Acute Disseminated Encephalomyelitis (ADEM) Support Group

Hyperbaric O2 Chamber and Acupuncture for ADEM / TM


#1

My 1 year old daughter was diagnosed with ADEM and also TM since it did not affect her brain too much. Demyelination of her spinal cord was from the cerebrospinal junction to T10. The onset of paralysis began 05/26/15 with IVIG and high dose steroid beginning on 05/30/15. She could no longer walk, crawl or sit unassisted and was loosing the ability to open her hands to even hold a bottle. After treatment in the hospital she regained the ability to open her hands but that was about it. We were discharged from the hospital on 06/06/15.

On 06/19/15 we began hyperbaric oxygen chamber treatments (HBOT) at 1.5 atmosphere for about an 1 1/2 hours and also acupuncture. She has since had 3 HBOT treatments and 1 acupuncture treatment. After her second HBOT treatment and 1 day after the acupuncture she stood up while assisted on 06/23/15. She did not wince or cry in pain, her feet flat on the floor, legs somewhat bent and not hyper-extended. She had a big smile on her face as she looked up at me while standing. It was amazing! After her 3rd HBOT treatment she is now crawling! All of this taking place approximately 30 days after the onset of paralysis.

We don't know if it is just her body repairing itself fast because she is so young, the HBOT treatment or acupuncture helping her recover so quickly and I don't think we will ever really know but something is working and working well. She still has a long way to go in her recovery and we will need to see if she has any residual side effects from this disease. But we won't know until she is older and can communicate with us.

We don't know why this happened to our daughter and if there was a reason maybe it was to help others in there recovery and that HBOT treatments are a viable option of alternative therapy to try in their recovery from ADEM or TM.

Has anyone else tried HBOT or acupuncture in their recovery from ADEM or TM? If you have what has been your results?


#2

I am very glad your daughter is making a good recovery, MissDP. We have a fair number of parents on the site, and a good number report that their kids' symptoms resolve rapidly without interventions. Just as you mention, we can't be sure what role HBO and acupuncture played here, but it's terrific that your daughter is improving, and I hope that her recovery is complete. Keep us posted.


#3

Does your doctors feel it's the HBOT or her body healing on its own? We've thought about getting HBOT for my son, but our neurologist didn't recommend it. He said there was a study that showed kids didn't improve from it. However, I should mention ADEM has affected my son severely in the brain. Therefore, everyone is different. I'm glad that it's working for your daughter.


#4

Hi, thanks for the information. My son is 4 and he was diagnosed on Aug. 13, 2014. Prayers to you and your family too! I believe time, patience and prayers is the key with ADEM. Take care.


#5

I'm going to ask some of the other specialists that are working with my son b/c his Neurologist didn't recommend it. He was part of study that tested HBOT thru John Hopkins and stated there was no indication that it worked. But I want to do more research on it. Did the Medical Director you're working with state that it will help the brain heal b/c ADEM is similar to a TBI? Thanks


#6

Thanks so much for the info! I appreciate it! Prayers to you and your's too. I know this is quite the journey for us parents, but we will get thru this as long as our lil' ones keep improving.


#7

MissDP, I think as ADEM parents we do lots of researching, esp. when our kiddos have it so severe. Hugs to u.

Phoenix area was going to be the next place we moved to before my son was diagnosed. Now God's plan is for us to stay in chilly WI and be close to family for their love and amazing support. =)


#8

Hi JP,

Yes, being close to family and having their support through all of this is very important.

I've been thinking about your son lately and I just wanted to check in with you to see if you have spoken with any of your son's doctors about any further alternative treatments and what their take on it is.


#9

jP if you are moving to Phoenix i could recomend you Dr.Saunder Bernes and Dr.Adelson, both AMAZING neuro and lots of experience, Dr.Adelson is the main doctor of child neuro at Barrow Institue, im glad God put me in the way of both doctors.


#10

Hi, I did speak to my son's neurologist and he said he was on a John Hopkins committee that did a study about hyperbaric results. The study didn't show any significant results. He said one child died b/c from vomiting on his or her own vomit. However, my husband and I discussed this further again just the other day. We still are definitely thinking about trying it. What are the changes you saw in your child? Negative, positive? I'm sure you know how scared/worried we are to try anything new for our children.

