16 month old "In-toeing"?

It's hard for me to admit, even just typing... but ever since I brought my fraternal twin sons home I've just had this nagging feeling that the oldest is different.  I truly feel like I was realistic about them being different both at birth, as well as while they grew.  I expected differences.  Our boys are so radically different - both in looks and personality.  But my oldest, (whom I call my "Snug Bug" - "Bug" for short) has always had some very radical responses, looks, behaviors, and just general way he goes about life.  
 
To give some background, my boys were my first pregnancy.  My OB told me I was the picture of health with them.  Weight good.  No signs of HBP or Preeclampsia.  Then all of the sudden at 32 weeks and 5 days BAM!  My water broke.  I went to the hospital, where I continued to labor, and had my twins that same day.  I was prepped before going into the OR by a NICU doctor that I wouldn't be able to hold either of my babies.  I was given steroid injections during labor to help their lungs develop and try and give them a leg up.  All things considered, I felt confident going into the OR, and was actually excited.  I ended up changing my mind just before delivery though, and asked for an epidural.  This helped immensely.  
 
Bug was my Twin A.  His delivery seemed fairly quick.  I delivered him vaginally, but the doctor helped to pull him out towards the end due to the cord being around his neck.  "Cheeks", my Twin B was an emergency C-section, requiring I have a full spinal.  Cheeks, like Bug had his cord wrapped around his neck also.  It's my understanding that both vacuum and forceps were used on him before they attempted the C-section (My memory of this is faint).
 
Both the boys spent the next 10 days in NICU before being discharged.  Ever since, they have attained age-appropriate milestones by birth age - not gestational.  I've considered this a huge success, and overall feel pretty good about their development - physically, emotionally, and mentally.
 
Where I begin to wonder, or second-guess this sense of security though is when I look at Bug.  This isn't in comparison to his brother.  Stand-alone, his behaviors can be classified as very different.  At least I would say so, as hard as it is for me to admit that about my own child.  While in the weight-bearing phase before walking, Bug would only want to support his weight with one of his legs.  His noises are often repetitive, and screechy, or heaving-sounding (think of the sound Forrest makes in "Forrest Gump", when he confronts the principal who just slept with his mom, by emulating the noises the principal made).  When he's excited, he will flap his arms, or jut his chin out.  He's been walking since 12 months, but with his left foot turned inward.  He was X-rayed at 9 months to see if he had a congenital hip defect.  Nothing was detected.  When I look at him, his legs appear to be symmetrical from the knee up, but from the knee down, his left leg seems bowed.  In my mind I wonder about club-footedness, in-toeing, possibly CP, and a multitude of other concerns.  A NICU nurse nonchalantly shared with me before his discharge that upon a routine ultrasound of his head, Bug showed signs of having an intraventricular hemorrhage.  My husband and I asked to speak with his Dr. about it, who really downplayed it, telling us she felt like it would likely "self-resolve", and that the blood should re-absorb into the brain on its own.  To date, Bug has had no other ultrasounds or any other imaging done to see if this is the case.  
 
Bug also displays hyper-sensitivity to sounds (voice projection at sporting events like cheering a player on, whistles, buzzers, the vacuum cleaner etc.)  These sounds upset him to the point he is literally heaving crying, and that his little face jerks from side-to-side in a very fast, tic-like fashion that reminds me of someone hitting the "return button" over and over on a typewriter.  It's very scary to witness, and my heart breaks for him to see him this upset and physically shaken.  These episodes leave him utterly exhausted - both emotionally and physically.  
 
Where he is very sensitive to sound, Bug is oddly very tolerant of physical pain and is our "just keeps truckin'" twin.  Falls down?  Does not cry.  Finger in light socket?  A small whimper. Runs into a wall?  No recognition of it what-so-ever.  It baffles me.  
 
So we had our 15 month visit today and our Ped. is referring us to an Orthopedic for his leg and foot.  I am beyond scared.  Do any of you have any experiences anywhere close to being similar to my Bug's?  I'm wondering if there's a Neurological component, or possibly something to do with sensory processing.... It's just so hard not knowing.  I will update the post as we have appointments, and get answers.  Until then, I guess I'm just looking for some support and any similar stories.  
 
Thanks for reading <3 
 
- Morgan
 

 

I have no insight into the in-toeing. But have you had EI(early intervention) come in? They are a great resource. They will come in and evaluate your child(ren) and let you know if they need services. It is a wonderful program!! You don't need a referral from the doctor, you can call up and ask for an evaluation on your own. And if he doesn't require services, they can give you tips/ideas to help you at home. Definitely look into it and set up an evaluation if you haven't aleady. It certainly doesn't hurt. Good luck and definitely keep us posted.

