Acute Disseminated Encephalomyelitis (ADEM) Support Group

Please help me- I need hope and encouragment


#21

Dear Blerta,

Your husband, you, and your family are in our thoughts and prayers.

Right now it might be too difficult to think of what to ask for help,
but ask me, ask everyone here, ask your family and friends. Now is
the time. The fact that you reached out already, kudos to you for
that.

Just keep at it with Andi. It will take time. Now is a scary time. Don't
shoulder it all yourself.

I can only speak as a survivor watching my wife take care of me through this.
It was 2 years ago Thanksgiving.

Now is the time for community and positive people.

Just ask for anything from this group that you think would help; doesn't
matter what it is or if you think you shouldn't ask. Just ask.

Sincerely... Occipital


#22

Thank you Occipital. Struggling at the hospital today. Received good news yesterday that his white blood count is almost normal, down to 6 from 1200 a week prior. MRI showed the original lesions have gotten larger and there is 1 new lesion, however the contrast did not take as well. Dr thinks these two signs indicate a decrease in inflammation. All great news and we celebrated. I’m still very hopeful that Andi will recover but feeling like I’m losing my mind being in the hospital all day. Also I think I may have some post traumatic stress or anxiety going on. I can’t really relax nor sleep well. I feel like running the hospital halls and crashing into sleep all at once. This illness sucks!


#23

Excellent news! Thanks for sharing that.

Anybody told you lately: "You Rock!!!"

Keep at it. Stay hydrated; that is a biggie.

Just keep at it.

Blerta said:

Thank you Occipital. Struggling at the hospital today. Received good news yesterday that his white blood count is almost normal, down to 6 from 1200 a week prior. MRI showed the original lesions have gotten larger and there is 1 new lesion, however the contrast did not take as well. Dr thinks these two signs indicate a decrease in inflammation. All great news and we celebrated. I'm still very hopeful that Andi will recover but feeling like I'm losing my mind being in the hospital all day. Also I think I may have some post traumatic stress or anxiety going on. I can't really relax nor sleep well. I feel like running the hospital halls and crashing into sleep all at once. This illness sucks!

#24

So sorry this is happening Blerta. The hospital is doing all the right things for now. Educate yourself on ADEM. It sounds like it was brought on by the illness. There may be some residual conditions as he improves. Encourage him to work at improving once he past this part. It will take some time.


#25

You are in shock right now. I know it’s really hard to take time to do anything for yourself but you might want to think about finding a therapist now. I finally had to go see someone this week and just being able to talk about it and say all the things that are pissing you off helps. I found myself so angry at my husband for leaving me and that just feels so wrong, my sweet man is laying there and I know he is trying so hard to wake up. I’m not really mad at him but you need to process things. I also feel so angry when I hear about how I will need to accept ‘the new normal’. You are right this sucks, this is not fair. When this started, I thought by the first of the year he will be fine. This is going to be a long hard fight, It sounds like your husbands docs are doing everything. Be good to yourself so you can help him. Everyone has told me since the beginning to do that and there never seems to be enough time, but I think it’s important. Do you have a family support system around? br/>


Blerta said:

Thank you Occipital. Struggling at the hospital today. Received good news yesterday that his white blood count is almost normal, down to 6 from 1200 a week prior. MRI showed the original lesions have gotten larger and there is 1 new lesion, however the contrast did not take as well. Dr thinks these two signs indicate a decrease in inflammation. All great news and we celebrated. I’m still very hopeful that Andi will recover but feeling like I’m losing my mind being in the hospital all day. Also I think I may have some post traumatic stress or anxiety going on. I can’t really relax nor sleep well. I feel like running the hospital halls and crashing into sleep all at once. This illness sucks!

#26

Kris and Blerta: Therapist, that is an excellent idea. Therapists are really "professional friends" in the truest sense of the word.


