks of my pregnancy and first 6 weeks of his life, I removed the allergens that my first son was allergic to out of my diet and then slowly reintroduced them to see how he would react. He reacts to milk so that is out of my diet and our allergist has me eliminating egg, nuts and shellfish as a precaution. He was diagnosed with reflux as well as laryngotrachial malcia (floppy airway) at two months of age. They started us on Zantac with no results. We then moved to Prevacid with some results but the reflux was still bad. He is a silent refluxer. We started seeing our pediatric GI at 3 months. He put us on Prevacid in the AM and Zantac in the PM. Still did not help that much. We could still hear him refluxing, he would pull off the breast screaming and he was not sleeping more than 40 min at most during the day and 1 1/2 hours at night. We decided that we should try Omeprisol (Prilosec) since Prevacid is made dissolvable using milk protein and some milk allergic kids react negatively to it. It is still not helping! Then the GI added Axid in the AM with Omeprisol in the PM. That is where we sit now and it is still not working. He is also now spitting up in addition to the silent stuff. He will only nurse 3 to 5 minutes at a time and sometimes acts like his stomach starts hurting about 2/3 into eating solids (which he loves!). He is very fussy and needs to be "messed with" all day. He is miserable! I called the GI last week and they want to do a scope on the 28. I am scheduled to see them on Thursday and I need help with questions I should ask before I let them do this on my 6 month old baby! In addition to the reflux and trachial malacia, he was also diagnosed with hypotonia at 4 months. He did not lift head until 4 months and still struggles with head control. He is not rolling, not pushing up on his hands while lying on his belly or any where close to sitting up. He also feels like carrying a large lump when I carry him. He just has no body control at all. Even has trouble sitting in a Bumbo seat at this point. I know that hypotonia can play into increasing reflux problems as well as cause problems with constipation (which he also seems to struggle with). Anyone have a baby with reflux and hypotonia? My cousin swears that all of his symptoms of reflux can also be caused by hypotonia and doesn't think I should let them scope him until I talk to someone about the hypotonia but I don't know what else to do. He is miserable, they won't do anything else without ruling some things out and I can't see the neurologist for the hypotonia until Aug 6. I can't find anything that lists these "reflux" symptoms as symptoms of hypotonia so I don't know where she is getting that. I know that hypotonia can cause feeding problems and he has some issues with fatigue when nursing and loss of suction but I don't know how it could cause the screaming I am experiencing and refusal to eat. I don't want to put him through the scope if I don't have to but will do it if it will help us get some answers. Anyone with any advice? I am grasping for any info I can get my hands on!!!
Jul 20, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
What type of Prilosec are you doing?? Is it in liquid form?? And how are you and when are you giving it???

IMHO I'd go back to the Prevacaid and get it on a high split dose every day. And give it on an empty tummy if you can.

I'd do the scope, it's a quick procedure and he will be in and out before you know it. Jedd had his done at 7.5 months old. The only reason we waited that long was our O.R. would NOT touch him until he heart was repaired. As soon as he recovered from heart surgery, we scheduled the scope. He even needed ABX after wards to protect his heart, but we still would do it over again.

I would also ask them for an Upper GI (UGI) that way they can make sure all of the structure of the esophagus tract is formed properly. That's another good test to do.

As far as not being able to life his head and such, are you working with a PT so they can build his muscles up. You can contact early intervention and they can come to your house to do your therapies.

IDK but maybe, if there is low muscle tone, that might make the reflux worse....just not sure on that one because we have never dealt with hyptonia in our house. I do know that the scope won't cause any hyptonia issues though, so I'd do it for sure!!!

By doing the scope you can get results to see if you are really delaying with GERD or if it is any other disorders that can and will mimic GERD like EOS and EE disorders or Celiac's Disease.

It can also tell you if the dose of the PPI needs to be higher. IF they see damage or the biopsies show damage, they will do a really HIGH dose to heal things up. They can also do an RX of Carafate to coat the throat and give relief that way. Carafate is like super mylanta. It's good stuff. You have to be careful with dosing a PPI and using Carafate at the same time though. They need to be spread apart at the Carafate can interfere with the PPI doing it's job.

Jul 20, 2009
mommy2k
I was reading the symptoms of your son with the screaming and not sleeping and it sounds so much like my son. He's now 7 months old and I thought that we would never get past all the cruddy stuff. We were told he had a milk protein intolerance. Nothing seem to be helping him feel better. He would eat solids and would do worse at night and feel worse. The thing we found out was that he wasn't dosed high enough on his prilosec and he also was diagnosed finally just 2 weeks ago with delayed gastric emptying. The motility drug and the higher dose of prilosec has helped him feel better. I guess the scope should help because it could at least see if there is any damage as well as test for any allergies.

