Memory problems

[SSS]

I could write a book & you can PM me for more if you want.

We went through a year+ of massive supplements,abx, you name it. 4months plus of picc line(iv) abx. Yes, my daughter was functioning at her best under this doc's.care.

We knew were done when my daughter refused to go back. She had to be carried everywhere.kicking, screaming completely out of herr mind. I an not exaggerating a bit.

So really, we may not have been "done".

The llmd was.great. If my daughter agreed to it, I would take herback there.

After the crash during lyme tx, the best relief we have gotten is from.steroids and pex. That is seemingly a sign that we are at least mostly past the infectious part and on to the autoimmune part. Unless, of course, this IS all autoimmune and the lyme was coincidental. Correlation does not equal causation. I am firm believer in that.

Excuse the typos I am on my phone!

 

*I am really sorry you've been through all that- I understand. I don't think anybody really gets what it's like to live through this pain and absolute emotional toll except the parents on this board.

Wish I could help more- thanks for sharing with me, I am sending PV's----

Edited March 28, 2012 by S & S

[1tiredmama]

This is a fascinating conversation. My ds17 is waiting to see Dr. L. for an eval. His memory is horrible. I think it is his greatest threat to living independently. As it is, we have little signs up to remind him to brush his teeth, take his meds, comb his hair... But, he forgets to look at them. When I remind him to check his morning routine sign, he still accidentally forgets to do one or two of the five simple tasks. Very frustrating.

 

My son often forgets things like what year it is, what holiday comes in what month, his date of birth... He was a gifted child until the age of seven! Something is very wrong with my child, and I haven't been able to get anyone interested in his case! I sure do hope that Dr. L. finds him worthy of her time and attention.

 

Thank you, Pow Pow for starting this thread. It is the first I've read about memory problems in children.

[PowPow]

I am glad you are seeing Dr l. What is his diagnosis now, may I ask? My teenager is very interested in what other older kids are dealing with.

Did you make a list of all symptoms (including this one) and a chronology of illness? (For the visit with Dr l)

back to the memory topic, is he aware he is forgetful?

Edited March 28, 2012 by PowPow

[rowingmom]

My daughter's memory problems have improved significantly during treatment. Her rote memory has always been good - watching the piano teacher's hands while playing and convincing us that she could read music for two whole years, while she was only remembering which keys were played in which order. We found out after the pieces became more complicated. She picked up reading very quickly, even though she was still non-verbal at 4. Multiplication tables came easily. Her real problem was with executive function - remembering to brush teeth, get dressed, bring home homework, even to eat lunch at school. She had no concept of time passing and getting her out the door for anything was like herding cats. It is just during the last 6 months that I have not had to go to school every day to talk to the teachers, to see what needs to be done and to bring home forgotten lunch bags, homework etc. I am not nagging her constantly to do things that she should know to do for herself. Mornings are a lot easier now.

[TessaKrista]

Has she been tested for Lyme and other TBIs? This is a hallmark symptom.

 

What is a TBI?

[PowPow]

Tick-borne infections:

 

Erlichosis, babesiosis, etc.

[T_Mom]

It seems to me that there is a distinction between the long-term or short-term issues being discussed. Our experience has been that once out of an episode the short-term memory problems (ie., ability to memorize or learn new material) are no longer apparent...

As far as long-term memory issues I don't know for our girls. I will mention a curious fact (IMO:)...and that is that I believe I had some type of PANS episode as a child, constant strep as a child, etc. and have always had a total void of "memories" of life prior to 7th grade. I literally cannot recall common life events, teachers, schools, etc. Weird.

I sure hope it is not "common" to PANS, but it would make sense that it could be connected.

[PhillyPA]

My son had sudden onset at age five. He is now 9 years old. His long term memory is intact. He remembers everything up until age 5. As a matter of fact, the strangest thing happened during that first episode. He would regurgitate memories from way way back. He said the name of the town where he was born and said he wanted to go back. We only lived in this town for the first 13 months of his life, never talk about it, and had not been back. He remembered the name of the town. He talked about wanting to breastfeed!? He just kept saying these old memories and it was amazing. His voiced them all during hallucinations and psychotic episodes and then lost it all, including his language.

