It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Down Syndrome Message Board

Child with Down Syndrome experiencing difficulties


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 07-13-2014, 06:59 PM   #1
barkonst
Newbie
(male)
 
Join Date: Jul 2014
Location: Long Beach, CA
Posts: 2
barkonst HB User
Child with Down Syndrome experiencing difficulties

I am the adopted father of a 28 year old adult daughter with Down Syndrome. Her name is Corinne.

About three years ago, my wife and I had to move away from our home in Orange County. At that time, had you asked me about Corinne, I would have told you she was about the happiest little thing I had ever met, without a care in the world.

Almost as soon as we arrived in our new location she started to manifest behavioral abnormalities. At first it was surliness. She wouldn't acknowledge us when we spoke to her. Then she started to lose some cognitive abilities. She would shower and forget how to soap herself. She would dump an entire bottle of shampoo on her head and let the suds burn her eyes. She would go to the bathroom and wrap almost an entire roll of toilet paper on her hand before wiping. Any time we corrected her, she would either go crazy or start to babble about something completely incoherent. At times its as if she doesn't understand a thing we are saying...unless we ask if she wants to eat, then like a laser beam she is honed in and answers.

It is completely frustrating for both us and for her, because at times I think she doesn't know or understand what is happening to her.

Too, our family is split...I continue to believe that there is something chemical afoot, and that perhaps some anti-psychotic drugs are in order, like risperdal. My wife and stepson believe that this is her experiencing a reaction to her coming away from her very tight routine, that she is either in some sort of deep funk/depression or has regressed and internalized because of the move away from her routine.

We have moved back to the place where we were previously, and are in the process of plugging her back in to what she previously understood. And we have also contacted some of the best medical people in our area to get a clinical and professional diagnosis. So, help is on the way, but it is a couple of months before everything is solidified.

In the meantime, I am wondering if anyone out there has any input on this...or if you've experienced a similar situation, and what the resolve was for you, if any.

Thanks so much,

David

 
Reply With Quote
Sponsors Lightbulb
   
Old 07-16-2014, 03:03 PM   #2
Clyde1
Junior Member
(female)
 
Join Date: Jul 2014
Posts: 19
Clyde1 HB UserClyde1 HB User
Re: Child with Down Syndrome experiencing difficulties

barkonst: I don't know how close you are to San Diego. What I do know is that the top doc in all matters Down syndrome in the world is located in San Diego. His name is Dr. William Mobley at UCSD. He is an investigator/research dr. and he studies Alzheimer's and Down syndrome concurrently. Along with being born with 30% more gaba in their brains than the rest of us, persons with DS are born also with too much of an amyloid percursor protein in their brain. App is the same protein that accumulates in the brains of certain individuals with advancing age and causes/contributes to the development of AD. Not all individuals with DS get AD, but some do. It now is appearing that not only persons with DS, but many in the general population are diagnosed at having AD, when they actually have a type of auto-immune disorder that presents with symptoms similar to AD. This auto-immune disorder is reversible if caught and diagnosed quickly enough. I do believe that Dr. Mobley has a clinical practice and sees patients. I would imagine that it is slow getting an appt. with him, but it would certainly be worth the wait. He is good! Hoping that your daughter will improve with the return to your old community. My daughter is 47, and I can say from experience that medication and DS do not easily mix, and can sometimes cause far more trouble than it is worth. All best wishers to your daughter and your family.

 
Reply With Quote
The Following User Says Thank You to Clyde1 For This Useful Post:
barkonst (07-16-2014)
Old 07-16-2014, 03:15 PM   #3
barkonst
Newbie
(male)
 
Join Date: Jul 2014
Location: Long Beach, CA
Posts: 2
barkonst HB User
Re: Child with Down Syndrome experiencing difficulties

Thank you Clyde! I just made an appointment.

We are having her evaluated at UC Irvine tomorrow, at another well recommended center. And then there is another place we found through the Harbor Regional Center. But Dr. Mobley is coming back from Denmark on Friday, and his secretary said she would make an appointment for us after consulting with him.

Thank you so much! And for your comments.

 
Reply With Quote
Old 07-17-2014, 07:09 AM   #4
Clyde1
Junior Member
(female)
 
Join Date: Jul 2014
Posts: 19
Clyde1 HB UserClyde1 HB User
Re: Child with Down Syndrome experiencing difficulties

So happy that you were able to make contact with Mobley's office. Near the other side of the continent, my daughter is too fragile to travel to Cal., or I would try to have her in Mobley's care in a heartbeat. She was taking a med that she should never have been taking on a daily basis, and only because I was fortunate enough to hear him speak at a conference in Nashville, my daughter is alive today. Please keep us posted on Corinne's progress. All good wishes.

