not sure what to expect

[realmccoys]

Hi! I have a 4 1/2 year old boy who was recently diagnosed via x-ray with scoliosis...he was at 15 degrees...slight left pelvic tilt....thoracic...between T4 and L1....we have an appt. next wk with a ped. ortho....what should we expect? Anyone else have a 4 year old with scoliosis? Thanks, Dawn

[Carmell]

Hi Dawn,

My son is 11yrs old now. He was born with congenital scoliosis (we saw the scoli on ultrasound before he was born). There are lots of variables with scoliosis. Scoliosis in small children is rare, and you should have fairly extensive testing to find out if there is an underlying cause. A GOOD pediatric orthopedist will know the correct tests he will need to have done. Does he have any other medical conditions that would contribute to scoliosis? You are in good company. Please let us know how the visit with the ortho goes.

[realmccoys]

Thanks for the reply.....No, my son does not have any other symptoms of any other potential underlying problems. When he bends forward to touch his toes though, it seems to me that he has what almost feels like a muscular bump on the right side of his thoracic area...approx. where the curvature is....between his shoulder blades....not sure what that could be.....after reading online about the infrequency of scoliosis showing up in 4yr olds, I'm a bit concerned. Is he considered "infantile" or "juvenile"? We have an appt. with a ped. orthopedist on the 31st of this month....what tests should I push for? Dawn

[Carmell]

Hi Dawn,

When he bends over, does the bump look like this? http://www.iscoliosis.com/symptoms.html

The bump is likely because of the rotation of the spine - one side is rotated forward and the other back. Rotation is seen in nearly all scoliosis patients because the spine is so very 3-dimensional.

The classification of scoliosis depends on several things - does he have one or more vertebrae that are not formed correctly? If he does, then he has congenital scoliosis. If the bones of the spine are formed correctly, but curved, then he fits into the very broad idiopathic category.

The type of testing that should be done depends, again, on the type of scoliosis he has. If he has congenital scoliosis (especially in the lower spine) then a renal ultrasound is important to rule out any problems with the kidneys/bladder. A full spine MRI is often a good idea (not necessarily an emergency test) to make sure the spinal cord is healthy and there are no underlying spinal cord causes for the scoli.

These questions will be best answered by the PEDIATRIC (i hope) orthopedists you see on the 31st. Write down your list of questions so you don't forget what to ask. Ask specific questions that are important to your little man. Each scoli patient is different. The treatment options can vary greatly, depending on many variables.

Best wishes and keep us posted.

[realmccoys]

Hi, Carmell

Thanks for the information...and your expertise....I really appreciate it right now....you have been a blessing! Dawn

[Carmell]

No problem. I wish you both the very best! Keep us informed on how things go.

[realmccoys]

Hi!

My 4 1/2 year old boy had his appt. yesterday at Children's (Pgh) with the ped. ortho. Basically, we don't know much more than before we went

My son doesn't fit into any of the typical categories for scoliosis for a 4 yr old boy. He had to do another xray standing up ( the last ones were taken laying on his back). He is at 20 deg., right thoracic. According to the dr., he doesn't fit the profile for idiopathic...he said most idiopathic is found in adolescent girls and is left thoracic. The dr. is leaning towards this being congenital. We go back in 3 mos. for more xrays, and poss. an MRI if the curve seems progressive.

The dr. mentioned neurofibromytosis ( sp??)....my son does have 3 "spots"....1 of which I know he was born with; the other 2 have "shown up" over the years. However, my husband has several cafe au lait spots, which is what my son's look like??!!

Basically, we are to watch and wait...has anyone out there had a similar experience?? I was at least hoping to come away from the appt. with my son in a "category" of scoliosis....

I'd appreciate any input anyone has! Thanks, Dawn

[cherylplinder]

I think you may need a second opinion. I couldn't tell where you were posting from.

In idiopathic scoliosis, there are several age categories. Infantile is diagnosed from birth to age 3, I think. Juvenile is diagnosed from ages 3 to 10. Adolescent is diagnosed from ages 10 to maybe 18(?) My daughter has juvenile idiopathic scoliosis, and was diagnosed at age 7, but I ran across a CAT scan done when she fell out of a tree at age 5, and the curve was visible to me, although it had progressed in the 2 years between.

