Discussions By Condition: Nerve conditions

15m old w/ cerebellitis

Posted In: Nerve conditions 10 Replies
  • Posted By: Drumwidow
  • January 24, 2008
  • 02:27 PM

My son is 15 months old & was developing normally, reaching all his milestones on time along w/ his cousin who is 2 weeks older. Around Christmas we noticed he was falling alot & walking like he was drunk. Even standing he would wobble & fall over. Before this he was running. His stance widened to compensate. He does not fall on his butt like normal he falls face first, sideways or backwards. He doesn't even try to break his falls which is a normal instinct. We knew right away that something was wrong but our pediatrician always gave the same pat answer. He has only just learned to walk, he has a cold & sinus probs which are probably throwing off his balance & my all time favorite was "he is sick (he had bronchitis) & viruses can do all sorts of strange things".

I didn't realize how bad it had gotten until my family saw him at Christmas. My mom was extremely upset. She watches his cousin every day & the he was not only losing ground but she was way ahead in milestones now. Connor can hardly walk and his cousin is now climbing up & down off the sofa.

On Jan 8th we had a reg well check up w/ our primary ped dr (sick visits you get whoever is on that day). Connor's head size had grown to the 97th percentile from the 90th previously. The rest of him in comparison is height 50th and weight 75th. While we were waiting for the dr to come in we were changing his diaper & he had a seizure (new development). His eyes rolled to the back of his head & would stay there for a min or so then he would look at me but not see me then he would do it again. He wouldn't respond to me at all. His arms & legs got all floppy. When it was over he was real out of it & then slept for hours after. At this point our pediatrician knowing us & my son said he needs a CAT scan asap. Even though she didn't actually see the seizure she took it seriously. On the 10th he had what I think was another seizure but I can't be sure because he was asleep & I couldn't evaluate his mental status. His right leg was moving back & forth rhythmically. He had never done this before.
We had the cat scan which came back normal & were sent for an EEG before we ever saw the neuro dr. EEG came back neg too but the neuro dr heard our story from her tech & nurse & called us back before we even left the parking lot. After examining him she put my son into Children's Hospital Of Philadelphia (CHOP) for more testing.

Connor had an overnight EEG which was neg. They sedated him(another horror story) & did an MRI & a spinal tap. This is over 4 days time & Connor worsened while we were there. He now was having problems sitting with out bobbing, swaying & falling over. His walk is much worse when he walks at all. He lost words he had been using. Now he babbles like an infant & doesn't use any of the words he had before. He won't even try to feed himself except for a bottle (won't take a sippy cup anymore). The neuro dr who admitted him to the hosp on Monday saw him again on Thursday & couldn't believe how much worse he was. Then on Friday they sent us home. They said all the tests are done, there is no treatment that they will do as of now. Steroids are our only option but they feel that the risks outweigh the benefits at this time. My son left with a diagnosis of Acute Cerebellar Ataxia (which is a symptom not a cause).

My primary ped dr called the neuro dr & I now have a diagnosis of Post Viral Cerebellitis. They THINK that is what he has. I was told if at any point I feel this is getting so bad he can't be handled at home they will put him right back into the hospital. Then the Dr's tried to tell me that there is no chance of permanent damage from this. I know better. I am a disabled RN & know how the inflammation process works & I did research. I know not all kids recover from this.

I have been looking for posts everywhere about this & there are only a few posts that I have found & they are not very encouraging. I am scared. To watch my son lose months of development in such a short period of time is killing me & to not know if this is going to plateau & get better like the Dr's are hoping is so hard. I feel like they should be doing something & I am constantly told that there is nothing to do at this point it is so frustrating. I am on constant guard duty to try to keep him from hurting himself. As I stated earlier I am disabled & the worry and guard duty is making me much worse. I am not finding much on the web about this either. I want to find families that have dealt with this I don't want the pat sugar coated answers I keep getting from his dr's. The stories I did find all the kids had some sort of residual damage from imbalance problems yrs later to 7yr old kids not able to crawl and in diapers. Is it really that uncommon? Anyone have any experience with this? I could use all the help I can get.

I knew he had regressed but I didn't realize how much until I saw my niece and what she was doing. They were always days apart in reaching milestones. Now there is no comparison in what they can do. She is climbing on and off sofas and running, talking and just doing things that Connor is so far from doing. He has trouble standing. I had a really low day yesterday and I haven't really recovered. I just want to crawl into bed and cry but I know I can't cause my son needs me not to mention my 3 other kids. I just need some answers no matter what they are and someone to talk to about this. I won't unload too much on hubby cause he gets over whelmed and then depressed and I don't need to feel the guilt of that so I am just plodding along and keeping it all inside.

