Hoping you all can help?

mhg2010dsr · March 2014

I hope you don't mind me posting here. I am the mother of twin boys who are almost 10 months old. One is typical and one is delayed. They were born at 34 weeks. I have a list of concerns/things I've noticed with my non-typical boy.

*Toes curled (more-so on the left foot)

*Still clenches his left fist (not always but fairly frequently)

*Left arm weakness (I'm not sure weakness is the right word...he doesn't use it as much and when he does it isn't like his right)

*Scoliosis

*Developmental delays

*Reflux

*Early signs of "handedness)

*Hearing loss due to frequent infections/pressure/fluid

*CF "carrier" (when we spoke to the genetics counselor she said "most-likely")

*Points left foot outward when standing or "walking"

*Slight heart murmur

He has had a MRI which his ped described as "OK/normal". She is kind of a "wait and see" type...which I am not fond of and I'm thinking of switching to another ped. He is in Early Intervention (just started in February) and just had an eval for PT. He will be getting tubes next week for the ears and we are hoping his hearing will improve or, better yet, return to normal. Like I said, he uses his left arm but it is not "normal"...For example: when playing with a ball with his older sister (rolling it on floor to him) he would get excited and flail his arms but his left stayed bent and he didn't move it as much. He tends to reach for things with his right hand 90% of the time. He wasn't able to sit unassisted until this past month. He has just started "scooting" but he uses his right arm to pull and keeps his left bent under him. He also uses his right foot to push off more than the left.

What would your first thought be as to what kind of diagnosis he might end up with?

Thanks in advance for any and all help/advice!

thefuturemrskudla · March 2014

Have you been to a neurologist? He may have a form of CP, which can be very mild and helped tremendously by PT

mhg2010dsr · March 2014

Thank you for such a quick reply. I have a hard time getting his ped to listen. It took me forever to get her to refer us for EI. His EIS has been very helpful and can also do referrals for some things. She comes tomorrow and I plan on asking her if a neurologist is something she could refer us to.

I have suspected CP (mild) for quite some time. No one seems to share my concerns as much. It's like they see the problem but they don't. So frustrating. My DH just doesn't speak about it. My parents see it but say he'll grow out of it. In-laws say he's lazy. Ped first said he was just slow and lazy! Really!? Do not tell me my kid is lazy! There is a definite difference in lazy and using one side of his body more than the other...Right?!

Ash2015 · March 2014

My son has mild CP (from a stroke shortly after birth) and what you're describing is EXACTLY the way his presents. He curls his toes on his left foot, doesn't use his left hand as much as his right, etc. We got him into PT, OT, and got him a brace for his left arm/hand and it helped tremendously. If you're having trouble with your pedi, I'd suggest calling a neuro at a children's hospital near you. That's what we did and it was the greatest decision we ever made. Feel free to PM me if you want someone to talk to or need advice on where to go from where you're at.

Ash2015 · March 2014

By the way, CP won't always show up on an MRI, CT, etc. My son had an MRI the day after he was born that showed a stroke had occurred but less than a week later, another MRI looked completely "normal" because of restored blood flow. That could definitely be a possibility with your DS.

mhg2010dsr · March 2014

@Ash2015 Thank you. It's been so hard to "know" in my gut something was wrong but no one else acknowledging it. I am definitely going to look into seeing a neurologist. We have a genetics appt next month that will go over everything. When he was first born they thought he had PKU since that's what showed on his newborn screening, twice! Third time showed CF. It wasn't long after that that I started noticing his differences from his brother (major ones; of course they are little individuals). From the beginning he has "favored" his left side. Tilted his head that way. Moved more on his right. Bangs things on the table with his right. It's so hard not having answers. I know we might not have them for a long time but, geez, give me something to work on! I want to be as proactive as possible. The sooner, the better!

In your opinion, are younger doctors better at acknowledging delays and being proactive than their older counterparts?

ETA: I thought maybe the "normal" MRI could be...wrong. I think I've read somewhere that not all cases of CP show on MRIs. I think our current ped is of the mindset that if it's not visible to her eye or she can't read it from a credible source that she trusts, it's not there/true. Besides, MRI shows damage, not functionality. Right?

Assembly_Reqd · March 2014

Follow your gut.

Get a new pedi. She needs to treat the child in front of her as well as the one on the report. Perhaps genetics will be able to steer you in the correct direction. geneticists lovvvvve tests.

I would also get a copy of the mri images on a disc as well as the radiologist report. You can bypass the pedi by contacting the hospital directly. They will probably have you sign a records release form. Just tell them you keep copies of your child's procedure reports.

