P&PT for DD's Ped Neurologist appt tomorrow - UPDATE

[edurnemk]

UPDATES in post 23 and 60

DD has shown STRONG preference for her right hand from about 3 months, she's now 6 months and things are still the same in that department. Our Ped has been observing her since I mentioned it at her 4 month appt. She has good muscle tone and reflexes on her left side, but for some reason she rarely uses that hand. There are no other red flags and she's hitting all her milestones as expected.

So we're seeing a Pediatric Neurologist tomorrow, and I'm really nervous. Of course I've been reading a lot on the internet in these 2 months and that is not good for one's peace of mind, I've lost a lot of sleep worrying over this. Please send any good vibes, thoughts, prayers our way. Thanks!

[brittone2]

Sending you positive thoughts for the visit. You and your little one will be in our thoughts.

[kaharris83]

Good luck tomorrow. Sending PTs and hoping all looks normal.

[BDKmom]

Sending P&PT for you and your DD. Hope everything checks out OK.

[WatchingThemGrow]

P&PT for your visit!

[123LuckyMom]

P&PT for your appointment!

[crl]

Prayers for you and yor daughter for tomorrow.

Catherine

[lmh2402]

Sending lots of p&pts!

[mackmama]

Major PTs coming your way. Please keep us posted. Deep breaths... :hug:

[sste]

Of course!!

[TwinFoxes]

P&PT that all goes well.

[infomama]

Pt coming your way.

[TwoBees]

Good luck tomorrow!

[edurnemk]

Thanks everyone, I'll let you know how it goes tomorrow.

[kdeunc]

Hope all goes well tomorrow. :hug:

[mickminmom]

P&PTs coming your way!

[sunshine873]

P&PT for you both tomorrow!

[malphy]

P and pt coming your way! good luck tomorrow!

[SkyrMommy]

Many P&PTs for a good appointment tomorrow. :hug:

[SASM]

HUGE HUGE hugs...Sending lots of P&PTs your way. I'll be thinking of you tomorrow.

[KDsMommy]

Lots of P&PTs coming your way for an uneventful visit tomorrow.

[liz]

P&PT for you and DD :hug:

[edurnemk]

So we had the appt today. I'm still processing all the info, but basically he diagnosed Monoparesis and wants us to start PT ASAP. He thinks we're very early and intervening now almost guarantees she'll gain almost full mobility of her arm, she'll lead a normal life and maybe only be a bit clumsy with her left hand. He's pretty sure the lesion in in her brain, not the nerve or the spinal cord, because of a her muscle tone. The cause is not known, he thinks the lesion happened during PG because there were no complications during delivery and no injuries, fall, etc. afterwards.

He recommended an MRI as well, I'm a bit nervous about that, since she'd have to be sedated, and the treatment will be the same regardless of the results. But we'll probably have it done soon.

I'm relieved to know it's not very serious, that her quality of life won't be affected. But I also have a lot of mixed feelings, not knowing the cause is hard, and wondering how it happened is killing me. At a rational level I know I did nothing to cause it, but I still at some level feel like I failed my baby. I guess I need time to process the whole thing.

Thanks everyone, for your support and good wishes.

[SASM]

Huge huge hugs... That is actually a relief...could have been a lot worse...knock on wood. You shouldn't be scared of sedation. Anesthesia is very safe...and its better for her to be anesthetized and get an accurate reading. Huge huge hugs... Continued P&PT's.

[KpbS]

Sending huge hugs! So glad you were so observant and caught it early! :grouphug:

[crl]

So glad you caught it so early. What a lucky baby to have such an observant mama!

Continued prayers for peace and healing.

Catherine

[wellyes]

Good new, that it is treatable. It sounds like she has some great doctors, and a strong advice in you.

[sunnyside]

Hugs mama, you didn't do anything wrong. I'm glad to hear it isn't more serious and understand that it is still stressful and hard. :hug:

[LizLemon]

Hugs. I think you should be commended for catching it so early! Babies brains are developing so fast that I'm sure she will catch up in no time with PT. I would imagine it is also a really good sign that she has normal bulk and tone.

Please give yourself a break, though. Just because it is hypothesized to have happened during pregnancy doesn't mean it was anything under your control!