Whether or not the curve is a congenital curve depends on the structural defects present. In idiopathic scoliosis, there is a structural defect, but no hemivertebrae(partial vetebrae that didn't form inutero, I think),etc. THe structural defect in idiopathic scoliosis is in the shape of the vertebrae. I don't know how hard it is to tell from an x-ray which it is. I have no experience there, but there are many on this forum that know a tremendous amount more than I do.

Adolescent idiopathic scoliosis(AIS)is diagnosed in both boys and girls, but progresses more often in adolescent girls to the point of surgery or bracing, if I understood correctly at our last appointment. (We had a short discussion because I rarely see boys in the office.)

A left thoracic curve is NOT common. In thoracic curves, right is most common.

I am concerned that this physician did not give you more information, and more accurate information.

There are others on this forum that can shed more light than I can on congenital scoliosis.

Shriners does a fantastic job. You might consider a second opinion at your nearest Shriners.

[desheah]

hi,

my son is now 4 1/2 yrs old and has infantile scoliosis. he was diagnosed at 18 mos. he has an s-shaped curved - right thoracic and left thoracolumbar. i'd be happy to go into his history later if you want, but i really think that you need to go get a second opinion with another pediatric ortho. where do you live? is pgh = pittsburgh, philly??? i can recommend good orthos at both locations, but i'm not sure if i'm right about where you are. this ortho obviously only deals with adolescent cases of scoliosis. scoliosis in young kids is uncommon. i don't want to alarm you since your son's curve is low, but he has a lot of growing left to do, and it has the potential to get worse. as for the neurofibromatosis, were you told to see a pediatric neurosurgeon who could definitively diagnose this condition? in my humble opinion, a full brain and spine mri should have been ordered now, and will be if you end up going to a pedi neuro? i can't believe the ortho just let you leave the office after saying that and then not suggesting to get it checked out appropriately.

from the x-ray the ortho could have at least been able to tell if there is any congenital abnormalities = bony abnormalities of the spine including hemivertebrae (half or malformed vertebrae as cheryl mentioned, fused vertebrae, fused ribs, etc.

do you have a copy of the x-rays that were taken? if not, please call and keep a copy sent to you so that you can take them to another ortho. this way, perhaps your son will not need additional x-rays and less exposure is always good. you should be able to also ask for a copy of the report that your current ortho writes up. basically what i'm saying is that you should start a medical file for your son so that you can take it wherever you need to. people will not have to do repeat tests that are unnecessary if you do this.

anyway, please write back and let me know where you are.

deshea
mom to lucas and ruby
north of boston, ma

Hi!

My 4 1/2 year old boy had his appt. yesterday at Children's (Pgh) with the ped. ortho. (this man is the head of the dept!) Basically, we don't know much more than before we went

My son doesn't fit into any of the typical categories for scoliosis for a 4 yr old boy. He had to do another xray standing up ( the last ones were taken laying on his back). He is at 20 deg., right thoracic. According to the dr., he doesn't fit the profile for idiopathic...he said most idiopathic is found in adolescent girls and is left thoracic. The dr. is leaning towards this being congenital. We go back in 3 mos. for more xrays, and poss. an MRI if the curve seems progressive.

The dr. mentioned neurofibromytosis ( sp??)....my son does have 3 "spots"....1 of which I know he was born with; the other 2 have "shown up" over the years. However, my husband has several cafe au lait spots, which is what my son's look like??!!

Basically, we are to watch and wait...has anyone out there had a similar experience?? I was at least hoping to come away from the appt. with my son in a "category" of scoliosis....

I'd appreciate any input anyone has! Thanks, Dawn

[realmccoys]

Hi! We went to Children's hosp. in Pittsburgh .....should I try a Dr. who is within the same practice, or go elsewhere?? thanks, Dawn

[Carmell]

Hi Dawn,

Ditto what the others said. It doesn't matter one bit that the doc you saw is the head of any department - he obviously doesn't have your son's health in his best interest. Some of the information he gave you is deceiving to you. He seems to be comparing your son to teenagers with "typical" scoliosis. This shouldn't be the case.

