Gavin's ultrasound of his pyloris came back normal. We now know for certainty that Gavins DGE is due to weak stomach contractions due to low tone. Gavin is not bad off enough for us to consider enlarging an already normal sized pylorus so his food could move through faster. The odds are that instead of moving slow, it would dump---and that is trading one set of problems for another if that occured.

He is doing okay so we are going to just keep taking one day at a time.

I may be flying out to Canada soon to get domperidone--LOL--seriously though, I would do what I could to get that med if he stopped gaining, so we'll see. Did you all know it is approved in 80 countries across the world, just not in the good old USA?!

ON a bright note, he started walking! Right when he turned 11 months, he started toddling all over the place! What speed he does not have in gastric motility and weight gain, he makes up for in development. He is speeding right along-- walking at 11 months legs and says 6 words!!! My daughter didnt say 6 words until she was 2!!!!!!!!!!!!!!:wink:

Anyway that's the update. Chelsea has a ph study next but dont know the date yet.

That's great that his pyloris is normal. I was thinking of trying to get some domperidone as well since the cisapride might take a long time to get. Wow so exciting that he is walking

That is so awesome that he's walking...and talking....I bet you feel so proud that he IS more advanced than most babies his age without "internal issues". I have a 5 month old saughter who doesn't do 80% of what babycenter.com says she should be doing. Our delayed learning, as many other mom's on infantrefluxdisease.com will agree, is thanks to reflux. Your little man is exceptional...and I pray that my baby may one day soon, be as strong and determined as your's is.

He's gorgeous by the way...
Ginette

WTG Gavin, glad his develpment is doing so well thats great. Maya was on Domperidone for a while and it didn't do anything for her, but I don't even know if she really has DGE she has never been tested and now takes no motility drugs. I do know that here Cisapride is considered the gold standard except becuase it caused some heart problems in a few children it was pulled, something a lot of Peadiatricians here think was a big mistake. But you can still get this if a EKG is performed and is OK. But the manin thing is that Gavin is doing well.

Thanks for the info on Cisapride, that is good to know. We would consider both if needed, but my ped is more for domperidone, she has her concerns about Cisapride as well. We have agreed to not do Reglan at all--neither our ped or Dr Ament at UCLA thinks we should do it but says we can if we want to. My hubby is against it since seeing what it did to Chelsea. After everything I know about it, I agree.

Ginette--my daughter was very delayed in most everything. She is 4 now though and right on target. Many babies with reflux experience multiple delays but rest assured, Chelsea at age 4 is all caught up! She can already read a little and talks my ear off--even though she didnt start talking til age 3. She doesnt go to school yet or have therapy either, I just play with her and talk to her and read to her--just do the same and she will do just fine! They develop when their body is ready too, some just take longer than others. But hang in there because it will get better!

Yes Gavin is the exception--he blows me away--he can almost jump and it is the funniest thing to watch! Can you imagine an 11 month old standing without holding on to anything trying to jump up and down? :smt026 I swear he looks just like this blue guy without getting nearly as high. But he flops his arms up and down and everything--how does he know to do that?!!! He thinks it is so much fun--Chelsea didnt jump til she was at least 2--ha! they are so different!

Great that Gavin's pylorus is good. I wonder if his motility will improve with age? I sure hope so! Surprising that the US does not have domperidone though. I can not believe that Canada actually has something you do not. Is there any way you can get it via mail order or such? Plenty of online ordering companies springing up. We wish we could get the prevacid solutabs here but only the capsules yet. Soon to be available they tell me (that was for January mind you!).

It is so fascinating how reflux plays so differently in each and every child. Amazing how far ahead he is in developmental milestones! You must be so very proud of Gavin! Iain just started to go up stairs using the handrail now instead of crawling just about a few weeks ago (he is 26 months old). He only does this on and off now but it will come. He is so strong now and only started to crawl up stairs when he was around 19 months old anyway, so we are progressing. He is truly not way behind in things other than some fine motor and speech now. It is amazing to hear that Gavin is saying 6 words! How exciting for you!

