SPD or not?? Please Help

by Jodi
(Wisconsin)

I have a 12 month old daughter that seems to have many of the same symptoms as I have read. Since she had a high fever at 13 days old, that's when all her problem started. They did a spinal, checked urine, and blood and couldn't figure anything out.


Since she was hospitalized, she started projectile vomiting. When she was 5 months old she fell off the growth chart. She started losing weight so we took her to Childrens Hospital. We did feeding tubes with her. She had a G Tube put in. They thought she had cows milk protein allergy. They tested her for that and it came back negative. She is behind on her gross motor skills. She is not crawling or pulling her self up. She tries to pull herself up. She is at a 6-8 month old when it comes to eating food. She refuses most of the time. She doesn't hardly drink from a bottle anymore. She will usually only drink 20-60 ml per feeding. She loves to put things in her mouth and chew on them. Just not food.

I am starting to wonder that when they did her spinal tap if they didnt hit a nerve or something or cause all of this to happen. It all started after her spinal tap. She has a hard time gaining weight despite being on a 30 cal/oz formula and getting a night drip for 11 hours! She sees a speech therapist weekly. She goes for weight checks weekly and sees a physical therapist every other week. She is 12 months old and weighs 16 lb 9 oz.

If anyone has answers for me or suggestions I would truly appreciate it. I don't know what else to do to help her. She also has a heart defect called Atrial Septal Defect.

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Jul 13, 2009
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I understand some of what you are going through
by: Anonymous

My daughter was born at 29wks and had a PVL shortly after birth. She is now 15 months (13 months corrected). She does not sit independently, but with some support. She has epilepsy and she has a possible visual impairment (although her eyes are fine, it is to do with the brain processing). Her physio says that she has SPD and I am trying to find out what more I can do for her.

She has loads of different therapies she attends and although has never lost weight, she is on the 0.4th centile weighing 15lb 12oz. Never been a big feeder even though she is on 100cal milk per 100ml.

My only advise is to just keep doing what you are doing - research, being there for them, sensory equipment, hands on treatment. There are days when it's very over-whelming but be satisfied that it is YOU who is taking care of this child and YOU love them more than anyone else could and YOU will see that they will have everything they need. You probably feel sad sometimes only because you care so much and feel so powerless.

My little girl is benefitting from all the support I can get her and I continue to do so as I want her to have the best quality life that she has potential for.

I am sorry that I don't offer anything in the way of knowledge about spinal but second opinions never hurt and may ease your mind.

I hope there will be some light at the end of the tunnel for you both but know that there are people out there who will support you and help you through it and you are not alone in it.

Best of luck.

Jul 12, 2009
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SPD or not
by: Jodi

She is enrolled in the Birth to 3 program and sees a speech therapist and physical therapist.

Her GI dr at Childrens has a nutritionist that we work with. Don't think she is of much help.

There are days that all I want to do is lock myself in my room and cry. I just don't understand her. Especially my other 2 daughters are very healthy.

Jul 09, 2009
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spinal tap
by: Anonymous

Its interesting that you should mention the spinal tap.

My son had a spinal at 4 days old and was hospitalized also for a few days. My gut tells me that it was that ordeal that caused his problems.

He isn't behind in development, but he has many sensory issues and a lot of anxieties.

I wonder how many other babies had spinals and now have sensory issues?

My son also wouldn't drink his bottle after 7-8 months. It made us worry so much since he wouldn't take solids either. We managed to feed him his bottle while he was in a very sleepy state at night and during naps. He basically didn't realize he was drinking it. His hunger must have taken over at that point. Made sleep for us almost non-existent.

He's almost 4 now and we still struggle so much with feeding him. Some days i want to cry.


Jul 09, 2009
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Thinking of you
by: Anonymous

My goodness...what a road you have traveled. Keep your head up and be strong. Does your daughter see a nutritionist or an occupational therapist? I would definitely start there and get an assessment done from an early intervention group -- your doctor should be able to refer you.

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