Severe mental changes post stroke

[kimt75]

Hello, everyone, let me introduce myself. My name is Kim and I am the mom to an 11 year old girl that suffered bacterial meningitis, encephalitis, and a stroke last fall. I know that there are support groups for parents of children who have strokes, but what I have found is that they are more for parents of infants who had strokes.

 

Here are my questions... has anyone on this board, or caregivers experienced severe mental changes post CVA? We are experiencing very childlike behavior, far below my daughter's behavior prior to illness, as well as impulse control, and compulsive behavior. These are the biggest issues as to her mental status. I know that mental changes can happen but I am trying to find survivors or caregivers who have experienced this.

 

I want to find some support as it is really draining at this point. The neuropsychologist is working hard to get us in with a psychiatist so that we can start trying more mental health meds. Also those out there that may have seen childlike behavior post stroke, did you see that it did or did not improve? My thoughts about this at this point is we may be dealing with a young lady who may never progress past the developmental maturity of a 6-8 year old. We already need to watch her very closely. Just this last weekend we lost her at a charity walk.

 

I just need to know if there are others out there who have experienced these things. The neuropsychologist is saying that it could be from the damage to the brain, or it could be that we have a mental disorder on our hands that kind of made itself known sooner due to the brain damage. Any and all input is very welcomed as I need all of it I can get my hands on. I feel like I'm in a sinking ship at times as she looks "normal" no physical effects left any more unless you watch closely when she's doing something. However, there are many mental/emotional issues that are there that everyone can't see unless they spend time with her.

 

I'll stop there, I could write a book. Like I said any input would be welcomed!

[jriva]

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Kim, Welcome.

 

I have a couple of questions that might help us answer some of your questions. By "last fall" do you mean 2005 or 2006? Also, do you know which side of the brain the stroke occurred on?

 

Jean

[kimt75]

This occured October 2005. She had an ischemic stroke on the right side in her occipital, perietal, temporal lobes. One neurologist said there was significant damage to the occipital lobe especially. We were told that this was an unusually large stroke for a child who had meningitis, as they are usually smaller strokes. She also has a seizure history post stroke. Thanks again for any and all input.

[fking]

Kim,

 

Welcome to the site!

 

Wish I had answers from experiences for your questions, but I don't. I understand your situation however and certainly wish you get some information soon.

 

My heart goes out to you and your young daughter for all she has suffered. I hope you are not a single parent.

[lisas]

:welcome: Kim,

 

I'm sorry to hear about your daughter. I know how devastating it can be first handed. My daughter Rachel had a massive stroke on 2/17/06. We almost lost her. She had a blood clot to the brain. 2 clots started in the left ventricle of the heart. Rachel was diagnosed with CHF April-2005.

 

At first Rachel couldn't talk, walk, move, or recognize anything. Little by little things started to come back. Movement-(none for the right arm yet, speech(still has a ways to go), and walking-uses a quad cane and wears an AFO.

 

I'm glad to hear that your daughter has no major physical deficits. :cheer:

 

Yes, Rachel doesn't act her age in some respects. Her voice now sounds younger than it did. Her speech is somewhat childlike in things she says. I'm just so thankful she can now speak enough that we can tend to her needs. Rachel was born with a growth hormone deficiency, so she has always looked younger then she is. She is 4ft. 5inches tall. People tend to treat her like a child. She used to mind, but right now she appears ok with it.

 

Rachel still wants to be an adult in many aspects: She would like to date, go out with friends, go shopping, movies, and tries to be very independent. She is no where near dating yet, but the urges are there. She still flirts with the boys, and I know that she gets upset when her sister is alway out with her boyfriend and so are her friends.

 

Does your daughter have a good group of friends? Does she attend public school? I hope she can continue to grow and learn. You can PM me anytime if you like. I'ts very difficult when your child is sick. It's so good to have other people to talk to. :friends:

[kimt75]

Fortunately, no I am not a single mom. My husband however has been working insane hours to help us pay medical bills. We also have three other children who all have medical needs. Our other three were born with a genetic disorder, effecting the youngest two the most. Fortunately they have been stable for this last year! I don't know what I would do without my husband though, I couldn't imagine trying to work and take care of Alicia. She needs me too much to have to work.