 
Reply With Quote
Old 08-27-2014, 10:15 AM   #5
BriMom
Junior Member
(female)
 
BriMom's Avatar
 
Join Date: Jul 2014
Location: NJ
Posts: 12
BriMom HB User
Re: Child with Down Syndrome experiencing difficulties

Hello Corinnes' Dad,
I also have a problem with my daughter who has Down syndrome. She has very similar symptoms like you are writing about. I too have an open thread "HASHIMOTO'S ENCEPHALITIS" Clyde, a mom with a daughter with Down syndrome is very knowledgeable and has been a godsend to us. I am taking my daughter now (after a year) to the University of Pennsylvania Hospital, Philadelphia, to their Autoimmune Neurology Department now and embarking on getting testing including a lumbar puncture done, so it can be examined for the Anti NMDA receptors.

Thanks,
Maryann C.

Last edited by Administrator; 08-27-2014 at 04:10 PM.

 
Reply With Quote
Old 05-03-2015, 02:37 PM   #6
trailrunner51
Newbie
(female)
 
Join Date: May 2015
Location: South Carolina
Posts: 2
trailrunner51 HB User
Re: Child with Down Syndrome experiencing difficulties

Anyone else out there have a young adult with DS also having been diagnosed with HE? We are almost two weeks into treatment. Treatment initially was 1,000mg IV steroids for 5 days and now sent home on 60mg daily oral. She started symptoms in October of 2014 with fatigue, lack of speech, extreme insomnia, frothy saliva. Then in December of 2014 she had a severe headache, hearing voices, hallucinations and paranoia. She was admitted to the hospital and received a diagnoses of PTSD and sleep deprivation. Her conditioned worsened with cognitive decline even after the sleep deprivation and other symptoms seemed to resolve. After seeing many many doctors for every symptom, we made an appointment with Duke University Neurology clinic in Durham NC. They read over her extensive prior lab work (Grave's disease, high Thyroid Peroxidase antibodies, High C-reactive protein levels), considered her level of functioning prior to her decline(was a senior in a college program, living on campus and independent) and considered her symptoms. We printed out ******** pictures of her participating in various activities at college because many doctors really do not see those with DS as being very functional to begin with). They made the diagnosis of HE. I would like to know what other young adults with DS and HE course of recovery has been. So far, its been a very slow go for us. Please, please, any of you with those with DS and having been diagnosed and treated for HE, please respond.

 
Reply With Quote
Old 05-03-2015, 04:27 PM   #7
BriMom
Junior Member
(female)
 
BriMom's Avatar
 
Join Date: Jul 2014
Location: NJ
Posts: 12
BriMom HB User
Re: Child with Down Syndrome experiencing difficulties

Quote:
Originally Posted by trailrunner51 View Post
Anyone else out there have a young adult with DS also having been diagnosed with HE? We are almost two weeks into treatment. Treatment initially was 1,000mg IV steroids for 5 days and now sent home on 60mg daily oral. She started symptoms in October of 2014 with fatigue, lack of speech, extreme insomnia, frothy saliva. Then in December of 2014 she had a severe headache, hearing voices, hallucinations and paranoia. She was admitted to the hospital and received a diagnoses of PTSD and sleep deprivation. Her conditioned worsened with cognitive decline even after the sleep deprivation and other symptoms seemed to resolve. After seeing many many doctors for every symptom, we made an appointment with Duke University Neurology clinic in Durham NC. They read over her extensive prior lab work (Grave's disease, high Thyroid Peroxidase antibodies, High C-reactive protein levels), considered her level of functioning prior to her decline(was a senior in a college program, living on campus and independent) and considered her symptoms. We printed out ******** pictures of her participating in various activities at college because many doctors really do not see those with DS as being very functional to begin with). They made the diagnosis of HE. I would like to know what other young adults with DS and HE course of recovery has been. So far, its been a very slow go for us. Please, please, any of you with those with DS and having been diagnosed and treated for HE, please respond.
I would like to add something. We were taking our daughter to the Hospital at the University of Penn. we were told to take her over to the Children's Hospial of Philadelphia and talk to a neurogeneticist. She has been given steroids treatments but she is also receiving a monthly dose of intravenous immunoglobulin and an extremely small dose of Prozac. She is improving dramatically since we started the IVIG. You may want to inquire at Duke about autoimmune disease and idiopathic brain encephalitis.