It is a relief to hear that Chelsea is on target now at age 4. It is so very worrisome to see your child so delayed and wonder if it is ever going to subside and allow the child to catch up. Thanks for sharing that hope for others on the board.

That's good news!

Carla, here is some information on the reasons that Cisapride/Propulsid was pulled from the market in the United States in 1999. In the spring of 1998 the FDA strengthened the warning about the heart-valve problems associated with it, by July 1998 it issued a stronger warning and by early 1999 it was pulled. Over 36 deaths related to the medication were reported in a relatively short period of time as Cisapride was rapidly becomming the most popular drug for treating motility issues associated with reflux. Some of the deaths occured without warning. At first the FDA was unsure why the deaths occured and later it was found that it caused electrical conduction problems in the heart valves resulting in deadly arrhythmias. Cisapride was also suspected to react with other prescription and non-prescription medications and it was difficult to determine exactly which medications and what the reactions were.

It was a very scary time for those who were using Cisapride b/c the warnings came so fast and were so dire. In a matter of months you were required to have routine EKGs to take it then pulled very quickly. Ali was on it. It was prescribed by her GI who was very respected and I trusted right when she started seeing her. No tests for DGE were done, it was almost standard practice to use like Prevacid is and for some Pediatricians, Reglan is now. Her GI took Ali off of it when the recommendations for routine EKGs was issued and Ali began vomitting a day's with of undigested food and her feeding and weight went downhill again. We never tried any other motility medication as we refused Reglan (our GI had never suggested it but we refused the ped's suggestion). Again, Ali has never been tested for DGE but I am sure she has it to some degree. She can't handle alot in her stomach at one time, does better with small frequent meals and not eating and drinking at the same time.

Just some more information to help you make informed choices about Gavin. Hope he continues to delight you with his development, jumping and all.

Carla,
I am so glad he is stable for you right now. I know how frustrating it can all be. I can't believe he's big enough to be walking already. Time flys !!!!

I know Katy, it seems like yesterday that I was emailing you in his first few months of life. Have we been writing that long already???!

Pam, thank you for that info. Our ped doesnt want to try cisapride either and after reading your explanation I can see why. There is a ped at our local childrens hospital that rants and raves angrily about cisapride being pulled but he is also one of our docs here in orange county that prescribes reglan to premature reflux babies like it is candy. That was my first clue that I may not want to try cisapride. I am not comfortable giving him meds that have *known* potentially harmful side effects. I am hoping and praying that we dont come to a place where we are forced to consider more meds because erythromycin is the only one we are confortable with--and we already tried it!

Pam, do you know anything more about domperidone and which docs in the US can get it?

That is good news. And, wow, about him walking and saying 6 words!! I am sure you are frustrated that you can't get the meds here....

Thats great that his ultrasound is normal, Carla. I'm lost when it comes to emptying problems, so I don't quite understand what he's going through, but I'm happy that he doesn't need a procedure.

Isn't it the most amazing thing to see these BABIES toddling around? Noah is walking now, also, and its funny to see him upright after so many months of being on the floor. Six words!?!?!?!? What a little genius? Which six are they? Noah only does mamma and dadda, which are actually mumumu and dada-dada, lol.

I wonder if hippotherapy would help. Daniel was considered to have low core muscle tone, and he's gotten a ton stronger since he started riding a horse once a week. He works with a speech therapist.

I am sorry Carla but I don't have much info on domperidone nor do i know any doctors that routinly prescribe it. But I will ask the PAGER volunteer coordinator and see if we a volunteer who has experience with it.

Shae was on cisapride just before it got pulled as well. It worked great for just about a week and then stopped. Her ped told me that the heart problems it had caused were mostly in the elderly, but I'm not sure where he got that info. I didn't ask anymore questions since Shae was taken off after it stopped working anyway.