As for xrays, standing xrays are usually more accurate, especially in children (patients) with very flexible spines. Being flexible is a good thing.

I also agree that your son needs to see a neurosurgeon or neurologist to rule out neurofibromatosis. I know several families who have this hereditary condition. Very manageable when treated correctly. Scoliosis is one of the side effects/conditions that can be associated with neurofibro.

If you are still unsure about who to take him too, my suggestion is to go to Shriners in Philly. They have specialists there who can rule in (or out, hopefully) the neurofibro issues and give you the specific details about his scoliosis and spine issues. You NEED to know if the scoliosis is congenital or idiopathic. You NEED to have an MRI done (full brain and spine) to make sure there are no underlying issues that you don't know about. Shriners has a collective group of specialists to help with this. Please contact them http://www.shrinershq.org/Hospitals/...a/default.aspx

Let us know how things go.

(P.S. - My intentions are not to sound like an alarmist. I just hope that you don't put too much stock into what the other ("Head" of dept or not) told you.)

[desheah]

hi dawn,

i'm not sure if i would go to another ortho within the same dept. since you saw the head, then it is more than likely that the other orthos will have similar experience.

actually, i would recommend seeing dr. james sanders at the shriners hospital in erie. as you can tell from my previous post, i live in massachusetts, but we travelled to erie to see dr. sanders from the time lucas was 2 1/2 yrs old to now. lucas went through serial plaster casts to help control his scoliosis. his curves were initially 68o/45o at 18mos. first we went locally to children's in boston for a year and did bracing, but it was ineffective and we were unhappy with our care. that is when we decided to travel to erie since dr. sanders is one of two places in the us that do these serial plaster casts. in brace lucas is now 18o/14o. we're pretty darn happy. dr. sanders is a wonderful doctor and sees A LOT of young kids with scoliosis. please consider going there for a second opinion. here's the phone # to apply: 1-800-873-KIDS. here's a description on how to apply:
http://www.shrinershq.org/Hospitals/Erie/application/

i'm still thinking that you should try to make an appointment with a pediatric neurosurgeon. do you think you could get a referral from dr. mendelson? i would follow up on that if it were me. actually, another aside about lucas, he was automatically required to have an mri done because of his age at diagnosis. it was discovered that he had a tight/fatty filum and had to have a detethering done. he had none of the other obvious symptoms of this condition besides the mri. that is why i'm pushing for the mri!

deshea

[desheah]

carmell and i posted at the same time! hi carmell! i only suggested erie since it is closer to pittsburgh, but yes, i believe that philly has more experience with kids who have neurofibromatosis, if that is even what your son has. mri, mri, mri!!!

deshea

[IansMommy]

Deshea, Carmell, & Cheryly gave you great advice. I don't have much to add to what they already said. I agree that Shriners in Erie is a great option for you (that is where we take my son), but I do know of a Doc in Pittsburgh that has trained with Dr. Sanders and I was VERY impressed with him and his beside manner is great! I am not sure if he is set up yet or not to cast in his practice, but it is worth checking him out.

Mark Sangimino
490 E. North Avenue
APB Suite 400
Pittsburgh, PA 15212

[realmccoys]

Hi! I rec'd the doctor's written report from my son's first scoliosis check up. Here is an excerpt: "In assessment, I do agree this boy does appear to have a structural scoliosis. The etiology of this is a little bit hard to know. A 4 yr. old boy does not really fit the pattern for adolescent idiopathic scoliosis. I think he perhaps may have some type of a constitutional scoliosis."

Ok, here are my questions: 1. Does "structural scoliosis" mean congenital or idiopathic? 2. What is "constitutional scoliosis"? 3. Aren't there several age group categories for idiopathic scoliosis?

Thanks...I'd appreciate anyone's expertise out there... Carmell, what do you think?

Dawn