Babies with sensory disorders? - Mothering Forums

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#1 of 10 Old 07-07-2009, 10:35 PM - Thread Starter
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DD is just 3 mo and has obvious sensory issues. She has had some form of these since birth. She got her Dtap at 2mo and now she has a lot more issues. She is very sensitive to touch, especially after a bath. I try to wait as long as possible to bathe her because if throws her off for days. She HAS to be swaddled when she eats, is tired, or sleeping. She is not able to regulate herself at all, way past the typical startle reflex. She can't handle any noise when she is trying to nurse. Nursing now takes up to an hour between the screaming. I suspect that she is now also having issues with the texture of my nipple in her mouth.

We have her starting OT at the end of the month.

Any other parents that have dealt with a babe like this? It is very trying and I am feeling all alone. My son had more typical baby sensitivities, he was fairly sensitive and still is, especially to my or my husbands mood. But she goes way beyond him. She still has periods of happy awake times, but is so easily pushed to the limit. I do believe the OT will help and I know this will get easier, but my gosh I am BEAT.
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#2 of 10 Old 07-08-2009, 04:15 PM - Thread Starter
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No one?
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#3 of 10 Old 07-08-2009, 04:55 PM
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No personal experience with it but I know babies do have sensory issues. I studied with some experts who study SID, and what you describe sounds like it could be.

I hope some parents can chime in.

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#4 of 10 Old 07-08-2009, 09:00 PM
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My DS was definitely a sensory baby, way more so than other kids though maybe not quite as sensitive as your DD. I found that the texture of what he was wearing could make all the difference for the day. Add in the texture of a blanket and I had to be super careful. He slept swaddled until about 11 months, he just couldn't cope otherwise. Nursing was also a swaddled only activity until about 5 months, then I could get away with just holding him close.

I'm also a sped teacher so I work with a lot of kids with sensory issues so I had a few ideas to help me get going.

Before doing anything that I knew could set DS off, I made sure we'd done some sensory things that made him feel better. He loved being held upright and bounced on the exercise ball. No rocking chair for him. We took a LOT of walks because the motion and the sun seemed to help. I donated every scrap of clothing that set him off, for a while he had about three outfits that were ok.

There is hope though. Really. DS is now a little over 2 and WAY better than he was. He's still a child I need to plan for, and there's still clothing that he can't stand, but he's a happy, smart, creative, verbal child.
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#5 of 10 Old 07-08-2009, 09:09 PM
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You are describing my twins. I had preemie twins, both of whom have sensory processing disorder. They still have issues with it, but yes, their infancy was SO UNBELIEVABLY HARD!!!!!!

First, kudos to you for starting your baby in OT immediately. I am so glad I started them in OT very young. They made huge gains and it keep delays from compounding.

I found Harvey Karp's Happiest Baby on the Block invaluable in helping to soothe them. If you haven't already, I highly recommend you read his book and follow his advice.

Both twins screamed incessantly in the car. I covered their infant carseats with a lightweight baby blanket. It cut enough of the stimulation that they could ride without a massive, non-stop screamfest.

I also covered my son's pack-n-play for naps and bedtime with a lightweight sheet to cut the stimulation. Keep the lights off; dim lights helps a lot.

I kept blowdryers on an insane amount of time because the white noise really helped sooth.

Swaddling was my survival mechanism. I found a blanket with some stretch that was soft and pulled them into a very tight swaddle. They loved it.

Containment, being held firmly, with shooshing worked very well.

I would also try to intercede very early when they became upset or disregulated. They could NOT regulate or calm themselves. Catching dysregulation early and calming them was very helpful.

Reading with a very soothing voice helped.

Sucking, nursing helped my daughter immensely. I let them nurse on demand. Sucking is very organizing and being held closely with the warmth helped, too.

Firm touch feels good. Light touch can feel noxious.

Calming sounds, calming music -- watch your baby's reaction to see what music works for your baby -- helps.

I don't want to "lecture" or judge, but I will share that a good number of pediatricians refuse to vaccinate children with sensory issues. Their nervous system is considered compromised as is and vaccines an assault to their nervous system that they cannot handle. We did not vaccinate. You may wish to consider what vaccines, if any, you want to give going forward.

Also, I will forewarn you that in our experience and from discussions with OTs that I have learned that sensory issues can lead to or go hand-in-hand with other delays, especially fine-motor. They avoid experiences that would help their development. They dont' have good body awareness that helps them learn to hold a pen or control a pen in order to write. My daughter SCREAMED AND JUMPED DOWN IN RAMPANT TERROR. I just knew she had been stung by a bee, etc. No. The average grass of average height at the park was HITTING her. My sense is you are more needing survival tips at this point. I wish I had known that their avoidance behaviors could result in children dropping farther and farther behind because they hadn't developed the shoulder strength to use a pencil, the sense of their body necessary to write, etc., etc.

Its money well spent to find an OT very knowledgeable about sensory issues and aware how they impact continuing development.