[jriva]

Kim,

 

I'm glad we got a chance to meet and talk in chat tonight. You are definately on the right track in how you are handling your daughter. It takes a long time, so don't lose hope.

 

I'm also glad you found your way into chat and the blog community so soon after joining. Using all three support areas of this site really helps you make friends fast and each area offers a slightly different kind of support that all dovetail together nicely.

 

Jean

[kimt75]

Does your daughter have a good group of friends? Does she attend public school? I hope she can continue to grow and learn.

 

 

Fortunately she does have a few good friends. I do worry that as the year(s) go on that may change, but I'll be thankful for what we have right now. Alicia does now attend public school, we used to homeschool. I learned that, that would no longer be an option as I was reaching burn out real quick trying to do so much for her.

 

It's nice to find another family who is going through this. I hate that another family is dealing with it, but it helps me not feel so alone!

 

Also wanted to note, Alicia had been paralyzed on her left side, and had left sided neglect for quite a while. We were fortunate that her compulsivity made her work overly hard trying to walk again, then later work on the neglect. I really am thankful that the paralysis got better, as did the neglect, that is also tough to deal with.

 

Question what is CHF?

 

Thanks for the reply, I really appreciate not feeling alone!

[dstraugh]

Kim,

 

Welcome to the site. Best wishes to you, Alicia, and the rest of your family. I am almost 2 years post stroke. I don't have any answers to your immediate questions - just wanted to let you know there is plenty of support from this site.

[arogers]

Welcome Kim,

 

My husband is 57 years old and suffered two strokes when he was 55. He'd suffered a stroke at 53 which didn't leave any residual affects, however the last two were pretty severe.

 

After his 3rd stroke he has experienced many cognitive issues. His judgement is impaired, and at first he was very impulsive - for instance, although he could not walk he would get up out of a chair as though he could and try to walk. His ability to reason was also affected, and continues to be. He doesn't know what year it is most of the time and when asked it is anywhere from 1984 to 1999. There have been times when he says it is as recent as 2004. Since he can't read or write any longer I can't leave him notes for prompting and his short-term memory has been greatly affected so the normal prompts one would use in memory loss issues don't work for him.

 

His sense of reasoning is based primarily on physical prompts. For instance, if he's not showered and dressed before me - or unless I've gotten ready for the day before he awakens in the morning - when I go to the shower that prompts him that it's time to do the same. I'm working on helping him relearn the concept of "taking turns" since it is necessary for me to assist him in the shower. If he's gotten ready before me, but hasn't put his shoes on, invariably I will shower, begin drying my hair and he will pop in the bathroom with one shoe on and the other that has his AFO in it in hand - wanting me to help him with his shoe. With a child it is easy to say no, you wait your turn. I'm trying this tactic with him and it is real frustrating because it just isn't getting through. Sometimes it's easier to just take the two minutes necessary to get the shoe on than it is to become frustrated.

 

What I'm trying to say is that stroke sure can affect a person - adult or child - in the ways you've described. His deficits have been documented by the neuro-psychologist. He had begun experiencing severe dementia within the last year, and he is now on two medications that help with it. The medications were prescribed by his neurolgist, not his psychiatrist. They are meds used for Alzlheimers. Have you discussed the issues about her impulsiveness and reasoning abilities with her neurologist? His memory is greatly improved, and he is acting much less child-like. With his inability to read or write, not knowing his address or phone number - and even my name at times I've had to closely monitor him as well. Thankfully he has not ever walked away - has alot to do with his walking and balance issues I'm sure.

 

The mental issues you've described sound very much like those we've struggled with. The reasoning and judgement or impulsiveness are skills a speech therapist would normally work with an adult.

 

I'm glad you've found this site. We may not have all the answers, but you will be able to hear alot of experience here. BTW - in my husband's case, CHF stands for congestive heart failure.

 

Take care and keep in touch!