 

EI is awesome-they got my nonverbal daughter caught up in 3 months.

I would add a developmental pediatrician might be a good idea for him. You can share the concerns and maybe videotape some of the behaviors you are really worried about to show the doc. :hug:

 

I'd also third going through EI as well.  I am glad you are seeing an orthopedist too. Let us know how you make out :hug:

 

Thank you ladies so much.  I'd actually never heard of EI.  I will definitely discuss it with my husband.  He has a total different way of looking at what's going on with Bug.  Having CP himself from injury sustained at birth, he was initially very defensive of my concern for our oldest, Bug.  From the 6-9 month range he'd just say, "Well if he does [have CP or something different] what are you going to do about it?"  At that time we'd had our first consult with an orthopedic who told us to bring him back when he began walking if we were still seeing differences in his gait.  So yesterday, at their 15 month visit, and with literally no communication between my husband about this issue since then as it seems to upset him, I was shocked when he brought it up to our pediatrician.  I hope he isn't defensive, or think I'm moving too fast too soon on this.  I may be a first-time mom (a fact he always reminds me of).  But I think, and I've heard it said before that "a mother just knows".  I don't love our Bug any less, I just want him to have every possible advantage in life, and the way I see if - the earlier we have concrete answers, hopefully the earlier we can begin to help him.
 
We live in Virginia.  Anyone have any Virginia (or NC since we're on the state line) recommendations?  Again, thank you all so much for the support. 

 

My husband was defensive & dismissive about our daughter's lack of speech. I told him the evaluation is free and kids under 3 can make huge progress, but it needs to happen now. If our eval had come back fine I would have been ok with that; if not I wanted to get working on it ASAP.

 

I also agree evaluation is a good idea. It is hard to know what falls in the range of "normal" and what might require intervention... Especially as a first time parent, and also as a parent of twins when you can't help but notice differences. Also, it is often true that the earlier the intervention starts the more successful the outcome. Hope all goes well, keep us posted!

 

There are many reasons for in toeing.  One of mine (also a 32 weeker) both his feet in toe.  One is due to tibial torsion and the other is due to tibial torsion and femoral anteversion.  Neither condition requires treatment.  Both only require time.  Most outgrow the conditions by age 6.  Some do not.  For my boy who just turned 6 one leg is improved but still slightly in toes.  His leg with both conditions has not.  However it does not inhibit him from running, jumping, climbing, walking etc.  In fact the doctor said that in toeing is often found in sprinters.  The in toeing helps with fast running.  They used to put kids in braces but discovered there was no advantage.  You are doing the best thing possible getting him evaluated by a specialist.  Its hard not to worry while waiting for an appointment though.
 
I also strongly encourage calling EI.  Mine had a speech delay and sensory problems.  They are wonderful and it costs nothing to get an evaluation. 

 

I also agree with EI, we had EI work on several developmental skills my twins were delayed in gross motor & social skills on from 9 month to age 3. 
 
The support they got was invaluable! We DID have a mild CP diagnosis for both girls, but with PT, taping, and stretching--- you would not guess it too much now  except one DD fatigues quickly and has really low core strength and high tone in her legs (not as flexible as expected through hip & knee). She had modifications when younger, but no longer gets or needs any. Other DD got same supports and was at age levels by age 3 except for some congenital health issues that had no relation to CP, but may to prematurity.
 
If your little guy was walking at 12 months, that is a great sign. Some hip/leg concerns can be addressed through  PT & taping (which is what we did), which is much easier with little kiddos than older kids that have had muscles & ligaments form and used 'incorrectly' for longer.
 
As for the hyper sensitivity, again talk to EI about it. Some kiddos are just more sensitive and others have more going on. We did auditory therapy 'listening therapy' with one of my girls and it helped auditory sensitivities. That said, she does not like movies, suspenseful music, loud sounds, and/or other agitating noises-- but she no longer covers her ears, cries, etc. She has developed coping skills.
 
You can ask for your twins medical records. It should show IVH and/or if follow up testing was suggested. We did follow up MRIs and neurology to watch IVHs my girls had...they are not uncommon in preemies and can widely vary in how they affect (or dont affect kids).
 
