Developmental concerns with my 8 week old — The Bump
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Developmental concerns with my 8 week old

Hi everyone, 

i hope it's ok to post this here, but I'm looking for some advice/words of wisdom from anyone who has maybe had a similar experience or can speak to how I'm feeling....

So just a little background,  I gave birth to twin boys 8 1/2 weeks ago. I had severe preeclampsia and needed an emergency c section at 36 weeks, so they are 4 1/2weeks adjusted. NICU stay was short with only minor premie issues. Pregnancy was pretty smooth up until the end, however, Twin A was very low in my pelvis from very early on, they felt his head on my cervix as early as 16 weeks. Sure enough, he was born with torticollis/plagiocephaly because he was SO tight in utero. He basically grew mostly in my pelvic cavity. He is currently receiving PT for his neck and head.

I know he is only 2 months (1 month adjusted) but i already have some major concerns with his development. He has what I consider severe ankle clonus in both legs. I read it's normal for preemies to have some clonus due to an immature nervous system, but like 2-3 beats only. If I don't stop his legs, they will keep moving!! Of course I google and discover that's ankle clonus is almost always an abnormal outcome of a neurological disorder, often cerebral palsy. Now the PT says they are young and we just have to watch it, but I'm already losing so such sleep over what could be wrong with him. We have the 2 month well visit on Monday and I plan to talk to the pedi about it, but I know the answer will be the same. Not that I do think waiting is the smart thing to do, but if there is something wrong, then I feel like the sooner we know, the better.  In addition to the clonus, he has a foot that is turned in, his legs look somewhat bowed, he is EXTREMELY colicky, and he sometimes (not always) has extremely rigid legs and feet.

I'm really trying not to be neurotic and jump the gun on anything, but I also want to be proactive. My husband and mother are so upset with me because I've consulted dr google instead of just waiting like the PT said. But considering what I found, I feel like its better to be informed and know what we may potentially be dealing with.  

Has anyone had any experience with ankle clonus, CP, or any other neurological disorders that can give me some words of wisdom?  I really appreciate anyone who took the time to read this. Like I said, my family upset with me for causing so much worry and I feel like I have nobody to talk to.  This is all on top of post partum depression, so I am feeling extremely emotionally drained and my stress level is through the roof. I have to go back to work in 2 weeks and I am having anxiety attacks about that too! 

Me: 29 DH: 30 TTC # 1 since 2008, in denial of needing an RE until 2012 DX with severe MFI, straight to IVF IVF #1 August 2012- stims 8/18, ER 8/28- 18R, 11M, 10F. 9/3 ET cancelled due to chronic OHSS. 6 awesome embies on ice! 9/27 FET Beta #1: 427-BFP!!! Beta #2: 856 First u/s 10/15: two sacs!! Ahh, twins!! imageBabyFruit Ticker

Re: Developmental concerns with my 8 week old

  • First of all, let your family (even your DH) be upset at you.  You can't control their thoughts or feelings and I would assume they are acting like this probably out of fear.  DS2 (now 3.5yr old - will be 4 in Oct) was diagnosed with CP at just shy of 10mos old.  Given that, I will state that DS2 had ankle clonus, his feet are fairly pronated when he stands on the floor, and his body has fluctuating tone (it REALLY kicks in when he is feeling unstable).  I remember having to (usually) bend his legs for him during a diaper change and that was actually one of the things that concerned me.  DS2 was born via emergency c/s at 35wk, 5d.

    Given what you have noted, I wouldn't necessarily "wait and see" but, your son is already in therapy and that is what needs to happen.  I won't say that your child has CP since I am not a doctor but given the preemie issue, torticollis (my son had that too), and especially the rigidness (high tone) in his legs and feet I would see a neurologist.  They may or may not give you a diagnosis.  1-2mos is pretty early to diagnosis something like CP - but CP is based on clinical history and presentation. There is not an actual test for CP if that makes sense. They may or may not want to do other tests (DS2 had a MRI - this supported the CP diagnosis). Personally, I am all for if you are concerned about something then go get it checked out. I'd much rather know if there is something going on so I can take the necessary steps should it be necessary.

    You may want to check out the FAQ. I think there is a link to it on this page or maybe the 2nd or 3rd page.

  • I agree with M&R (who was sooo amazing to me when my son was born). 

    My son had a brain injury at birth, and had ankle clonus.  He was at very high risk of CP (we were told it was almost a certainty).  Given your situation, I would ask for a pediatric neurologist referral from your pediatrician.  It can not hurt to get a full evaluation to ease your mind or get a game plan together if there is an issue.

    I will say that if there is a neuro issue - you just can never tell what your eventual outcome will be.  Our son's clonus eventually subsided (it took a loooong time) and he does not have CP.

    Hang in there! 

     ETA - I also had PPD, and I asked my midwife for help.  She put me on anti-depressants and it helped SO much.  I agree that you are being a great mom.  Family members have good intentions, but they probably think you are just being paranoid.  They are not with this baby 24/7 like you are.  YOU are the best advocate for this baby.  There is no downside to getting this checked out.  Either you are wrong and you breathe a sigh of relief, or you start working on the issue. 

    Be easy on yourself.  You are a great mom! 

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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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  • bry238bry238 member
    I really appreciate everyone's kind words and input. I am definitely asking for a referral to a neurologist on Monday. Thank you ladies!
    Me: 29 DH: 30 TTC # 1 since 2008, in denial of needing an RE until 2012 DX with severe MFI, straight to IVF IVF #1 August 2012- stims 8/18, ER 8/28- 18R, 11M, 10F. 9/3 ET cancelled due to chronic OHSS. 6 awesome embies on ice! 9/27 FET Beta #1: 427-BFP!!! Beta #2: 856 First u/s 10/15: two sacs!! Ahh, twins!! imageBabyFruit Ticker
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