 

He currently remembers only things up until age 5 when he got sick. He will go into the basement and find an old lamp, bring it up to his room and put it exactly where it was when he was a toddler. He wants to watch tv shows he watched up until age 5. If we are in a store he might find an old DVD of a show he watched prior to his illness.

 

I recently showed him a video of himself prior to his illness. He looked at it and said, "that's my brother." I said, "no, no - it's you." He walked away looking very sad and said, "no".

 

He now looks completely autistic. Normal development up until age 5.

[philamom]

My son had sudden onset at age five. He is now 9 years old. His long term memory is intact. He remembers everything up until age 5. As a matter of fact, the strangest thing happened during that first episode. He would regurgitate memories from way way back. He said the name of the town where he was born and said he wanted to go back. We only lived in this town for the first 13 months of his life, never talk about it, and had not been back. He remembered the name of the town. He talked about wanting to breastfeed!? He just kept saying these old memories and it was amazing. His voiced them all during hallucinations and psychotic episodes and then lost it all, including his language.

 

He currently remembers only things up until age 5 when he got sick. He will go into the basement and find an old lamp, bring it up to his room and put it exactly where it was when he was a toddler. He wants to watch tv shows he watched up until age 5. If we are in a store he might find an old DVD of a show he watched prior to his illness.

 

I recently showed him a video of himself prior to his illness. He looked at it and said, "that's my brother." I said, "no, no - it's you." He walked away looking very sad and said, "no".

 

He now looks completely autistic. Normal development up until age 5.

Your post brought a tear to my eye. How is your son doing with the IVIG? Thinking of you!!

[PhillyPA]

Philamom - He gets better and better every month. As long as we move upward that is a good thing. We stopped backsliding when we got on a regular ivig schedule (every four weeks) plus iv steroids every four weeks.

[philamom]

Philamom - He gets better and better every month. As long as we move upward that is a good thing. We stopped backsliding when we got on a regular ivig schedule (every four weeks) plus iv steroids every four weeks.

Awesome!

[1tiredmama]

I am glad you are seeing Dr l. What is his diagnosis now, may I ask? My teenager is very interested in what other older kids are dealing with.

Did you make a list of all symptoms (including this one) and a chronology of illness? (For the visit with Dr l)

back to the memory topic, is he aware he is forgetful?

 

 

Yes, I have an organized list of diagnoses and symptoms along with pertinent labs, medical records, and school documents--all in chronological order. I'm ready! This is the "History" part of my records.

 

 

Bipolar Disorder (began treatment, age 7)

GAD

Nocturnal Enuresis (until age 16)

Insomnia

Sensory integration issues—sensitive to clothing, light, sounds, and food (age 3?)

Intestinal Problems (age 3 - present)

Joint pain/swelling (started complaining at age 3 or 4)

IQ dropped 35 points (age 8)

Handwriting skills deteriorate, eventually illegible (age 8 or 9)

Tourette's Syndrome (age 10)

Learning disabilities, not present when tested at age 8 (apparent at age 11)

ADHD (age 12) (no treatment)

Chronic fatigue begins—falling asleep in class, even falling to the floor (age 13)

Cavus feet (seemed to develop suddenly around age 13)

ADHD suddenly worsened (age 14) (treatment began)

Peripheral Neuropathy (diagnosed age 14)

Delayed Puberty (age 15) (treated with testosterone at age 16)

Possible Undifferentiated Connective Tissue Disorder (treatment started age 16)

Acid Reflux (age 16)

Asperger's (diagnosed age 17)

Chronic nausea resulting in weight loss and hospitalization (age 17)

 

He is on homebound instruction due to severe anxiety, severe fatigue, and chronic nausea. He has missed most of three years of high school.

 

He also experiences muscle pain/weakness, poor stamina, and trouble with balance and gross motor coordination.

 

Fine motor skills are mildly impaired.

 

He is still unable to take responsibility for self-care, such as showering, brushing his teeth, combing his hair, taking his meds, keeping a bedtime routine, and waking on his own due to a combination of forgetfulness, not wanting to be inconvenienced, and toothpaste is “disgusting.”

 

Struggles to fit in socially, although very friendly.

Edited March 29, 2012 by 1tiredmama