Son diagnosed with stroke then ADEM???

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Son diagnosed with stroke then ADEM???

Postby Tobysmom » Tue May 04, 2010 6:09 pm

I have a 17 month old son that has been idagnosed with ADEM about 3 weeks ago. He was originally diagnosed with stroke Feb 2010. He seems to be back to normal other than being a little unstable although dr says that is normal. I am looking for other parents with small children with same disease for answers. Thanks in advance for your help.
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Re: Son diagnosed with stroke then ADEM???

Postby earthvibes06 » Sun May 16, 2010 2:26 am

My 11 mo old son was diagnosed with ADEM 3 weeks ago. When we brought him into the ER they did a CAT scan and they told me he had a brain tumor. Then after an MRI, they told me he had a stroke in the left posterior watershed area of the brain. Then after another MRI of brain and spine, MRV, MRA, EEG, spinal tap, ultrasound of the heart, and 2 EKGs he was diagnosed with ADEM. He was in the PICU for 5 days on a ventilator and 4 more days on the pediatric floor. He received 5 days of IV steriods and is now on a 6 week steriod taper.
He went from being paralized to regaining all function except he is slower. I'd say he is about 70% back to normal. But he is shaky and his left eye is crossing. We are patching his eye and he is seeing an optomologist tomorrow. I know the opto team in the hospital didn't see any inflamation in the backs of his eyes, so I'm hoping his eyes will uncross soon.
My main issue now is anger. He has been crying since last Tuesday. At first I thought it was his bowels, because they pretty much shut down from being intabated. But those are becoming more regular. But when he wakes up, he screams (for hours). Unconsolable. We try every distraction and it will work for a little bit but not for long. Do you find this story is similar?
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Re: Son diagnosed with stroke then ADEM???

Postby Tobysmom » Mon May 17, 2010 5:08 pm

No, fortunatly for my son his symptoms were not as severe as yours. He had 4 episodes leading up to the "stroke" dx. The last 3 episodes were bad to the point where he could not walk, hold up head and his eyes would roll around. He never loss consciousness, nor had any vision problems that we know of and was in PICU for only 2 days and only because he was sedated for so long they wanted to keep a close watch on him. Then about 2 months later he had a nother mild episode where he could not walk for about 1 hour and thats when he was dx with ADEM after a different neuro saw him and had another ct and MRI. He was given 2 rounds of IVIG bc the Neuro said he did not want to treat him with steroids bc it would weaken his immune system. We have had 1 other treatment since and will have 1 a month for a while. When he was given the last IVIG treatment we were told that his Thyroid levels were elevated and may have another auto immune disease called Hashimoto disease which can hereditary. I am so scared to go back to the dr bc it seems like everytime we go its something else. I am not sure where you live but there are 6 research groups in the US that research nothing but Demyelinating diseases like ADEM and MS in children. You can google CPODD and can give you more info. Thanks for your reply.
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Re: Son diagnosed with stroke then ADEM???

Postby KWinVA » Thu May 27, 2010 6:48 am

Our son is 18 months old and was diagnosed with ADEM at the end of April. Fortunately,the doctors were very quick to make the diagnosis and get him on the steroid treatment. I believe that is a huge reason for his recovery being so successful to this point. He too, had the lesions attack one of the nerves that control the movement in his right eye and consequetly caused his eye to cross inward and he could not walk. (That is what put us in the hospital in the first place)

Other symptoms included: clumsiness the week leading up to the diagnosis, clingy, unusual grunting and fussiness in the mornings (which we believe was due to headaches) minor shaking/trembling in the morning and often going to bed early in the evening because he was so tired.

Treatment: After the steriod treatment (300 mg/day for 5 days) he was put on a 6 week taper. (10 mg/day for 2 weeks, 6 mg/day for 2 weeks, 2 mg/day for 2 weeks) We are now half through that process and have been very encouraged. We did make an emergency trip back to the hospital one day because he was displaying a few of the symptoms he had leading to the diagnosis. The neurologist was on-call and spoke with a nurse from the pediatric ER and informed her that it was not uncommon to have a "set back" during the recovery and we were discarged without any tests. So far, he is moving forward. We have been patching his good eye for one hours, twice daily, in order to strengthen his weaker eye. The results of this treatment have so far been successful, as his "bad" eye is about 90% back to center.

Recovery: He was definitely cautious, slow and unstable after we got home. We are trying to keep him active and stimulated so that he can re-learn those motor skills he had prior to the attack. He is young and still developing motor skills, so re-learning and gaining confidence is very much a possibility. If you live in an area that has a children's enrichment center or gym (such as Romp n' Roll, My Gym, Gymboree, JW Tumbles, The Little Gym, etc...) then I would highly recommend taking advantage of what these facilities have to offer. Your little one will have a safe open environment indoors to re-learn those skills.

This is such a scary disease that attacks sooo fast. My heart and prayers go out to all of you and your little ones. I hope that all of our children are able to fully recover and live the life that they were on track to do before their attacks. From a medical perspective, what I have learned from this experience is that the Dr.'s don't know anything with certainty when it comes to ADEM. If you feel that something is still "not right," get your child back in the hospital. It's okay if it is a false alarm!
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Re: Son diagnosed with stroke then ADEM???

Postby kckteach » Sat Jun 19, 2010 7:21 pm

My daugher had ADEM in November. The doctors told me her stroke was a result of the brain swelling caused by ADEM.
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Re: Son diagnosed with stroke then ADEM???

Postby kckteach » Sat Jun 19, 2010 7:23 pm

Hi again! I also wanted to say that my daughter have VERY severe symptoms and went several days with her conditioned undiagnosed. She has made what I would guess to be about a 95% recovery! It is amaznig how well these little ones do!!
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