please. Someone read this and give me some guidence. I am at a loss as to what to do. My son is rapidly regressing with no end in sight. I don't know where to turn or what to do at this point. He is a such a happy and easy going baby that I think the dr's are not acting the way they should because of it. They just assume he can't be too bad because of the way he acts but I have taken him into the dr with pneumonia & 103.1 fever and when the dr walked in and looked at him the first thing she said was are you sure this baby is sick? Until she examined him and listened to his lungs that is. Anyone with any advice, ideas, experience with anything like this please help me.
i can only imagine you must be scared,
i will say, trust your motherly instinct. AT the VERY least, you deserve complete explaination of what the doctors are thinking and then explainationsof all tests and procedures they have preformed along with all the results. This is your baby, and you have hired these doctors to help.
I presume he been seen by Pediatric Neurologist at the hospital?
Does he seeem top be improving all all yet?
While yourself having copies oof files and tests, it is they duty to discuss them with you.
If you are not comfortable wit h them sending you home, at least calll them again, talk with the docotrs, not a nurse or anyone else,
go over alll your concerns .
And remebr you can have second oppionions.
i wish i could help more, i know it is hard whennn yoour c hild is sick.
Thank you for your post. We aren't getting anywhere fast with Dr's right now. Yes we saw pediatric neuro Dr. We went to what is supposed to be one of the top pediatric hospitals in the country. Child magazine rated it the top one. When it came to the nurses and other staff I would agree completely. The dr's are another story. At least the ones we saw. Some were great others acted like I was an idiot and just kept sugar coating everything and arguing with me. So far my son is about the same. He has lost all his words. He will parrot words at times but he won't actually use them. The new game plan at this time and because my ped dr spoke to the neuro dr that will be following us out of the hospital is that our ped dr will be seeing him on a weekly basis and reporting directly back to the neuro dr. We will also be seeing the neuro dr every 2-3 weeks indeffinatly. I waiting for the reports on the mri and spinal tap to come before I get him in for a second opinion because it will be useless without these for the dr to look at. I was not allowed to leave with the reports. I needed to put in a request and wait for them to be sent to me. I put the request in before we left the hospital. If there time is right I should be getting them this week. I guess we will see.
Connor can use all the prayers he can get. Thank you again.
I am the mother of a now 13 yr.old son. I have been dealing w the same problem you are having since my son entered school @ d age of 4. We went through CT scans, MRI testing, you name it; we done it. All tests came back normal; and like you the doctors all told me he would grow out of it (go with your instincts) be patient; it'll turn out for the best. Today I regret not believing in my instincts enough to research what was really going on with my son. Don't settle for what anyone tells you, not a doctor; not a specialist. No one knows your child better than you; find the answers & solutions to help your child; don't wait with regret like I did.
From: Someone Who Knows Your Pain
Acute cerebellar ataxia
Contents of this page:
Exams and Tests
When to Contact a Medical Professional
Cerebellar ataxia; Ataxia - acute cerebellar; Cerebellitis
Definition Return to top
Acute cerebellar ataxia is sudden onset of uncoordinated muscle movement.
Causes Return to top
Acute cerebellar ataxia is most common in children, especially those younger than 3 years old. It often occurs several weeks after a viral illness. Viral infections that may cause this include chickenpox, Coxsackie disease, Epstein-Barr, and mycoplasma pneumonia. Exposure to older insecticides called organophosphates may also cause ataxia.
Symptoms Return to top
Ataxia may affect movement of the middle part of the body from the neck to the hip area (the trunk) or the arms and legs (limbs). When the child is sitting, the body may move side-to-side, back-to-front, or both, and quickly move back to an upright position. When a person with ataxia of the arms reaches for an object, their hand may sway back and forth. Common symptoms of ataxia are listed below.
Sudden, uncoordinated movement
Walking problems (unsteady gait)
Sudden eye movements (nystagmus)
Clumsy speech pattern (dysarthria)
Exams and Tests Return to top
The doctor will ask you if you have been recently sick, and try to rule out any other causes for the problem. The following tests may be done:
CSF total protein
CT or MRI scan of the head
Treatment Return to top
Ataxia may go away without treatment after a few weeks to months. However, physical therapy may be helpful in improving coordination.
Outlook (Prognosis) Return to top
Full recovery usually occurs without treatment within a few months.
Possible Complications Return to top
Movement or behavioral disorders may (rarely) persist.
When to Contact a Medical Professional Return to top
Call your health care provider if any symptoms of ataxia appear.
References Return to top
Eicher T. Toxic encephalopathies. Neurol Clin. May 2005; 23(2): 353-76.
Cohen J, Powderly WG. Infectious Diseases. 2nd ed. New York, NY: Elsevier; 2004:309.
Long SS, Pickering LK, Prober CG. Principles and Practice of Pediatric Infectious Diseases. 2nd ed. New York, NY: Elsevier; 2003:147-148, 296-297.
Update Date: 8/9/2007
Updated by: Daniel Kantor, M.D., Director of the Comprehensive MS Center, Neuroscience Institute, University of Florida Health Science Center, Jacksonville, FL. Review provided by VeriMed Healthcare Network.
i don't know if u still log in here. But i myself am experiencing this type of problem with my son. It has been going on for 3 months or so and but my son has been showing improvements. They did all types of exams to him, u name it an MRI, Spinal Tap, EKG. He has been going to physical therapy and speech therapy for about a month and he seems to be getting stronger.
It has been exhausting and frightening to see a healthy 2 and 1/2 year old boy, to get diagnosed with acute cerebellar atoxia. I pray and have faith in our Lord and savior that our son will over come this. I will like to know how your son is doing? God bless you and your family.
My son is also experiencing similar symptoms just not as severe. He has balance issues and tremors. He was diagnosed with cerebellitis in September and we are still dealing with the same symptoms. How is your son doing now?