Other Syndrome that Mimics Shaken Baby Syndrome??

Discussion in 'General Parenting' started by Texasfilly79, Sep 29, 2012.

  1. Texasfilly79

    Texasfilly79 Guest

    Alot of us have had our children diagnosed from an early age with different syndroms.

    husband and I are just now starting the diagnoses with his oldest, Stephen who is 17, and trying desperatly to find out what is the root cause so that A) we can improve his quality of life so that he can one day live on his own and B) find out WHAT we can improve and what is a lost cause.

    His psychologist is no longer thinking autism (which I didn't think was an accurate diagnosis as he does not have all of the symptoms) but is now leaning towards a brain injury as an infant (Shaken Baby Syndrome) which after reading the after affects, fits.

    Based on the symptoms below does anyone have a child, or know of a child, that the symptoms fit but is coming up with a different diagnois?

    ONly reaon I am question the shaken baby syndrome, is 1) His Mom is not all together herself and shows some (but not all) of Stephens symptoms (Socialism, self esteem, etc) and 2) Stephen was diagnosed at the age of 3 with Leukemia, wouldn't a health professional have noticed all of the missing milestones and started raising red flags??


    Scasticy (ridgity of the hands/arms) - can not hold a pen correctly and handwriting is the same level as a 3rd grader learning cursive.
    Unable to process language
    Inability to have free thought (Can't explain what he is thinking)
    Inability to understand emotions (He crys but is unable to explain why)
    Unable to process social clues
    Speech issues (hard time sounding out certain syllables)
    Anxiety level THROUGH THE ROOF!!! (So bad that he would pee in his pants rather than bring the slight bit of attention that would cause with him getting up to go to the bathroom) - This is being taken care of by zoloft so his anxiety level is coming down, and quickly.
    Unable to make a descision
    Non Exsistant Fine Motor Skills
    Mentality of a 12 year old
    And of course, social issues and self esteem issues.

    We are unable to get our hands on the doctors records that we need (milestone checkups, birth records, psychological test, etc) from his previous doctors (grumble grumble grumble) we are basically starting from scratch.

    And of course, bio mom won't answer any of our questions (heck, she wouldn't even tell us he was taken Special Education in high school, the way she spoke he was in AP Classes.

    Any help you can give would be greatly appreciated. We do know there was no major trauma at birth, and while a part of me agrees with shaken baby syndrome, the larger part of me doesn't want to accept it.
  2. TerryJ2

    TerryJ2 Well-Known Member

    Welcome, Texasfilly.

    So, Stephen is still living with-his bmom? And he is your stepson?

    I'm a bit confused, because you've got difficult child on your profile as a girl and you don't have Stephen on the profile.

    Anyway, yes, his signs and symptoms could be consistent with-shaken baby, but I would still look on both sides of bio mom's family tree and bio dad's family tree to see if there have ever been any issues with-alcoholism, drug use, other types of illness.

    Does your husband have any parental rights at all? He should be able to request old records.

    I wish I could help more.
  3. Texasfilly79

    Texasfilly79 Guest

    Sorry Terry, I need to update my profile.

    Stephen now lives with us (YIPEE) and difficult child is a girl, but no longer a difficult child. :) That was all behavioral issues which we were lucky enough to treat and she is well on her way of be a typical teenager (which is a broad term I know) lol

    We have looked at husband family tree and nothing is sticking out, and like I said, Biomom won't anwser our questions either.

    husband does have parental rights and long story short, both Stephen and difficult child were not intentional on husband part. He loved them the same, but when he and Biomom divorced, Biomom did the typical "you can have the kids when I need you". Did husband do everything right the past 8 years since they split, no. But, Stephen's problems started way before then and no use getting angry over what could of have been.

    As for old records, with Stephen being diagnosed with Leukemia at age two and with a few years of Chemo, that paper trail is LONNNGGG. All we have gotten so far from the docs is dates that Stephen was visited with, but no diagnosis info, and since I'm step mom, my access is non exsistant
  4. whatamess

    whatamess New Member

    Your list of symptoms still sounds like autism spectrum disorder to me.
  5. InsaneCdn

    InsaneCdn Well-Known Member

    Any chance of having him evaluated for past brain injury? MRI or whatever, plus evaluations by specialists in that area? They should be able to confirm or dispute such a diagnosis. Not ALL brain injuries show up on an MRI etc., but many do.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If this were me, I'd want an MRI too and any other tests they can do for the brain. He does sound like he could have been shaken as a baby. Some symptoms also are autistic. Autistic kids do not mostly have ALL the symptoms in the list. Do you know if bio. mom shook this child? I know a woman who has a shaken baby (her ex shook him) and he is slow to learn and mentally challenged. Did she drink or use drugs or both while she was pregnant? That can also create a variety of problems including organic brain damage of various forms.

    in my opinion, at his age, my #1 priority would be getting his ducks in a row to set up adult services for him as it does not sound as if his condition can be reversed and he will possibly need assistance as he gets older. Can you tell us more about his background? Was bio. mom abusive? A drinker? A drug addict?