Looking at my girls medical charts their first three years was scary to be honest (and we were 1st time parents too) BUT we had tons of supports in the community through private therapies (through insurance) , dr specialists, and Early Intervention therapies...and later school-based therapies.  Now at 9, we NEVER would have guessed they were doing as well as they are. They both dance, excel in school, and are just awesome people (my subjective opinion, of course). I truly think that it was due to the amazing interventions and medical support we got when they were younger. We still see some specialists for medical stuff that lingers, but we no longer do therapies and/or are followed by neurology.
 
As PP stated, in-toeing itself may or may not be an issue. Always best to get an ortho consult. My girls and myself in-toe naturally, one girl also has super flexy hips that loosen her stability, but with muscular stretches and exercise-- it has gotten a lot better. We do ortho consult every few years just to check-in to make sure that all is well per our pediatrician. HE also suggested certain types/brands of shoe for our particular arches & feet. We all wear sneaker that are supportive...but that is the extent of orthos involvement at this time.
 
Trust your instincts and absolutely ask questions of Drs you see. Also, EI is great--- they work with kids all day, everyday and really know the difference between 'standard' developmental concerns and things that may benefit from being addressed with specialists or therapies.

 

mama_dragon: At what age did you call EI for your sons?  I'm ready to do it now, but am sure my husband will hesitate saying they're too young, and want to take a "let's wait and see" approach.  I hearing from moms who have been involved with them so I  can share their experiences with him with the hopes of him not being so resistant to it.  
 

KCMichigan:  EI is difinitelt something I want to pursue.  Thank you for sharing such a detailed overview of your experiences with us.  When did you make that first call to EI?  As for the issue of IVH I will be calling their delivering hospital and their first pediatrician tomorrow to request his records.  It really bothers me that there was no follow up to see if it had self-resolved, as the physician at the hospital told me it probably would.  Now, his soft spot has closed, and from my understanding that rules out the possibility of doing an ultrasound.  I guess it would take an MRI now?  Not sure if the orthopedic consult will result in a referral to a Neurologist.  I don't think I'd be opposed to it at this point.  Their first pediatrician really scared me by just nonchalantly mentioning at the end of their 9 month visit, which I went to alone, that "[Bug] might have CP".  I was infuriated.  Yes, that's right.  He didn't even say Cerebral Palsy-- just dropped on me Oh, he might have CP, like it was a common cold or something.  Had it not been my own background knowledge from my husband's history, I wouldn't have had a clue what he was talking about.  He was careful to say that it was not a "formal diagnosis", but an observation of something "we'd have to watch".  What's more, he never supported his reasoning except to say Bug had some heel-cord tightness and that he had been "flagged" in NICU.  This baffled me, since at discharge, no one communicated with us any differences, or causes of concern for him.  I know my husband and I would be beyond supportive of our baby, and do anything in the world for him.  I just want answers.  I want to be able to either rule-out CP, or start working with OT and any other specialists he may need.  I am so glad to hear about how well your girls have done.  Maybe EI had a lot to do with that.  That and your own instincts and actions no doubt.  Thank you again for all that you've shared.  I hope to know more soon.  

 

EI came to my house when the boys were infants-torticolis for one, and lack of rolling back to belly for the other(he finally did that on his first birthday!). They came back again around 15-18 months for lack of speech. They tested at a 7/8 month old level for expressive(they understood everything we said), and tested out at age level within 6 months. Great great resource.

The earlier you get them in(general), the better off you are.

 

I called EI when they were 14 months (12 months adjusted) the first time.  We had my speech delay child evaluated again at 18 months for speech. 
 
It is never to early to call EI.  In fact the sooner the better.  Early intervention has been proven (via studies) to be very beneficial for kids future development.   

 

We had EI services start at 3 months (so 1month adjusted age) due to the high risk and complications my girlies had. They got therapies through EI starting at 9 months (7 adjusted) but an EI consult came every month from 3 months to 9 months to  give advice/support- they also monitored delays and then started  in-house therapies as soon as they qualified. We also worked through a community program called 'Parents As Teachers' (PAT)---it was for ALL children 0-5 in our city. Some areas have it and some do not, it is grant funded- you can google it to see if it is in your area. PAT came and did screening from birth as well-- and also provided support. We were lucky that we had an awesome supportive community with strong programs and active EI. 
 
Our NICU sent me home with EI numbers and information. It was a lot of information, but really the earlier the better and the more support (they will not get more than they qualify for!) the better from the start-- we had therapies often from 9 months to age 4 and really they dont remember (I DO!) but it made a HUGE difference.
 
