People who equate truth with fact are missing the point.

On (not) Getting a Diagnosis

When Carter was brand new and cried all day and night, we thought at first that he had unusually severe colic. We’d been blessed first with three easy babies; the bill had finally come due.

But he was not a regular baby who cried a lot. He also hardly slept; he didn’t interact with us much at all. He wanted me and only me, all the time, day and night. He was limp and floppy, mushy as jell-o in a plastic bag. As the crying went on (and on, and on), and was so frantic and shrill, we got scared that he was in pain. It seemed like the only possible explanation, and we were horrified that our poor baby was in some kind of agony. So, although he had no symptoms, we tried several medicines for reflux. No change. What else could we do? At that time, nothing. This was the period during which no one would listen to me; no matter how hard I tried to make it clear that a) I knew what I was talking about and b) that something was not right, I got no help.

So we hobbled along, and when Carter was about 6 months old and his doctor declared him hypotonic (low muscle tone, the cause of his floppiness) and sent us off to see a neurologist, I was happy. Terrible, right? But this was a pattern that repeated itself a dozen or more times. It wasn’t that I wanted something to be wrong with Carter; it was that I knew that something was wrong and wanted someone to identify it for us.

What followed, with the neurologist and the many specialists that we’ve seen since, is a process whereby we’ve identified issues without finding an underlying cause.

It started like this:*

Test, Procedure, or Evaluation




Blood tests – lots and lots of blood tests 6 months God only knows Negative
Neurological evaluation 6 months Determine the cause of Carter’s hypotonia Confirmed presence of moderate central (meaning more in his trunk than in his limbs) hypotonia
EEG 10 months Rule out seizures as the cause of Carter’s chaotic sleep patterns Negative
MRI 11 months Determine the cause of Carter’s hypotonia Negative
Full developmental evaluation 11 months Determine Carter’s level of functioning and qualify him for services The team diagnosed the following: fine motor delay (mild), gross motor delay (moderate), sensory processing disorder, separation anxiety disorder, expressive language delay
Barium swallow study 14 months Determine the cause of Carter’s frequent gagging & choking; look for reflux Negative
Barium enema 14 months Rule out structural abnormalities as the cause of Carter’s severe, frequent constipation Negative
Weight check at the pediatrician’s office 16 months I was concerned about Carter’s slow weight gain Carter was diagnosed with FTT (failure to thrive) for the first time

This “frog” sleeping position is fairly common among hypotonic babies.

By that time, we were tired. Weary. And really really tired of people not listening to our real concerns. The hypotonia and motor delays concerned us, of course, and Carter’s constipation was epic. (Seriously; 10-15 days with no poop at all, followed by 2 full days during which he struggled and grunted and strained to move all of that out of his body and into his diaper. The screaming? Never mind. I don’t want to talk about it.)

As much as we were concerned about those things, we were far more worried about his emotional development. There was the crying, of course. The all day, half-the-night scream-fest that our lives became three days after Carter was born. There was the not-sleeping, the mountainous wakefulness of him, his inability to fall asleep without my total participation.

Most of all, there was the unhappiness. Carter smiled for the first time at about 3 1/2 months old (Most babies smile their first real social smiles around 6-8 weeks.) and I was so relieved to see it, I bawled. Even once he had the skill, though, he rarely used it. He was just…unhappy.

He didn’t know how to laugh, either. Even if we tickled him, he did this weird uff uff uff thing that didn’t sound like laughter so much as a person who is trying to drag a heavy box across a room. I would take Carter to playgroup or LLL meetings and cry when I heard other baby’s spontaneous laughter. He finally laughed not long after his second birthday, but just like his smile, he didn’t want to wear his laugher out and used it rarely. To this day, the sound of Carter’s laughter startles me.

After Carter’s full developmental evaluation (via 0-3 for those who know about such things), he was qualified for OT (occupational therapy) and PT (physical therapy). The agency to which we were referred for those therapies couldn’t find us any therapists. After 8 months of waiting, no one at the agency could even give us an idea how much longer we would have to wait.

