Gross Motor Delay Causes- Suggestions please!!

wither16 · May 2013

Hey ladies- it's been a bit since I posted anything. We have been chugging along with DS in his helmet for the plagio and working with PT and a chiro for his torticollis. He turns one year this month, and we have some Dr appts coming up to go over his progress/therapy etc.

Up til now, I have always been able to go to his appts with a basic idea of what to expect diagnosis wise. I knew at 2 months he had torticollis and basically just needed the Dr to confirm. However, I am at a loss for what to expect now.

DS is at about a 7 month development level (except for eating/drinking which is fine). We have been on a wait list for an OT eval for about 3 months. But the PT doesn't seem to have any idea as to the "why" for the delay. He is able to bear weight on his legs, and he has rolled back to front a handful of times. He finally started to sit independently at 9.5 months. Still no pushing up on arms etc. Fine motor skill is about 50/50- some things he is great at, others he makes no attempt. Language, probably closer to a 9 month skill level- says one word (dada), babbles sometimes, not frequently.

PT says that at this point, the torticollis and the helmet; with the combo of macro and plagiocephaly should NOT be the cause of these issues. And his only diagnosed low muscle tone; up til now has just been in the head/neck region. His previous u/s on his brain came back with no hydrocephaly- only a little extra axial flui (I believe that's right) with no cause for concern on that. He has also had a neck X-ray to check for issues on this upper spine- Both Dr and Chiropractor agree it showed normal. Chiro suspects hereditary scoliosis- but not sure how much stock my Dr will put in that.

I would like to go in with some sort of questions about what tests or specialists I should be asking for. Mainly bc we are AD military and we only have a GP- we do not have a pediatrician, so I really have to do this leg work myself or have some suggestions to offer and referrals to ask for.

Any insight/suggestions, anything would be more helpful than what I have right now, which is nothing. Thanks in advance for the help ladies!

ally81698 · May 2013

You may want to speak with a developmental pediatrician for some guidance or perhaps a pediatric neurologist? Delays can be due to hundreds of reasons, from genetic to brain injury...

Good luck!

KelleyBean · May 2013

I would also suggest a developmental ped. The symptoms you are describing could be a multitude of things. Are there any near your area?

wither16 · May 2013

We do see one specialist who would probably fall into that category (I am not sure of her technical title). She is the Dr at Children's that follows his PT and has ordered tests in the past.

Unfortunately, we are AD and we are not allowed to have a pediatrician (this base medical care is a joke where we are). So I have to go to our GP Dr who cares for us and ask for referrals/tests and what not so that they will be approved. I'm just not sure where I should be headed at this point, or what to ask for.

(For those that are not familiar with how military Drs work- I basically would have to go to the GP to get a referreal to the specialist- then see the specialist, see what they want to do. Then make an another appt with our base Dr, and explain to them. Wait for referral- then make appt with whatever Dr/Test they want after that. I have found it works best for us if I go in with the requests ready in hand)

MaxandRuby · May 2013

wither16:
We do see one specialist who would probably fall into that category (I am not sure of her technical title). She is the Dr at Children's that follows his PT and has ordered tests in the past.
Unfortunately, we are AD and we are not allowed to have a pediatrician (this base medical care is a joke where we are). So I have to go to our GP Dr who cares for us and ask for referrals/tests and what not so that they will be approved. I'm just not sure where I should be headed at this point, or what to ask for.
(For those that are not familiar with how military Drs work- I basically would have to go to the GP to get a referreal to the specialist- then see the specialist, see what they want to do. Then make an another appt with our base Dr, and explain to them. Wait for referral- then make appt with whatever Dr/Test they want after that. I have found it works best for us if I go in with the requests ready in hand)

I am an AD military spouse so I understand TriCare. For those that aren't aware, our insurance is basically an HMO (if on Prime), and a PPO (if on Standard). Where are you located? Where I am at, we are seen at a Army clinic in the town I live in (I don't go to base for anything unless a referral for something specific; I do not live on base). There is no pedi at that clinic so we also see a GP - I've had no issues with this though. Are you seen at a medical clinic on base or a community based Army clinic? If your doctor is on base, I have no idea why you wouldn't be able to change your PCM to a pediatrician from the general practitioner.