#27



Blerta said:

Sarah, you mention your blog in your response and I would love to read it. Where is it hosted?
If you go to the members page. You will find it under the name Sarah. My son is slowly starting to read now. One word and short phrases and remembers my four digit password to my phone. Seems small but we try to focus on the positive little things. It gives us hope. Celebrate every slight improvement keep his brain active my showing him family pictures, listening to music he loves etc. This is such a difficult time for you and your family but you will overcome this. I pray for you guys every night. Much love to you and your family

#28

Please don’t worry. U have to be positive. I have passed through same stage when my 5 month old son got ADEM in India. He was diagnosed in 2 days although the doctor’s team started the treatment even before he was diagnosed. Brain MRI, Spine MRI, lumber puncture, all types of blood tests, urine tests, X rays, ECG were done. His white matter was infected. His both the eyes were squinted to the left side. He was hardly breathing. And was put on ventilator within 2 hrs of admission to Intensive care unit. He dint open the eyes for 4 days . The doctors said that the response is unpredictable. But I had the faith in God. And after 4 days he opened his eyes and smiled. I could not control my tears. Still that moment is floating in front of my eyes. Now my child will be 4 yrs in March. It took long time to recover from that although , still there is some imbalance while he walks or runs.

I told u my story just to mage u calm and have faith in God. It’s easier said than done but really, it’s positive thinking that will make the difference.

I hope your hubby is going through right line of treatment. My son was given high doses of steroids.

Please keep us posted. We are with you in this tough and very tough time. And it’s just a phase of life which will go away slowly.

I wish and I will pray that ur hubby recovers from this ADEM.hope ur happiness aND cheerful smiles come back very soon. Be bold , since u have 2.5 yrs young kid.

Wish u all the very best .

Thanks
Shailesh


#29

Thank you all! I believe in God, we all do, and that he will help us through. We have seen some great improvements in my husband. He can now shake his head no and nod yes, he can squeeze both hands and lift his head up from the pillow. Also, his sense of humor is still there, and he gave me the finger today in front of drs and nurses. The dr asked him to smile, which he can't do, and I said he can ugly cry though, just to say he can move his face. My husband heard that, raised his hand and gave me the middle finger. It is the best thing I have seen!! We have a long road ahead, but hopeful that these are all very positive signs. Thank you all for your support and prayers. Please keep them coming, and I have been sure to include all of you in my prayers every night!


#30

Wonderful news, Blerta. Keep us in the loop: the good people here are sending their best karma your way.


#31

As I really cant offer much help...I would like to send you prayers and to tell you this whole A.D.E.M. world that we entered is truly crazy. so happy we have this website. there is lots of us here to offer you support. I am also knew to A.D.E.M. as my 10 year old son was just diagnosed and treated back in November. We are doing better but have a long road to go....how long???? I don't know. but we are ALOT BETTER THEN where we were. stay strong and let us know how you are doing.


#32

Keep at it Prayers, support and bein possitive is key


#33

I'm so sorry for what you've been going through. ADEM is a very scary thing, but you can hope to see improvement. Every person is different in the speed of recovery and the challenges that follow.

Please keep us apprised of what's happening. I'm 3 1/4 years out and still struggle with extreme fatigue, cognitive and memory gaps, problems with my hands (grasping and detail work), and other things, but I'm still hopeful for continued improvement. I pray for a whole and rapid recovery for your husband.

LauraK


#34

Prayers and being possitive is the highest level of strength Keep praying. My prayers are on. I had 6 treatments of plasma exchange before positive change


#35

Blerta, we haven’t heard from you since January. We hope things are well with you and the family. Drop a line when you get a chance!
Seenie


#36

Hi all! So sorry for my delay in response- things have been hectic but really good. My husband is now home and doing very well. He complains of feeling stiff and is much more emotional and impulsive than before, but these are very very minimal complaints in the large scheme of things. He came home at the end of January, had physical therapy for 4-5 weeks and is planning to return to work mid-May. we are thankful and so grateful things are better for us. Thank you all for your support while we dealt with the scariest times of our life. Much love to all of you!


#37

Blerta, This is wonderful news!!! Keep putting one foot in the front of the other! Lynn


#38

Blerta, how good it is to hear from you! It was a dark and scary time indeed back in January, wasn't it? I'm sure you went through some pretty hopeless moments, and we're glad that we could help you with this.

Don't disappear for so long again! You never know who will benefit from a kind word, spoken by the voice of experience. This is a peer-to-peer network, where we give as well as get support!

Seenie


#39

Great great great. Thanks for the update.


#40

Blerta I got a lot of value of the TBI group, too:

http://traumaticbraininjurysupport.org

It might be valuable to you, too, because the TBI comes with the ADEM.

Stuff like impulsive behavior and flooding are all TBI topics bigtime.