In place of the therapists we needed, the agency sent us a person whose job title was “Child Development Specialist.” She taught me how to sing Eensy Weensy Spider with Carter. Told me (with a straight face, sitting in my book-lined living room, having moved aside a large stack of books to make room for her purse) that reading to Carter and letting him see us reading was essential to his development.

Apparently, our child had all of his problems because we were too stupid to know these things. Although I seriously considered it, I never gouged out the eyes of the visiting “specialist.” (Though specialist of what, exactly? You don’t need much formal education to teach people to do things they already know how to do.) Several people said to me, “You know how things are in New Mexico; there are so many people who need to be told things like that!” Fair enough, but seriously, the book-lined walls weren’t enough of a clue for her?

Weary and frustrated, we gave up.

I was ashamed of that decision, but the search for a diagnosis had worn us down. I needed time to regroup. We didn’t resume our search until Carter was almost three years old.

One struggle I had was finding providers who would listen to our whole story. I didn’t believe then (and don’t now) that Carter’s many issues were unlucky coincidences. Except for his allergies and asthma (which he inherited from his dad), I’m convinced that there is a common cause. We were hunting for the bottom-line diagnosis that would explain everything.

We returned to our search for that diagnosis when Carter began to have symptoms of CVS, though we didn’t have that diagnosis yet.

Test, Procedure, or Evaluation Age Purpose Result
Full developmental evaluation 2 years 11 months Determine Carter’s level of functioning and qualify him for services (again) The team diagnosed the following: fine motor delay (moderate), gross motor delay (mild), sensory processing disorder, separation anxiety disorder, right-sided weakness
Well-child check 3 years Annual check-up Carter was diagnosed with FTT for the second time (he hovered at a very low weight for a long time)
More blood tests 3 years We were trying to rule out pretty much everything And we did – all negative
Child Find evaluation 4 years 5 months Determine Carter’s level of functioning and qualify him for services (again, but this time services would come through the public school system) The team confirmed all of the findings of the last two teams at 0-3 and added visual processing difficulties, slow processing speed, and some kind of memory issue that they couldn’t name
Evaluation and treatment by a developmental pediatrician 4 years 10 months Rule out autism and try to diagnose (and therefore choose appropriate therapies for) Carter’s increasingly troubled behavior ADHD, severe generalized anxiety disorder; Carter got his first prescriptions for psychotropic drugs and (life-changer, this one) meds for sleep!
Evaluation by a gastroenterologist 5 years Diagnose the cause of Carter’s episodic vomiting Cyclical Vomiting Syndrome diagnosed
Well-child check 6 years Annual check-up Carter was diagnosed with FTT for the third time
IEP evaluation 6 years Determine Carter’s eligibility for special education Confirmed presence of memory issues and slow processing speed and other learning disabilities; IQ test put Carter in the borderline range
Evaluation and treatment by a pediatric psychiatrist 6 years Arrest Carter’s spiraling instability, violence, and self-injurious behavior Confirmed ADHD and severe generalized anxiety disorder diagnoses; diagnosed bipolar – changed one year later to bipolar with psychotic features
Genetics evaluation and metabolic and genetic blood tests 7 years Rule out metabolic and genetic disorders as the cause of Carter’s issues; we were especially suspicious of Fragile X Negative
Neurological evaluation 7 years Find out if, with all the new information we’d gathered since Carter’s first neuro evaluation at 6 months, we could make a diagnosis No definitive diagnosis, though the neurologist does believe that Carter’s issues have a single neurological cause, possibly due to a stroke or hypoxic brain injury in the weeks or months before his birth

And that’s where we are today, with our not-quite-a-diagnosis. I have a hard time describing how I felt when the genetics tests and the second neurological evaluation came up (mostly) negative. I can’t describe it because I don’t exactly understand why I needed (need) it so much. Carter would require the same therapies; he would take the same medicines. We would face the same struggles and live the same joys.