    It is possible you may never know the cause, but there are community supports that can give him a quality life...with help from caregivers. The amount of caregiving he would need depends upon how bad his disability is, regardless of what the label is.
  7. DDD

    DDD Well-Known Member

    Hi. This is a short response but if you apply for disability the government will have access to all his old records if he has been in the system via his bioMom. If she has been collecting benefits for him as a minor and you file for them as an adult believe me they will insist on updated examination by medical experts. Just remember if you do file you must keep filing. (I filed when difficult child was in the hospital with brain surgery at the age of 18. He just got approved this month at the age of 25.) Begin a file and keep it like you were working for the Supreme Court, lol, everything in place and in chronological order......and then a place for you to make notes on a daily basis of any abnormal behaviors that you observe with time/activity. It's a hard road but if he is to live independently he needs a deligent family advocate.
    Hugs DDD
  8. TerryJ2

    TerryJ2 Well-Known Member

    GREAT responses!
  9. buddy

    buddy New Member

    Whether or not he is diagnosis with shaken baby syndrome may be challenging but diagnosis a brain injury seems worth investigating for sure. Autism Spectrum Disorders (ASD) is diagnosed by symptoms not etiology ...My son has both Autism Spectrum Disorders (ASD) and a brain injury. Is thw brain injury the cause of the Autism Spectrum Disorders (ASD) symptoms???? Maybe, maybe not. He haa other bio sibs with autism so maybe its both and one making the other worse. We view the Autism Spectrum Disorders (ASD) diagnosis in our house as the most useful in terms of matching therapy to his needs. Autism Spectrum Disorders (ASD) methods work best for him so I don't really care if the symptoms are caused by the brain injury, smile.
    Your son's symptoms do overlap with Autism Spectrum Disorders (ASD) symptoms (just based on your list of course ) but also Fetal Alcohol Syndrome (FAS)/brain injury from chemical abuse. Chemo can have so many repercussions too.... Would sure be interesting to take all physical tests you can get new plus any records to a good neuropsychologist to pull it all together.

    Practically speaking I agree ...don't lose time, start work on transition services and go from a place of skill development and needs ......so great he has you advocating for him now .....
  10. Texasfilly79

    Texasfilly79 Guest

    That's my hiccup - with Stephen being diagnosed at the age of two with leukemia, he has had extensive medical test throughout his whole life. If there was a brain injury wouldn't it have shown up by now??

    Since we don't have records it may be there and we just don't know.

    As for biomom history, Stephen has lived with us since June and we have received ONE phone call from her asking about Stephen. She won't tell us his history so asking her about hers is out of the question. husband never saw her drink, do drugs etc during her pregnancy but doesnt mean it didnt happen.

    we have heard rumblings that when he was a baby there were concerns of abuse but nothing solid and if anything when he was diagnosed she went to overboard in being the overprotective mom.

    Midwest your right no matter the diagnosis the concern is trying to treat the issues we have now and improve the quality of life.

    It would just help if we knew the root cause it may speed up the process of diagnosis and figure out treatments.

    DDD I realized a long time ago that Stephen would need adult services but have no clue even where to start.

    Even though he is considered a minor we can still apply for disability services??
  11. DDD

    DDD Well-Known Member

    If your husband does have custodial rights (in writing) there is no reason that I am aware of why he can not access all the past school records (which would likely include neuro/psychiatric evaluations) and likely references or actual physical copies of medical reports from MDs, tdocs or psychiatrists who had contact with his son. If, on the other hand, he does not have legal custodial rights it's going to be next to impossible.

    Frankly, even if it makes you cringe, it is common for step Moms to post here and seek answers while the bioDad is not as emotionally invested. It does not mean the Dads are "bad" it is just, in my humble opinion, the difference between the sexes.
    More often than not when there is a separation or divorce the Dads just try to avoid the bioMoms as it limits the stress etc. So...if that is the case...you need to have a heart to heart talk with your husband and see what HE is prepared to do. if he's "working too hard" or "can't deal with bioMom" or says "you're so much better than I am at this sort of thing and I trust your judgement". Go for a walk around the block or to the mall and accept that you can not accept this responsibility because you have no power. Plus the teen needs his Dad to be #1.

