|Jul 16, 2012|
23 months w/o relief, no hope in sightMy ds is 23 months old now and it looks like there is no hope in sight :(. However he will "grow out of it", right--UGH!!! I NEED HELP. However, the pediatrician (in Coppell Texas), 2 GI services and a pediatric surgeon (in the DFW area) have only told me his "test" are normal. Actually my pediatrician has gone out of her way to help. She is great! She has even ordered test the prior GI doctor should have done just to be sure we didn't miss anything. She also saved my sons life or at least saved him from great suffering by figuring out he has a subglottic (in his breathing pipe-trachea) hemangioma when he was 4 weeks old. It was blocked 50% and his breathing sounded awful (that is another story). She knows now she is just out of her specialty and hopes the GI doctors can help us. He has had some sort of GI problem since about 5 weeks old. He (like his sister who is now 5)-has been dx with reflux, failure to thrive and MSPI. Ds symptoms have been much worse and lasting much longer than his sister’s.
**So here is the current problem I really don’t know where to go now.
Starting about the first of June he began having gulping that was more noticeable. Once even had milk come out of his nose. July 23rd that week he began drinking less and less. By July 27th we were down to sips here and there. Diapers were totally dry for sometimes 8 hours. Thank God I finally got him to drink some Elecare from a bottle while he slept (dream feeding). Saw the Pedi GI and she started Carafate 500mg (5ml) twice a day. He started drinking better in the mornings but after lunch no go. Just sips here and there. A week later increased Carafate to 3 times a day. He will eat solid food, sometimes eagerly even, sometimes ok but not bad. Especially Cheerios! He ask for those constantly. A week later, still screaming out in the middle of the day while playing, gulping and refusing his Elecare he usually drinks. Saw Pedi GI doctor again. Weight check-not much of a change. While we were in her office ds was sitting playing with a toy he loves. Suddenly he just screamed out, but kept playing. I called it to her attention, however she didn’t say much about it. Now maybe my child is just “difficult” and having behavior issues. However he was not doing this several weeks ago and it just happens to occur at the same time he won’t drink?? I don’t think so.
I asked questions like: ds has only ever been on Prevacid, and only 7.5mg twice a day. Maybe we need a new PPI (she said she didn’t think so); is there a test that can check what happens when he is eating or drinking his formula all the way down (I was thinking milk scan) she said no.
What the doctor said: She thinks this is all allergy or food intolerance. So the next day I took him for allergy testing—all skin pricks done where negative—no reaction at all. She wrote Rx for Periactin b/c it had histamine to help with food intolerances and also stimulate his appetite. (I didn’t know stimulating his appetite would help him drink, but ok I will try anything right now—I have read Periactin has helped some people).
Here are some of his symptoms he has experienced in the last 23 months
-Hasn't slept more than 1-2 hours at a time without waking suddenly screaming/crying since he was about 5 weeks old.
-inconsolable at times during the night, just kicks and screams no matter if I hold/rock/pat etc--then just suddenly stops, until the next "wave" hits--looks like the you tube video "reflux arching"
-lots of gas
-distended belly that has been better since about Feb this year
-arching back--still at 23 months old when drinks his Elecare (from a bottle-yucky stuff won’t use sippy cup for this stuff) he twist/turns kicks after about 2-3oz
-some mild eczema until about 12-16 months
-thin stools (mostly before age 1) or constipation, esp now with solids
-once he learned to walk, would be on me (climbing on me and clingy), then sudden fine to play for a few minutes, repeat
-in motion almost constantly (just like his sister who has no delevopmental delay/issues) it's like wrestling with an alligator when he is awake-wants in your lap, no wait I want down, no up..down, that had been better between Feb 2012 and first week of June.
-gulping (a few weeks ago milk even shot out of his nose--that is unusual),more noticeable in last 6 months
-screaming out in daytime while at play (sometimes inconsolable) but sometimes we can distract-WORSE in last three weeks, may take a Bubble Guppies episode-thank God for Bubble Guppies- have even used them at 3am!!
-has been hospitalized twice for dehydration and refusal to drink (first time with vomiting occasionally, but not last admit) even after Prevacid, Bethanechol, zofran.
I have never noticed obvious blood in his stool, however once he had a lightly positive occult test at the doctors office.
TEST-he has had an endoscopy x2, colonoscopy--both "normal"; upper GI showed immediate reflux and they thought maybe malrotation--repeat no malrotation but a redundant duodenum--Saw the surgeon he said it was just a "normal abnormality and that we all look different inside just like the outside". Sonogram of abd-no signs of malrotation (while there I asked the tech to check liver, galbladder and kidneys--all "normal". No he has NOThad an Esophageal pH probe with impedance or a "milk" scan
*when is he better?--the times after he was in the hospital and had not had anything to eat for 12-16 hours, 1st time he was better for several days (even slept 5 hours one night!!). This last time when he was admitted in Feb(refusal to drink) he was better until about first part of June. Now when I say better, I don't mean he was sleeping well or I was able to feed him everything in site. I just mean he could play on his own, and didn't need to be "on" me constantly and he didn't scream out suddenly while playing. It was so nice to see my child sit down and "read" a book or play with a toy independently.