I suppose there’s some validation in having a lab-confirmable problem and I craved that. No one looks at you askance when you say “hypoxic brain injury” the way so many people do when you say “mentally ill.” There’s community, too, though since we gave up (and not temporarily this time) our search for the bottom-line diagnosis, we’ve found a community of parents whose children are mentally ill.

I was surprised, after we decided that the time had come to stop searching for a diagnosis, to find that I was grieving. Somehow, I had become attached to the idea of finding out why. I’m no different than any other woman who has given birth to a child with problems; I’ve searched my memory over and over for the things I must have done wrong.

So I grieved, and although it makes me sad (and might always), I’m learning to live with the not-knowing.

*I didn’t include any of the diagnoses that Carter was given (or that we considered) but were ultimately rejected. Those short-term and provisional diagnoses would more than double the size of these already unwieldy tables.

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52 comments to On (not) Getting a Diagnosis

  • Oh, that not-knowing is so very, very hard. You have my utter sympathy.

    My son also has CVS and migraines and various gastro issues and we have done the circuit of testing and wondering and hoping. I think I understand you when you talk about grieving the loss of the search for WHY. Accepting the inexplicable and the unfair seems like it would be in direct conflict with a parent’s primary responsibility to protect her child; yet, I have begun to think that perhaps that is the beginning of where we might find peace.

    Good luck and best wishes to you and your son.

    • Yes, exactly! There’s also the death of the notion that we can cure or fix all that ails him, though that came a few years earlier, maybe during the pre-school years. And yes; as hard as the grieving has been, there is a great deal of freedom in stopping the search and just focusing on what is in front of us.

  • Oh heavens…It is OUTRAGEOUS that it took 6 YEARS to get ANYONE who could offer anything helpful.” For that you get my deepest sympathies and a shaking of the head.

    As you listed the symptoms – the hypotonia, the motor impairments, the language delay, the emotional-behavioral issues…I was thinking neuro syndrome of some kind.

    I wish there were words that you could have. You deserve them. And I understand deeply the need for words – they create understanding, they suggest a plan, other people can associate meaning to them.

    To name things is to know them. And you’ve spent the last six+ years trying to know.

    • Thank you! Yes, exactly, the words and the definitions and all that those mean – I would love to have them.

      I think a huge part of the problem is the weird ways that we specialize our medical care in this country. No doctor was interested in the whole story; they just wanted the pieces that were specific to them. Of course, since we had a constellation of symptoms but no diagnosis, we didn’t know which specialist’s door to break down.

      The worst for me was when the genetics tests came back negative. Carter fits the bill for Fragile X like a hand in a glove and I was very surprised that he didn’t have it.

  • I know how challenging doctors and diagnoses can be. It is certainly a struggle.

    I have also worked with lot of kids like your son, so please let me know if you ever need any support. I have looked over my fair share of (not-always-so-good) IEPs as well.

    The problem with the “specialist” that came to your house is that they usually don’t have to have a degree. They are considered glorified babysitters in some parts of the child dev’t community. It’s really unfortunate. And how insulting to be told to read to your kid.

    Anyhow, please let me know if I can ever be of help!

    • Thank you! Yes, they kept sending the “specialist” to our house because they had to to keep our case open, but the whole thing was ridiculous. I’m pretty sure I had more education in child development than she did. I get really angry when people – teachers, therapists, doctors, anyone – deal with people in a totally generic way, without even trying to learn what any given person or family really needs.

  • Vanessa

    Thank you for sharing. I feel your pain and hope that you and your family are doing well. My son suffered a stroke at birth.

  • Heather

    Thanks for sharing your journey in this blog. My nephew has behavior problems related to Pervasive Developmental Disorder and Adhd, but he was diagnosed as bipolar at 4 and was treated for that for 3 years before they changed the diagnosis. I understand the frustration of no one doctor looking at enough of the symptoms to try and get a full picture. I am thankful that you finally got (at least partly) some kind of answer. I pray for you and your family daily.