My son still cannot see or speak. So since he cannot speak, we are worried if it would have a negative impact and we didn't know. It seems as if the rarest issues/concerns happen to my son. And I mean rarest issues that even puzzle top doctors.

Any advice from others would greatly be appreciated! Prayers and hugs sent to all families.


#11

Hi MissDP, I tried again to log onto the testimonials from the Arizona HBOT website, but was unable to. I will call them tmrw and see if they can help me troubleshoot. I am interested in the viral encep. testimonial b/c we know a child that has this. Thanks again for being a great resource!


#12

JP,

As far as the results for my daughter who was 12 months old when she got sick and now 14 months old. We started her O2 treatments about 2 weeks after we were released from the hospital. After her steroid and IVIG treatment in the hospital she regained the movement in her hands but she was still unable to move her legs, sit unassisted and the muscles in her legs were almost always flexed (extending her foot/toes out) it's called hypertonia. We had to do stretches a few times a day to keep her muscles from being 'stuck' that way and keep her flexible. She eventually learned how to roll from back to belly and then belly to back. We would try to stand her up on her feet to see if she could bear weight and it was too painful for her. Her feet/legs would be stiff and almost hyper-extend, she would wiggle in pain once her toes touched the ground. She couldn't bear any weight on her legs. We had her first o2 treatment on Friday 06/19/15. On Sunday 06/21/15 I had tried to stand her up while we were out by the pool and she couldn't do it. We had another treatment on Tuesday 06/23/15 in the afternoon. I was in the kitchen making dinner and my husband was feeding her a bottle in the living room he then started telling me in a loud but calm voice to "come here, Maggie is standing up!" He said she had slid her self down his belly and was supporting herself between his legs but she was standing flat footed and bearing weight on her own feet and legs. She looked up at us with the biggest smile like she was so grateful to be standing up on her own and it didn't seem to hurt her so much. This was after only 2 treatments of O2 and 1 acupuncture treatment on Monday 06/22/15. She has since had 11 O2 treatments and 5 acupuncture treatments. She has started taking a few steps here and there. Walking from the sofa to the table (short distances, about 8-10 steps). Absolutely amazing.

I've mentioned the improvements to the pediatric clinical director whom I still keep in touch with and he really does not say much about the alternative therapies we're doing because he does not know much about them himself. All he's said is that there are no known studies proving that it works so he/they can't recommend the treatment. We are meeting with her neurologist for a follow up on 08/25/15 and I am anxious to see what he has to say about the treatments and her improvements.

I do understand the concern about doing new treatments for your child and for their safety. I am by no means a doctor myself I just believe in alternative therapies and their effectiveness and willing to try whatever will help my daughter recover.

I have yet to come across a doctor out here that has actually treated a child with ADEM or TM. They've heard long lost stories about it but don't know much about it or how to treat it. Her neurologist said he's treated children with it but they are few and far between.

I hope the best for you and your family.

~Misty


#13

Wow Misty! Thanks so much for your information! I appreciate the time you took to inform me of this. I definitely think it's worth a try.

Your daughter looks like such a sweetheart!

Best of luck to you and your family too! Prayers for Maggie's continued healing.

Prayers for your strength,

Jenny


#14

Hi! My son JOhn had ADEM in 2012 when he was 12 years old. He had a severe case, sudden and acute onset - unable to talk, projective vomiting, call to 911, etc. He was almost 4 weeks in a coma (only first few days were medically induced. He was in inpatient for 6 weeks, outpatient for 1.5 years and we are still not recovered fully. I finally tried HBOT (mostly for his cognitive deficits, emotional immaturity, processing speed and things like that). He did 40 treatments, then a month later, 20 more.

We were almost 3 years out when we started. I wish I could have started soon after onset but ...God didn't lead me to do this till now - I didn't even know about it til about a year prior to him doing it and then didn't have any money for it.

I'm afraid the results were not what I hoped for. We don't have the money to continue treatments, if I even though more would help. It could have netted him small results, but his emotional immaturity is by far his biggest issue. He has bladder dysfunction, some fine and gross motor awkwardness though he can walk and do everything for himself. The things I most hoped to clear up really didn't clear up that much.