Meds we started off with Zantac, added Prevacid 7.5mg twice a day, added Bethanechol, stopped Zantac, after first hospitalization increased Bethanechol, add Erythromycin to "get him eating" again (there were sure it was just a virus he couldn't get over). Stopped Bethanechol and Erythromycin b/c that might be causing cramping that caused the night wakenings with kicking, arching and screaming--kicking/screaming stopped eventually but still wakes suddenly and cries. Somewhere in there we tried Axid too. Miralax is a must with solid foods. I breastfeed in the beginning and at one point was elimanating dairy/soy/eggs/nuts from my diet. At 9 months old we started Elecare-some difference after 5 weeks, but not great. Still on Elecare. Now Carafate and Periactin with his Prevacid and Miralax. Oh, he also takes Propranolol for his hemangioma. Not much fun keeping these at least 2-3 hours apart, eat or not eat with them.
What he eats: Elecare vanilla jr formula, soids in the evening baby food stage 1 beef, stage 2 pears 1 jar a day, cheerios and pasta (regular, not wheat)-----applesauce doesn't seem too bad (but he has constipation issues too), seemed a little off with squash and maybe turkey, but not bad. I can not tell you all the combinations of foods and textures we have tires, it would take way to long. (as if this is not already too long). I have never specifically found a food that I thought boy I am never giving that again or boy that really bothered him. Seems like it is more the quantity more than the food type. However 3 days prior to the start of all this I gave him sweet potato (2 tbsp), but have not given it since. Wouldn’t he be better by now? I so just want to feed my child a normal amount.
I don't know where to go from here. What to ask the doctors to do or what to just flat out demand. I just cant keep seeing him suffer.
Thanks for you time and attention.
ds 7/2010-dx GERD, MSPI, failure to thrive-finally on growth chart above 5%!, subglottic hemangioma, hemangioma-lower lip, partiod gland, gums, tongue--well controlled with Propranolol.
dd 6/2007 GERD dx about 5 months, MSPI (thanks to la leche leader for helping me find out about this), failure to thrive first 2 years. No meds sicne June 2011, but having a few episodes reflux again in last month only using Tums as need--so far. Had been trying more dairy-postponed
|Jul 16, 2012|
speech delay toooh yes, ds does have a speech delay and facial tightness in his cheecks/upper lip. Just saw the dentist for the first time and she said his upper lip frenulum was tight. He doesn't chew his food (noodles) very well and makes a strained kind of look on his face when he swallows solid food
Thought that might be important too!
|Jul 19, 2012|
OH NO!!Have they done a Swallow Study? Have you gone to Cook Children's Gastroenterology Clinic In Fort Worth? That's where my son goes! My son had issues with drinking as well (see my profile) he had a swallow dysfunction. All my son's pH Studies were "normal" as well, but he's still on 40mg of Nexium a day because he has had/has damage in his esophagas, stomach, bowel, including stomach ulcers and that was ON MEDS. I'd love to get in touch with you!! Email me: firstname.lastname@example.org
|Jul 19, 2012|
also...I found this:
|Jul 20, 2012|
update, no improvementI did call ECI for assistance and they scheduled us for late August, but put us on the cancelation list.
Ds still wont drink unless he is asleep or maybe first thing in the morning. He cries/screams and fuss all day long. He not only wont drink his Elecare but also no water. Sips here or there. He even moans in his sleep (that is in addation to his usual sleep distrubances).
All the doctor says yesterday when I called is lets switch him to Neocate. She means the formula, but I asked if they had any splash. He wont drink the splash I know he would not drink the formula. The doctor's medical assistant said the doctor hoped the Neocate would help his pain over the weekend....... @*!*@!! WHAT!!! My 17 year old neighbhor came over yesterday and ask what is wrong with him, he is never like this. My 5 year old is crying today b/c he has cried so much and wouldn't stop. Distracting both with TV right now :(
I don't know what to do. I increased his Prevacid 3 days ago. If that were going to help, would it take a week?
What do I do now? How can I get the doctor to do something that will help NOW!
|Aug 07, 2012|
update, still strugglingUpdate: Well I increase the Prevacid=no change, I decreased and eventually stopped the Carafate=a whole lot less screaming out in pain in the middle of the day. Still very restless and clingy. Still not sleeping well (no big shock there, he never has slept), but now he doesn't sleep as long at nap time as before. I increased the Mirlax just in case he is more constipated than I think, even though his poop is never "log" shaped/hard (sorry)--at worst it is only a very think like playdough, most of the time it's like peanut butter. He will drink well the first part of the day, but in the afternoon, mostly solids. His diapers are staying wet, thank God! My pedi told me to stop feeding him Elecare at night when he sleeps and maybe he will take it in the evening--I have done this, but he still wont drink in the evenings.
Things I have wondered: Even before I increased his Miralax, one day he just suddenly pooped 5 times in one day. WHY? Not diarrhea, just 5 oatmeal-room temp peanut butter. It was like suddenly his system just turned on and things came out. He did better for a day, but then back to usual. That's why I increased his Miralax. Now, just 1-2 stools a day like usual.
I have read LOTS of info here and any other place I can find for info about food intolerances, reflux, etc. I read how people try this or that and their LO gets better (at least some or for a little while). But, ds has not responded well to anything I have tried, why?? Don't get me wrong, he has had some good days here or there. But nothing where I went, oh! I shouldn't give him that or that medicine is really helping. I have added medicines, taken away medicines, had this test, or that test, eleminated everything I can think of from his diet, only Elecare, more solids or solids that are pureed. What in the world!!! I know how to read lables, check everything twice, he has a very very limited diet, now what??
ECI (Early Childhood Intervention) is coming Aug 16th. Feels like forever. Next GI appointment Aug 22. He is asleep now, but did not have a good evening.
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