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
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
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.
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.
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.
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.
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!
The fact that your Pediatrician doesn't seem concerned is a HUGE concern to me. First, change peds. You need one who will advocate for you. While it can take a long time to get in with a neurologist you need someone who will advocate for you. This child needs to be seen and your Pediatrician can help you get in earlier. I would also make an appt with a developmental pediatrician...they can take a while to get in with as well.
I'm not a dignostician but having a preemie that stopped growing in utero (mine was a 35 weeker who stopped growing and developing in utero as well)is also a HUGE red flag. This really sounds like a neurological problem...my son also has left-sided weakness (he's 6 now) and he has been in multiple therapies over time. I lost count of how many times someone told me that I was an overreactive Mom and that there is nothing wrong with him. Well, now that he is 6 others can see that he struggles with a core strength deficit and difficulty in school. He was never able to roll over and he still has left-sided weakness, although it's not as severe due to all the therapies.
As far as the diahrea...the antibitic probably killed off all the healthy bacteria. Get some Culturelle (it's acidophilus)...CVS carries it, and that should help rebuild the healthy bacteria in his gut and hopefully stop the diahrea.
While he might have reflux I've never known turning purple to be a symptom. My son sees John Baker at Presby Plano for GI stuff and we love him. I've taken my son to others but he seems the most reasonable.
Has he seen an allergist? My son sees John Van Wagoner on Windhaven Pkwy down the street from Presby Plano. We like him and he's agressive but not ridiculous with treatment. A child that age should NOT have chronic sinusitis or chronic pnemonia.
As far as the behavior...while it's certainly worrisome your son is probably frustrated and maybe doesn't even feel well.
I have a Master's in Early Childhood Disorders and I'm a Mother of a preemie with issues and all I can say to you is YOU are your son's best advocate. No one will look out for him like you do. Don't let the docs push you into thinking nothing is wrong...obviously something is going on or he wouldn't be getting therapies and sick all the time.
Good luck! Feel free to email me if you need anything!
I am sorry you are having to go through such a stressful time. My advice would be to stop vaccinating ASAP. Let his little body try to heal, strenghthen his immune system and fight the current issues. I would also have a blood test done for allergies. Best of Luck!
Take him to a Pediatric Chiropractor - Dr. Haggerton in Hurst is AWESOME!! There is so much that could be going on, you need to see someone who will evaluate him as a whole instead of just looking at the symptoms. Good luck to you and your little guy. Please keep us updated on what happens.
The first thing that crossed my mind too, was a food allergy & or celiac disease. I would take him to a holistic practitioner.
Dear A.,
I am assuming that you have tried to eliminate everything in his environment that is toxic, like household cleaners, laundry products which impact his bedding and clothing, etc. i.e. creating a healthier home down to purified water and air purification not just fileration.
Have you been including the probiotics in his diet so that the damage done to his intestinal flora by taking the antibiotics has been combated so he doesn't end up sicker over the long term by ta compromised immune system (70@ of the immune syustem is in the intestinal tract and those cells interact with the probiotices to make the immune system stronger).
You don't say whether you gave birth to Antony nturally or by ceasarean. It apparently makes a difference to the immune system.
I have several CD's which I would be hapy to send you if you are interested in learning more about how to aid the body in fighting against ill health naturally.
Unfortunately the toxicity that our babies are having to deal with nowadays if far greater than we had to deal with since the advent of the ten's of thousands of chemicals intrucuced introducted into our environment.
Have you explored the possibility of food allergies, especiatly to milk?
Let me know if you would like me to send info to you.
My heart goes out to you you must be besides yourself. I know 6 years ago the medical profession was unable to tell me what was wrong with me and I was tested out the ying yang. Since that time I have become proactive about my health and quiet knowledgeable in giving my body what it needs to be able to fight off illnesses. Bottom line you have to build a health immune system.
Let me know if you would like to fist together.
G.
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I am so sorry to hear all about your little guy. I can only imagine how rough it's been. Regarding oral and left side weakness and deep pressure sensory issues, I encourage you to check out the National Academy for Child Development. They work with children of all backgrounds and we started this program with my son in December. We are seeing more progress with my son over the past six months since starting the program than we have in 2 years of PT and OT! The website is: www.nacd.org. Feel free to message me if you have any questions.