I would ask your child's doctor for a referral to a developmental pediatrician and a pediatric neurologist. We actually have a developmental pedi on staff at the base hospital - do you (you'd still have to get a referral for them if you do)? I like to go on the TriCare website to see their provider list and then I start my research from there. At the appointment I bring the contact info for the referral with me (name, address, phone, fax) which I feels up the chance my referral comes through for the doctor I want vs insurance randomly choosing a provider.

MaxandRuby · May 2013

BTW - are the therapists EI or private? If EI, I am curious as to why the 3mos wait. DS2 had EI and private therapies going at the same time and private was covered (and at this point still is) by TriCare.

wither16 · May 2013

Our base is set up very oddly to be honest- we have 2 clinics. Both VERY small (2 GP providers at each location plus a Peds Dr at the main clinic). Due to DH's job, we are only allowed to see one Dr at a specific clinic. I know, confusing. Heck, one time, the Flight Med Dr is who did my child's 9 month well baby check. Seriously. The Flight Med Dr. SMH...

I have asked on 4 separate occasions to switch our child's PCM to the base Pediatrician, he is at the main clinic. Each time, I have been denied by Tricare (for various reasons) Since our TriWest contract just switched May 1, I am going to attempt again in the near future and hope I get a different answer. For the most part, our GP is great, he just has no clue when it comes to what we need for DS. It's not his fault, he doesn't specialize in babies- LOL.

I plan on exploring the EI- however, I was told that in CO I couldn't enroll til age 1? (possibly incorrect info?) Are you utilizing the EFMP Max and Ruby? I am wondering if it would be beneficial to us to enroll. We talked about it, but at the time, only to try and get the helmet paid for, which of course, Tricare would not. Currently, all therapy is what is covered by Tricare. We are, of course OOP for the chiropractic therapy. I think a neuro at the Children's hospital might be a good step. I am also going to ask for a referral to a Peds Ophthalmologist to get his sight checked out.

Thanks for the good info. I'm lucky to have Children's Hospital here- they have pretty everything we could need and they are Tricare contracted, so at least I can keep all his specialists in one spot.

MaxandRuby · May 2013

wither16:
Our base is set up very oddly to be honest- we have 2 clinics. Both VERY small (2 GP providers at each location plus a Peds Dr at the main clinic). Due to DH's job, we are only allowed to see one Dr at a specific clinic. I know, confusing. Heck, one time, the Flight Med Dr is who did my child's 9 month well baby check. Seriously. The Flight Med Dr. SMH...
I have asked on 4 separate occasions to switch our child's PCM to the base Pediatrician, he is at the main clinic. Each time, I have been denied by Tricare (for various reasons) Since our TriWest contract just switched May 1, I am going to attempt again in the near future and hope I get a different answer. For the most part, our GP is great, he just has no clue when it comes to what we need for DS. It's not his fault, he doesn't specialize in babies- LOL.
I plan on exploring the EI- however, I was told that in CO I couldn't enroll til age 1? (possibly incorrect info?) Are you utilizing the EFMP Max and Ruby? I am wondering if it would be beneficial to us to enroll. We talked about it, but at the time, only to try and get the helmet paid for, which of course, Tricare would not. Currently, all therapy is what is covered by Tricare. We are, of course OOP for the chiropractic therapy. I think a neuro at the Children's hospital might be a good step. I am also going to ask for a referral to a Peds Ophthalmologist to get his sight checked out.
Thanks for the good info. I'm lucky to have Children's Hospital here- they have pretty everything we could need and they are Tricare contracted, so at least I can keep all his specialists in one spot.

Yes, DS2 is and EFM. I'm going to PM you my email. Given what you stated I am assuming you are not at Ft. Carson because they do have pediatricians and your son wouldn't have been seen by a flight surgeon for any reason. I'll help you out with what I can but I'd definitely go in with contact info for a developmental ped and pedi neuro. I'll ask my friend who was at Ft. Carson who the developmental ped she saw for her kids up in Denver.

Jenny952 · May 2013

I would echo the pp in getting to a specialist. I would say try to get to a pediatric neurosurgeon vs neurologist. What you're describing of having plagio and torticollis, it makes me worried about his cerebellum. The cerebellum plays a part with some gross motor skills. I know you're not supposed to "google diagnose" but in your case you might want to try. And this may be sacrelig to the bump gods, but baby.center.com has a ton of groups that are very specific and there might be a group over there that sounds like what your DS has. have you done any genetic testing on him to rule that out?

