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When to consult a pediatric neurologist?

Would a pediatric neurologist be able to give me more information/answer more of my lingering questions about what exactly is going on with my little guy? Our current team consists of an SLP, an OT, a regular ped, a ped GI, an optomertrist and an allergist. I feel like most of the issues he is having must tie together somehow, but that I must just not be talking to the right people, or asking the right questions. Would a neurologist be able to help me with this, or would it be a waste of time?
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Re: When to consult a pediatric neurologist?

  • imageRachel Sonnier:
    Would a pediatric neurologist be able to give me more information/answer more of my lingering questions about what exactly is going on with my little guy? Our current team consists of an SLP, an OT, a regular ped, a ped GI, an optomertrist and an allergist. I feel like most of the issues he is having must tie together somehow, but that I must just not be talking to the right people, or asking the right questions. Would a neurologist be able to help me with this, or would it be a waste of time?


    I agree with auntie on the developmental pedi, if you feel like it's something neurological that an MRI may give clues too then yeah do a neuro but really they just follow and do scans alot.  The other thing you could try is a geneticist if you really feel like it all ties in together.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • I third the recommendation for a developmental pediatrician. We're going to one with J (the same one who diagnosed M with FASD) because, like you, I'm convinced there's something more going on (in our cas, than just general delays caused by his early life situation). The dev ped should then tell you if he thinks any further testing is necessary.  In M's case, he gave us a list of recommended interventions and other testing/specialists he thought we should see, including a geneticist.
  • EmAreEmAre member
    imageChoicesMom:
    Have you seen a geneticist at all? I think the dev pedi can help with that/referrals.nbsp; I agree with that being a better first option than a neuro unless he is having seizures or other obvious neurological signs.nbsp; Good luck!


    This was going to be my suggestion as well.
  • Depends on your medical insurance, but if it isn't too expensive I would call all of the specialists mentioned and get appointments. Likely there are long wait times for most of them. 
  • Thanks so much ladies! This board always had great advice and helpful suggestions. I guess I will set out in search of a good dev ped. What will a geneticist do? I don't know anyone who has seen one. I was thinking neurologist, only because our most recent dx all seem to be neuro. But I really feel like it all must tie together somehow, especially now that it seems that both of my nephews have similar issues. Here is a basic rundown of his history. Maybe one of you have had a similar experience:

    Screamed constantly as in infant. All day and all night. Started having blood in his poopy diapers at 4 weeks. It was determined to be Food Allergies (milk/seafood/shellfish...had to be put on a special formula which helped). Born with sacral dimple, but they said not a problem.

    Never started sleeping through the night. Would cry with pain at night, drawing up his legs, starting at the end of the first year. Thought it was more tummy trouble. 

    Was evaluated by EI at 10 months, because ped said he was grunting instead of cooing or babbling. Tested hearing and they said he was fine.

    Sat at 5 months, crawled at 7 months, walked at 9 months. 

    Very clumsy, but seemed to be mostly meeting milestones. Was late at clapping, drawing a line and jumping.

    By 14 months he had over 100 words, but he has never picked up proper pronunciation for most of them. I thought he was still just too young, until we got the Apraxia dx. We understand most of what he says, but unfamiliar listeners do not.

    Surgery for bilateral hydroceles at 18 months. Has lots of trouble switching from bottle to sippy cup/straw and self feeding with utensils. Choked on food for a long time. Did not cry when he would hurt himself, like his peers. 

    Sleeping/night crying situation got worse. Kicking and restless all night, most nights. Scope at 2.5 to rule out GERD and celiacs. Found swollen lymph nodes in the small intestine, but nothing else. Biopsies all came back neg.

    Still not sleeping through the night at 3. Started complaining of leg pain at night, and had quite a bit of trouble potty training.

    Was getting frustrated and becoming aggressive/impulsive at day care (1 day a week) at 3. Teacher suggested we see ped about this.  

    SPD and Apraxia dx at 3.5. They say his play skills are age appropriate, but he has impulsivity and body awareness issues. He has definite difference in tone, and hyper reflexive joints in his hands. Definite differences in auditory processing. His last progress report put his fine motor around 14 months. He often has trouble using a fork to feed himself, but he was riding a bike with no training wheels at 3, which seems odd. He also hastrouble recognizing familiar people (even dad, and my little sister who lived in our guest house all last summer), and tends to use a person's hair/clothing to identify them. Optometrist said his vision is fine. 

    Finally PT'd and drinking from a regular cup at 4. At 4 year well check new ped said he has a heart murmur, that he wants to recheck in a few months. Old ped never said anything about this, but that may be because she couldn't examine him well, bc DS screamed the whole time. Maybe it is something new. Not sure, but I guess we will see at the next exam. 

    There must be something that I am missing here, right? How can one kid have so many issues? And have first cousins with similar clusters of issues? My husband and brother also have similar issues. Could a geneticist be the person to figure this out?

     

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  • Thanks for all of the info auntie! I didn't realize that the face blindness had a name. My husband has this, and I have always teased him about it, not realizing it was anything more than just something quirky about him. However, DH is shy and DS is not. Cohen thinks that everyone is his friend, and that every man with dark hair and a beard is dad, so it concerns me for safety reasons.
    We have always kind of known that he has trouble recognizing people, but a few months ago we were visiting my younger SILs new apt, and while waiting to meet her roommate, he specifically asked my SIL what her friend's hair looks like. I guess that's when it really clicked for me that this is how he is identifying people. He sat on the lap of a guest he didnt know for thanksgiving, thinking that she was my mom.
    I see what you are saying about the geneticist. That's pretty depressing. We just want to be able to help him, and the cousins, the best way we can. I guess I just figure, the more we know, the better we can help.
    Thanks again for all of the information. This board has helped me so much in the past few months.
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