stormylane
Forum Newbie
Topics: 1
Posts: 1
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Please, any info would be helpful.
My grandson is 3 months old & he has CP. He is almost 4 months old.
He can't suck or swallow so he eats through a g-tube.
He is not gaining much weight. Only 1 pound last month.
He takes phenobarbital for seizures & zantac because he rejects his food. More then 1/2 of his feeding come back up although they are measured precisely to what the pediatrician has ordered. (so he is not being over fed)
Neurologically he is only at a 1 month age level.
He sweats profusely at times. He will become extremely rigid & look as if he is in pain. Then beads of sweat form all over him. And the sweat smells extremely musty. His musty odor can fill a room.
I keep him very clean & can't skip baths because of his odor.
I am his caregiver because both his parents work, but I have no access to his doctor.
I know very little about CP so I'm not sure if this sweating & musty odor is due to that but I have never smelled a child who smelled like this.
Is this odd odor something to be concerned about or am I just a nerotic grandma?
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| robin082006
Forum Hero
Topics: 471
Posts: 5,125
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He has Phenylketonuria.
Avoid any food containing phenylalanine (search on Google for such food) and Aspartam (artificial sugar).
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| chemamr
Moderator and PGY1
Topics: 703
Posts: 4,441
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i agree, it can be phenylketonuria.
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| sheeezooo
Forum Guru
Topics: 30
Posts: 343
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PKU
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if u hold up your head with a smile on your face and are truely thankful,u are blessed because the majority can, but most do not..
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| paviraj
Forum Senior
Topics: 1
Posts: 59
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YES PHENYLKETONURIA. ANY FAMILY MEMBER WITH RELETED COMPLAINT? PRENATAL SCREENING FOR NEXT ISSUE.
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| Joy-Joy
Forum Newbie
Topics: 0
Posts: 1
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Please I need help
This is my story
I am a 47-year-old female with CP (spastic athetoid left hemiplegia)
When equal (aspartame) first came on the market years ago I had a severe neuromuscular reaction to a dose of 3 packets so I knew to stay away. At the time, I checked all of the foods that I ate & made sure they were safe.
About 2 1/2years ago I started to deteriorate - sweated profusely at the slightest movement, increased pain, and in my good side - carpal tunnel, tennis elbow and almost constant yeast infections, low Iron - you name it & Drs keep asking me if I have MS & recently ringing in the ears
Last week I noticed that an 8 oz container of yogurt I had just eaten had aspartame - the bad neuromuscular reaction started the next day with pain & tears
I went to the dr & TOLD him about the aspartame & he dismissed it - I spent that night in the hospital & the next in a mental hospital (never tell anyone you just want to go to sleep & not get up)
But after 2 days of no food at all - I did feel allot better
I went to my pain Dr & HE explained what the aspartame had done
We came home & checked everything in the house - everything that was safe before now has aspartame - we got rid of it all - the ringing has stopped & pain is less after only 5 days
We researched it & discovered that every thing was changed over in 2004 (gee that's about 2 1/2 years ago)
So all that’s left to explain now is the sweating & the stinky yeast.
I know I had a PKU test after I was adopted & before my CP diagnosis because I have the coloring that made them think it was possible
And I KNOW that my mother (of blessed memory) would have limited my diet if she were told to. I also know that I don't like or eat much of the foods PKU people should avoid
Is adult onset, aspartame triggered, PKU even a POSSIBILITY WORTH CONCIDERING?
Oh and by the way...........
I really can't understand why everything about CP is listed in pediatrics - It's not like you get to grow out of it
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