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22 Month Old Boy Really Need Advice on What Could Be Wrong

My son is 22 months old. He was born at 35 weeks but stopped growing at 32 weeks gestation, so they consider him a 32 weeker. He had problems immediately at birth with breathing, however they never had to do anything to help him breath. He was very tiny (4lbs 13oz) and always sounded "nasly". While eating he sounded like he couldn't breathe and he was starving. We were told at 2 weeks old that he had hay fever. Then at 1 month he began having episodes where his eyes would roll back and one side of his body would shake this would vary but mostly happen 1 to 2 times a day. Sometimes more. We took him into the doctor, because I have epilepsy. The doctor told us it was reflux, the worst she had seen. I was confused because he was never fussy, never spit up, etc. At 4 months he got sick with the flu, followed by pnemoina. He then got pnemonia or bronchitis every month, sometimes 2 times a month. He would also break out in a weird rash from head to toe once a week or so. He went up on the growth chart until 8 months at 25% then fell to -5% at 12months. He started crawling at 8 months, and didnt walk until 20 months! He has a left side weakness. He gets physical therapy for that, and occupational therapy as well. He has oral motor therapy 2 times a week, because we found out at 14 months that he aspirates all liquids. We have to use thickner with every bottle, and are just now working on getting him moved to a sippy cup. We have been told that he might have cerebal palsy. They have tested for so many things. We can't get in with Neurology until October. He saw a pulmonologist in April who said his sinuses were full of abseces and he has chronic sinusitis and asthma. He put him on 6 week antibotic and Anthony was good for 11 weeks, and now he has fever, diahrea and congestion again.He also would turn purple (just lips) 5-10 times a day. This went on for about 6 months. Also last week he laid on his back for 20 minutes unable to move his left side. When I would lift him he would fall over and not able to talk or move. The ER looked at him, and said no problem he is fine. No tests nothing. Peditrician doesn't seem to concerened either. His blood pressure has been at lowest 113/58 since April but it usually runs about 120's. And he has been having horrible tantrums to where he hurts himself by bitting, banging head on ground, etc. Does anyone know what could be up? We go to infectious disease doctor in a few weeks and I'm wanting to go in with some ideas. Here are a list of his symptoms
Left side weakness, seizure like episodes, aspiration, failure to thrive, chronic sinusitus, premature, chronic pnemonia, frequent fevers, purple lips, behavior problems
What we know:
Has an oral weakness, left side weakness, deep pressure sensory problem, chronic sinusitits.
Thank you

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What can I do next?

So What Happened?™

I am doing the probiotics right now. He has had 2 EEG's both were normal, echo was normal, EKG was normal. He has had a 24 hour probe and biopsy of esophagus, stomach and intestine and all were good. He has NO signs of reflux at all. He has has an MRI as well. In fact GI says that they no longer need to see him. So he has seen GI,Pulmonologist, Speech Therapist, Occupational Therapist, Physical Therapist, and we are on our 4th pediatrician, If they don't take me seriously and listen to me, I find a new doctor! We are waiting on Neurology, and Infectious Disease doctor

Featured Answers

Get some new doctors and go to another emergency room. I don't kow what is wrong but something is and the longer you wait the more for potential damage.
Good luck,
L.

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First of all, i'd consult with another pediatrician - Ernie Fernandez is very thorough, logical, and careful. Near Walnut Hill & Greenville Avenue. I think he could help you get in contact with the proper specialists...or at least point you in the right direction.
Hang in there. Sounds like you are doing the very best you can do.

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A.,

This definitely sounds neurological to me. I am very surprised that your pedi doesn't sound so concerned. The problems that you are describing are coming from the brain stem region. How was his birth besides his early arrival? Any other complications? Vacuum extraction, c-section, etc? I am an upper cervical specialist in chiropractic. I mainly focus on the top two bones in the neck, the atlas and axis. I also see many children as young as 2-hours old. The reason why I suspect this area to be compromised is that the respiratory centers, the cardiovascular centers and the muscle tone is coordinated and controlled by this region. By a detailed assessment, I would be able to tell if your son indeed does have this area compromised, or if something else needs to be further looked at by another specialist. The treatment is extremely gentle, does not involve drugs and results are seen quickly, especially with children. If this is something you would like to pursue, please email with any further questions and we can get him in as early as next week. A couple of great websites to research would be: www.icpa4kids.com or www.upcspine.com. God Bless and let me know what you would like to do. If the Plano area is not convenient for you, there is only another upper cervical specialist that I know personally in Keller that I would refer you to. Unfortunately we are few, but hopefully growing.

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I would definently take him to Cook's of Children's in Dallas. I am a pediatric nurse and i'm pretty sure if you took him to the ER at a pediatric hospital and told them about his episodes (especially blue lips) they would at least do a bedside EEG. An EEG is where they look at his brainwaves for seizure-like activity. He would probably benefit more from a 24 hour EEG. If you are not satisfied with his pediatrican Fort Worth Pediatrics is a GREAT group. I live in Denton and drive all the way to Fort Worth to see my daughter's pediatrican. My prayers are with you and your family.

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So sorry that your son is going through all this. The line that struck me was that you said the pediatrician was unconcerned when your son could not move his left side. I think I'd be tempted to switch doctors! Are you working with Early Childhood Intervention (http://www.dars.state.tx.us/ecis/index.shtml)? If not, that might be an additional source of support for your family and it's typically free!

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Are you still vaccinating him???
Laud

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First let me say this is not medical advise. Am sharing what has worked for us and others who have used this to arrest asthma and allergies.
Grape seed is what has arrested and eliminated asthma and allergies in my husband who suffered with it since he was a baby. Has been asthma free now for 13 years. He also uses another product to control the tremor he has in his body and hands ..it helped him to ve able to shoot perfect with bow and arrow.
Email me at ____@____.com these products can be purchased at local stores.
God bless u and lil one. Eb

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Maybe I watch Discovery Health too much, but I would keep after doctors until they find out what's wrong. So may stories of supposedly disjointed symptoms that can eventually be traced back to a central cause have convinced me that in cases like yours eternal vigilance and dogged determination will reveal the cause sooner or later. You will probably feel desparation in this, but that seems to be what it takes.
Sorry I can't tell you exactly what's wrong (I'm not a doctor and no good doctor would diagnose on the computer anyway), but I can tell you what's right-keep after the doctors.

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I'm not sure what could be the main problem, but I have found that it is best to go to a specialist whenever possible. Since he has one sided weakness and a family history of seizures - if it was me, I would first take the child to a pediatric neurologist. My family will pray for your son and his doctors.

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I really have no idea but I can imagine you are
Exhausted and I will keep you and your son in my prayers.
If I were you I would take him to a chiropractor.
My son was very sick and after many medications and tests and injections
Of radiation I was done with putting all those chemicals in his
System. I threw them out and went to a chiropractor.
He was well within 4 months. I am by NO means saying to throw
away medicine, just wanted to share my experience if that's something you
Want to explore.

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