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Old 09-18-2012, 11:44 PM   #1
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Need your opinions or experience mommas.

First time posting here

Okay, so my now 7.5 month old has been having some issues for quite some time. Background...difficult pregnancy, preterm labor treated with magnesium sulfate and nifedipine. Final delivery at 35w6d. My epidural didn't agree with me, my BP bottomed out, and I was unconscious. Alarm sounded, epinephrine, oxygen, almost emergency c-section. The whole shebang. She came out screaming, 7lbs 3oz, and healthy. Jaundice that was treated at home with a bilibed for 18ish hours, breastfeeding failed, on Similac Alimentum RTF with rice cereal added now for reflux and unexplained vomiting with powdered formulas.

So, now what we've noticed between us, the PT, the OT and the Ped.

She was diagnosed with Torticollis and Deformational Plagiocephaly, for which we've done PT (still working on it) and helmet therapy (still current also). Her PT noticed sensory issues (overstimulation) and response to deep pressure. She also sees a big difference in the strength of her two sides, her left being much weaker. (Her tort tilt is to the right). After bringing the weakness to the attention of the ped, he ordered a CT which showed nothing. We're currently waiting on a second reading of it from a different facility. He has expressed the desire to order an MRI, but has agreed to wait until we feel comfortable having her sedated. In the mean time, we've noticed toe-standing, not just on her toes, but on the knuckles of them as well. She has motor delays, she can't sit unassisted for any length of time, and just recently started rolling, but just one direction. She has just recently started getting her chest off the floor when laying on her belly as well. The OT did an eval and saw hypertonia, even in her mouth, she retracts her tongue and gags on it.That is what's causing her inability to eat solids. She drools more than normal as well. She has been doing wonderful with her bottles as long as we don't ever change the temperature, consistency, bottle or nipple. But lately she's been having bad days where she eats a small fraction of her usual intake. She won't drink juice, and if I give her a solid piece of food (cracker for instance) she will lick it and be ok, but if a piece of it gets in her mouth, she gags and often vomits. Her babbling is limited to "ah" and squeals. The ped wants a speech evaluation and probably a swallow study, but they haven't been scheduled yet. She's still currently in PT and will start OT probably next week.

I'm just looking for anyone with experience or advice on any of these issues. I do plan to push forward however I need to so we can find out what's causing all this. I still feel in my gut there's something underlying to cause all of these issues, but we just aren't there yet.

Sorry, this turned out really long


Brandi married to my best friend
6/08 & 2/12 & Angel Princess 5/24/13 - 5/26/13
Expecting our RAINBOW May 2014

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Old 09-19-2012, 12:43 AM   #2
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Re: Need your opinions or experience mommas.

My dd had right sided torticollis and it affected more than just her neck. She didn't have the head flattening but she did have gross motor delays and she had a harder time moving on the left side of her body than the right. She was on the late side with sitting and lifting her belly and lots of other small moves you don't really think about.

She also rolled one way better than the other. In PT she focused on doing things to improve her skills by working on specific moves and also things to encourage her to use her other side particularly. She did mention slight hypertonia when she was in therapy. She also walked funny on her toes and avoided certain textures on her knees when she was working on crawling. I know she stayed fisted longer than typical.

The side dominance persisted even as she gained skills such as cruising and taking steps. Her first steps she was dragging one leg with the other. The head tilt really improved with just a little bit of therapy but the issues with one side being easier for her did not. It wasn't a neurological thing and she wasn't weaker on the other side but she was just more comfortable because of the right sided torticollis. The PT never recommend an MRI or anything because she didn't feel she needed one.

My dd didn't have eating issues but she did have some fine motor issues and tested as being really behind in speech at 16 months when we lost insurance and she got tested by EI. She started seeing an OT because we noticed slight problems cropping up in other areas like sensory stuff, fine motor issues, speech, play skills and social skills. The OT felt strongly that she was really working on the gross motor stuff because of the torticollis and it caused her to be behind in other areas like play skills too. I think the fine motor and sensory stuff is related to the torticollis and I guess the speech could be too.

Once she started walking and she evened out her speech really improved and now it is very typical for a just turned 2 year old. She is doing great now and luckily seems to have no lingering effects in any area. She finally walked at 18 months. She was just seen by a PT recently and she said that she looks fine now and she has evened out.

I don't really have any advice except to continue with therapy but I hope my story which is very similar makes you feel better since she had very similar issues that we worked on in therapy and once she started walking and she evened out she improved in the other areas too.

Last edited by nohollyhomaker; 09-19-2012 at 05:37 PM.
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Old 09-19-2012, 09:10 AM   #3
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Re: Need your opinions or experience mommas.

That's a lot to deal with. My best advice with both having a special needs child and working in the field is to get all the help you can now. The PT and OT, an SLP, maybe even a feeding therapist. The sooner you start the more difference it makes. Based on what you say, I can see why they want an MRI. When DD1 was in the NICU, she was diagnosed with PVL (periventricular luekomalasia sp??), which basically means cysts near the ventricles of the brain. This leads to Cerebral Palsy in something like 95% of cases, and I see several characteristics of CP mentioned in your post. We got very lucky and the 'cysts' were gone when they did her last head ultrasound before coming home, but then the docs never could agree on what actually happened.

