Brain Deterioration?

Discussion in 'General Parenting' started by Just keep swimming, Nov 14, 2007.

  1. Just keep swimming

    Just keep swimming New Member

    Hi family,

    Been a while since I last posted, we have all been down with colds/flu etc. Now I have it, NOT FUN!

    Anyways, as you know we have recently moved to a new county, so this means getting established with all new docs. So far, Aly is set with a wonderful pediatrician, has an appointment for her initial visit with a urologist next week and a new psychiatrist in medication December. She now has 2 new Tdocs, who see her weekly at least at school and/or home.

    In preparation of her pediatrician visit last week, I copied all the records I have, both medically and educationally. This got me looking closer at all her records and going over the first educational testing she had when she was 6 and the updated testing done last spring.

    Not sure why I didn't notice this before now but her test scores have actually gone DOWN since the first testing. She is still reading at about 1st grade level, but math is actually down to pre-K level.

    The new school psychologist called me this morning and set up a follow up IEP meeting, she has done some further testing on her social emotional levels. She is greatly concerned because she sees an extremely anxious child that is not anywhere near her same age peers for social emotional skills. DUH!! I coulda told her that!! Anyways, she is wanting us all to rethink Aly's placement for this year. Her being mainstreamed is not working at all, she is just too anxious and not able to comprehend what the rest of the class is doing. She is now acting out in her resource class room as well.

    And, the "tutoring" she was doing with a little girl with Down's Syndrome is not working any longer as Aly is not able to read even the 1st grade level books they were having her read to this little girl.

    Has anyone ever heard of any disorders where the brain actually deteriorates? Could this be caused from her medications? I mean, in basically 6 years of school she has hardly gained anything educationally or socially, she is actually doing worse.

    Her pediatrician is having Aly evaluated by a new Urologist as Aly is now becoming urine incontinent, and bed wetting as well. She wants her to have a thorough evaluation by her previous neurologist ASAP. She wants the new psychiatrist to carefully look at Aly's medications and see if there is any correlation (sp?) between her obvious backsliding and her medications.

    I am worried. I am scared. I am frustrated!

    Oh, and Aly said the tdocs are not coming to see her at school, although they report they have seen her at least once usually twice weekly since the start of school. Aly swears to me that she does not remember talking with them, although they have reported to me that they have and have verified a few things that she has told them. Could she possibly just be shutting them out?

    Again, I am so scared for her.

    Thanks for listening!
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Certain medications can cause cognitive dulling. Depakote is definitely one. My teenager threw it out saying "It makes me stupid. I can't think." She hated it.
  3. Steely

    Steely Active Member

    So sorry you are so scared, but it will be OK. Just give it all some time. The move is still pretty fresh.
    Plus school is geared to get academically harder as kids reach her age. A lot of kids start to report problems with not being able to keep up, or have behavior problems by the third grade because of the academic pressures.

    As far as medications ~
    My son's IQ test scores went down by 15 points after he started AP medications. They definitely can cause some cognitive dulling, and I was scared as well. Once we went off APs it all came back - so it is temporary - and possibly something to look into D/Cing the Abilify.

    There are also some linked urinary side effects to AP medications. Some patients have reported incontinence, others an inability to urinate.

    Certainly Depakote can cause dulling as well, as can other MS. At one point we tried Topomax, and we nicknamed it offense to anyone, but he literally could not even add 2+2 any longer.

    It would be my guess to look first at the Abilify with the psychiatrist.

    Again, sorry you are going through all of this.
  4. DammitJanet

    DammitJanet Well-Known Member

    The medications could be a part of the problem but...something about your post makes me wonder if you are not seeing some form of...what is it called...that autistic disorder where the child stops going forward but starts regressing.

    I have an uncle who we think has that. I say "think" because he was institutionalized some time shortly around 1950 and he has been there ever since. We are not sure if it was the trauma of having 3 of his older brothers go off to WW2 (he was the baby of the family) or if he was just hardwired to have something wrong. From what the family can remember and tell me, he was a fairly normal baby but when the older boys left in early 1940s, he stopped talking and withdrew into himself. He is now what one would call a savant about dates but nothing else. Seems very autistic to me the few times I have seen him. very few.