Take care,
M.
A.,
My only advice to you is to follow your instincts. There is obviously something going on with your son. If your current Pediatrician won't listen, it is time to seek out a new doctor. Talk to other moms that have children with "issues" about who they take their kids to and if the dr. listens to their concerns. Some tests to consider requesting are an EEG, Cerebal Palsey, EGD, diabetes, MRI of brain and chest and a swallow study. Your pediatrician can order these tests so that they are done when you go to the specialists. The results can also show you what is going on with your child and help you get into the specialists sooner. Good Luck and I will be praying for you.
A.
Please call The Family Hope Center at ###-###-####. Talk to a member of their staff.
There IS hope!
D.
It sounds like you have been through a lot....hang in there. You said that you are going to see a neurologist that is a great idea, I have twin cousins that were premie and one of them did some funny movements and my aunt would record them so that she could show the doctor. That is my advice make a video diary, I know all you want to do is console your little one but it was so helpful for my cousin's neuro to see what was actually happening instead of her trying to descibe it. She would state the date in time in the video and record the duration. Good Luck.
Wow. I am assuming they have done blood work and ruled out lots of possible causes. I would definitely be looking at the major children's hospitals (Cooks, Children's in Dallas) etc and trying to find someone to partner with you in finding a cause for all of this. I am amazed that after him being immobile, nonresponsive for 20 minutes that they did not see fit to run some tests, do a cat scan, etc. - especially if he has a history of left side weakness along with everything else. I tried searching some of the symptoms you listed and celiac disease came up several times. Here are some of the symptoms
Symptoms of Celiac Disease May Include One or More of the Following:
Recurring bloating, gas, or abdominal pain
Chronic diarrhea or constipation or both
Unexplained weight loss or weight gain
Pale, foul-smelling stool
Unexplained anemia
Bone or joint pain
Behavior changes/depression/irritability
Vitamin K Deficiency
Fatigue, weakness or lack of energy
Delayed growth or onset of puberty
Failure to thrive (in infants)
Canker sores inside the mouth
But they have probably already tested for that also. Keep us posted on what you find out and best of luck to you in finding a way to make him and you feel better.
Goodness, you have a lot to deal with! My thoughts and prayers are with you. You are a great mom to be reaching out to find anything that can help your son.
I do know that there are products out there that can support your son nutritionally so his body can be supported and be as strong as possible. I have someone I go to to ask health questions. If you are interested in having a conversation, let me know and I'll give you her contact info. She is very compassionate and knowledgeable and it certainly wouldn't hurt to talk to her!
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.
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.
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.
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
Are you still vaccinating him???
Laud
Hey A.. I understand how frustrated and probably angry you are because you want answers and no one is giving them to you. I was just wondering if you have been in to see anyone connected with the Scottish Rite? They have some amazing pediatric doctors and can help with financial need. I only say this because my nephew was born with Spina Bifida and he has been with the Scottish Rite (for almost 2 1/2 years now) and the doctors there since he as been born and he has some fabulous neurosurgeons (and other doctors) and they have always been able to get him in relatively quickly. I know that you have to go through your doctor to get any appointment with that organization. I would also like to comment that it sounds like to me that something is definitely going on with you son. I firmly believe that God give us moms a "sense" to know if something is wrong with our children. Go with it and fight like Hell to be heard and don't let anyone say to you that you are being overly protective or what not. And if any doctor seems to dismiss you, it may be time to find another doctor. I am not saying that that doctor is a bad doctor but they may not be "educated" enough in your situation to be able to find or determine your son problem. Good luck with your search and keep us posted. God be with you and I pray you will find the answers soon!!!
A., I don't have any idea what is going on with your son, but just go in fighting and screaming and demand answers. I think there could be a seizure issue, combined with something else. His story makes me so sad, and so grateful for the relative health of my son! I mean, he's always sick, had failure to thrive at 3 months, but is in wonderful health in comparison to everything you and your son have gone through. I really hope you get some answers soon, and I'll be praying for you guys. I will do some research when I have more time, and if I think of anything, I'll send you a private message.
Please keep us updated on what you hear.
K.