The Ortho might do Xrays (our did) to check for hip dysplasia and/or bone development. A 'bow' in one of my girls legs worked itself out without intervention when she started walking more (she was a late walker). Muscle tone imbalances & tendon tightness/looseness (labeled mild CP) were addressed through neurology and PT, orth was monitoring bone & skeletal development!
 
Also keep in mind the, like autism, CP has such a wide wide wide variance. People tend to think severe delays when they hear CP. But really mild  CP may or may not be noticed by anyone outside family and DR for the most part. Drs also have patients daily that have CP, autism, and a wide wide variety of other things. If they are not tossing out red flags, I would try not to panic. They also may not want to alarm you and/or want to 'wait and see' based on your boys prematurity and medical history. Somethings *do* work themselves out and others need therapies to remediate and/or provide supports (taping, bracing, etc). Be proactive in getting an eval and then follow-up, but most Drs will absolutely let you know if they think a consult with a specialist is needed.
 
We have (and had) great interactions with Dr at our local Childrens Hospital. Nothing but great things...we have only had one Dr we did not like and then we simply found another.
 
Get your records, ask questions, and call EI. 

 

We go Monday to see an Orthopedic Dr.  Please keep lil' man in your prayers.  Or as our eleven year old says, "Fingers, toes and eyes crossed!"    Again, I can't thank you all enough for how quickly you all responded to this, and all your insight and encouragement you've given.  I hope everyone has a great Valentine's weekend.  

 

I will be saying prayers and keep us posted with how the appointment goes!  Happy Valentine's Day to you and your family!

 

Hi all.  It's been a week since we've taken Bug to the Orthopedic doctor.  Sadly, we seemed to have come away with more questions than answers.  We were not at all impressed with the doctor.  Bug had seen her before when he was nearly 4 months old, and his first pediatrician thought he suffered from some kind of congenital hip defect.  Then, and with this most recent visit, she proved to have absolutely no bedside manner.  I am astonished that she works with children.  Both visits she was very arrogant, and showed no attention to detail.  She ordered no new x-rays (he only had ones done of his hips when he was of his pelvic area - no lower legs), and after watching him walk for literally only 10 seconds said, "I think he has tibial torsion".  She also had not reviewed his chart, nor did she ask us anything about his medical history, or any other concerns we had.  She told us that it would self-correct, and how practically no one goes with braces today as it's considered to be just as effective to let them outgrow it.  We brought our concerns up about him constantly falling - and sometimes how so very hard it seems to be.  She just glossed over this fact, and said he would be clumsy for a long time, and that it would hurt us more than him.  My husband asked about PT, to which she replied, "that would be a joke."  She told us to put him in soccer as early as age 4 since it forces players to turn their toes out and kick with the inside of their foot.  
 
Needless to say, we got right on the phone with Bug's new Ped whom we love.  She told us she understood our frustration, and would work on referring us to UVA medical's pediatric orthopedic unit.  We're waiting to hear back on that.  Our winter weather this past week has kept her out of the office.  
 
I've also been calling our county's Early Intervention office since last Monday with no result.  I haven't received the first call back yet.  I'd really like to hear back from them, and have them evaluate Bug.  He's very smart, and is up on his milestones.  He's lacking somewhat in his language skills being 18 months and not having any meaningful words other than "dada" and "mama".  Really, I just want to rule-out any chance that he has Cerebral Palsy, as his first pediatrician speculated.  
 
Reading journal articles from John's Hopkins on tibial torsion, I just want someone to look at his one affected leg, and be able to tell us the degree at which it's twisted.  And I want them to push, and look beyond just his leg, taking into account his birth circumstances, medical history, and development thus far to make sure it's just tibial torsion, and not a touch of something else.  Feeling frustrated, but looking forward to seeing a new Doctor.  In the meantime, I think I'm going to start documenting just how many times a day I see him fall. 

 

I think that is a good idea to document how many times he falls during a day and anything else you think might be important.  I am sorry the doctor was such a disappointment and did not seem to do such a hot job evaluating Bug.  I am really surprised the doctor would not recommend PT and said to do soccer.  I would think the other way around would make sense.
I am glad your pediatrician is working with you to find someone else and I hope you hear from EI soon and get an appointment with the new doctor soon.  Please keep us posted.