I don't know anything about hypotonia though so I'm not much help in that department. It sounds like you have several things going on to sort out. I know exactly how frustrating it is and it seems even worse when sleep deprivation plays a part too. It sounds like your son is only on his ppi one time a day. Is that right? If so then I will tell you that ppi's do matabolize quicker in infants so they usually have to be given twice a day. I would also ask if he's on the highest possible dose of prilosec. It also has to be compounded properly so find a good compound pharmacy which is usually at your local childrens hospital. My son couldn't seem to tolerate the prevacid very well so that's why we switched over to prilosec. I would have to say though it was much nicer to be on the prevacid so I wish that it would've worked for him. If the meds don't seem to be working at all for him then it could be food allergy related. Have you tried to do the total elimination diet? It's the best way to figure out the true triggers. Did your son seem to respond to the eliminations you have already done? My son responded to me eliminating milk protein from my diet but then it got worse again. The other option could be trying a trial of hypoallergenic formula. It has helped a lot of the babies on here. They do taste really horrible so we had to eventually try neocate instead which is very expensive. It didn't seem to help my son but I was pumping and still bfing but just supplement with it now.

I hope that you find some answers very soon. It's so hard. I know that it has gotten better for us as he gets older. He still has his bad days like today but he has much fewer of them then before. You'll get a lot of good info on this site. Lots of knowledge an d suppot on here.

Jul 21, 2009
adelines mom
our daughter choked the first afternoon she was born. turned blue while nursing. spent the first 10 days in the progressive care nursery. hypotonia and reflux. she had poor suck/swallow too. used a japanese nipple at first called a pigeon nipple. the feeding specialist recommended it. we gave her cheek support for the first eight months while she was taking the bottle. helped to keep her latched. was on alimentum for months, thickened with simply thick. then we changed to nestle's good start and that is what she is still on now. she is 14 months and almost able to sit by herself. it is like carrying around a 20 pound bowling ball. still not a lot of tone in upper body. have been working with the early intervention group since the beginning. they have been wonderful and so helpful in showing us exercies to build up her upper body. we have tried axid, prevacid, zantac. have been on compounded prilosec for a long time now. 30 minutes before in am and pm. 3.5 ml and it does help! we just did the allergy testing last week. negative for all. i posted asking about ee. we are going to do the scope soon. waiting for the nurse to call and schedule. hope to get some answers from this test.
Jul 21, 2009
prekteacher
We are using the compounded form of Prilosec, 1.5 mg in the PM (Doc says its the max dose for his weight-only weighs about 15lbs). We were splitting it .75 in the AM and .75 in the PM but the evenings were so bad that they put the entire dosage in the PM and added the Axid in the AM. Worked for about a week. We can't do Prevacid because he reacted negatively to it. They use milk protein to make it dissolvable and since he reacts to milk, our GI took him off. I wish we could do Prevacid. We have to drive 45 minutes to get the Prilosec from a trusted compounding pharmacy! We are currently fighting with the insurance to continue getting the med from this pharmacy. The pharmacist mixes it special so that DS can swallow it due to his hypotonia and is careful not to use any flavoring that might have milk protein in it. He is really, really wonderful! We are working with early intervention for the hypotonia and have an evaluation set for Aug. 4. I am actually an early intervention teacher and teach kids with special needs (including hypotonia) but since my degree is not in physical therapy, I contacted them for help. While I think the reflux is aggrevated by the hypotonia, I just can't find anything to back up my cousin's claim that it could be causing reflux like symptoms so I am going forward with the scope. My first son had it done at 11 months and did just fine. I am a little worried about my 6 month old going under but I fully trust the medical team we are working with. They are the top pediatric GI's in the area. Thanks for your ideas and encouragement. I will keep researching and looking for answers.
Jul 21, 2009
adelines mom
a got really conjested from the prevacid. it worked really well for awhile. we are paying out of pocket for the prilosec. have local pharmacy that compounds without flavoring. insurance wanted us to use a group out of florida and have it shipped. no thank you! our new gastro doctor put her on miralax and probiotics about three months ago and they are REALLY helping. wish we had started this way sooner! have not come across anything in writing that states the hypotonia causes reflux. we are behind in speech. making lots of sounds but not talking and the ot says pretty typical with the low tone. so glad you have appointment set with them on the 4th. i ask her a million questions each time she comes. she comes to the house twice a month. another thing i thought about is that i always warm her bottle and food. think it makes a difference on her tummy. she will not touch anything that is cold!
Jul 21, 2009
mommato3
My son was diagnosed with hypotonia and has severe GERD. Do a probe. Hypotonia does aggrevate reflux b/c with hypotonia or "floppy baby" as some people call it the muscles are weak well so is the LES muscle at the top of the stomach. So when that muscle is relaxed so to speak it is easier for food to travel up and down. So yes hypotonia can aggrevate reflux. The scope revealed that my son's muscle is very laxed and is open. We began early intervention with an AWESOME physical therapist and his strenght has dramatically increased. Now unfortunately he still has reflux but it is better (still very serious though) so even though the hypotonia has been helped with therapy I believe his muscle is still weak. Also my son has delayed gastric emptying, which can be caused by many reasons as well but I was told that his tone could play a role in this as well (slow to send signals to empty or something like that). Now my son does have some food allergies as well. My oldest son had severe allergies as well (not reflux like this though). We have also seen a neurologist but there was nothing he could do except follow upwith my son and tell me physical therapy. So my suggestions would be do your scope to check for damage, abnormalities, etc. and start your physical therapy. Hopefully you can get on a proper dose of meds. Also a motility drug has DRAMATICALLY changed my son's life. And as he growths and the muscles strengthen hopefully he will grow out of it. Also keep working on the allergy stuff as this can aggrevate matters as well.
Jul 21, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I have a child with both reflux and hypotonia. The GI did not think that the hypotonia was the cause of her reflux per say. That isn't to say that the hypotonia wasn't aggrevating the problem but they certianly still recommended that she be scoped. Even if you could prove that hypotonia IS the cause of reflux you would still need to see if there is damage being done. Thus, (in our case) the scope. The scope was helpful to us in that it showed that the highest dose the pedi would give our daughter was not controlling her damage. The GI then doubled her meds.