MaxandRuby · March 2014

I haven't read all of the responses but my first guess would be CP. DS2 has that and had a lot of the same things going on. Sorry for the short reply but I need to get to bed!

thetwinkies&Vivi · March 2014

Ive not read through the responses in depth, but one of my twins had similar issues including left sided weakness. She would not cross the mid line and had preferred her right arm. She also had opposite facial slumping, poor lip control, and teouvle eating. She had a history of aspiration and desats with her reflux. At 2.5 months she had a nissen done, and gtube placed. Around 9 months, and MRI was done to look for evidence of a stroke, which was negative. Genetis cleared her of any abnormalities. We also saw a neuro for CP talk, but he believed it was a combo of Sandifer syndrome and complications from her surgeries, tube placement, torticolis, and womb crampimg/positioning. She began physical therapy and eating therapy for the poor lip control and really made great progress in catching up in her delayed areas. Now, they only thing going on is speech/ hearing concerns.

just wanted to share that as it seems similar to your experience.

thetwinkies&Vivi · March 2014

Sorry for my lack of formatting and horrific grammar and spelling. I can't edit on my tablet.

realisticdreams · March 2014

hi & welcome.

My now 4yo had a stroke before she was born because I had an abruption. She was dx with mild CP around 6 months of age. She has multiple other medical issues, and since you're on a tablet i'm not sure if you can see my siggy, it's this,

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

In the beginning she rarely looked to one side or used her right arm. She was well over a year before she could cross midline or hold her bottle. We started PT at 2 months of age and were very aggressive. We were fortunate that our PT suspected something like this and started treating for it from the beginning. When she started crawling she would mostly just drag her right leg as well. It was quite obvious from very early on she would be a lefty. We will never know if it was from her stroke or if she would have been anyways..

Also for the MRI, it cannot show functionality. Our 1st neuro explained it like this, the MRI can show if you have a hand and 5 fingers, but not if you can move them. Our 1st MRI did show a small spot from her stroke, but now it is gone. So if we would only of had later imaging done nothing would be seen.

She is doing well right now (in regards to the CP, we have many other issues though). Her legs are tight sometimes but a person on the street would never 'know' that she has CP unless they are well versed in gait and watch how she does things atypically.

Good luck, let me know if you have any other questions.

(If your insurance covers private PT I would look into that as well, I am a strong believer in medical model PT vs EI especially for something like this) And at home, force him to use his weaker arm, always place toys on that side, etc.

ETA: I met alot of resistance from the old pedi before we moved back here. She just kept saying, "look at her she's beautiful." That doesn't MEAN she is healthy. I was a first time mom and we were young. H's parents thought I was psycho and he wasn't all too supportive at the time himself. Now he knows to trust my gut instinct. I think the inlaws still think i'm psycho though lol.

mhg2010dsr · March 2014

Thank you for all of your personal stories and advice! We have an appt with genetics in May. The lady I spoke with on the phone suggested we get in with a neuro. I'm hoping to do that soon. Hopefully we will hear back from his PT eval Monday or Tuesday. The PT suggested OT as well, so I will be looking into that. He's made a lot of progress since we started this process. But he's still not "right". Of course I think he's perfect in every way anyhow, regardless of how he does or doesn't do things. But I also want him to be able to do all the things other kids his age do. I'm going to switch doctors for sure now. Do you all think a younger doctor is better with special needs and listening to parents concerns or an older doctor?

Ash2015 · March 2014

ETA: I thought maybe the "normal" MRI could be...wrong. I think I've read somewhere that not all cases of CP show on MRIs. I think our current ped is of the mindset that if it's not visible to her eye or she can't read it from a credible source that she trusts, it's not there/true. Besides, MRI shows damage, not functionality. Right?

That's exactly how our neuro explained it to us. Even though DS had a major stroke, if we went in for another MRI now (15 months later), there wouldn't be any evidence because the damage has "corrected".

Also, I'm not sure if a younger doctor would be more proactive, but DS's current neuro as well as the doctors he had in the NICU were all fairly young by medical field standards. Really, if you know something is wrong, I'd just keep pushing to be seen/tested if I were you. Mother's instinct will get you a long way. Good luck with everything in May!

macchiatto · March 2014

Hi and welcome. I agree your pedi sounds a little too "laidback" to me, IMHO. I would be more comfortable with someone who takes your concerns more seriously. The "slow and lazy" comment would bother me. I admit I'm a bit hypocritical with this b/c my twins' pedi also dismissed a lot of my concerns about one son the first two years. In retrospect, I understand why but once we got him evaluated and he qualified for multiple therapies, she's been great since then (and with everything else that's come up). I hope you're able to get some more answers from the geneticist or other specialists.

mhg2010dsr · March 2014

@-auntie- I'm glad you told me that story. I didn't even think about that. Kind of a DUH! moment going on right now...

Rose.9.6.03 · March 2014

I also have twins - one that has genetic issues and one that has none.

My twin with health issues was dx'd with a heart murmur (it was resolved by 1 year). She had acid reflux (resolved after a year). She had torticollis (resolved around 7-8 months), right side weakness and gross motor delays (done with PT at 13 months). She had a facial palsy (recovered by about a year of age).