 

Sorry you had a doctor with bad bedside manner.  It can be so frustrating when a doctor doesn't seem to hear what we say or look at the whole picture.  If it is indeed tibial torsion (my kiddo has) the doctor is correct and the only treatment is time.  Physical therapy/braces will not treat the condition.  However your son might qualify for PT for other gross motor delays.  I hope you hear back from EI soon.  They can do a complete developmental screening.  If he needs PT/OT or speech they will provide it to him.  Also glad you are getting a second opinion. 

 

I hope your second opinion goes well and I am sorry you got a Dr with poor bedside manner.
 
DId she check tone, reflexes, and muscular control? Those all would correlate more to CP than 'intoeing'. Too low or too high of any tone, reflexes, and muscular control would be flags that may be addressed with PT, taping, etc.
 
I would also record falls, but most Dr may look at an 18 month old and be OK with falls since some 18 mon olds are *just* learning to walk and still considered developmentally on track.
 
Absolutely look into the speech concerns if he only has 2 words at 18 months. Hopefully Early Intervention will be more helpful in giving you some tools and ideas to help address your concerns.

 

Thanks!  I am so hopeful for the second opinion, as well as Early Intervention.  I finally got in touch with them yesterday, and talked with someone who just totally "got it".  I have the most confidence now in Bug's care that I've had since he was 3 months and his doctor first began raising concerns, but not seeming to diagnose or address any.  The person with EI that I spoke with over the phone asked soooo many good questions for his intake, and was just beyond thorough.  She said that in the coming week we'll be getting a call to schedule Bug's first in-home evaluation.  I couldn't be more excited!  For the first time I really feel like we're going in the right direction for him.  Thank you to all of you moms who have directed us to this incredible resource.  I could have cried yesterday I was so excited for Bug.  I feel like we're on the cusp of finally getting him the help he needs. I truly can not thank you all enough. Friends have listened to our concerns, but the advice, and experiences you all have shared with me have been invaluable.  
 
As for the Orthopedic Dr... no she didn't check for any tone, reflexes, or muscle control that I could tell.  They were certainly never discussed.  His first pediatrician had said he thought bug may have CP, but said it was not a diagnosis based simply on the fact that he was toe-walking and that he detected some heel cord tightness.  I'm so excited to work with the Orthopedic Doctors at University of Virginia's Pediatric Hospital.  One of them in particular, a Dr. Abel specializes in his treatment and study of children with CP.  I've read a lot about him and have heard so many wonderful things.  

 

That doctor was dismissive of your concerns which makes me angry for you.

Yay for EI! They were great for us and so reassuring.

 

Everything's scheduled  We will be taking Bug on 3/10 to see the new Orthopedic specialist, and then EI will be coming in the morning of the 16th to do his evaluation.  I can not wait to see what we find out from both.  I'll share what we learn from both as soon as each are over.  Hearing back from you ladies has helped so incredibly much!

 

Update on Bug: So our 2nd opinion was well worth it as far as the Ortho!  Bug has been dx'd with Tibial Torsion of 20 degrees inward in his left leg and the Dr. also ruled out cerebral palsy, saying he saw nothing that made him think that at all.  Talk about being fantastically excited! I can't tell you all how much more thorough this new doc was, and just how incredibly good he was with our Bug.  So worth it!! The doc told us his tibia should un-twist on its own as he grows, without needing braces, or any specific kind of shoe or anything else.  He also told us the lighter the shoe, the better, and that anything with a heavy-bottomed, rubber sole could make it appear worse.  He also said no high-tops, and barefoot when possible.  We're also supposed to try and break him of the habit of W-sitting in that left leg, but otherwise he didn't recommend any PT or particular stretches.  
 
On our way home, the DH and I were talking about how relieved we were.  I was so glad to hear that doc rule out CP since I've been so scared about it since they were 9mos and their first pediatrician so flippantly told me Bug "probably has a touch of CP", citing heel-cord tightness.  That addressed our concerns over Bug's physical difficulties we've seen, but there was more on our hearts.  The happiness was somewhat short-lived.  DH is so good with our children, but he's a man of few words.  Articulating his feelings, or concerns just isn't something he does well, if at all.  So while I'm sitting there riding shotgun, happy as a lark about what its not, he asks me when EI is coming.  I told him (today) and he just nodded his head solemnly.  I asked him why he asked.  In a way, needing him to validate my own concerns.  He said, "there's just something more there".  He went onto say that in a way he was glad that the doctor didn't find anything majorly wrong with our Bug, but that he still had a lot of unanswered questions for some of his other behaviors or tendencies if it wasn't physical.  I asked him what he meant by "more there", and he told me, there was, "just something special about him."  He said it not as a critique, but so gingerly, and with so much love that I knew what he meant.  
 