[AnnieW625]

Glad you have a diagnosis. You did nothing wrong. I'll continue to pray for you all. :hug:

[edurnemk]

Thanks everyone, DH also keeps telling me I should not feel responsible because I could not have taken better care of myself and DD during PG. And I know he's right, I think I also have a lot of accumulated stress from the last couple of months of wondering how serious this was. And like the Dr. said, hearing words like "brain injury" is hard, even if it's not too serious. Of all the possibilities this is closest to the best case scenario, so I am deeply thankful.

I have the BBB to thank for helping me catch it so early (and the Dr. did say it was very rare for this to be caught so early). Back in late October there was a thread about the age at which kids showed hand preference, I posted that DD was clearly righthanded at 3 months, and after writing that I realized it wasn't normal but I hadn'treally thought about it until I typed that response, so that thread is what made me pay attenton. And several posters commented the same thing and urged me to talk to our Ped. So thank you!

[WatchingThemGrow]

hugs to you. A diagnosis and treatment plan are great next steps! So glad you went in. Keep us posted on how she's doing!

[trales]

I am so happy you have a solid answer and a treatment plan. Sounds like things are really moving in the right direction. Good job mama.

[SkyrMommy]

:hug: I'm glad that her prognosis is so positive, many P&PTs that her therapy goes very well!

[sunshine873]

Glad to hear you got a diagnosis and treatment plan so early! Good luck with PT...my experience with DD was that it felt like nothing was happening, then all of a sudden she'd seem light years ahead of where she was the day before.

[brittone2]

Well, that sounds like an encouraging prognosis. It is great that it was identified early, as that will be a huge asset moving forward. You and your little one will be in my thoughts. Best wishes as you move forward with therapy.

[carolinamama]

Hugs for you and good wishes for your DD as she starts treatment. Glad to hear there is a plan in place.

[arivecchi]

Good luck with treatment. You did an amazing job IMO spotting this so early.

[Indianamom2]

You have caught this so early and with PT, I have no doubt that she will be able to do whatever she wants as she grows. Early therapy makes a HUGE difference.:hug:

[BDKmom]

Glad you were able to get some answers and have a plan. Good luck with treatment. Kuddos to you for being so observant and acting quickly to get your DD therapy.

[mypa]

I'm just seeing this post now. My DD also showed significant right hand preference at 4 months and her left hand was still closed.

The ped didn't seem concerned about it but since DD was born with sepsis and hospitalized for 8 days she was being followed by the Regional Center for developmental delays and at 6 months recommended that her lack of using her left hand and the closed fist position was significant enough to get therapy.

She did therapy for about 3 months and showed significant improvement. Therapy was a lot of fun for her and me! It was all play based and was basically about introducing everything (food, toys) in the non-dominant hand.

At 2 yo she was diagnosed with speech delay and also got therapy for that.

Now at 4yo she is a chatter box and has no hand dominance.

I understand about feeling guilty as she was born with an (unknown) infection that she obviously got from me as I too presented with fever and elevated WBC. Try to focus on getting the help she needs and you will be amazed at the fast improvements these little ones make.

FYI, DD did not get any type of MRI/scans. She was diagnosed by her Regional Team.

[missym]

Big :hug: and great job for following your instincts and addressing it early. Good luck with therapy - I'm sure your DD will do great!

[maestramommy]

:hug:I'm glad you have a diagnosis, and kudos to your ped for catching it so early. You know it wasn't anything you did or didn't do. :hug:

[edurnemk]

I'm just seeing this post now. My DD also showed significant right hand preference at 4 months and her left hand was still closed.

The ped didn't seem concerned about it but since DD was born with sepsis and hospitalized for 8 days she was being followed by the Regional Center for developmental delays and at 6 months recommended that her lack of using her left hand and the closed fist position was significant enough to get therapy.

She did therapy for about 3 months and showed significant improvement. Therapy was a lot of fun for her and me! It was all play based and was basically about introducing everything (food, toys) in the non-dominant hand.

At 2 yo she was diagnosed with speech delay and also got therapy for that.

Now at 4yo she is a chatter box and has no hand dominance.

I understand about feeling guilty as she was born with an (unknown) infection that she obviously got from me as I too presented with fever and elevated WBC. Try to focus on getting the help she needs and you will be amazed at the fast improvements these little ones make.

FYI, DD did not get any type of MRI/scans. She was diagnosed by her Regional Team.

