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Avatar universal

Acute cerebullar ataxia? 15m old

I have a 15month old son who since late December has been losing ground developmentally. He walks like he is drunk. His balance while standing is poor at best, He will just stand there and fall over either face first or sideways without even trying to break his fall. He is now having trouble sitting. Without support he will teeter and totter until he falls over. He has lost words and now says ma and da but mostly babbles like an infant. His face swells up to the point that his eyes appear as slits at times. This is mostly after waking but can happen at anytime. There is more but I can't remember everything at this point. Up until Jan 8th his pediatrician has said it was probably a cold or virus that is just throwing his balance off. On the 8th we were at his Dr for a well check up and we got to see his regular Dr not whoever happened to be there like we do for sick visits. His head size has gone up 7 percentile points since his last check up to the 97th percentile. He also had a seizure while there. He did not have tonic-clonic or grand mal seizures but his eyes rolled to the back of his head while we were changing his diaper and he got all floppy. He didn't try fighting us like normal while changing him. He never tried to get up. He just laid there alternating between eyes rolling to the back for a few secs and then looking through me or responding to me in anyway. When it was over he got real lethargic and slept for a long time. He had another a few days later (I am pretty sure it was a seizure but he was asleep and I couldn't evaluate his mental state). We were sent within 2 days for a cat scan which came back normal. On the 14th we went to the neuro for an EEG and that came back normal but we ended up getting admitted to Children's Hospital of Philadelphia (CHOP) that day from the office.

We have just returned home from a 4 day stay at CHOP. It was a completely unexpected turn of events. We were only going to the neuro Dr office for a EEG and ended up being called back to see the Dr and then sent straight to the hospital. EEG was normal but the Dr was concerned after hearing his history and story from her tech and nurse. As of now. My son is worse than when he went in. He now can't sit without bobbing and falling. They are calling that truncal tibulation (spelling may be off here. I am so tired I can't think straight). He has had all sorts of tests with nothing really coming up. "The MRI appeared normal or relatively normal" no one would tell us what "relatively" means. They kept talking about something showing up but that it wasn't in the area of the brain that they believe the problem is (cerebellum). I kept asking but no one would tell me what the rest of the results were. I asked for the report so I could look it up myself but I was told I had to request it and it would be sent to me. I put the form in before I ever left the place. At this point they are saying they don't know what he has exactly but his discharge diagnosis is acute cerebellar ataxia. That is a symptom not a cause but they don't know the cause yet. They wouldn't give him steroids because they say that the risks out weigh the benefits at this point. They are hoping his body will repair itself and are waiting for him to plateau or get better. If he gets too bad and I don't feel he can be cared for at home anymore I am to bring him back or to me nearest er and they will transport him back (we live 1 1/2 hrs away from CHOP). I can't say I am comfortable with any of this. The Dr who saw him in the office and admitted him to the hospital on Monday saw him again on Thursday and couldn't believe how bad he had gotten. Now we are sent home no better but worse with no answers except for what he doesn't have. I am at a loss and I am scared. To watch my son regress months in development in such a short period of time and to do nothing but wait is killing me. The Dr's told me that there is no chance of permanent damage and that he will return to normal but I looked stuff up and I know it is rare but this can result in permanent damage and development loss depending on the cause and no one knows the cause at this point. Any body have any input or experience with this. Cause I am completely drained physically and emotionally and can't think anymore. I don't know what to do at this point. Anyone's input or experience would be helpful. Thanks.
7 Responses
Avatar universal
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.
Avatar universal
hi drumwidow,

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.
sending prayers
Avatar universal
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.
Avatar universal
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
Avatar universal
Acute cerebellar ataxia

Contents of this page:
Alternative Names
Exams and Tests
Outlook (Prognosis)
Possible Complications
When to Contact a Medical Professional

Alternative Names    

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.

Avatar universal
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.
Avatar universal
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?
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