I should note that my DD has spina bifida, hydrocephalus and chiari II malformation, which is a disorder of the cerebellum. Good luck! I hope you're able to get some answers on your little guy!

wither16 · May 2013

THANK YOU! I will be on the lookout- you are correct. Technically our MTF is Ft Carson, and our clinic is a "satellite". Ft Carson is about 1.5 hours from us. Would love to know who she saw around these parts. I don't have too much to go off since I am not from here!

Jenny952 · May 2013

PS - I just reread your post about getting an x-ray to check the brain/upper spine, and I would push hard for an MRI. It gives a much clearer picture of what's going on in your little guy's head. My DD has head ultrasounds and CT scans before her MRI... so much greater detail on the MRI to see exactly what's going on.

wither16 · May 2013

Jenny952:
I would echo the pp in getting to a specialist. I would say try to get to a pediatric neurosurgeon vs neurologist. What you're describing of having plagio and torticollis, it makes me worried about his cerebellum. The cerebellum plays a part with some gross motor skills. I know you're not supposed to "google diagnose" but in your case you might want to try. And this may be sacrelig to the bump gods, but baby.center.com has a ton of groups that are very specific and there might be a group over there that sounds like what your DS has. have you done any genetic testing on him to rule that out?

I should note that my DD has spina bifida, hydrocephalus and chiari II malformation, which is a disorder of the cerebellum. Good luck! I hope you're able to get some answers on your little guy!

Great suggestions- thank you so much!!! In our case, being prepared with any sort of information is super helpful. I actually work in medical supply, so I am pretty familiar with SB- we just had our Walk N Roll last week! Love it!

wither16 · May 2013

Jenny952:
I would echo the pp in getting to a specialist. I would say try to get to a pediatric neurosurgeon vs neurologist. What you're describing of having plagio and torticollis, it makes me worried about his cerebellum. The cerebellum plays a part with some gross motor skills. I know you're not supposed to "google diagnose" but in your case you might want to try. And this may be sacrelig to the bump gods, but baby.center.com has a ton of groups that are very specific and there might be a group over there that sounds like what your DS has. have you done any genetic testing on him to rule that out?

I should note that my DD has spina bifida, hydrocephalus and chiari II malformation, which is a disorder of the cerebellum. Good luck! I hope you're able to get some answers on your little guy!

We have not done any testing since birth. We did do some testing in utero. I am adopted and had no idea on family history. DH has a sister with CP and also we were increased risk due to IVF. Nothing was noted out of the ordinary at that time, but it wasn't all inclusive testing either.

Assembly_Reqd · May 2013

Based on what you have posted I would get a brain MRI too.

You may also want to throw in a microarray genetics test which will look for chromosomal deletions or duplications. This may be something the pedi can just order, but maybe tri-care will want a gate-keeper for that testing since it is expensive. Prenatal testing to look for trisomies, etc is not accurate enough. They only count the chromosomes and can miss smaller deletions/duplictions.

I am glad you are going to the ophthalmologist. It is good to check his vision as well as make sure that the torticollis not vision related. A good pedi ophthalmologist will also be able to see if there are any physical makers in the eyes or eye movements that may give you a clue to what is going on in the brain. You may get an MRI referral out of that visit....

The not babbling part would make me want check the hearing. The newborn hearing screening is just that, a screening. Statistically, 3/1000 children are born with hearing loss, by age 6 that statistic goes up to 7/1000. Early intervention will want to rule out hearing loss anyway before offering speech therapy, so you might at well get the hearing tested too.

Take advantage of Early Intervention. Your tax dollars are paying for it. Let them decide if he qualifies or not, and even if he doesn't qualify the first time and the delays continue, ask again.

Sorry to bog you down with recommendations! I would also start a health binder and get copies of all tests and office visit notes, just in case you have to go civilian for care in the future. Good Luck!

MaxandRuby · May 2013

wither16:
THANK YOU! I will be on the lookout- you are correct. Technically our MTF is Ft Carson, and our clinic is a "satellite". Ft Carson is about 1.5 hours from us. Would love to know who she saw around these parts. I don't have too much to go off since I am not from here!