She was also on domperidone briefly (we're in Canada). It didn't do much of anything, but to be fair, we weren't even sure it would since she had the j-tube at the time. Her ped didn't know much about it's affect on intestinal motility.

Thank you for all the replies! Let me try to remember everyone's questions now!!!

Erin--yes very frustrating! I wish UCLA had it, I am going to ask why they dont!

Maggie--he says mama, dada, dog-dog, uh-oh, more, and his newest word is Elmo! Of course he does not pronounce them perfectly, but we all understand him (my hubby, daughter and both grandmas!). Seriously, Chelsea didnt say this many words til she was 2 and a half. This is fun! He says mama for everything else and says it just about every second, he really doesnt ever stop "talking"!

Becky--did Daniel have officially low muscle tone--in other words in the abnormal range? Gavin's tone throughout his body (what we see on the outside) is in the normal range but on the lower side of normal. Our ped doesnt really count it as much because he has met all gross motor milestones early and as a result didnt qualify for any PT. When he was evaluated by a PT at age 8 months, his gross motor scored in the 11 month range! He has feeding therapy with an OT, perhaps as he is older we can work sensory therapy in that. Is that what he is getting? My friend's son does sensory therapy and rides a horse. What is hippotherapy????

Pam- I would appreciate you looking into that with the other volunteers. Thank you so much!

Roni-I have thought about you and Shae lately. We took a few steps forward and discussed best and worst case senarios, and given Gavin's circumstances actually contemplated that a jtube would be better than a pyloraplasty IF it ever got that bad. I would love to read more about your story including how she is now. Thanks for sharing the info with cisapride and domperidone. Our ped is going to look domperidone more.

I hope I didnt forget anyone! He weighs in tomorrow, crossing fingers that he gained weight!!!

Becky--did Daniel have officially low muscle tone--in other words in the abnormal range? Gavin's tone throughout his body (what we see on the outside) is in the normal range but on the lower side of normal. Our ped doesnt really count it as much because he has met all gross motor milestones early and as a result didnt qualify for any PT. When he was evaluated by a PT at age 8 months, his gross motor scored in the 11 month range! He has feeding therapy with an OT, perhaps as he is older we can work sensory therapy in that. Is that what he is getting? My friend's son does sensory therapy and rides a horse. What is hippotherapy????


Actually, D's muscle tone was also called low-normal, but actually I didn't let it worry me too much since that was based on him slouching (i.e. trying to get away from the food) in a high chair. However, he did seem much stronger after a month or two of hippotherapy.

So what is hippotherapy? For Daniel, it's working with an ST. She puts him on the horse, and they do such things as rubbing a sucker on the inside of his cheeks and tongue, playing with play dough, telling the horse to go and stop, etc. So some of it certainly is sensory. They also put him in a variety of positions (forward facing, rear facing, sideways) to strengthen different muscle groups.

Daniel loves it. I really don't know how much he's benefitting from it, but it's part of his early intervention program and costs us nothing. And I love the hour I spend reading in the waiting area.

Carla -

All types of therapy - OT, PT and ST that are done in conjuction with horseback riding is called hippotherapy.

Some kids that I know who have had it do demonstrate increased torso strength as a result of riding.

Thanks Pam and Becky. So did Daniel qualify for the ST through early intervention for feeding therapy only? Or did he have other delays that gave him the hippotherapy? Gavin qualified for feeding only through and OT but I wonder what other services we can get through this. I havent been worried about Gavins tone either because he has been developing right on target with everything except for eating and our ped does not consider it to be a problem at all. One thing though is that he refuses to hold his own cup or bottle (even though he can) and I dont know if he is lazy and stubborn or if it really is too heavy because he feels light as a feather!

I think I will ask the OT when she comes on Thursday about this hippotherapy.

thanks for the update. Eliana walked at 12 1/2 months and still is talking yet. see my siggy for her diagnosis. Eliana see's a ST for speech and feeding and an OT for fine motor (which she doesn't need anymore) and feeding. keep us updated :hello2: