New to Forum--ADEM diagnosis (differential to MS)

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tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 6/28/2009 8:34 PM (GMT -6)   
Hi all! I just found this forum! I was diagnosed in Feb. with acute disseminated encephalomyelytis (ADEM). I was intially thought to have MS. It hit, but pver the course of a few days to a week got very bad and the neurologist began to think it may not be MS. My spinal tap came back and were not typical for MS plus I had recently had a viral infection, which leads to ADEM.  It demylenates like MS so the diseases look very similar on MRI. They are also treated similar, with steroids, then rehab. So it's nice to be able to share with some others who have dealt with a similar situation.  I'm only 23, so it was a pretty scary situation. After 4 months, I am done with rehab now and well on my way to recovery.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/29/2009 11:05 AM (GMT -6)   
 
Welcome to HealingWell and the MS Forum.  I am so glad you found us and I know you will soon be meeting other members of this forum.
 
Meanwhile please know you have joined a wonderful peer support forum.
 
Kitt

 

Kitt,
Moderator: Osteoarthritis & GERD/Heartburn
Co-Moderator: Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


Bteeters
New Member


Date Joined Jun 2009
Total Posts : 8
   Posted 6/29/2009 2:52 PM (GMT -6)   

You are so lucky to have a clear and final diagnosis so soon.  I went to Dr's for years before becoming acute with MS and being totally disabled the rest of my life at the age of 47.  I have never heard of your disease and I give thanks for you at this age for there being a remedy to your problem.  MS is so very hard to diagnose as all Dr's say - it seems to mask so many other things in the body.  Maybe someday there will be more definite MS guidelines for Dr's to pursue.  NOt once was MS mentioned by ANY of the Dr's I had gone to.

 

Prayers and Blessings

Barb yeah


PRAYERS AND BLESSING!
 
Barb
 
 
 
I HAVE MS BUT MY DISEASE IF NOT ME!


tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 6/29/2009 3:16 PM (GMT -6)   
Wow! I do feel very fortunate. I was sick for a few weeks and no doctors took me serious until I came across a great doctor. He immediately did an MRI and thought MS, but after I quickly declined a neurologist diagnosed me with ADEM. about 30% of ADEM patients go on to be diagnosed with MS, but it tends to be more often ones that present with vague symptoms. Mine was pretty a hard hit. I went from totally healthy, to in a week in a wheelchair. I had left sided numbness, low grade temp, vomiting, gait problems, slurred speech, lethargy, and motor deficits. I had a recent epstein barr virus which can lead to ADEM. They did a spinal, and I had no OC bands and other MS specific findings, so that lead them to believe ADEM. Luckily, I have had a good recovery. Many patients have life-long deficits. I am not 100%, but I am functioning pretty normal, so I am happy. I can relate to the MS syptoms, except mine all came at once and hit strong. Very odd and rare disease that is similar to MS. I actually am seeing a regional MS expert neurologist in Kansas City in August for a check up since they are so similar. I hope all goes well! I hope the best for you in your continued battle! Keep your head up! God bless!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 6/30/2009 9:01 PM (GMT -6)   
Hey tkeys,
 
Welcome to the board.  I am so glad you found us.  I would hardly call you lucky since you have been diagnosed with a serious and potentially disabling disease!!!  I am so happy so hear that you are responding to treatment.  It is a wonderful thing to talk to others who understand first hand what it is that you have experienced. 
 
I am sorry I am so late responding here.  I have been out of town camping with my family.  Again, welcome to the board.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/1/2009 8:18 AM (GMT -6)   
Hi TKeys and others,

Our 7 year old son had a seizure just out of the blue a couple of months ago which scared the living daylights out of us and what was to follow also scared the living daylights out of us even further. After calling an ambulance immediately he was rushed to the hospital and on the way he vomited and had another seizure. Prior to these seizures he was an extremely fit and healthy boy with absolutely no signs of ever having any problems that could cause such a terrifying event. After the first seizure he lost all feeling and movement in his left arm which he later gained control of after 24 hrs.
At hospital they did the usual CAT scan and found nothing so they did a MRI spinal and head test and Lumber Puncture. The MRI revealed some very minor lesions on the brain however the spinal fluids showed nothing thank God. At that time he was diagnosed with ADEM and given Methyl Pretnolozone IV for 4 days and then allowed to go home. Unfortunately this was not a long enough Steroid treatment and he developed optic neuritis almost immediately. He was then readmitted into hospital and put back on the IV steroids for another 4 days He was given another MRI and the neurologist gave a very encouraging result stating that the lesions had almost completely gone away and that it was all looking very good for our son. He was then given oral steroids to take at home for another 7 days. Unfortunately again he developed Optic Neuritis yet again so he was put on Oral steroids again but this time for a longer dose of 6 weeks and stronger dose tapering down. He has only got one more week until the Steroids are finished and we are extremely worried that the Optic neuritis will return and that the doctors and neurologist will diagnose him with MS. We have heard about a PET ( Positron emission tomography ) scan and that it is a far greater resolution scan and are wondering if it is possible to get one of them done so that we can get a better diagnosis.

God Bless everyone,
Bradley

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/2/2009 9:58 AM (GMT -6)   
Hello, I am glad to hear I am not alone, although I am very sorry your son had to go through this awful disease. I also had a relapse because I only did 3 days IV steroids at first, then got better for a few days then quickly declined. I was admitted to the hospital and did 5 days of 1000 mg. I then tapered starting at 60 mg down to 5 mg for about 6-8 weeks (I can't recall exactly). I am going to KU Med Center in late August for a follow up with a regional expert in MS (but really she knows about demylenating diseases) and hopefully she will have good insight about my recovery. I was diagnosed in February, out of the hospital mid March and done with outpatient rehab in June. My spinal was also clean (no OC bands or other MS-related findings). My doctors thought it was MS at first because of my age, but I had SOO many symptoms and a clean spinal and it just didn't act like MS, plus I tested positive for recent epstein barr virus.  I know this is a weird disease and I will check into what the specialist believes about the better imaging machine, because they probably have the capabilities there.  Since your son is young, he is the typical ADEM case and sounds like he will do well!! Good luck and God bless!!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/2/2009 3:34 PM (GMT -6)   
Hi Keys,

I must say we feel so blessed with your kind encouraging words. I will be praying for you for a positive result from your follow up exam in the coming weeks.
Our son ( Jonathon ) got a bad case of panic attacks two days ago which was pretty scary but he seems to have pulled out of it pretty quick thank God. I did a lot of research on the internet and was able to apply the correct ideals and swing him around.
You can see a pic of us at our furniture store by visiting www.beerwahsecondhand.com
We live in Australia but are here in NY on our 6 week holiday. Our Doctors and specialist recommended we still go on this holiday and advised u to keep him free of exercise as much as possible which we have been doing however the other day we took him to see the new movie G Force and didnt realize that the 3D feature would have an effect on him and we had to leave the movie about a third of the way through due to him being uneasy and then as soon as we got back to our Hotel he got he panic attacks. We both feel like very bad parents for taking him to this movie I can tell you.
I really feel for you having to have to go through this already 6 month ordeal. Here is a link to some info on the PET scan I was talking about.
http://www.radiologyinfo.org/en/info.cfm?PG=pet

I have taken note of your epstein barr virus and will forward this onto our Doctors upon return to Australia for possible analysis with his bloods at the time of the seizure. He didnt apear to have any virus or infection at the exact time of the seizure however our Doctors records do reveal a course of oral anti biotics was given 5 weeks prior to this event for a minor throat or chest infection. Both my wife and I were also given anti biotics around a week before and week after the time he was given the medicines so we are hoping the 3 of us all contracted the same virus.

Sincere Prayers to you
Bradley

BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/2/2009 3:54 PM (GMT -6)   
One other thing that I forgot to mention to the Doctors and will be bringing to their attention upon our return to Australia is that I can recall a few weeks before this event I carried Jonathon to bed by his feet from the lounge to the bedroom on a few occassions as he very much liked it and he got to the point where he demanded that I do this however I chose to put a stop to it after a short time as I didnt think it was a good idea. I am wondering if any of this bought on the illness. What are your thoughts on that?
Please dont get the wrong idea and think that we are bad parents. I can even recall getting sacked from a job once for stating that some people dont deserve to have children and I said this when I was working in a large Hotel chain where there was a day spa for children of all ages and we were told during training that the day spa was open from 5 am until 8 pm due to the fact that some parents in the permanent accommodation areas would leave their children including infants in the day spa for as long as 12 hours a day so that the parents could continue on with their " career ". IMHO I feel that the child/infant NEEDS to be nurtured by the real parents and not fill in parents. I was promptly sacked for this. Mind you, the very next day ( amazing miracle that non Christians call " coincidences " ) I saw on a tv show called Judge Judy and she actually told some people fronting court that it is people like them that dont deserve to have children. Unbelievable. Thank you God for backing me up there.

Bradley

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 8/2/2009 8:28 PM (GMT -6)   
Hey Bradley,
 
I don't have any experience with ADEM but I have been following this thead about your Jonathon.   I can't imagine that holding him by his ankles caused him any harm.  I can see doing that to my own boys.  Boys are such thrill seekers and love that sort of play.  Please don't beat yourself up about it.  I can just see him laughing and playing while you fly him to bed. 
 
PET scans are very expensive.  They can tell a lot and can rule out any sort of cancer or tumors in the brain.  I don't think you want to pay for that though.  If insurance will pay then by all means do this. 
 
I know that with optic neuritis I have a slight visual delay on things getting to my brain.  This causes visual stimulation to create interesting sensations.  I can remember taking my boys to see the bee movie a while back.  That movie just about sent me over the edge with the flying parts.  I had horrible vertigo and could not watch some parts.  This may be what Jonathon experienced.  If he is experiencing this sort of visual over-stimulation, then that may be the source of his panic attacks.  Have him close his eyes and see if this helps. 
 
I saw your sweet picture.  You are very blessed.  Also, we share the same last name!  Your family and especially Jonathan are in my prayers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/2/2009 9:13 PM (GMT -6)   
Bradley,

From what I have read, ADEM is most often preceded by an upper respiratory infection. I bet that was the preceding factor for your son, not carrying your son upside down. I have done that with my little cousins at times since they love it too (It's a boy thing I think!). It's funny that you mention the movie, because last weekend my husband and I went to the new Transformers movie in the IMAX cinema, and the very action packed parts hurt my eyes some and made me slightly dizzy. I also had optic neuritis. I just had an appointment with the eye specialist this week and he took a picture of my retina/optic nerve and he said it all looked perfectly healthy. I think it just takes time for everything to get totally back to normal. Plus he could only see the front of the optic nerve, not what goes back into the brain. I'm sure as a child not understanding what's going on could cause such panic. I am still on an anti-depressant because I was quite tearful in rehab for a week or so. I guess suddenly not being able to walk and such can do that to you!! It's odd that they say to keep him from exercise because I am encouraged to exercise. I did physical therapy for 5 months. It seems that in different countries they have different ideas of treatment. Keep me updated on how he is. I will be praying for his complete recovery! God bless!!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/22/2009 12:30 AM (GMT -6)   
Hi Gretchen,

Thank you kindly for assuring me that holding Jonathon upside down would not likely be the cause of the onset of this dreaded condition.

TKeys,

Hoping you are well and 100% recovered. How did the exam at Kansas City go with the expert MS neurologist?

Jonathon is still on oral steroids. He had tapered down to 1ml daily until last friday night when he got optic neuritis in his left eye this time so we had to increase his steroids to 3ml daily. ( we think that he got this attack because he returned back to school for the first time in 3 months and started crying from being away from mum and dad, he has not been back at school since ) On the following Monday morning the Opthamologist recommended we keep him on the 3ml daily so we did. He had his 3rd MRI on Tuesday and the radiologists anaylsis came back fairly good saying the the white matter on the brain had decreased marginally. We saw the opthamologist again 3 days later and he said the optic neuritis was not improving so he put Jonathon on to 5mls daily.

I confirmed with the Opthamologist if Jonathon`s bloods had been checked for epstein bar virus at the time of the onset of this condition and he said yes and it was negative. Our doctors have tested for so many things its unbelievable. Even one called cat scratch.
We are in line to see a neuro opthamologist as soon as possible but it could take weeks.

Here are some of the big words on the MRI report...
There has been marked improvement in this patients bilateral frontal lobe white matter T2 signal hyperintensity with only a small amount of residual signal abnormality demonstrated.
No abnormal intarparenchymal enhancement is identified. Remainder of the brain parenchyma has a normal appearance with normal grey/white matter differentiation.
No areas of restricted diffusion or susceptibility artefact was identified.

No intra or extra axial mass lesions haemorrhage or collections.
Both optical nerves have a normal appearance.
Conclusion
T2 signal abnormality within both frontal lobes continues to improved with previous examination. No new abnormality identified.
This MRI report is marked as " Provisional " for some reason. My only conclusion is this explanation below and we can presume that this MRI report is not 100% correct.
When we got the phone call from the neurologist he said that the MRI came back all clear and that there were no inflammation anywhere around the eyes and no visual problems. about an hour later we received another phone call from the neurologist stating that the radiologist said there was visible swelling of the left optic nerve and that there was some white matter present however it had reduced marginally.

Oh boy, talk about being put through the wringer mate. Far out. Should we be seeking a second opinion or analysis? He cant keep getting this optic neuritis every time he tapers down the steroids and gets a small outburst of crying. I dont know how much more of this we can take. He gets so worried now that he is close to having panic attacks all of the time but we are able to stop one starting now that we can see the signs of one coming. Last night Mum went to the shops and Jonathon was fine for 3 minutes and as soon as he lost attention to what he was doing he just started crying so I took him outside and the crying stopped so we stayed outside until Mum got back. Later that evening he complained that his left arm was sore and then he said his right arm was sore and he went on to tell us that he thought he was going to have another seizure again and we had to keep reassuring him that he was`nt and that the doctors said he wasnt going to have one again.
This whole ordeal is affecting him so emotionally. It certainly has made us treasure our time together a whole lot more thats for sure.
We have another opthamologist appointment this Wednesday and hopefully his left eye is much better or at least improving by then. I could`nt believe how much it hurt him last Friday night when his left eye got bad. We did the side to side movement test on him and his head flinched as if someone stuck ten needles in his eye. We were going to take him to hospital but the opthamologist and neurologist both said to increase the steroids to 3 mls instead when we rang them on that Friday night.
Other than this recurring optic neuritis Jonathon is ever so healthy Praise the Lord.
I have done a lot of research about recurring Optic Neuritis and ADEM using the internet and I have been able to collate with the Physicians more coherently than I ever would have imagined.

Thank you so much for your Prayers. Even Prayers from all parts of the world make a huge difference.

Bradley
Blessed are the pure in heart, for they shall see God.
Matthew 5:8

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/22/2009 11:15 AM (GMT -6)   
Hi Bradley! Keep pushing for them to allow a very long taper of oral steroids. I had a relapse because my first taper was too short. In ADEM, the taper must be lengthy to make sure no chance of relapse. Plus I understand how your son feels emotionally. I was sooo scared at first that everything I felt was the disease coming back. The more steroids I could get, the more safe I felt that it would fend off a relapse. It was my safety net. I spoke to a woman who did a 9 month taper! I only did a couple months. It is very frightening, especially for a child. I am so glad he is otherwise healthy. Thank God! My neurologist appointment is Monday, the 24th. I could use prayers too! I'm nervous :/ I hope it's all good news! I am doing very well physically. There is always the lingering fear some one will think it is MS. I just keep hoping the worst is over, since it hit so drastically. I was a healthy 22 year old one day and in 2 weeks in a wheelchair. Crazy how fast ADEM hits. I just hope this specialist agrees with the other neuros and says yes, it's ADEM, you are doing great, nothing to worry about in the future. I don't know if I can deal with something hitting me that drastically over and over... I just pray for the best! I'll let you know what she thinks! Hope he is doing well and I say keep him tapering until you and he is comfortable to decrease. It will help him emotionally hopefully. God bless!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/25/2009 7:47 AM (GMT -6)   
Hello! I have an update from my neurologist appt. yesterday. She is the regional expert in MS at a large teaching hospital (very large I found since we got lost lol). She came into the room after viewing my MRI's and said "You are very interesting. That does not look like MS, but that does  not look like ADEM either." So that was a shock. She looked through my spinal tap results and took very detailed history of how my illness started.  She said on my MRI my brainstem was "hosed". (Nice to know!) She said it was a devestating MRI. She said if it was a true ADEM attack I would have lesions in various areas all over my brain. She said my brain stem was the only area attacked, thus she diagnosed brainstem encephalitis.  She said I have recovered amazing considering what she saw on my MRI. She went on to say that from such a devestating attack I should continue to recover for up to 2 years, and if I recover fully with no residual symptoms I could be considered the luckiest person on the planet. She made me feel pretty good :) She said it is still an autoimmune attack brought on either by EBV or I may have had a small outbreak of shingles a couple weeks prior to the encephalitis. However, she said my risks of going on to develop MS are decreased with what she saw. This is not totally different than ADEM, just a more localized attack.  All in all, very good news! She is an expert so I'll trust her! God is good!!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/25/2009 4:33 PM (GMT -6)   
Hi Keys,

Thanks for the update. I really don`t know what to say. I am so glad she was able to shed some more light on what is going on. You made me very happy with your previous post about Jonathon needing to be on medication for much longer. Thank you ever so much for your reassurance, we need it I can tell you. As soon as I read the post I showed my wife and she was over the moon also. Just one thing though, our opthamologist is quite worried about Jonathon being on Steroids for such a long time. He is worried that his own steroid producing mechanism might stop working. What are your thoughts about that? I have been praying for your speedy recovery.
One would imagine that a MRI would be analysed more definitively by the first professional whom looks at it.
Our son is ever so emotional now. Reliant on Mum 99.9999999% of the time. Still hasnt returned to school as a result. Any time away from Mum or I and he just starts crying. Still on 5ml daily and we will be asking the opthamologist today if we can hold back on the taper for a while.
Still havent got an appointment with the neuro opthamologist yet but hopefully we will be able to speed that up today when we see the opthamologist again. It is strange that he has a persistent dry cough for the past ten days.
Thoughts and Prayers,
Bradley

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/25/2009 6:59 PM (GMT -6)   
Hi Bradley. I just recently saw an opthamologist about my past optic neuritis and how my eyes were now. He did mention that he is always concerned that with prolonged use of steroids that it can increase a person's eye pressure. Mine luckily had stayed fine. I was on 8 days of 1,000 mg IV steroids then started my taper at 60 mg, then down to fifty, and so on, all the way to 5, then 2.5, then 2.5 every other day. All in all my taper was about 1 1/2-2 months. I have spoke with some one that tapered as long as 9 months and another that tapered for 6 months. How long has he tapered for thus far? Plus, my doctor said coming off steroids can be very difficult for some and cause very emotional almost psychotic feelings at time (not to scare you) but what your son is feeling is normal with these prolonged steroid uses. I'm not sure about how it could effect his eyes, but I do know people that have tapered for a long time and seemed to have little trouble. I believe my first neurologist did a great job with the ADEM diagnosis, but the expert I saw I'm sure has seen the rarest and most localized diseased processes. She said it was just like ADEM, caused from the same virus, treated the same, it was just a more specific diagnosis. She said it was not a true ADEM attack since it was so localized. Since she has seen so much, I guess I will take her expert opinion. My mom is a nurse and later said if you take MRI's to 10 different neurologists, a lot would probably have different ideas as to which exact disease they would call it since they are all so similar. I pray that your son continues to improve physically and emotionally. I know first-hand that sometimes the emotional healing can take even longer. God bless!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/25/2009 7:40 PM (GMT -6)   
Thanks for the prompt reply Keys. It must be late in the evening for you? Oh no, i just checked the timeanddate.com, its around 2030 in the US. Its 1130 here now.
I am at work now www.beerwahsecondhand.com You can see a pic of us on our recent trip to your lovely country by clicking the products link.. We are hoping to come visit the west coast this time next year.
Glad to hear your eyes didnt have long going neuritis. Phew. Seems like Optic neuritis is common to be prolonged with Steroids. I am very pleased that I am able to get extra information about these things. It sure helps me rest more easy I can tell you.
Jonathon has been on the Steroids for 3 months now. On and off that is.
Its disturbing to see him carrying a teddy around at nearly 8 years old and he has this thing with using his thumb and index finger to pinch his top lip gently for some reason. Probably a comforting thing I suppose.
The opthamologist previously mentioned doing tests like bone marrow for Leukemia. Our hospital consultant says there is no evidence that this will be needed thank God.
His appointment is in a couple of hours and I will be shutting shop to go with him as I do with all of his other appointments. I will continue to be strong for him through this whole ordeal because he needs me more than anything and I have God by my side to give me the strength I need.
Take care.
Brad

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 8/26/2009 9:29 AM (GMT -6)   
Brad,
 
I know you are concerned.  You have every right to be.  I am following this thread and praying for your family.  Jonathon is needing to comfort himself to get through this.  I know you are doing everything you can as well to comfort him.  Hold him lots and baby him.  He needs that.  If he gets that, then he will be able to move on.  The steroids as well can really mess with moods and stability.  When he is finally off of those, you will probably see a lot more of the old, more mature Jonathon back again.  Until then, spend as much time with him as possible.  Go for walks, play games, read to him, build a model or?, try something new like model rockets, flying a RC plane,......all of those fun things that we need to do to nurture children.  You all have been through hell and back!  Just nurture each other as absolutely much as possible! 
 