  • I get the not having a diagnosis. Although, after years of finally getting to one that seems to be spot on, I can tell you, it’s not all that much better. Sure – Tim finally qualified for assistance that has allowed us to get him into a great residential program, and he’s been (pretty much) stable for about 5 months, but we’re no closer to understanding how to get him through the rest of his life than we were at age 4 when he was first (incorrectly) dx’ed PDD-NOS. We’ve been through all the tests and an alphabet soup of diagnoses too, although, thankfully, other than serious language delays (both expressive and receptive), Tim doesn’t have any other neurological symptoms – ok, caviat, not caused by meds. He has lost fine motor skills with the meds it takes to keep his severe hallucinations and delusions at bay.

    I say “schizoaffective disorder” loud and proud. I figure if we don’t say it out loud, often enough, in front of strangers, friends, neighbors and family who see my (when stable) fun-loving child, they start realizing that it’s a real disease, and not a diagnosis-du-jour for the latest criminal or nighttime telly storyline.

    • Oh, yeah, that’s another complication of diagnosis; once kids like Carter and Tim are on meds, it can be hard to tease out what are new symptoms and what are med side-effects.

      And yes, that’s part of the reason I blog: because for all the controversy about pediatric bipolar and all the people who say it’s nothing but an excuse, some people will hear and understand. Even if there is over-diagnosis and over-medication of children (and I’ll leave that determination to real researchers), some kids and families are struggling. Our kids can’t be dismissed. They are not disposable.

      • Krista

        My son is delighted with the side effect of one of his meds–it made his hair curly!! Kind of that tussle, just out of bed, Han solo hair. The girls go nuts for his hair lol. Gotta look for the little things to keep me going.

  • I cannot imagine. Reading this gives me a little bit of a better understanding in what my inlaws when through when trying to diagnose my brother-in-law at a young age. He received a bi-polar diagnosis, but that’s not really what it is. My MIL still thinks that something happened during his birth that caused everything.

    Also, I can completely understand needing a diagnosis. My youngest son just didn’t seem “normal” when he was born. Very, very needy. And it would take 6+ hours to get him to sleep at night when he was in the newborn stage. I was seriously losing my mind. At 4 months old, he had a few seizures (we didn’t know they were seizures at the time), and was finally diagnosed with epilepsy. As hard as it was to wait 4 months for a diagnosis, I cannot imagine 7 years (and counting).

    I will pray for a diagnosis for you!

    • Thank you! Writing this really surprised me. I didn’t expect it to be difficult at all, but between the many, many details that are hard to remember and the stew of strong emotions, it was challenging! Thank goodness for a huge stack of medical records or I don’t think I could have made sense of any of it.

      And your son? How is he now?

  • I remember when we had Aeryn’s first round of professional testing at age 4. The neurologist we saw agreed with the psychiatrist’s ADHD diagnosis, but said to me, “I’m sure there is something else going on here, but she is too young yet to know for sure what it is. You are going to have to watch her, eventually it will emerge fully.” “Watch for WHAT???” I wanted to scream at her. How would we know what “it” was? Her cognitive development at age 4 seemed poor – she scored at the lowest end of average on the verbal ability portion of the IQ testing. We didn’t get the bipolar diagnosis for another two years. We were lucky in that it seemed to be the right one, although there is still uncertainty. The neuropsych who did an evaluation for one of our local autism groups said that if she were only tested on her social skills she would have been diagnosed with a spectrum disorder, but based on her cognitive abilities she didn’t meet the criteria. It was maddening.

    In certain parts of the country pediatric services for special- and high-needs children are lacking. In my remote area there are far more children in need of psychiatric/neurological/psychological services than there are providers. The specialists who are in practice have long waiting lists – it can take up to six months to get an evaluation done. When your child is being expelled from one program after another, six months can feel like forever, especially it its the second or third professional you’ve tried to get in with.