Reply Flag this Discussion

10 Replies:

  • Hi I was reading you story about your son and that story sounds so much like mine. My son was misdignosed with post viral cerebellitis he was ( April of 2007 and then 12 weeks later we figure out he had Opsoclonus- Myoclonus Syndrome. I just wanted to share my story with you about my son. If you like you could e-mail me at tarawoodman@comcast.netTara
    tarawoodman 4 Replies Flag this Response
  • Hi I was reading you story about you son and that story sounds so much like mine. My son was misdignosed with post viral cerebellitis April of 2007 and then 12 weeks later we figure out he had Opsoclonus- Myoclonus Syndrome. I just wanted to share my story with you about my son. If you like you could e-mail me at tarawoodman@comcast.netTara
    tarawoodman 4 Replies Flag this Response
  • I'm late on this, but Tara is correct. It's most likely OMS. If only it were an area cell tower!You've probably already gotten your answer to this, but just in case.
    Anonymous 42789 Replies Flag this Response
  • Hope you've already found an answer but just in case, make sure he is tested for Celiac Disease.
    dizzy lizzie 192 Replies Flag this Response
  • You aren't late on this. We are still struggling and fighting for answers. I can't be sure but I think Celiac's disease was tested for. We are supposed to see the metabolic team again soon so I will make sure to check on that. Connor is now 21 months old and he is still suffering. His walking has gotten so bad with so many injuries to himself that he now wears a helmet whenever he is on the floor to play. He has fallen so far behind developmentally that he has therapist in the home to help him. They tested him to see if he qualified and he averages around 8-9 months on most things. Some area's he only hit 3 months another was 12 months but nothing higher. Dr's still aren't sure what is going on with him. We have had every test they can think of and then some and seen every dr that chop (Children's Hospital of Phili) can throw at us and now they want to start sending us to NY. We have had 3 different diagnosis by 3 different people but no one is sure of anything. We have been told Post Viral Cerebellitis (even though he is way past all text book cases where he should be better by now), Leukodystrophy(sp) & mitochondrial disease. We were supposed to go into the hospital this week to try IVIG therapy but our insurance co has refused to pay for it. Our Neuro dr spoke to the medical director of the insurance co and they still refused to approve it. So, once again we are in a holding pattern just waiting while my son continues to fall farther and farther behind.
    Drumwidow 7 Replies Flag this Response
  • I am really sorry to hear that. Have they done genetic testing? I know there are a few recessive disorders out there. I'm not a doctor but just trying to help with my limited knowledge from researching my own mystery diagnosis. I hope they find something out soon. I know from personal experience how frustrating it is when you can't get your body to work right and nobody can help you fix it.
    dizzy lizzie 192 Replies Flag this Response
  • Sorry to hear that you are struggling too. They have done some genetic testing on my son. The one thing they were testing him for specifically was Mitochondrial disease. That test done genetically or from the blood only has a 30% chance of showing anything even if he does have it. The next step is a biopsy of skin and muscle. They wanted to give the IVIG therapy a chance first before putting him through that. Now I am not sure what they are going to do since insurance decided that there is not enough documented evidence that it will help so they won't cover it. If this is a post viral cerebellitis then it is not healing itself like it is "supposed" to. All the text books say that it only takes at the most 4 months. We are way past that so there isn't a whole lot out there to document what to do next. I am not sure where we are going to turn now. I had so much hope pinned on him trying this therapy. To see my son losing ground and falling farther and farther behind developmentally is killing us. To know we can't afford to say go ahead and do the treatment anyway is even worse.
    Drumwidow 7 Replies Flag this Response
  • I know how you feel. It's pretty horrible. I wish I could help more. But please stay in touch for moral support if nothing else.
    dizzy lizzie 192 Replies Flag this Response
  • Just to give a quick note to the idea of OSM as a diagnosis. Connor does not have the eye movements or the jerky muscles of OSM. But, to be sure after reading the posts I checked the dr's reports and OSM has been ruled out. He also saw a pediatric eye dr and as far as his eyes are concerned there was no problem at all with them except they are not symmetrical. There is just something about his left eye that is off. I can't put my finger on what it is exactly but most people notice it right away. Any other ideas? I am all for any ideas anyone may have. I have been up for the last 4 nights till all hours of the morning trying to research and come up with something or somewhere else to go with him. I just keep hitting dead ends. Just a whole bunch of things that he has had ruled out. Any & all ideas or advice is appreciated. Thank you to everyone who has taken the time to write with their ideas!
    Drumwidow 7 Replies Flag this Response
  • Hi DW,Hope you are holding up well considering your son's dilemma. I was reading through this thread and wanted to mention a few short things. A *general* rule of thumb for post-viral de-mylenation syndromes is that the afflicted indivual should regain function at the same pace that it was lost. For instance, your son had progressive axial dystonia/ truncal ataxia that developed over N days and then begins to improve. You can expect for function to improve to 'normal' levels in N days.That said, it would seem that this is not the scenario that you are experiencing. The differential in your case is enormous, so i wish you and your family good luck.
    fewd4thought 126 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.