God bless you all.  I have Jonathon in my thoughts and prayers.  He sounds like a wonderrful boy.  I have two sons and I teach 10 and 11 year olds.  Children are so special. 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/26/2009 5:51 PM (GMT -6)   
Thanks Gretchen so much for your support and kind words. I will surely apply the methods you wrote. You are so kind.

Keys, our Opthamologist was very pleased with Jonathons vision. Both eyes are about 99% recovered. We have an appointment with the Optic Neurologist set down for Tuesday week. Due to Jonathon being so young we will not be able to keep him on Steroids for too long so in two days time we will be reducing it down from 25mg to 20mg daily and keep him on that until we have seen the Optic Neurologist. I did mention your diagnosis and he I think he said that it is Devics? Correct me if Im wrong but there were so many big long words thrown at us at that time.

Keep strong and know that God is with you always.

Brad

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 8/26/2009 7:54 PM (GMT -6)   
Hello. It's not Devic's, but brainstem encephalitis. I believe devic's has more to do with spinal cord lesions. My lesion was just the area of my brain stem, but it was pretty massive and did a lot of damage to the region. Hopefully he will tolerate the taper well. I think he just needs emotional support. It is very very scary. My mom is a nurse and just mentioned to me that I maybe should try some sort of counseling to discuss the illness and recovery and any fears that are lingering. She said that I was doing so well physically that she didn't think about the emotional healing that may need to take place after such a life changing event. It takes time and it is for sure a scary process. He will need a lot of support and maybe if he would like to talk with some type of counselor who could help him to conquer some of the fears and emotional problems that this disease leaves you with. I'll be praying....God bless!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


BJMonty
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 9/8/2009 2:11 AM (GMT -6)   
Hi Everyone,

I hope you are all well and not having too many complications at the moment. I really feel for you all.
I hope you are doing alright Gretchen. Having the same last name is one of them amazing things non Christians call " coincidences " however one must know that these are simply examples that God is always with us and shows us this by displaying little hints here and there for us to catch him out so to speak. Great last name mate ! My Sincere Prayers go out to you Gretchen.

A quick update to let you know that Jonathon is recovering very well.
We had the long awaited appointment with the Optic Neurologist today and he confirmed that the reoccuring eye problems were simply a result of the inflammed optic nerve needing a good strong dose of Steroids to completely repair this and has now put Jonathon on 40mg per day tapering over 3 months. He is very assuring that Jonathon just hasnt had the good strong dose that is needed as he kept having the Steroids here and there on and off and these sort of things just need to be nipped in the butt completely so that it doesnt return which is what kept happenning. He assured us that it is OK for Jonathon can run around and do all sorts of things like a normal 7 year old but not to over do it too much like running long distances in sports carnivals etc as he might faint because of the steroids doing other things.
He has an appointment with an endo neurologist or someone like that to monitor the effects the long course of Steroids will be having on his growth and bone development. He said this is usually only needed for more mature aged people on longer courses of Steroids but it is better to do a bone density first to make sure.
If the condition returns after this 3 months we will look at putting him on Methrotrexate which my wife is actually on for her severe case of Rheumatoid Arthritis.

We are very excited and extremely relieved to have this information today I can tell you thats for sure mate.

Blessed are the pure in heart, for they shall see God.
Matthew 5:8

Brad

sal-bella
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/17/2013 12:37 AM (GMT -6)   
Hi I just joined and wanted to learn more about ADEM as i just got told my 9 yro old daughter has it after we went into hospital with bad head aches, vomiting , and unbalanced on feet couldn't walk without falling to left side and has the shakes. so anything that would help me understand and be able to help my daughter understand would be great. we were in hospital for 6 days on iv steroids and now at home for another 4 weeks oral 30mg for two weeks 15mg for 1 week the 5mg for another week then we have a check up two weeks later. Before we got answers my daughter went through 15 days of it with one hospital saying she had gastro another saying she had migraines 10 days mind you and it was a local doctor that said she would do bloods for me as i knew something wasn't right then that showed she had some sort of infection that she sent me to another hospital that did lp and then mri and found out she had adem on day 17 the worst weeks ive ever been through i thought she was dying on me as she was so weak and just sleep now just want to get as much information as i can i have found sites and lecture videos but im sure there is heaps to know. she is getting stronger day by day but i am worried about it coming back after steroids have finished.
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