[jwatrous]

First, let me say how sorry I am for your loss -

My stroke was in 1985 at age 39 :Tantrum: , and am fortunate enough to say that I have never experienced what you are going thru with your girl, but if it were me, I would depend on the experts for advice

GOOD LUCK, GOD BLESS

HAPPY HOLIDAYS

June

[kanderson]

hi kim, my name is also kim, i just wanted to say hi, and to tell you how sorry i am for what your young daugther is having to go through. i had a ischemic stroke at 48. i wish you and your daughter a speedy recovery. glad you found this site.

 

 

kimmie

 

 

 

 

 

 

 

 

 

 

 

 

 

[slmstrokeangel]

When I first had my stroke I was amazed when I could not write my name. It was a small circular scribble. My granddaughter was at the age when you start teaching her to copy her name. She produced the same small circular scribble. Now I can write very well and she can too.

[lisas]

Kim,

 

CHF is congestive heart failure. It means your heart isn't pumping to the capacity it should be. Your heart should pump at about 60-65% normally. Rachel's was pumping at only 25% when diagnosed. She would also fill up with fluid very quickly in her legs and chest. Now with taking lasix-to rid the fluid and digitek-a heart medication to help the pumping, she is pumping at 40%. CHF isn't curable, but it can be maintained with proper medication, diet, exercise. Eventually if the heart got worse you could be a candidate for a difibulator or a transplant. Of course you would be on a transplant list for the new heart. That would only be if the heart continued to pump at 25% or less. We're thankful that the medication is helping. Hopefully with time, it will even pump better.

 

The doctors think that Rachel's CHF is what caused the stroke. Because there wasn't enough blood pumping to the heart, clots were formed.

 

I'm glad Alicia has good friends. I know that is important. :big_grin: Rachel is paralized on the right side. She can move her leg-just not the ankle. She can't however move the right arm. Hopefully some day. Rachel is left handed so that was a blessing.

 

Kim-what genetic disorder were the children born with? Rachel also was born with growth hormone deficiency. This too was a genentic disorder. She also has Rothmund Thompson Skin Syndrome. Her skin has white pigmentaion on it. It tends to be dry especially her feet and hands. We went to St Louis MO to Cardinal Glennon Childrens Hospital and Barnes Hospital when she was 2. They diagnosed her there. 2 very good hospitals.

 

I will pray for you and your family. :friends:

[kimt75]

Kim-what genetic disorder were the children born with? ......... I will pray for you and your family. :friends:

 

Thank you first off for the prayers. My younger three all have Stickler Syndrome, and my two youngest also have Pierre Robin Sequence. Stickler Syndrome is a conective tissue disorder. My son is in pain quite often from the Stickler Syndrome. My two youngest daughters were both born premature, with cleft palates, and very small chins. Both needing feeding tubes as they were not able to eat due to their birth deffect. The first year of my youngest twos lives were very trying, but they really have been doing well for a while now. I look at the Stickler syndrome as more of a nuisance right now after going through what we have with Alicia. The girl's health stressed me out before, but I'd pay someone to go back to simply dealing with that! I also have the Stickler Syndrome, and even though it can be a painful syndrome at least I can work around it. Like I said seems trivial now! My girls were diagnosed at birth, and I was diagnosed when my 4 year old was born. I knew I was in pain all of the time but I had doctors give me anti-depressents thinking I was depressed and told me to leave college because of it. Come to find out it was a genetic issue. My 7 year old son was diagnosed this summer when we started seeing new doctors in Cincinnati. We had used Dayton Children's until major medical malpractice happened with Alicia there. I won't get into that though, maybe another time.

 

Anyway, thanks for explaining your daughter's condition is.

[bstockman]

Welcome to the site, so glad you found us. I also had lefgt side paralysis ... now 3 yrs later my physical deficits are few. I walk much slower and with a limp, and have minimal problems with left hand.

 

I do however have cognitive deficits. Had problems with emotions, but antidepressant seems to keep that pretty much in control. unless I get over tired or if there is too much going on at once.

 

You can type "Right Brain Stroke" into your search bar and it will take you to a few sites that will also list some of the deficits.

 

I still have trouble with "focus" and get very distracted easily.

 

hoping you get into a mental health counselor or the neuropaychologist can give you more help.

 

Prayers and HUGS to you and your whole family