I've got contact info for you for Denver. I'll PM it to you. :-)

wither16 · May 2013

Assembly_Reqd:
Based on what you have posted I would get a brain MRI too.
You may also want to throw in a microarray genetics test which will look for chromosomal deletions or duplications. This may be something the pedi can just order, but maybe tri-care will want a gate-keeper for that testing since it is expensive. Prenatal testing to look for trisomies, etc is not accurate enough. They only count the chromosomes and can miss smaller deletions/duplictions.
I am glad you are going to the ophthalmologist. It is good to check his vision as well as make sure that the torticollis not vision related. A good pedi ophthalmologist will also be able to see if there are any physical makers in the eyes or eye movements that may give you a clue to what is going on in the brain. You may get an MRI referral out of that visit....
The not babbling part would make me want check the hearing. The newborn hearing screening is just that, a screening. Statistically, 3/1000 children are born with hearing loss, by age 6 that statistic goes up to 7/1000. Early intervention will want to rule out hearing loss anyway before offering speech therapy, so you might at well get the hearing tested too.
Take advantage of Early Intervention. Your tax dollars are paying for it. Let them decide if he qualifies or not, and even if he doesn't qualify the first time and the delays continue, ask again.
Sorry to bog you down with recommendations! I would also start a health binder and get copies of all tests and office visit notes, just in case you have to go civilian for care in the future. Good Luck!

Thank you so much- super helpful. Our Appt is tomorrow.

Actually he failed his newborn hearing and we had to go to audiology a few weeks after birth. At the time, they attributed it to being late pre-term etc. However, and I am not an MD obivously, I have heard other moms discuss the hearing loss of their child with severe Tort. For example, if you look at his helmet, you can see how severely the ears have been shifted, so I do wonder if that accounts for the lack of babbling... who knows?

I am going in loaded with questions- thank you everyone for the advice!!

Assembly_Reqd · May 2013

Good luck tomorrow! I would ask the audiologist or your pedi exactly what hearing test was done. Sometimes, after a 'refer' on a newborn hearing screening they will retest the baby before you leave the hospital. Sometimes, the re-screen will happen a couple of weeks later at a clinic.

This screening is called an OAE otoacoustic emissions test. It is a series of clicks played into your baby's ear and is not the whole spectrum of frequencies, nor will it be able to tell you if your child has a progressive loss. If your child underwent an ABR (auditory brainstem response) test at the audiologist and passed that, I would feel much more comfortable. Since my child does have hearing loss, I would never accept an OAE test as a diagnostic test to rule out hearing loss based on my personal experiences.

Good Luck again!

wither16 · May 2013

Assembly_Reqd:
Good luck tomorrow! I would ask the audiologist or your pedi exactly what hearing test was done. Sometimes, after a 'refer' on a newborn hearing screening they will retest the baby before you leave the hospital. Sometimes, the re-screen will happen a couple of weeks later at a clinic.
This screening is called an OAE otoacoustic emissions test. It is a series of clicks played into your baby's ear and is not the whole spectrum of frequencies, nor will it be able to tell you if your child has a progressive loss. If your child underwent an ABR (auditory brainstem response) test at the audiologist and passed that, I would feel much more comfortable. Since my child does have hearing loss, I would never accept an OAE test as a diagnostic test to rule out hearing loss based on my personal experiences.
Good Luck again!

Thanks, we had an ok visit. One of those days where I am trying to keep taking it all and not drown over here. I mentioned hearing loss, when she heard he had been retested at 2 weeks old, she did not seem concerned. But- we still have our well baby check with our GP on base, as well as a referral to a development pediatrician (this will be the only pediatrician my baby has ever seen due to our situation with the base clinic). I plan on further addressing it there. She didn't seem TOO concerned about lack of babbling/language, but I think that is because everything is being overshadowed by the other issues. We also have to see a PED opthamologist- she suspects a palsy disorder. Another issue came up today in his spine xray- we are a bundle of fun over here!!

Anyways, I was thinking that we have our well baby check, as well as a scan to check his plagio progress, then these 2 new specialists, so I would find someone to go over the hearing with, LOL.

Is there anyway to determine which test he had (I mean, I can call the hospital and ask I'm sure). They did the thing where they hooked him up to stuff on his ears and what not? Not sure if that even helps.... HA!

Thanks so much for the advice, I am definitely putting it to good use as soon as we can.

Assembly_Reqd · May 2013

If you went back to the hospital for the followup then they probably did another OAE. You will probably have to either call and ask or fill out a medical records form to get the answer. An ABR is a lengthy test, so if he wasn't hooked up for at least 30-40 minutes or more it is unlikely they did an ABR.

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