    He must be in his mid 60s now.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I thought about not posting it because it may not be what you want to hear, but then thought maybe it would be helpful. First, I'd have her evaluated privately. I'd see a neuropsychologist. Secondly, in people who have schizophrenia there is often a deterioration of function in all areas before the psychosis kicks in. I was just reading about that somewhere (wish I could remember where). HOWEVER, I still think it is highly likely to be the medications. My son, when he was on medications, didn't learn anything. Once he was taken off medications, fortunately an option for us, he bloomed. Many drugs cause cognitive dulling. I can not stress to you how badly the Depakote affected my daughter's ability to learn. She was in a two year college and couldn't even think straight. I'm not sure if this is the problem or if it's something else, but I do think another evaluation that is intensive would help. Although any mood stabilizer can cause cognitive dulling, as you know each child is different. Maybe Depakote is causing it in Aly, but Trileptal alone won't--or a Lithium add on--or Lamictal. I'd cover all the bases. She does have some symptoms of Pervasive Developmental Disorder (PDD) too, so maybe you should see if she's on the Spectrum too--I know, I know. It's very tiring. I was worn out trying to get my son figured out. Take care.
  6. Just keep swimming

    Just keep swimming New Member

    I have been having this dull ache in my belly for some time now thinking she could be schizophrenic! So strange that you posted that! Also, would like her tested for Autism. She has zero social skills, doesn't avoid contact with people when she is comfortable in her surroundings, though. She does avoid eye contact, always has. But then she surprises me and is a totally appropriate at times.

    I heard from her therapist today, he or his partner have been seeing her at least once weekly since the start of school. He was shocked that she said they haven't been there at all. I told him that the more I think about it, she is forgetting all kinds of things lately. Forgets where she puts her gameboy, 5 minutes after playing with it! Forgets what the teacher told her about doing certain parts of her homework. Is totally disorganized, in her room and her thinking. therapist is referring her to their neuro evaluation dept to see if she is appropriate for the Mind Institute for a thorough evaluation.

    therapist said Aly was extremely withdrawn today, seemed very depressed and refused to speak with him. He said she seemed "off" to him.

    I am wondering if it is time for a hospitalization for a complete medication wash. It's been over 2 years since they last did that and things have changed majorly since then.

    Anyways, not sure how I feel about this right now. Still scared for my baby girl!

  7. Hound dog

    Hound dog Nana's are Beautiful


    I stopped taking my BiPolar (BP) medications a couple of months before going back to school last year. I KNEW I couldn't learn on them, not when I had trouble recalling what I'd been doing maybe 20 mins ago. I wasn't even on very high doses either. But it was really hard to think on them.

    Do they even consider a diagnosis for schizophrenia at so young an age?

    I'd try for the new evaluations. Something is going on, whether its medications or what, hopefully new evaluations, and checks by neuro and such can weed out the problem so you can address it.

  8. TerryJ2

    TerryJ2 Well-Known Member

    so sorry. She sounds so sweet.
    My gut reaction would be dulling from the medications. I don't know how you would do testing ... perhaps a neuropsychologist.
    I agree, from the info in your note, that the plan you have now has run its course and you need to come up with-another plan.
    Best of luck.
  9. timer lady

    timer lady Queen of Hearts


    I understand your fears - you know honestly, you've had these fears for a very long time. The fears that something deep down just isn't right with Aly.

    I won't presume to make suggestions on this - I will encourage you to complete the entire evaluation with whatever resources you have at hand. Gather the information & the team in one room & hash this out calmly.

    You can be happy or grieve at the results at a later time. You can be terrified now if you choose - you just aren't sure what to be scared of.

    And say that & doing it are two different things. I'm not trying to be a harda$$ or anything. Honey, I've been in your vicarious shoes so many times with on tweedle or another, I just have to put things on hold in my head & heart to survive. I can always find the time to be sad, mad, confused, exhausted at a later date. Now is the time to find answers.

    Take care of yourself, lady.
  10. Stella Johnson

    Stella Johnson Active Member

    Well I know Depakote can cause "dulling" but it doesn't sound like what you are describing.

    I know that when my difficult child has bad seizures it sometimes wipes out entire spans of time. Never know what span of time it will wipe out. Sometimes it comes back, sometimes it doesn't.

    I also know that with my difficult child she doesn't understand spans of time. You could ask her if she rode her bike this week and she could say yes even though she hasn't.... she's actually thinking of a month ago because she doesn't understand what the time span is.

    Also with Sabrina she seems to teeter back and forth educationally. Last week she did wonderfully and is doing up to 3rd grade math and reading on a 2nd grade level. The week before it was like she was in Kindergarten again.

    As far as the bed wetting and wetting during the day, there were medications that caused that with my difficult child. If I remember correctly it was an AD and another drug... can't remember what it was that caused it. We took her off both and the wetting accidents stopped. She also has problems when she is really zoned into doing something and doesn't want to stop. She then swears she didnt' know she had to go. Everything goes out the window when she wants to do something badly enough. We just constantly remind her to go. Her teachers do this as well at school.


