HELP

[Drumwidow]

This is alot of info and pretty long but I need help. I have been through alot in the last few days & need some guidance, some idea of what is going on. I am not an inexperienced mom I have 4 kids from ages 20yrs to my 15 month old. I also have a nursing background. But I have not had to deal with a scare like this since my oldest fractured her skull over 18yrs ago.

My 15 month old son (full term, normal delivery, healthy minus a few bouts of bronchitis) started walking at 12 months old and was doing very well. He started to have trouble with his gait. He looks like a drunken sailor when he walks. He falls all over the place. Safety has become a major issue. He will just be standing there & fall over face first. I noticed it & told his Dr's but I think because I am with it everyday I didn't realize how bad it had gotten. When my family came over at Christmas my mom & Aunt were very upset by what they saw and told me I had to get the Dr's to do something. Up to this point they just kept writing it off as he has only been walking only a few months & is just learning (the fact that he is regressing did not compute with them) and a possible virus. On Tuesday he had a well visit and when they did his measurements his head circumference jumped from 90th to the 97th percentile since his last visit. We went to change his diaper before the Dr came in & he had a seizure. His eyes rolled to the back of his head, he would not respond to us & he was floppy. When he came out of it he was very lethargic. He fell asleep in the car on the way home (which he almost never does) and slept for hours.

Now my Dr's are listening, He went today for a cat scan and had to be sedated for that and Monday he goes for an EEG. When we get those results the neuro Dr will decide how fast he needs to be seen. I say he needed to be seen on Tuesday when it happened. Just 1 of these things wouldn't bother me too much but it is the whole picture that scares me to death.

I am not the type of person who can wait to find out. I can't be shocked at the Dr's office. I need to research this and get some idea of what this could be. Has anyone had any experience with anything like this. I am more afraid of the unknown then of getting all the info I can.

[Drumwidow]

Update. We have just returned home from a 4 day stay at Children's hospital of Philadelphia. 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 cerebullar 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 the ped hospital). 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.

[Drumwidow]

Thank you for your comment. I am happy you said hydrocephalus (sounds strange I know). But, that is exactly what I kept coming up with too. It just makes sense. It fits all the symptoms. I agree, no one wants anything to be wrong with their child but I KNOW that something is wrong. I know that all the blowing off the drs have done to this point (up until his seizure) was wrong and I felt helpless. I know with a deep gut feeling that this is not just a bunch of inconsequential coincidences. I also agree that hydrocephalus is the lesser of the evils. My son had his cat scan and they say that it was negative but I believe that they were looking for tumors. I did speak to someone who has 2 kids with it (she adopts kids no one wants) and only 1 child had it show up with a cat scan. The other child had to have a MRI. That will be my next battle after his EEG on Monday. Anyone with any other ideas I am all ears!!!

[RockRose]

Have they mentioned hydrocephaly?  The staggering gait,  seizure and sudden head growth look like he might be hydrocephalic.  That's not great news,  I know,  but it's probably better than some of the other things you're thinking - and there is treatment.

I found this other post on this same forum,  with some information.

http://www.medhelp.org/posts/show/310664