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Looking for anyone with similar issues
My daughter is just about 2.5. She has struggled with GERD since birth, has DGE, sensory issues, is hypotonic, speech/gross motor/fine motor delays (gets PT/ST).
Our main concerns are her ongoing GI issues and I would love to find someone who has experienced symptoms similar to hers. We need answers.
She has been FTT since she was 9 months old. Per her GI, we have never given milk or soy. She has had obvious reactions to at least 10 foods (broccoli, strawberries, carrots, etc) However, RAST & skin prick testing is all negative for everything. She receives the majority of her nutrition from Elecare. She still takes a bottle (with the blessing of all her therapists & specialists)
The strange part is, she will eat ok for a few months. Then she will start to become irritable (extreme) and exhibit self-harming behaviors. She will also begin waking at night crying. A few days after those symptoms begin, she stops eating & drinking almost completely. We rely on Popsicles for hydration as she had a seizure induced by dehydration at 17mos.
After a few weeks of poor eating, sleeping, behavior, the symptoms will fade and she will start eating again. This has been happening every few months her entire life.
We feel these episodes are pain-based, but her GI assures us that her GI conditions are controlled with her various medications and that she only suffers from feeding aversions. (She was scoped at 15 months and had inflammation of her stomach &colon. Her colon also had a "mild increase of eosinophils" - our GI insists the eos is from her GERD.)
Has anyone experienced waxing and waning GI symptoms similar to this? Any idea what this could be?
Thanks for your input and sorry for the novel.
This discussion has been closed.
Re: Looking for anyone with similar issues
She had her upper GI at 2 months and that's when the delayed emptying was noted. No emptying study though, not that I haven't asked.
She is on Eryped for motility.
I'd consider requesting a swallow study as well. If she is having "feeding aversions" there might be reason. She might be silently aspirating. If not, at least you can rule that out.
With all of her difficulties, have you seen a geneticist? Has she ever had a cranial MRI?
I know I am throwing a lot of things out there, just trying to get a better feel for your child's history so I can contribute ideas based on our own experience and those of some other "feeding issue" kids.
It sounds like it hurts her to eat. When I read through your stuff that popped out to me several times. Perhaps because the GERD is not actually as "under control" as the GI thinks or maybe because she has something like EE. DD also has a ridiculous number of allergies/sensitivies (all of the main 8, plus a ton of additional fruits and veggies). We can NOT give her elecare or the "hypoallergenic" formulas, because she has horrible reactions to them. Instead we do a blended diet through her g-tube, which we periodically have evaluated by a nutritionist to ensure that its balanced. We believe that DD has EE. It was documented in some early paperwork that we read when she came home to us, but have not been able to get a copy of the test results and don't want to put her through an endoscopy and/or colonscopy because of her other issues (sedation is a much bigger deal with her than typical children), but DD does have a history of several other significant GI issues--which have required surgeries, but will never be fully "repaired" even with those. DD also has severe self-injurious behaviors. We attribute them to a few different main causes, one being the pain from her GI issues.
I'm not sure if this is common or not, but DD also seems to go through better and worse spots with her allergies/sensitivies. We've started to notice a correlation with the seasons and time of year. The other line of thinking we've heard to explain this is that some of the allergies are more immune system related (DD has an immune deficiency) so based on where her immune system is at a particular time, she will get better or worse.
I wonder if finding a holistic nutritionist might also be of some help to you. We've seen Kelly Dorfman with one of my daughters and had phone consults with her for my other daughter. She was very out of the box compared to the other nutrionistis/dieticians we'd seen, but she really "got" the EE and allergy side of thing and was able to draw amazing connections between how we could change her diet to help with development. She calls herself a "food detective" and I'd say that this is pretty accurate. Even a one-time consult or browsing through her books might offer you a different insight than you'd receive from a more conventional medical team. Dana Laake is of a similar background and also very well respected in helping children with complex diet/feeding issues. The other route you may consider is adding a feeding therapist to your team. Suzanne Evans Morris is a very well known feeding therapist who's written multiple books and does long distance set ups. You can typically find local feeding therapists through a feeding clinic associated with a children's hospital or through ASHA's website (the organization who credentials speech therapists).
How "off the charts" is your DD's weight?
I know that's a bunch of stuff to throw out there. DD has multiple issues that all compound the issues of weight/diet/eating and some of them may or may not be the same issues that your DD has, but hopefully one of those things will help give you a starting point to look for more insight. And in anycase. We're here any time you just need moral support or a place to vent. Keep us updated with what you find out.