  11. Just keep swimming

    Just keep swimming New Member


    Thanks! Yes, I have been thinking that Aly's seizures are not being controlled very well right now. Hoping new Neuro will order another EEG soon. Hers are absence seizures, not real dramatic so they get missed by those who are not in the know. I have noticed her blanking out lately alot more than she used to. Then she is really tired afterwards and/or extremely irritable.


    Thanks! My mind, of course, is going in so many directions right now, actually has been for a while. Still not feeling like Aly is on the right medications, etc. She is so difficult to medicate and so difficult to evaluate because of her inablility to explain what's going on.

    This morning I took her in for her blood work and she has never freaked out before, ever. This morning she was NOT going to cooperate with the phleb. at all and refused to give a urine sample. This is SOOO not Aly. She usually cooperates really well for medical people. I dunno!!!

    Well, thanks everyone. Will update y'all as we find out more.

  12. Stella Johnson

    Stella Johnson Active Member

    Sabrina has absence seizures too. It sounds like they aren't controlled enough.
    Keep us updated!

  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Please let us know. I've always been interested in Aly, maybe because I have adopted kids--and a daughter who is bi-racial--stupid, I know. Plus I think you're doing such a good job trying to parent her. I hope it's drug-related, but NOTHING is hopeless, not even schizophrenia these days. The story I read was quite uplifting. The woman is doing very well on the right medications. I'll pray for your little one. Hope it helps at least a little.
  14. lindy-looper

    lindy-looper New Member

    I don't know about brain deteriorating but I do recall that my oldest daughter forgot everything she learned in pre school, kindergarden, and summer school by the time she was in first grade. I think at that age they just don't always retain all that achiademic stuff because it is just not important to them/

    My daugher didn't learn to read until she went on Ritalin in the second grade and then it only took her three weeks to learn how.

    Another thing I have seizures sometimes and when that happens I "lose" a lot of information and/or skills that I should know for a while.
  15. WhymeMom?

    WhymeMom? No real answers to life..

    I have no information to add, but just wanted to say I am thinking of you and Aly and hope you find some answers for her behaviors.....
  16. susiestar

    susiestar Roll With It


    I am sending gentle hugs to all of you. As you know, your instincts that something is wrong with your baby are never wrong.

    Get the testing, hopefully with as little stress on Aly as possible. She is such a great spirit, especially with all her challenges.

    We struggle with the absence seizures, and possible with more (who knows??) with Jess. It is hard on her.

    I will continue to pray for all of you. I am not sure what besides schizophenia might cause the backslide. I do know that if she has been mainstreamed for this school year with very little time away from chronological peers, she may well have actually forgotten the gains she had.

    Mainstreaming is not always a good choice for our kiddoes. Sigh.

    Even if academically the age group was right, if she was emotionally stressed, she might not learn, or could backslide. There were books about Emotional Intelligence that addressed this, or I think that was the topic.


  17. flutterbee

    flutterbee Guest

    I just wanted to let you know that you and your family are in my thoughts.

  18. SearchingForRainbows

    SearchingForRainbows Active Member

    I'm so sorry Aly is going through such a difficult time. My very first reaction is the same as what Janet said. I can't think of the name of this disorder either, but there is a type of Autism where the child regresses. However, I think you need to have her evaluated as MidwestMom suggests. With a good evaluation, hopefully, you'll be able to tell if it's the medications causing this or if Aly has a disorder you aren't aware of now. My heart goes out to you...

    I'll be keeping you and Aly in my thoughts and prayers...WFEN
  19. susiestar

    susiestar Roll With It

    I was thinking of you and Aly today. She is such a special little girl. I know it hurts you to see her in so much distress.

    Sending prayers and gentle hugs!!

    Tell her Auntie Susie loves her.

  20. Just keep swimming

    Just keep swimming New Member

    Hi all,

    Last evening her therapist called. She saw Aly yesterday. She has a much better working relationship than her male therapist partner. Anyways, she said that Aly was very off yesterday. When she finally was able to get her talking, therapist said Aly is hearing voices again. She told her that she is scared all the time, while at school. Thinks there are monsters trying to get her, kill her. therapist said Aly was shaking and crying.

    Tdocs are going to try to rush the psychiatrist appointment and the neuro evaluation. They are very concerned about her mental/emotional stability right now. therapist said the teacher said Aly seems "fine in class, but very quiet and reserved". That is NOT fine in my or tdocs eyes as Aly is NOT a quiet and reserved kind of kid.

    I need to put in phone calls to the county, for some reason our previous county "forgot" to transfer Aly's Medi-Cal to the new county! UGH! That may mean I have to go in and reapply. More frustrations!!

    Aly was in a good mood last night, we watched Shrek 3, ate popcorn and just had a fun, mellow night. She does not have school all next week, and I am glad. I hope the break will help her.

    Thanks again and hugs,