Good luck to you!


#15

Thanks for your info Johnsmom. My son is 4 and is a year post diagnosis. I'm trying to find a HBOT in the area we live but it's not easy b/c it's a rural area. I'm hoping and praying for improvements when we actually try it!

Does your son have behavioral issues? My son has improved a lot since diagnsois. However, with these improvements, bring new concerns: pinching, biting, slapping, pulling hair. Mainly to me, but also to his1 year old twin siblings. So this creates new issues/frustrations. I'm thinking mainly b/c he cannot see or communicate, he's frustrated and overwhelmed. I'm trying to find a behavioral resource that works w/ kids who are nonverbal.

Good luck to you too!! I know ALL of us ADEM parents need love, support and lots of prayers!


#16

Hi Johnsmom,

Thanks for sharing your son's story with us. Yes, HBO treatments can be very expensive since most insurance doesn't cover the treatment, unfortunately. That's great that your son is able to do things for himself and able to walk. Had he lost that ability at the onset or did it affect more of his brain? I'm not familiar with emotional immaturity or behavioral issues since my daughter is only 1.

If you are interested in trying more treatments you may be able to find funding resources to help with treatments.

Good Luck. Thoughts and prayers to your and your son.



Johnsmom said:

Hi! My son JOhn had ADEM in 2012 when he was 12 years old. He had a severe case, sudden and acute onset - unable to talk, projective vomiting, call to 911, etc. He was almost 4 weeks in a coma (only first few days were medically induced. He was in inpatient for 6 weeks, outpatient for 1.5 years and we are still not recovered fully. I finally tried HBOT (mostly for his cognitive deficits, emotional immaturity, processing speed and things like that). He did 40 treatments, then a month later, 20 more.

We were almost 3 years out when we started. I wish I could have started soon after onset but ...God didn't lead me to do this till now - I didn't even know about it til about a year prior to him doing it and then didn't have any money for it.

I'm afraid the results were not what I hoped for. We don't have the money to continue treatments, if I even though more would help. It could have netted him small results, but his emotional immaturity is by far his biggest issue. He has bladder dysfunction, some fine and gross motor awkwardness though he can walk and do everything for himself. The things I most hoped to clear up really didn't clear up that much.

Good luck to you!


#17

Here is a video I watched. My daughter had ADEM July 2014 then relapsed in October suffering greatly physically. We just started HBOT in July and have seen her muscles relax, cognitive acuteness return and just has more positive outlook. She has chorea in her right side, but her right arm is getting stronger and is using it more often. She was also unable to hold her breath under water, but after 5 treatments was able to go under and hold her breath for 5 seconds! Her voice is also getting stronger. She is currently 7 and praying with brain plasticity, oxygen and lots of home therapy she will regain everything back!!


#18

Wow, amazing!! So happy for your daughter, you and your family!

I called several places in WI and none of the places will work on my son. The last place I called, Aurora St. Luke's in Milwaukee, WI (2.5 hrs. away each way) said that due to his seizures most places would not do HB on him. I guess people can have oxygenated seizures. My son hasn't had a seizure since Jan. 27, 2015. He's still on 6 ml Topomax so his seizure med is working. Did your daughter have seizures?

I would really like to try this on my son, but just not sure where to go from here. Any help/advice I can get in how to contact the right HB facility who would work on my 4 yr. old son would be appreciated. Also any advice regarding HB and seizures.

Thanks!! God Bless.


#19

This discussion is being closed and some of its content removed, including a variety of non-authoritative links that are either commercially based or taken from sensationalized news sources. Encouraging other members to try hyperbaric treatment or any other treatment is a misuse of this community -- please review our main page guidelines. Please read the attached information about hyperbaric oxygen, including the risks. Please consult your ADEM MD.

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm364687.htm

We are here to support each other, and not to promote the hyperbaric oxygen industry. ADEM symptoms resolve... there is no way to tell what role hyperbaric has played in the resolution of symptoms without tangible results in clinical trials, which have not been forthcoming.