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.
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