    I wonder if there is any one place where there are crossover services for a child like Carter. I ache for your son and for you, for all you have been through and will go through. I pray that someday you will have an answer, an “it.” After everything that you have gone through…a diagnosis isn’t the Holy Grail but when your child is struggling, a diagnosis is the start of the knowing what to do that we so desperately need. With my daughter, I just wanted to know WHAT it was so I would know what to DO, because everything else I was already doing didn’t seem to be working.

    I know it’s trite to say things like {{{hugs}}} but I’ll say it anway, heartfelt and with meaning.

    • Oh, I SO know that feeling, when a provider says “We’ll just wait and see,” and you’re sitting there wanting to scream, “What the fuck do you mean, wait? Are you kidding me?” Because your family is in total chaos and you don’t sleep at night for the worrying and everything is agony and you’re supposed to WAIT.

      And yes, lack of services. By this point in our journey, I have talked (online and IRL) with many hundreds of people whose kids have emotional, behavioral, and social challenges. I have yet to talk to ONE parent who said, “Yes! We’ve gotten everything we need!” Even in cities, even near large hospitals, even with ample financial resources (which tend to dwindle across the years), everyone struggles to get their kids what they need. And of course in small towns and rural areas and in areas that are under-served due to low-income or other reasons, it’s even worse. The range of care seems to be barely adequate at best to worse than nothing (as in, programs that actually hurt kids) at worst. It’s shameful. When I have time, I’m going to make a little blog badge that says there are no disposable people. I think most people don’t know that our education, health care, and legal systems treat a sizable segment of our population as if they are disposable.

  • I can feel the frustration you must have, not being able to positively name the underlying condition. But I hope sharing your story helps, and you and your family are in my thoughts.

    • Thank you! And it does, always. The more I tell Carter’s story and the more people read it (and the other stories written by parents raising kids with mental illness), the more people are out there in the world, aware.

  • We do always want to know why, don’t we? And though my story isn’t in ANY WAY comparable to yours, I do get the “it’s my fault my child has x” slippery slope.

    • Oh, yeah, the guilt. In the first few years of Carter’s life, the guilt tried to destroy me many times. That’s one of thousands of reasons I want there to be many more parent support groups – in the early years, parents need vast amounts of support and I believe it can only come from other parents walking the same road. There is nothing a provider can do that compares to what a person who completely understands can do.

  • kae

    the unknowing is unsettling
    mostly because you don’t know how to “fix” it
    not that he needs “fixing”
    but he needs relief
    and a chance to laugh and smile

    always praying for him and you
    and wishing there was something i could do

    • Thank you. Thank you and thank you and thank you. Love you for your constant support and prayers!

      And I know there are many in the disability community (and especially in the autism and HOH worlds) who object to terms like “fix” and “cure.” For me, it comes down to suffering. Carter suffers and I would fix him the very instant such a thing was offered, no hesitation. He does need fixing and I’m broken hearted forever and always that there isn’t a cure for him, so that the beautiful boy under the illness can be the boy we see every single day.

  • I just want to scoop the both of you up and hug you. What awful trials you have both/all been through. Know that any mom including me would fight tooth and nail for answers like you did…you are one amazing momma!
    Carter is very lucky to have you.

    • Thank you. Yes, moms fight. I have this theory that the worst thing you can do to a woman is hurt her children, and the worst thing you can do to a man is hurt his partner. Not that dads don’t fight for their children, too; they definitely do, but so often it’s the mom studying, calling, reading, asking, searching, and fighting.

  • PS I am sending prayers your way

  • I am can’t imagine not knowing or ever knowing. Hugs and prayers.

  • Your post caught my eye. I’m struggling so much with not having a diagnosis yet. I feel like I want to scream at his doctors at the next appointment. I feel incomplete as we move forward and feel like the doctors aren’t trying hard enough. I don’t know if we’ll ever know for sure what my son has, but I hope to someday find peace in not knowing.

    • Sigh. Yes, it was absolutely unbearable for me for a long, long time. Feeling disregarded by doctors when you’re live is in constant crisis is insult to injury. Such a terrible feeling.

      I do hope that you find your way to either a diagnosis or peace with not having one. Hope that so, so much for you.