Thank you so much for your replies! I truly appreciate them. I'm on my phone, so forgive my errors and lack of quoting.
She had an informal swallow study done by an SLP. They didn't notice any structural swallowing issues. She has not had an MRI. She almost had one after her seizure but she ended up perking up and they didn't see the need. She did have a CT scan & EEG - both normal. We do have an appt with genetics this fall and are currently seeing an Endo who doesn't think her issues are metabolic.
As far as the GERD, we have seen remarkable changes since switching from Prevacid to Nexium at 1. She recently had an impedance that showed she was still refluxing, but it was not acidic.
I too feel her issues stem from pain/food. We did attempt gluten free on our own, but then she didn't eat any of the "substitutes". As far as her weight, she was at the 2nd %ile when dx'd FTT. She is currently below the 1st - 21lbs at 29 months. She has not moved up in the charts in almost 2 years. Her weight for length is below the 3rd, but height and head holding steady around 20th. Her size isn't our main concern. We feel if we can figure out the pain, the weight will work itself out once as feels good enough to eat.
Thanks again for the help. It's great feedback to know if we are pushing in the right directions.
My son is 21 months old and has severe DGE and reflux. We've recently switched him to nexium from prevacid and it does not seem to be helping. We go for a scope next week. He's back to waking up crying in pain at night. He eats very little and has a gtube.
We are constantly fighting to get him to gain weight and grow. My email is beyoga@gmail.com if you want to email me.
I would agree that an appointment with genetics would be helpful-- Does her lack of eating seem to be related to appetite? or is it more texture of foods bother her? she feels sick/hurt while eating? etc. I think pinpointing what the actual problem is would be helpful in treating.
If it is appetite related has your GI ever brought up trying an appetite stimulant such as periactin (cyproheptadine)? Its actually an anti-histamine that has a side effect of appetite stimulation. I know quite a few families who have had some success with this. If it is something your GI might want to try make sure they do a gradual progression of the dose- many times this is prescribed without a lot of info about how to best dose it to your child for maximum efficiency since it is being used off-label when it comes to appetite stimulation.
If she has actual problems w/ food (textures, flavors, etc.) I would make sure to get her into some sort of OT- I've found that many times kids with eating issues/allergy issues also have some sensory issues that can compound how difficult mealtimes are. Many times a few changes in your mealtime routine can really help. I know you said she also has sleeping issues and can have self-harming behavior-- it sounds like there might be sensory stuff going on that you dont realize (sensory stuff can be so tricky to spot!) Have you also looked into a behavioral interventionist?
If it is pain/sick while eating I would ask your GI for updated tests to do be done: barium swallow study to see how much and how far up she is refluxing/check for aspiration, a gastric emptying scan so you can see just how delayed her emptying is and to check and make sure the lower GI is functioning properly. I would also ask pointed questions about the possibility of eosinophilic esophagitis being a possibility. Has she ever had a scope done to check for this? My nephew has EE and my sister just told me about a few recent studies that have been done that show how inaccurate and ineffective scratch allergy tests can be for detecting true allergies. Case in point, my nephew was told he was NOT allergic to a variety of things based on scratch tests but later found (via large number of eosinophils on his scope) that he was actually quite allergic. Apparently this is a common occurrence-once the proper eliminations were made he was feeling MUCH better.
I know you said she was seen by an SLP- is her SLP specifically trained in feeding therapy? I know when we were assigned an SLP through EI we were told that there were very few SLP's in the area that actually had special training and a lot of knowledge when it comes to feeding. While all SLP's probably have some suggestions, getting one that really specializes in it is key! Are you in an area that has a major children's hospital around? Many children's hospitals have feeding clinics that might be worth trying to get into. Our son has been seen by the feeding clinic at Cincinnati Children's and each visit involves his GI, a GI nurse practioner and nurse, SLP, OT, nutritionist and social worker. Its really nice to have a one stop shop of all practioners who specialize in feeding issues. Hopefully you can find some help! I know how incredibly frustrating and exhausting feeding issues can be- hang in there mama!
DD had severe GERD that required several trips to the hospital. She had the GI series done, which confirmed the diagnosis of GERD. She was put on Nutramigen, in addition to my breastmilk (I was dairy/ soy free). She was on Axid. She would seem to get better for a few weeks and then things would go downhill.
Finally, a scope revealed esophogeal ulcers. She was in so much pain that she "forgot" the proper way to eat and required a swallow therapist to reteach her how to eat properly. It was intensive work, but she is 9.5 months old and has improved 99%. She still spits up often and requires a lot of specifics when eating, but she is much better.