 
Reply With Quote
Old 05-12-2015, 07:28 AM   #8
Clyde1
Junior Member
(female)
 
Join Date: Jul 2014
Posts: 19
Clyde1 HB UserClyde1 HB User
Re: Child with Down Syndrome experiencing difficulties

Hi BriMom,
It has been a while since I was on HB. I got on yesterday and responded to a pm from trailrunner. The information trailrunner requests cannot be posted due to board's requirements for length of posts. Hopefully, she/he will get in touch, again.
BriMom, our sweet girl passed away in January. She was just too frail by the time we got a diagnosis (in June 2013). I am so glad that you were able to get your daughter diagnosed and treated. From your posts, I understand that she is receiving steroids and IVIG. That appears to be the standard treatment, and what I have read, it works well when the diagnosis comes soon enough, as it sounds to have for your daughter. Over time, after we finally got a diagnosis, we were able to get a more accurate time frame for the beginning of her symptoms. Heather's symptoms became obvious and severe in very early O8; however, after more research and reading, we came to realize that she more than likely was having insidious symptoms as early as 02. In early 02, at her yearly cardiology evaluation, it was discovered that her heart-rate had plateaued at a lower lever during the previous two years' evaluations. There was never a reason for it able to be identified by her very capable cardiologists, and in 06 she received a pacemaker; in 05, she began to have severe depth-perception problems, for which she later had surgery. Both of these conditions can be early symptoms of HE, (or "autoimmune encephalopathy," as the medical profession prefers it now to be called.) We attributed her pacemaker requirement to her age and because she had had two open-heart sugeries; her vision issues began at age 38, an age that vision issues commonly show up in the general population. Now, it appears that these may quite possibly have been very early symptoms of HE. We miss her; she was the greatest blessing in our lives.
BriMom, I learned alot these past seven years, and I hope that it has helped some who read "the board' get a diagnosis. Know that I will gladly share all that I have learned with any parent who is searching for answers. Good health and blessings to your precious daughter and you.

 
Reply With Quote
The following user gives a hug of support to Clyde1:
kanded (08-02-2015)
Old 05-12-2015, 08:26 AM   #9
BriMom
Junior Member
(female)
 
BriMom's Avatar
 
Join Date: Jul 2014
Location: NJ
Posts: 12
BriMom HB User
Re: Child with Down Syndrome experiencing difficulties

Quote:
Originally Posted by Clyde1 View Post
Hi BriMom,
It has been a while since I was on HB. I got on yesterday and responded to a pm from trailrunner. The information trailrunner requests cannot be posted due to board's requirements for length of posts. Hopefully, she/he will get in touch, again.
BriMom, our sweet girl passed away in January. She was just too frail by the time we got a diagnosis (in June 2013). I am so glad that you were able to get your daughter diagnosed and treated. From your posts, I understand that she is receiving steroids and IVIG. That appears to be the standard treatment, and what I have read, it works well when the diagnosis comes soon enough, as it sounds to have for your daughter. Over time, after we finally got a diagnosis, we were able to get a more accurate time frame for the beginning of her symptoms. Heather's symptoms became obvious and severe in very early O8; however, after more research and reading, we came to realize that she more than likely was having insidious symptoms as early as 02. In early 02, at her yearly cardiology evaluation, it was discovered that her heart-rate had plateaued at a lower lever during the previous two years' evaluations. There was never a reason for it able to be identified by her very capable cardiologists, and in 06 she received a pacemaker; in 05, she began to have severe depth-perception problems, for which she later had surgery. Both of these conditions can be early symptoms of HE, (or "autoimmune encephalopathy," as the medical profession prefers it now to be called.) We attributed her pacemaker requirement to her age and because she had had two open-heart sugeries; her vision issues began at age 38, an age that vision issues commonly show up in the general population. Now, it appears that these may quite possibly have been very early symptoms of HE. We miss her; she was the greatest blessing in our lives.
BriMom, I learned alot these past seven years, and I hope that it has helped some who read "the board' get a diagnosis. Know that I will gladly share all that I have learned with any parent who is searching for answers. Good health and blessings to your precious daughter and you.
Dear Clyde; Thank you for all that you have shared with me.
I am deeply saddened by the loss of your daughter Heather. Please accept my heartfelt condolences, she will not be forgotten. Only faith in God will fill the void.
Sincerely, Maryann C.

 
Reply With Quote
Old 08-02-2015, 10:14 AM   #10
kanded
Senior Member
(female)
 
Join Date: Feb 2012
Location: Washington
Posts: 233
kanded HB Userkanded HB Userkanded HB Userkanded HB Userkanded HB Userkanded HB Userkanded HB User
Re: Child with Down Syndrome experiencing difficulties

Clyde1,
I just read the post on your daughter. Please receive also the condolences of my family, even though we never knew your sweet daughter. While my DS child is not an adult, still a child, we are just starting to understand some of these illnesses that
affect our children. And your posts have helped me and been informative for us as well as many others that have read your posts. Thank you so much, and our family will also remember your family in our prayers.

 
Reply With Quote
Reply Reply

Tags
autism, behavior issues, down syndrome, risperdal



Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 02:55 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!