  • Oh, this is so hard. My oldest has a quasi-diagnosis of double depression. It’s still not firm, though. We were fortunate to find a pediatric psychiatrist has turned out to be terrific. No nonsense and very thorough. My son could be bipolar and even if he’s not, ten percent of people who experience double depression with psychotic symptoms go on to become classified as bipolar.

    It seems silly to want a firm diagnosis, since the course of meds and therapy would be exactly the same…but…

    I still want to know.

  • Not having an answer is very very hard. I cannot imagine the pain of having to accept that there may never be a definitive answer to what’s going on with Carter. The pain in knowing that you’re just going to have to muddle through and do the best you can.

    With just your mom-knowledge of who Carter is.

    You do know who he is. Even if you don’t have the words, the medical diagnosis. You know him.

    That may have to be enough.

    Much love. Much much love.

  • Human nature requires a solid, concrete answer. It’s why we struggle so hard with things that can’t be understood.
    But you’re very insightful, admitting that the problems and therapies are all the same regardless. I hope you’re able to come to peace with not knowing the whys.

    • Yes, we always want to be able to point to a cause. We seem to be hard-wired that way. And yes, I’m mostly at peace with not having that. It’s been a long road to get there, but time has given me more confidence and I’ve become better able to accept all of it.

  • Thank you, on behalf of many parents (and adults) with rare and refractory conditions.

    There is a common saying in medicine: “When you see hoof prints, think horses – not zebras.”

    What’s tough in the <6 month infant is the variability of development — hard to see the zebras. Plus the not-sleeping bit — how much was *that* adversely affecting his development? I don't mean that in an accusatory way, I mean that in the sense that I suspect that infant sleep disorders aren't given the attention that they should have.

    Oh, and the “Child Development Specialist" irritation — I have a grrr there too. Actually, several. That's another story for another time.

    • Oh, yes, the great circular puzzle. How much of the current constellation of issues was caused by the original cause, and how much was caused by an odd wiring of his brain due to lack of sleep, constant crying, and a dearth of normal relationships? A chicken-and-egg question.

  • Wow, there is so much pain in this post, I don’t know what to say. The runarounds and non-diagnosis are more maddening than anything on the planet. I have an 8 year old son on the Autism Spectrum w/ a sort of accurate PDD-NOS diagnosis. He is much more related and has so much more social desire than 99.9% of kids with this diagnosis (and this wasn’t always the case, used to be much more variable) but his very significant language processing issues make him more spectrumy than not — that, combined with his total cluelessness as to social norms, and that he learns best when material is broken down into small parts. But his specific constellation of issues is very quirky, and in terms of education he needs to NOT be exclusively with other spectrum kids because he needs children who will initiate and respond appropriately to social overtures.

    I have a friend whose son at 13 has no specific diagnosis, although he had LD issues and “Aspergers like” qualities. My friend says his son has “a 100% diagnosis of being Gabe” but I know in other ways it’s frustrating. I was just talking about how hard it was when Jake was 6 months old and I KNEW there was something “off” about him, but was essentially patted on the head and told I had a case of new mother over-reactiveness. Grrr. And then a speech ‘therapist’ who said he would be fine, that he was just “thoughtful and dreamy” – no he has a severe language processing order you idiot.

    Besides all the therapy and educational support we give Jake, we have done a lot of “alternative” biomedical intervention with him (but nothing really fringey or dangerous, working with a very smart, non-doctrinaire, cautious medical doctor) and I have to say that some of your sons issues sound like they may be part of an auto immune element that often co-exists with neurological impairments. If you’d ever like to hear more details of our story and what we have done, I’d be happy to share that. Meanwhile, know that your story has moved me so, and I am just in awe of how much pain you somehow manage to shoulder. I was going to say how much crap we take on without breaking, but realized that’s just not true, I break regularly, and I suspect you do too, but somehow we manage to put ourselves back together and go on. Because we have to. Because we don’t have the luxury of staying broken. Because our kids need us too much, and there is too much work to be done.

