Hi everyone - I kinda stumbled upon this website while doing some research for my daughter. I hope you will have me
My daughter (turned 4 in January) has been diagnosed with "unexplained core weakness". Nobody, and we have gone to countless Specialists, can figure out why or how she has such a weak core. She has been in both PT and OT since she was 8 months old. The therapists have definitely helped her, but they are completely stumped by the core weakness as well. My daughter has a history of GI [digestive, constipation] issues as well, but all tests and procedures have been normal. However, I firmly believe that her GI issues are somehow connected to her weak core.
I really try to go with the flow and stay very positive...but I won't lie in that I'm started to think there could be an underlying issue behind the core weakness and I'm concerned that I don't have any answers.
If you have any thoughts or suggestions, I'd be so grateful. Thank you - and best wishes to you & your sweet little ones!
Welcome. Those with Core weakness often have gi issues. One theory is those muscles can also have the same weakness causing issues. So you are likely right or at least not far off in thinking the 2 are related.
Hi! Your profile pic is so very cute. I appreciate your response - thank you. Hypotonia has been ruled out, many times. All genetic and neurological tests (all very extensive) have been normal as well. My daughter's shoulders look underdeveloped and she really struggles with taking off shirts, hanging onto things (i.e. monkey bars) and she is unable to complete a sit up. Please know that I am very aware that, in the big scheme of things, I know that these issues are obviously not the end of the world (can't think of a better phrase) but at the end of the day - I can't help but think that her GI issues are never going to be fully healed until I can find out what is causing such core weakness. She has literally received both OT and PT on a weekly basis (many times twice a week) for almost four years now. I see the concern in her therapists' eyes, in that they too know that there's an underlying issue.
Wow, sorry for rambling. I tend to keep all of these concerns between my husband & I, so thanks for letting me get some of this out And Hi craftyone and hopecounts!
Post by imojoebunny on Apr 25, 2014 16:45:07 GMT -5
How does it effect her daily life? My DD has core issues, and was FTT many times between 8 months and Three years. She also had daytime incontenence issues until she was almost 7. The daily life thing has been the most important thing for her. She has been diagnosed with stuff, but she really didn't have those things in the end in several cases. More information about how it effects her ability would be useful for comments. Dd can't do monkey bars or sit ups, and could not dress herself at four, but those are not the things that impact her life immensely. Not being able to sit appropriately in class, that adversely effects her life. Wetting her pants every day in first grade, those things hurt.
DD's core issues affect her daily life in that she simply can not push out her poop, as I can see she just doesn't have the strength to do so. Hence, she is always backed up. I also believe (and feel free to roll your eyes, all of her doctors do) that because of her weak core, that she cannot properly digest many foods. [no allergies though, she's been tested many times] I eliminated wheat, eggs and soy a year ago and that has helped a bit - but I can tell that her little body still has a really tough time digesting many things. She doesn't look well, black circles under her eyes...very pale, lethargic. And for another unknown reason, she wakes up stiff (in the morning & after naps) almost every day - so our next step is to see rheumatologist. Her weak core obviously affects gross and fine motor skills; she also is speech delayed and has been seeing a SLP since she was 16 months old. I wasn't overly concerned about any of these things (except for the GI issues) until I was helping her lift a shirt over her head the other day and I just had to hold back the tears when I saw how underdeveloped her shoulders/upper half appear to be.
Thank you all, again, for the responses to my post.
Post by imojoebunny on Apr 25, 2014 19:01:26 GMT -5
Have you tried muralax or the like? It was one if the things they suggested for DD, but it didn't help.
We have done a number of things to increase core strength, OT for handwriting, which works on the things that allow them to sit appropriately at a desk, horseback ridding, we did dance until 6, since DD liked it, but she got kicked out for not being able to keep up, she currently does circus class (tight rope walking, silk climbing, ect.) and ice skating, and will do more horse ridding this summer. She cannot ride a bike very well, even with training wheels, but can manage a Kick scooter quite well and likes to ride it.
Fine motor is also a problem, so we have a lot of clay, like 50 things of play dough and the accompanying tools to make it fun. We also use a lot of sculpty which is more expensive, but requires more hand strength, so is more effective. She gets handwriting OT/special ed at school twice a week.
I have looked into various diets. I tried Finegold a couple of years ago, but could not pull it off, and I don't think DD's issues are diet related. I know well educated, long time parents who swear by it, and I don't think they are at all crazy.
DD seems to have some sensory processing problems. She definitely has visual processing disorder, which makes it hard to know where she is in space, an example of a symptom is leaning against a wall or another person when walking, particularly on stairs. It also made it hard for her to pay attention in class because she could not follow on the board, and also had a hard time sitting in a chair, and especially on the floor. Initially, they thought this was ADHD, but we moved her to a school that accommodates her physical limitations, and she has no problem focusing, so that diagnosis is no longer in the mix. We put her in a school that has a 1 hour recess each day in two 30 minute blocks, which has helped build her strength. They allow her to use a special cushion when sitting to make it more comfortable, while properly positioning her to sit correctly. Little things make a big difference.
Your DD may well have different reason for her core and fine motor problems, and I hope you find those, hope some of our experience helps.
It's a little unusual that she still naps. Most fours no longer do. Have they ruled out a mito disorder, sometimes these can cause a range of symptoms that appear unrelated. Does she seem to catch bugs that go around more often than other kids or take longer to rebound from run-of-the-mill illnesses?
Have you tried probiotics to support her digestion?
Hi everyone - thanks so much for your kind, insightful responses. I feel fortunate to have found this board. Also, before I forget, I wanted to let you know that one of my daughter's doctors noted in her chart "Unexplained Core Weakness"...I am not the one who came up with this 'diagnosis' for her.
imojoebunny: we have been giving her Miralax for years, and fish oil, and digestive enzymes (before each meal). It's interesting that you mentioned horseback riding, because I am going to research that for my daughter - as I can tell that PT is just not helping enough to strengthen her core. Also, my daughter, too, is 'lost in space' as I have been told many times.
auntie: she has been tested for mito, and all results were normal. As for naps, I am concerned (and have mentioned this numerous times to her doctors) that she needs a 2-3 hour nap everyday. And yes, we have been giving her probiotics since she was a baby.
kar: she hasn't had a sleep study done...and again, I know I'm beating a dead horse here, but I have mentioned the need for one to her doctors many times - but it falls on deaf ears. She has always had sleeping issues (tosses and turns all night & during naps, doesn't seem to open her mouth in her sleep - lips look like their sealed tight - and she never looks "refreshed" upon waking up, sometimes she even looks worse after sleeping). We have gone to many neurologists, GI doctors and allergists (and we have gone the homeopathic route as well) and we have yet to find one doctor who is in my daughter's corner. It's beyond frustrating.
Also, I made the stupid mistake of giving my daughter corn on the cob on Friday night...and the poor little girl paid the price all weekend. She looked very ill all weekend, and the circles under her eyes were even more pronounced that usual - and I know for a fact that it was because of the corn she ate on Friday night. I feel terrible