    Yes, if a child is diagnosed as disabled they can begin getting checks at a very young age and usually free medical care as well as medications. As they near 18 there are new papers to be completed and new exams to be done to ascertain what if any disabilities will interfere with independent adult functioning. If you have a childhood history the phase up is much easier. It is a long road to travel but if he truly does not seem capable of independent living, of holding down employment etc...you should go for it. Good luck. DDD
  12. buddy

    buddy New Member

    Just some idead since you asked.where to.start..... around age 16 or so you can look into the department of Voc.rehab. you may also call your county dept. of disabilities where you may be able to get a case manager who can help you with funding, housing, work programs, medical help etc. In our county brain injuries are case managed by PHN's and most other disabilities by social workers. Every coumty is different of course but no harm in calling. Check the dept of human services website for your state and county.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Another big perk you can get, if he is declared disabled, is good housing where they are basically independent, but a caseworker checks in with them. My son is trying to get into one really nice apartment complex that is like that. The rent is only 30% of whatever his income is...some residents work at a sheltered workshop, but others have community jobs. I believe the diagnosis of Traumatic Brain Injury would be enough to get disability services, however they don't make it easy for you. I was told that on average the person has to apply four times. Also, if son is incapable of taking over his expenses or making decisions, you may want to look into getting legal guardianship of him. If you don't, then at eighteen his decisions are his own and he may put himself in danger.
  14. Signorina

    Signorina Guest

    Hi - I just saw this under new posts and I am not a usual poster on this board. So take this with a grain of salt...

    Definitely sounds like a neuro/brain issue. But AFAIK - shaken baby and similar brain injuries (that would lead to the extent of your step son's problems) usually have an markedly sudden "before and after" point. FWIW - I had my own neuro exam on Monday ( I had an apparent "double" concussion in April) and we had a long discussion about prognosis and late-term effects etc which touched on shaken baby syndrome. So forgive me if I take a a few moments of discussion and give "advice" - I know a little knowledge is a dangerous thing!!

    However, I am very familiar with side effects of chemo and cancer treatments - many of which are latent and start to show up 15+ years after treatment. I think it's definitely likely that the chemo could be responsible for neurological impairment - especially since your stepson would have been receiving the chemo at the same age at which many of his important motor and neurological skills would have been developing.

    That said, I read thru the symptoms and my FIRST thought was Cerebral Palsy. The rigidity, the crying, etc. Of course, I am only saying that with my very limited, and anecdotal knowledge of CP. (a close faily friend has a son with severe CP and I've watched him grow up. I also was a swimming "instructor" in a program for CP patients and people with brain stem injuries- again strictly anecdotal )

    That said, at 17 he is still young enough to be evaluated at a Children's hospital. I would take him to your closest Children's Hospital for a full evaluation by their developmental pediatric department. They can string the medical and psychological history together and work to connect the dots.

    Sorry to barge in!!!
  15. susiestar

    susiestar Roll With It

    As far as old records go, Sig is on the right track. Take him to a Children's Hospital and ask them to do a full workup - developmental disabilities, long term effects of cancer treatment, brain injury a possibility (it is possible - you can actually not realize that a concussion has caused problems until later in life. A cousin of mine had a LOT of them due to his daredevil nature and some strange things showed up when he was an adult. A good neuro finally looked at his brain scans and actually said, "HOLY SH((!" My aunt was there and was horrified to see all the damage the doctor pointed out that was caused by various concussions from stupid things he did as a kid/teen.).

    Give the hospital the names of the various places wehre he was treated and signed releases to get information. YOU might not get a response or info, but a hospital or other doctor will get the whole thing. I learned this after my son was in a psychiatric hospital for a long stay. I wanted ALL the records because I knew some things were not told to me. We had a lovely therapist who requested the information for me and let me have the 1000 pages that were his chart. It was an interesting read and they didn't tell me all the things their testing revealed. Which confirms my determination to get the entire chart and not just the summary the docs want to send me.)

    The docs will often charge a parent per page for the information and this can be up to about $1 per page, last time I asked for records. If there is an outstanding bill they can demand that it be paid before they give you the records. The docs do NOT charge each other for the info and they are not legally allowed to withhold the records from another healthcare provider. It is a loophole, but often they will demand huge payments for 'copying' if they don't want you to know something or it is a hassle and the records people have an attitude. Happens in every profession and records mgmt is no exception. But they MUST send records to the docs, and you CAN get the info that they learn. More importantly, the doctor can get the info and can use it to help figure out what is going on and how to help.

    On the topic of records, the Parent Report is still a powerful tool. It is the document that you create about your child with all the details of everyhting you know about him. The link in my signature will take you to the archived thread with the outline and explanation. I have found that a good Parent Report can often help you to get a doctor to pay attention and really listen to what you are saying and what you have tried already and how well it worked.