    • Yes, the head pat. The condescension. I didn’t handle that well. Don’t handle that well. And yes, I break regularly, although less now since my husband got in my boat. For a long time, he refused to believe what was in front of him. When he joined me, everything changed. Still, I break coffee cups now and again.

      And it IS amazing how often we can get up and start again. Because we just do, and who else can? He’s my little boy.

  • AmyLynn

    I can very much relate to your struggle. My daughter was finally diagnosed at age 4 with Bipolar Disorder. Saying the words “My daughter has a mental illness.” Was horrible at first. I had to grieve. Grieve for the child I thought I had and wanted. I had to get past that to accepting the child that I had. It was a long HARD journey…Today she is almost 19 years old and about to enter a University where she has a full scholarship. She has thanked me more than once for sticking with her when she raged, and screamed and was unable to show affection. I send my hopes and prayers up for you and your son. Email me anytime if you have questions, as her story is over 19 years long now….too much for a reply. Keep the faith!! …..

    • Oh, thank you! I would LOVE to hear more of your story! Would you consider submitting it for the AnonyBloggers series? You don’t actually have to be anonymous. Or you could be. Whatever, but I would really love love love to read the story of a child like Carter going to COLLEGE! Holy cow!

  • AmyLynn

    oops I meant too long to get into in a reply–did that come out right?—–sigh

  • As scary as my son’s first weeks and months were. Dozens of tests, procedures, surgeries; we always knew what was wrong. And usually what to do about it. I can’t imagine not knowing. The not knowing would be torture.

    Also read your birth story. Successful homebirths seem like hitting the lottery to me. My midwife approved me for a homebirth. I was young and healthy and had no complications. I opted for the birth center. Good thing I did. My son wouldn’t have made it out of the driveway alive.

  • […] my son Carter (whose diagnoses are of the emotional/cognitive/behavioral/social sort) was two years old and had been screaming […]

  • […] Jones from the blog No Points for Style addresses those feelings. When my son Carter (whose diagnoses are of the emotional/cognitive/behavioral/social sort) was two years old and had been screaming and […]

  • Christine

    I stumbled across your blog tonight and am really enjoying it. Your workup sounds quite a bit like the one we have had for my daughter. She is five and has CVS, reflux and hypotonia as well as rage/mood instability/OCD issues. The one area we have explored extensively that you did not mention is mitochondrial dysfunction — it has been found to be an underlying cause of CVS as well as a variety of other disorders. Treatment has helped my daughter’s CVS but not her mood issues. Anyway, just thought I would throw that out there in case it is helpful…

  • Candy

    I love your honesty! when I read your words it’s as if I am writing them thank you

  • Jackie

    i hear you. Our son has a severe speech development disorder, but a lovely healthy, robust body, and always has been very coordinated. He also had a depression around age 3-5. I have been told he is autistic (NO way, jose, says every competent person who ever spent ten minutes with him), i have been told he might have sensory integration disorder (NOT!), and for purposes of the school system he is PDD- NOS. WHATEVER (and my ability to say this is hard won). To stop caring about what is in effect a non-diagnosis i had to break down thoroughly, with months of clinical depression, taking meds, going to therapy myself…i totally understand the need for a diagnosis, if only to know what to do and what to expect.

    Our current working hypothesis is some sort of thorough brain damage in the language processing area. So the little plastic brain works around it, but it means that many other things come more or even much more slowly. But come they do. And talking about that clearly and unselfconsciously is quite an achievement for me.

    So, know you are very well understood, and a virtual medal for fighter mom from me, and best wishes to your WHOLE family!


  • Krista

    Even though I found out about your blog from a book about cvs I didn’t realize he got a diagnosis.

    Because of my severe complex migraine disease, I have an excellent Neuro. He confirmed cvs for my son, put him on a med, with two increases, and NO cvs episode since last year!!! He still struggles with asthma, migraines and catches every bug, so he still misses school.

    This realization made me wake my husband to tell him the news lol.

    Keep hanging on. My hand is always here.

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