The Scariest Week Of Our Lives

9 Replies
JulieK - June 18

Our son Jake, 20 months old, very suddenly over the course of a few days started to lose his balance. We of course assumed that he had an ear infection and took him to the doctor who put him on an antibiotic, but said his ear didn't look too bad, and it should clear up in a couple of days. Over the next couple of days, his balance got so bad he lost his ability to walk, to stand, and then to crawl. He also developed a facial droop on his left side. We rushed him back to the doctor, who said that if we wanted he could refer us to a Pediatrician, but he suggested we give the antibitotics time to work. We opted for the Pediatrician, and were sent to one at our local hospital who upon examining Jake ordered a CAT-scan to determine whether there was a brain tumor. The scan showed an abnormality in his cerebelum but they couldn't say what it was without more tests. We were then sent to a children's hospital about an hour away, where he was given an MRI and spinal tap. The diagnosis was A.D.E.M. (Acute Disseminated Encephalomylitis) Essentially, in response to a virus, his immune system started producing antibodies, but the virus had so closely copied the Myelin in his brain that the antibodies started attacking this too. Myelin acts in the brain the same way insulation does on a wire, without it the signal can't get through. The majority of the damage took place in the cerebelum which is responsible for balance. He has since been treated with immunoglobulin, and has responded very well. We are told that due to his age there is an excellent chance he will fully recover, that the Myelin will totally regenerate, and he will never have another episode. So far he is making incredible progress and is able again to walk. We will need to watch his development closely to be sure there was no permanent damage, and he is having some physiotherapy, but he is doing exceptionally well. I just wanted to share our story. As parents, we are our child's only advocates. Go with your gut. If you see that your child is not themselves, don't hesitate to seek medical help. Even minor symptoms should be checked out. Had we not persisted with our doctor, Jake's outcome would have been much different.

 

jessb - June 18

Oh my gosh!!! I am so happy he is going to be ok and fully recover. You are a very strong, brave person. You are right, who cares if we look like crazy obsessive parents, go with your gut and make sure you do what needs to be done for you baby!!!!

 

Lchan - June 19

I'm so sorry that you had to go through this. "Scariest week" just doesn't seem strong enough to describe what you went through. I'm glad to hear Jake's outcome is positive and that doctors expect him to make a full recovery.

 

CyndiG - June 19

Oh honey! That's terrible! {{{{a hug for you}}}} I can't imagine either of my girls being that sick. I think I would go back to that dr and give him a good smack. In love of course. :O} I agree that we are our kids only advocate. Sometimes you have to be downright ugly to get the care they deserve. I'm glad you stuck to your guns!!

 

sahmof3 - June 21

OMG! That is so scary! I'm glad he's making such excellent progess!!!!

 

kellens mom - June 21

I am forever thankful to hear stories like this with happy endings. He is so fortunate - not only because he is recouperating, but also because he has folks like you to make decisions for his well-being.

 

Lalla - June 22

oh my gosh - what a scary experience... I am so glad that you guys were persistant and saved your son from a very different future. I am glad to hear that he is doing so well. Good luck to you all.

 

tryingx3 - June 22

So glad he is doing better...this is one of the reasons I take my dd to a pediatrician instead of a general pract_tioner....

 

babybradley - June 22

Oh my.... I can only imagine how you felt that week... Im glad he is doing better... We take or children to a ped but not all the time are they helpful!!!! Its always best to go with your maternal instincts!!!!! Im so glad Jake is doing better!!!!!!!!!!

 

Amy_mommy - June 22

omg. that must been the SCARIEST of the week. i would probably be like crying and all. but that won't help. i'm so glad Jake is doing well. take good care of him. god bless

 

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