There is no quick fix for hypotonia. :( My daughter did 8 months of PT. That having been said, today you would NEVER know that she was ever behind in her motor skills or that she had dlow muscle tone.

If you ever want to chat feel free to e-mail me and I will give you a call. RackleyFive@cox.net ((HUGS)) to you! I know how stressful this can all be.
Jul 22, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
This is JMHO and I don't mean to disagree of the dose but, it's low, really low. Jedd was on higher than that at those weights. At around a year he weighed just about 20lbs, barely, he was actually under it by about 8ounces, anyways, he was taking around 3.5cc's twice a day at that time. He maxed out at about 6cc's twice a day, I can't remember his last weight when we switched.

We always did the MAX the GI was comfortable giving him. Jedd needed it. So to me, it sounds like you have alot of wiggle room.

I'm sorry you are stuck with a liquid compound form, they are really hard to make right, but glad you found a place that makes them well.

FWIW, Jedd had open heart surgery at 6 months old when he weighed only 12lbs. He had to make it to 12lbs in order for them to be comfy putting him on the heart lung bypass machine. So, they can put them under at a young age and when they are tiny. (((HUGS))) it still doesn't make it any easier.

And I'll tell ya, multiple trips to the OR doesn't make it any easier either. We are staring at trip number 6 and it ain't no picnic. It will be OK. A scope is a really common procedure and will be done quickly.

Jul 24, 2009
prekteacher
We went to the GI on Thursday. We are going ahead with the scope on Tuesday. They also ordered an upper GI to be done on Aug 3. They threw around terms like EE, malrotation of the stomach and something to do with a sphinctor. I specifically asked about EE and the CNP that I saw said that was a definite possibility for him given some of the symptoms I was describing as well as the noted difference when I removed milk from my diet. Anybody have any advice or info about EE? I am desperate for answers but scared of what all this will bring.
Jul 24, 2009
prekteacher
Oh yeah, forgot to mention that they left us at current meds and are still claiming that is max dose. However, she did say depending on what the doc sees on the scope, he may have us taking omeprisol AM and PM or may change meds altogether. Don't know if that means they will split the current dose or double what he is on. We'll just see. Also, he is not gaining enough weight. He weighed 14 lbs 6 oz 3 weeks ago and weighed 15 lbs 4 oz on Thursday. They want him gaining 15 g/day (does that sound right?) and he is only gaining 13 g/day. She said it is close but not close enough for comfort. She said they may put us on calorie increaser after the scope. He is still decreasing amount of solids he is taking in but has slightly increased amount of breast milk in the last couple days.
Check with your
doctor first!