Discussions By Condition: I cannot get a diagnosis.

What is going on with my baby??? All Advice Welcome

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Shellbabie86
  • June 1, 2010
  • 05:04 AM

I had a little girl on July 4th last year. I had no complications with the pregnancy other than preterm labor, however she was delivered at 38 weeks. She was immediately rushed to the nursery with distressed breathing (later found out it was transient tachypnea of the newborn). two days later she was rushed to the NICU with a collapsed lung. We later found out she had a hole in her heart (PFO), and pulmonary stenosis, and hypertension. They also came back and said it was pneumonia but i don't think it would clear up in a days time.

When she came home she was doing great with the occasional grasping spells but she has never turned colors. now she is 11 months old and considered a failure to thrive baby. She weighs about 13.6 pounds and can only sit up and roll over nothing else. She babbles a little and can only say about three words. No matter how much she eats we are not able to make her gain weight. When you watch her interact she seems normal but has days that she will sleep about 21 hours out of a day and some days she cries unconsolablely for hours. I have also noticed that her joints hyperextend and she does not sweat.

We have been to see several doctors and everything comes back clean so they are dragging their feet on finding out whats wrong. Anyone have any ideas on what could be happening???

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  • Hi.. one of my children (now grown) was at 18 mths old classified "failure to thrive" (put in hospital for observation due to it for a week.. she was such a wee light thing) and had multiple medical issues too thou different ones to yours. One of the most helpful things we found for it was all the hints and tips a dietian gave us to help her gain weight (in her case, she hardly ate at all but some of the weight gain advice may still be helpful to you). eg - We had to add extra milk powder to her milk (for more calories), - was told to allow her to eat ANYTHING she wanted..as much junk food as she liked..they thought more calories the better- Was given a powdered substance to add and sprinkle onto her foods for calories, it was called i think polygule? (but i know ive got the spelling wrong), anyway it was something available from the childrens hospital or chemist (i cant remember now), you add to the food and it's high calories - On top of the pediatritian put her, from a toddler to the age of 3 and a half onto a medicine (cisapride) which has side effect of making someone eat more. (wow i just looked up to see if that is still available and see it was withdrawn from the market 10 years back due to side effects). Anyway.. the jist of my post is saying that there are things which can be done to help a child/baby gain weight. (thou i realise you have far more issues than just this). A dietitian who specialises in children can give you a lot of tips in this area. best luck
    taniaaust1 2267 Replies Flag this Response
  • i didnt put the following in my first post as i didnt know how to spell the medical issue i was thinking of on hearing some of your childs symptoms.. but i've found it, so here's the rest of my post. Thou wee ones can be very flexible, if your babes flexiblity is abnormal, Ehlers Danlos syndrome should be considered. i've spoken to ones online with this in the past, so know some of them suffer a lot of tiredness due to their illness .. and managed to find a quote to back this up as being another symptom of this condition Up to 1997 the chronic tiredness and pain accompanying EDS were not taken into account in diagnosing the disorder and so many patients were told they were seeking attention and that their condition was "all in the mind". quote above from http://www.essortment.com/all/ehlersdanlossy_rgkq.htm Also ones with EDS can have heart problems and other issues.. on wikipedia it mentions that they can also have Dysautonomia with it. As i have dysautonomia myself i know that can cause abnormalities with sweating (no sweating or excessive sweating). i think there is also a link with PFOS and mitral valve prolapes. http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome
    taniaaust1 2267 Replies Flag this Response
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