We hadn't said the A word aloud to each other until today, over the phone, before I made this post (EI just left this am at 11:20).  I'll preface how the EI visit went by saying this:  I work at a local elementary school, and I had been talking to a good friend of mine who is in SPED about Bug, and his appointments and what all.  Just this past week, she asked me flat-out what my concerns were about him.  I told her, and she just flat out asked me had I thought about Autism.  I told her I had, and that it terrified me, but that no one - pediatrician, friends, family or otherwise had mentioned it.  It's been the big, scary, pink elephant in our lives for a while now, and we had kind of triaged his sypmtoms or rather our concerns for him, and we started with his leg since it affects how he walks. I asked my friend what she thought, and she asked me if I really wanted her opinion.  Having worked in SPED for years, being my friend, having met Bug, and hearing about him all the time I told her I did.  And she told me yes- that it had crossed her mind that he may be on the spectum.  She said that I have told her several things over the past year that kind of raised a red-flag for her.  I needed to hear that.  I didn't cry but a bit (surprisingly).  We talked for a while, and she's been a great support since.  I didn't tell DH what my friend, Kate had said.  I kept it to myself, and decided we'd cross that bridge if and when we came to if after EI visited.
 
Well, that happened today.  Maybe 30-45 minutes into Bug's evaluation, the worker was watching Bug line some of his toys up (a ride-on toy, racetrack, and push lawnmower) across our kitchen floor, and she asked me, "does that concern you?"  (We'd already discussed that he often lines things up... toys... food...) and she shook her head and made some more notes.  Then she asked me a few more questions about his play, and preoccupations.  I knew where it was going.  Then she asked if I'd considered an Autism screening.  I told her that I personally had thought about it, but that DH and I hadn't discussed it.  She told me the office local to us that does it, if we wanted to take him.  At the end of her visit, she told me she couldn't say for sure yet whether or not he'd qualify for services, but that she'd look everything over with their multi-disciplinary team (she and a co-worker) and get back with us.  She also said that regardless of whether he qualifies or not, they will give us resources, and help to point us in the right directions.... I guess a Neuro consult, and to have him screened.  
 
Just feeling kind of shell-shocked right now.  I don't really know how to feel.  Validated in a way, yes, but then again, there is still so much that is unknown.  Maybe I'm wanting to bypass being terrified, or emotional, and just skip to "do-something" mode.... but I'm just sitting here.  I wonder if Bug is..., where exactly is he/ will he be on the spectrum?  What will his life be like?   If he is, what will Cheeks' life be like?  Will they still want to and be able to play together?  How will it impact their twin relationship?  Maybe I'm getting ahead of myself.  I'm just... blah.  I don't even know right now.  I want to be the best and most amazing mom I can be to both of them right now, and always.  And I'm just concerned for Bug, and Cheeks too.  We've been focusing so much on helping Bug, I don't want Cheeks to not feel our love or attention too.
 
I guess I'm going to try and get in touch with his Pediatrician today and bring her up to speed.  She and I have been talking Neuro lately.  When DH called after EI left I told him the worker had suggested the screening.  I asked him if he'd wondered about that before, or considered Autism.  He said he had, but he didn't think anyone could dx Bug with it until he was older.  He said he just didn't want to keep taking him to doctors and waiting for someone to tell us what's wrong with him.  I told him I don't either, but I want to be able to help Bug with whatever we can, as early as we can.  I just hope he'll be on board with seeing a Neuro since Bug also has tremors.  I don't call them seizures, because I don't know if that's what they are, but they're happening more now, and often back-to-back when they do.  I guess that's where we go next.  Aaaand I've written a friggen' book here.  Sorry ladies.  I'm admittedly long-winded.  Gimme what ya got on this.  These are certainly unchartered waters for us.  

 

I'm glad that you're starting to get some answers, even if they are probably difficult answers.
 
As to what his future life will be like, only time will tell.  The earlier the help, the better.  I just wanted to tell you that my dh works as a software engineer making a very good living.  At least one of his co-workers has pretty severe tics.  My dh also works with quite a few people that would now be diagnosed as on the autism spectrum. And they are all very, very good at their jobs making a very nice living.  If you want the perspective of a grown-up with autism, you might check out Temple Grandes (sp?) books.  She is a very articulate adult who does a good job of describing how she sees the world with her autism.  
 