Due the the facial palsy and the right side weakness, we were referred to neurology. She had a normal MRI. We ended up being referred to a cranio-plastic surgeon because they were worried about the facial palsy. Thankfully, the plastic surgeon sent us for a EMR that showed the nerve that was the source of the palsy was recovering.

Anyway, no one could tell me what was the source of all the issues were and it was very frustrating. I always had the sense that something was off - it just seemed strange to me that one child had all these random medical issues and my other child had none.

Thanks to a dermatology referral for something that seemed mundane, we were referred to genetics. My DD has a number of skin and hair abnormalities. She was recently dx'd at the age of 6 with a specific genetic abnormality - one that she shares with only one other person in the country. Anyway, it's hard to know what it caused or will cause in the future. We just sort of watch and wait.

The good bit of news for us is that she happens to excel socially and academically. And while she'll never be an Olympian (or even a high school athlete), she is within the average range of physical capabilities and enjoys sports, even if she's not particularly adept at them.

Not sure that any of that was helpful. But I do think you should follow your gut 100%. Definitely push for specialists and find yourself a new pedi! Also, with regard to the older/younger thing, I don't think there's a definitive answer. We've had some awesome doctors (both young and old) and a couple of crap ones (both young and old). Try to find recommendations by other patients' parents and people in the medical field. Sometimes, it's just a matter of whether your personalities mesh with the care-provider.

I wish you the best of luck and hope you are able to find some answers and medical successes.

mhg2010dsr · March 2014

Today my LO with issues got tubes. Things went great. He was a beast coming of the anesthesia though. Both ears were full of fluid and the left was infected....again (second time this month). When we got to the surgery center the nurse taking his vitals and getting things ready asked if his face was always "droopy" on one side (left). I said yes and explained to her about his left side being weaker and him not using it as much but we have no diagnosis. No one has ever mentioned this. I have thought it seemed "droopy" before but since no one else ever mentioned it I just pushed the thought out of my head. What would you do? Go to the ped? Go straight to the neurologist? Talk to the EIS? I'm not sure...I thought I was "seeing" things or making something out of nothing.

Rose.9.6.03 · March 2014

mhg2010dsr said:

Today my LO with issues got tubes. Things went great. He was a beast coming of the anesthesia though. Both ears were full of fluid and the left was infected....again (second time this month). When we got to the surgery center the nurse taking his vitals and getting things ready asked if his face was always "droopy" on one side (left). I said yes and explained to her about his left side being weaker and him not using it as much but we have no diagnosis. No one has ever mentioned this. I have thought it seemed "droopy" before but since no one else ever mentioned it I just pushed the thought out of my head. What would you do? Go to the ped? Go straight to the neurologist? Talk to the EIS? I'm not sure...I thought I was "seeing" things or making something out of nothing.

Glad thing went well with the tubes.

As for the facial droopiness, I would definitely go to a neurologist. You're not just "seeing things" if the nurse noticed it and brought it to your attention.

My DD's facial droop and her one-sided weakness were the cause for an MRI being ordered. The neurologist feared it might be a result of a stroke. Thankfully, for us, it was not the case. I think ultimately her one-sided weakness resulted from her preference to use her other side and from her torticollis. Her facial drooping was due to a facial palsy (probably damaged either in the womb or at birth. Facial palsies are not uncommon in infants and often the nerves can recover on their own. The doctors were worried about my DD's facial palsy because it did not show signs of recovery by 6 months, so we were looking at surgery so that she wouldn't have issues with drooling and eating. While her facial palsy did not give an outward appearance of recovery, the nerve was in fact recovering, as we saw through the EMG testing. By the time she was 18 months or so, the facial drooping was barely noticeable.

So while a facial droop may not end up being a big deal long term, it may sign of greater issues, so I would definitely follow up with a neurologist.

mhg2010dsr · March 2014

I got an appt with a different doctor at our normal peds practice that deals with special needs kids. Hopefully she'll send a referral to the neurologist.

How was your daughter hitting milestones? Did she hit them on time or late? How late?

Rose.9.6.03 · March 2014

mhg2010dsr said:

I got an appt with a different doctor at our normal peds practice that deals with special needs kids. Hopefully she'll send a referral to the neurologist.
How was your daughter hitting milestones? Did she hit them on time or late? How late?

She was delayed in gross motor skills the first year. She was late rolling, sitting, never crawled (scooted on her bottom), late pulling up. As I said previously, she exhibited right side weakness (which was deemed a "preference" - i.e., she wanted to preferred to use her left side). She also didn't want to do anything that required her to put pressure on her knees (hence the no crawling and not being able to pull up). Our PT worked really hard on overcoming these preferences. She ended up walking "on time" at 12.5 months - and from there on out showed no gross motor delays.

DD was behind her sister in all other milestones - but was still within the average/expected range (although always on the low end for the first 2 years).

It's hard when you have twins because you see one doing something and you expect the other to be doing the same. Sometimes it's because they are both within the "normal" range but at different points in that range. But sometimes it's because one is truly delayed.

Definitely follow your gut with this. Good luck.

Unknown · March 2014

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