Anyway, it can be extremely overwhelming, and there will be days you feel like you want to give up, that you can't do this, that's it's so unfair. And that's ok. I would go in with the attitude that you're in this for the long haul. While you may get answers, there won't be any magic quick fixes. I hope they get everything figured out for your sweety!! Good luck!
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Old 09-19-2012, 10:24 AM   #4
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Re: Need your opinions or experience mommas.

I don't have time to respond to your post in depth since I have to take my kiddo to therapy soon. I did want to say one quick thing. If she is going to need feeding therapy she will most likely need the swallow study in advance before a feeding therapist will evaluate her. I would call what ever clinic you plan on using and find out what there policy for feeding therapy is and if they require a swallow study before doing an evaluation. It is a liability issue as well as a health issue to do feeding therapy without a swallow study since some of the kiddos with feeding problems have swallowing difficulties and that puts them at a much higher risk of aspirating into their lungs and causing health complications.
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Old 09-19-2012, 10:30 PM   #5
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Re: Need your opinions or experience mommas.

OK, I can spend a little more time on your post before I need to go to bed. Is she seeing a GI? If not I would insist on a referral. This isn't a case of simple infant reflux a ped can handle as routine; There is much more going on and a ped just isn't the go to person for more involved GI issues.

I am on the fence if she should be evaluated by a neurologist. CP can be difficult to diagnose that young and most of the neurologists we went to don't bother to do in depth physical examinations for muscle tone problems and reflexes. Although if you are in the Tampa, FL area I can give you a recommendation to a neuro who will test reflexes/muscle tone and has been involved with UCP for decades, assuming he hasn't retired yet (he was of a rather advanced age when we moved almost 5 years ago).

Personally with her tone issues, reflux and swallowing problems I would want a swallow study done regardless of if you pursue feeding therapy. Aspirating is so dangerous, lung damage is a really serious problem and could have life long implications. My other thoughts on feeding is she already has special needs so if solids is her only feeding issue I wouldn't freak out too much. Certainly keep working towards solids and checking for physical problems but not exactly alarming at this point.

Yes, of course, therapy, therapy, therapy. Early intervention is key and helps improve outcomes. Some EI programs have parent support groups something you may want to check out just so you have someone to commiserate with.

Personally I couldn't stand the not knowing and would do the imaging tests. However if you are uncomfortable with sedation then the question you need to ask the doctor is if the results will change her current treatment. If the answer is no then obviously the testing not really needed at this point. If she starts regressing, having seizures or any other alarming signs you can then reevaluate the need for further testing.

Also with torticollis and one sided weakness it is normal for some regression when they are sick, in pain from teething etc..., or just otherwise feel less then their normal baseline. Don't panic unless you see regression as a pattern overall not just during her down times. I could actually tell how much pain my son was in from teething and reflux by how much he favored his bad side as an infant.

Also this is something I even tell parents of typically developing kids, it is never ever okay for a doctor to go oh it is just reflux and leave a child in pain. Nothing and I mean nothing makes me want to reach out and smack a doctor more then this horrid attitude. Treat the pain until the reflux is under control. If the reflux is painful a child should not be left in pain because reflux is common. Shoot! menstrual cramps are common too but that doesn't mean I won't punch someone if they try to get between me and the sweet relief of my Ibuprofen. Why should anyone be less sensitive to a small child's pain? My son has been through multiple surgeries and I can honestly say I have seen him in more pain from gut problems then I have seen him postop (the only exception is the time he had a raging infection in a surgical site that busted open).
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Old 10-13-2012, 08:44 PM   #6
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Re: Need your opinions or experience mommas.

E has spina bifida, among other things. She had reflux so bad from 6 months to 2 years, she vomited at least once a day, sometimes 3 or 4 times. I agree with the swallow study; turned out E couldn't handle thin liquids (water or juice). She also had an upper GI study done to confirm her reflux as well as her delayed gastric emptying and her chronic constipation. An upper GI is done in radiology and takes about 4 hours. E had occupational therapy, which was essentially eating therapy because of her pronounced gag reflex from her sb. It could really help your dd. One question: does she eat smooth baby food alright? E was on it until she was 3 years old because that was all she could eat.

Like your dd, E also had a problem with her feet when she stood or tried to walk. E was a heel walker, the opposite of your lo. She had surgery when she was 18 months old to fix her tight tendons and now wears AFO leg braces. She is able to walk unassisted and even jump a little. Her right side is still weaker than her left; when she gets tired,she drags her right foot and she always puts her left foot first up steps.

Hope all this helps (a little) and at least lets you know you're not alone. Thanks for sharing.
Kara, wife to college sweetheart J and SAHM to E, diagnosed with OEIS complex at birth. What is OEIS? See E's website!
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