I work in sped. I can tell you that you are definitely helping your little boy by getting help now and dealing with that elephant in the room.  Probably the most frustrating part of my job is dealing with parents who don't want to hear the autism word. 
 
Marissa

 

I have to agree with Marissa. The fact that you are open to getting Bug the help he needs now is going to help him greatly in the future.   I have two friends with sons on the spectrum and both of those boys are doing well.  They do have their challenges but they are at or above grade level and have had a lot of support in their respective schools to help them out when needed.  
 
You are doing the right thing , Mama---for Bug and Cheeks :hug:

 

:grouphug:
 
You are doing the right thing.  Getting answers and being open to everything. 

 

I read all the message and hoping the home evalution goes well? I hope you guys have a good news to lighten the days

 

Thanks Xandrae.  The worker who cam from Early Intervention was truly great.  As it turns out, Bug didn't qualify for services right now.  She told me over the phone however, to reapply if we still have concerns.  She said it was hard because their funding didn't allow them to serve kids they could "see on the horizon".  I've been trying to look at it as a blessing of sorts.  Since then, Bug has really shown us that he understands more and more words.  His favorite animal is a duck, and he is constantly quacking.  He does say, "dada" meaningfully for DH, and will point to his older 11 year old brother when asked, "Where is your brother?"  He can point to cats, dogs, horses, tractors, truck, the mouse in Goodnight Moon, and several other things.  He'll also shut a drawer when I ask him to, once he's opened it and is getting into things I'd rather he not, lol.  He's still not saying much.  He does have noises, but seems to be having a hard time forming words.  
 
Also since the visit, I spoke with his ped who is beyond supportive.  She said there was no need to take him to a local Autism center to have him screened. She told us that that's a normal element that they integrate into his 18 month milestone appointment.  We're about two months behind on those due to a lapse in our insurance, but we'll go the first week in May.  I'm eager to see what she says.  Some days I worry about it, and others I don't.  As for the tremors, I've worked hard to keep a log of them.  Our ped was also supposed to have given us a Neuro referral for him, but we have yet to hear back from the office on any scheduled appointment for him.  
 
Fingers, toes and eyes crossed for our little Bug.  Thank you for keeping him in your thoughts <3 

 

An Update on Bug    
We have a diagnosis!
 
Our boys have grown so much since I wrote last.  Both of our guys are still slow talking but from what I continue to hear, that's pretty normal for boys in general - not just twins or preemies.  Oddly enough, both Cheeks and Bug are fascinated with the alphabet and can say and recognize multiple letters by sound and by sight.  Thanks, Super Why! Cheeks is fluent in Swahili while Bug has continued to make more progress with his receptive communication.  He can also say as many as 8 different animal noises when we ask him what a particular animal says.  DH frequently tells them, "TALK" to which I remind him that once they're both yammering away, talking our ears off he will miss these days lol.
 
Bug still experiences his tremor spells, but not with the same frequency thankfully.  We took he and Cheeks to their next milestone visit back in May, where our ped agreed that Bug should have an autism evaluation at a local center after visiting a neuro.  She gave us a referral for him to see a neuro (although we experienced a few scheduling hiccups) and DH and I took him two weeks ago before we went on vacation.  
 
I was a little apprehensive when I researched Bug's neuro to find that he'd only been practicing for a year, but my mind was immediately eased when my husband and I, Bug and his older brother (11yo) met him the other week.  The Dr. was incredibly good with Bug, and would get on his level.  Much of his assessment seemed like play and Bug warmed up to the doctor surprisingly well, given he usually is very apprehensive f not downright fearful of strangers.  I had emailed the doctor several videos of Bug's tremors ahead of time which proved to be very helpful.  At the end of his assessment, he said he thought he had an idea of what we had been dealing with, and now was quite sure.  He told us that Bug is experiencing what's called stereotypy.  This can be a series of repetitive movements a child exhibits with no real purpose.  I immediately wondered, "Is that another word for 'stimming'?"  It appears it can be.  The doctor went on to say that this behavior can be observed in children both with and without autism.  As he did, I watched our 11 year old wince. It's been hard enough for my husband and I to talk about ourselves, let alone his big brother.  He's very good with both of the boys, but when Bug is having on of his days, or a tremoring episode, I've urged his older brother to have patience and understanding with him.  He's a very smart, perceptive child, and I've often wondered if he wonders about Bug as we do.  The doctor then stated that from his personal evaluation of Bug that day, he didn't believe he had autism because of how well he had interacted socially.  The doctor also told us that he heard our concerns (the meltdowns, the sensitivity to noise, and some other behaviors and reactions) and said that we would indeed need to follow up on our concerns as Bug gets older, and approaches school age. The doctor speculated that if we later find out that Bug is on the spectrum, that he expects he will he on the very high operating end of it.  That has given us hope.  
 