I also will share that my son started out so overly sensitive to sounds, lights, etc., etc., that the OT was concerned he would be a child so impacted taking him to the grocery store would be nearly impossible. He also looked like a poster-child for attention deficit disorder. With lots of therapy, he has magnificient attention and I simply look crazy, at best, when I talk about where he started. He doesn't like his classmates talking loudly. He will tell them they are talking too loud and tell them to talk quieter. But he doesn't have a huge meltdown and become unable to function. Instead of wondering aimlessly unable to focus on any activiity or select an activity to do, he puts together 100 piece puzzles as a 3 year-old. They can make a lot of progress and do very well. And he still needs on-going weekly OT and weekly PT after very, very intensive therapy started when he was young. It's a sacrifice, to be sure, but the therapies have helped a great deal.

Feel free to contact me if I can help. I've so been there.. . . with two and as a single parent.

This is very disjointed, but I could tell you were desperate for some support and connection, not having had any responses yet.
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#6 of 10 Old 07-08-2009, 09:38 PM
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Also, don't rule out other issues. There might be food intolerances that are making her very uncomfortable and that make nursing tougher on her. My son got way better when I cut dairy from my diet (ultimately I had to cut all his allergens, as his were severe). Dairy can really mess with their system.
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#7 of 10 Old 07-09-2009, 01:36 AM
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My DD has SPD and it was clear literally from birth. Wow, the first year was *so hard*. I'm in Boulder County CO - if you're close, let me know because I have a great referral for a therapist. She's done sensory work with DD and is now doing play therapy. Honestly I really know how you're feeling and would be happy to just talk to you and offer some support. It can be very isolating because people do. not. understand.

Nursing DD was such a challenge - sometimes she would go 10 hours in between nursings because she just hated eating. Her screaming was horrible and nearly constant. Now she is a thriving, extremely bright girl - it's hard to know that at one point taking her out in public was so hard.

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#8 of 10 Old 07-09-2009, 12:21 PM - Thread Starter
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Thank you for your responses. It helps to know that I am not alone. We have worked on food intolerance, so far we have not seen a difference for C with what I am eating. People just don't get how difficult this is. Even close family think nothing of it. It makes me so sad to see my beautiful baby so uncomfortable in her own skin.
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#9 of 10 Old 07-09-2009, 12:39 PM
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Looking back, DD1 had clear sensory issues that were present from infancy as well. Some were there from birth but like your child, they got worse after the dtap, I never vaxed again. : The first year with her was HARD. I always say that I never know who cried more that year, me or her.

I never knew she had sensory issues, I knew she was quirky, but it wasn't until she was 5 and having fine motor issues like other posters mentioned that she was dxed. She had never developed the fine motor skills to hold a pencil. Food, chemical intolerances were a big part of her problems at well, it took me years to track down everything she reacted to, there where so many that nothing ever seemed to make her better.

There is no way to happiness, happiness is the way.
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#10 of 10 Old 07-09-2009, 12:56 PM
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You might want to prepare yourself for when you are trying to start her on solids.

My DS had HUGE tactile issues (sensory mouth and hands primarily) as well as some auditory issues. This was from birth. Breastfeeding was a real challenge - he pretty much chewed on me from day 1, and two lactation consultants said he had a good latch. I think it was in response to having the nipple in his mouth. Just having anything in his mouth freaked him out. When I tried starting solids, he pretty much just gagged and spit out everything I tried (if he tried it at all). This went on for months. Then I sought EI help...but the therapists I got were not helpful. After a year of that non-help, I sought out my own (expensive) play-based SLP feeding therapist and she was so great! After 8 months of feeding therapy he was actually eating a few things! That was around 27-28 months of age. Things got much better from there. In the end, I managed to BF him for almost 3 years....and for the first 2 years he was pretty much exclusively BF'd. Because of the chewing, I ended up with mastitis several times and finally a yeast infection that didn't go away until he weaned. It was an uphill battle, but when he started eating, life did get better.

ETA: He also has issues regulating himself. He really needs me to help him in that regard. He still does need me, way more than any other 3.5 year old I've seen. I would also describe him as having an anxious disposition. He's pretty much afraid of anything new. I have to give him lots of encouragement to even try something new. I also have to set up the conditions so that if he does try something, it would likely turn out favorable. This is because he only gives something one try and if it's not a good experience, then that's the end of that.

Being his mom is the hardest thing I've ever done, and it seems way harder than any other mom I know IRL (though there are lots of moms on this board who have a difficult time too). I would expect most people you know IRL, including your relatives, to completely not understand. This is particularly so when there is not an obvious physical disability.

ETA2: I also want to add that I BF'd my DS until he started eating enough to want to wean by himself. Despite nearly everyone telling me that I had to wean in order to get him to eat, I just kept nursing him. When he was eating enough solids he was happy enough to cut back nursing. Just wanted to let you know, in case you run into this situation as well.

Kim mama to DS 12/2005, Pepper kitty , and 10/03, 1/05;
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