I am glad we finally have a diagnosis for these scary tremor episodes (thank God, not seizures), and for his gait (tibial torsion - not related).  I'm still grappling with the notion that I may not fully know or understand my child as well as I like until he is "of school age" though.  On the one hand, I am glad to know that he has nothing that is so evident, or glaringly obvious due to severity, yet I still want to bound into "help mode" and give my baby boy every advantage I can.  To some degree, I still feel as though I'm in limbo although I feel somewhat more content.  Anyone else have a spell like this?  Waiting?  

 

Thank you for the update and I can only imagine that the feeling of "waiting" is probably natural with what you have been through with Bug lately, kind of like a feeling of what could happen next...waiting for improvement...or anything.  :hug:

 

EI Round 2 & Formal Autism Screening
More Developments and Changes
 
The boys have turned two since I wrote last.  It's been a wonderful two years, but not without its hard times.  In the weeks before and since turning two, our Bug has undergone some more changes and his sensitivities and behaviors have ramped up in really big ways.  He's stimming in greater variety and frequwncy now, and is using fewer and fewer words. Words he once had.  That's pretty scary.  His behavior and emotions are so intense and all over the place at times.  I feel so bad for our little guy, because he seems like an anxious mess a lot of the time, even though he's got the most stable schedule and routine I know how to provide. 
 
So the hub and I called in EI again, and I'm pleased as punch to say that he and Cheeks both qualified for services this time!  Bug and Cheeks will both start receiving speech therapy shortly, and Big will also receive OT.
 
Tomorrow we're also going to our local pediatric developmental clinic to have him formally screened for ASD.  We had several "red flags" from the questions they ask at the 18 month visit, combined with some of our existing concerns and the change in his behavior we've accepted that we need to act.  I'm glad tomorrow is coming, but at the same time, I am so terribly nervous.  We're taking both boys, although Bug is the only one with the formal referral.  My mother in law who has gone back and forth on even using the words ASD recently apologized to me for her lack of support in the face of my mounting concerns.  She shared with me that one morning she couldn't sleep, and woke up at 4am and found herself on the Easter Seals website.  There, she said she read a list of signs of autism and she told me she felt like Bug certainly is, but that Cheeks may be too.  I wasn't ready to hear that, but my fear all along was that I would overlook our Cheeks since his brother's concerns were more glaring.  I hope we get some answers tomorrow, so we can keep working towards getting both our boys the help they need.
 
Any mama's out there that can shed some light on the process of getting an ASD diagnosis?  Steps for evaluation?  Next steps?  Services?  
 
Thanks, all. 

 

I don't have any advice, but I wanted to send you many hugs. Regardless of a diagnosis, they are still your Bugs and Cheeks and special in every single way. And you are doing the absolute best for them by having them evaluated. The younger they start therapy, provided there is a formal diagnosis, the better off they will be. Good luck tomorrow and know I'll be thinking of all of you. :hug:

 

I have to second Meaghan here.  I don't have experience in the process of getting a ASD diagnosis and I hope someone who has been through the process will stop in here.  I just wanted to send hugs your way.  You are doing the best for them by having them evaluated, the sooner they get the services they need (if they need them) the better off they will be.  :hug:
Please keep us posted.

 

Good luck! I will follow this also for updates.

 

Ladies, I am heartbroken.  We took the boys at 8 this morning.  It was a thorough visit, and there were two doctors -- one whom spoke with my husband and I and one who played with the boys while we spoke. I am so heartbroken.  At the end of our visit, the primary doctor told us she saw the signs in Bug that concerned us, and that she thought Autism as well, but that she wanted him to undergo ADOS before formally diagnosing him, saying it was such a "heavy diagnosis.  I told her I appreciated that.  Which I do.  ASD is a big deal, and I don't want my child unfairly labeled as having it if he truly doesn't.  But I wasn't prepared for what happened next.  Then she told us that Cheeks actually had more observable qualities than Bug.  She said. that she felt able to tell us with certainty that he is ASD.  Both boys will still undergo ADOS in early January before an official diagnosis is made on paper.  
 
I had prepared myself for one, I've known it in my heart and my gut for so long.  But now both of my sons?  My heart is just broken.