Thank you for sharing your story! The Neuro said the MRI wouldn't change the Dx or treatment, that it was just something to be 100% certain of the kind of injury and where it's located. So there's no hurry in getting it done. He said we could decide not to do it, and even stop going to follow-up visits with him, but that the one thing we absolutely need to stick to is PT.

[lmh2402]

i'm glad you got an answer that it's not a serious problem!

:hug: mama...you definitely didn't do anything wrong!

[Melbel]

First, I want to say great job for determining there was a potential issue and following through with her doctors. It sounds like a very encouraging prognosis (in large part due to your diligence).

Note that it may take months to schedule a sedated MRI (this was the case here), so you may want to go ahead and get on the books (you could always cancel later).

Wishing you and your DD the best in her PT/recovery.

[JanBaby]

Based on my experience with DS, I strongly suggest getting the MRI. Without sharing too much or completely freaking you out we had a significant finding on a recent scan. Because we caught it early DS has excellent prognosis. Without the MRI we would not have known he has this condition.

[kaharris83]

:hug: So glad you caught it early. You did nothing wrong.

[edurnemk]

Based on my experience with DS, I strongly suggest getting the MRI. Without sharing too much or completely freaking you out we had a significant finding on a recent scan. Because we caught it early DS has excellent prognosis. Without the MRI we would not have known he has this condition.

Thanks for the advice. We are getting the MRI, but I am nervous about it, TBH. Was your son sedated? How did it go? I really don't know what to expect. We haven't scheduled it since I want DH to be in town (he travels for work every week) and his calendar hasn't been defined for the next few weeks.

[zag95]

Edurnemk-
Happy to hear that you have diagnosis and a plan. Excellent news- way to advocate for your DD!

BTW- your kids and mine have the same birth months!

Sending best wishes to you all.

[essnce629]

I'm glad you were able to get a diagnosis and that treatment can be started early. Way to advocate for your dd! Keep us updated on her ongoing progress.

[JanBaby]

Thanks for the advice. We are getting the MRI, but I am nervous about it, TBH. Was your son sedated? How did it go? I really don't know what to expect. We haven't scheduled it since I want DH to be in town (he travels for work every week) and his calendar hasn't been defined for the next few weeks.

He has had two and was sedated both times without any issues (5 months and 12 months). He was getting over a cold the second time so they took more precautions but he was running around an hour after we got home :)

[anonomom]

Way to go, Mama, for catching this early and making sure it got addressed -- I'm not sure I'd have been so alert when my kids were infants. Your little one is lucky to have you in her corner.

[MMMommy]

Good for you and your DD for diagnosing early. I'm sorry you and her are going through this, and I hope for a smooth treatment. Hugs. :hug:

[Momit]

So glad you have a diagnosis and a treatment plan. I agree with PP - good for you for being so in tune with your little one that you caught it early.

[div_0305]

:hug: Agree with all the PP for commendations on your observance and being so proactive. You are right, second-guessing anything about what you did/did not do will not help. You have to believe and trust in yourself and all that you could do to have a healthy pregnancy. I'm no medical expert, but really, you did your best and that's all that matters. So much can happen that we have no control over, despite our "bestest" efforts to keep our loved ones safe and healthy. Lots of PP&T as you get your daughter the help she needs!

[daisymommy]

Hugs mama :hug:
Our babies are so close in age together, I can only imagine how you must be feeling. Prayers go out for her and you that you will get excellent care and she will only grow stronger each day.

[mommylamb]

Good for you for recognizing the issue and proactively dealing with it. Hugs. So glad it sounds like she'll be fine.

[edurnemk]

Thanks, everyone. i am feeling better now, I really needed to get all the stress and worries out. We're starting PT on Monday, we'll schedule the MRI after consulting with anothef Ped Neuro just to have a second opinion, and thus make sure the DX and treatment are accurate.

[edurnemk]

We had our first PT session today. It went pretty well, although DD hated one of the exercises. The therapist is very optimistic, she said monoparesis is rare and sometimes transitory. She said she doesn't see any other signs of neurological issues in DD, so that it's probably a very, very small injury. She also mentioned that sometimes monoparesis can be caused by in-utero position, that babies are cramped in a certain way that their arm/leg/neck become contracted (a friend's baby was born with torticolis, so I'd heard about this, before, and she was also referred to a Ped Neuro at first) and so they won't use that arm as much.

We'll be seeing her once a week and she gave us exercises to do at home every day. We should know more about the cause after the MRI, but it's encouraging to hear such a good prognosis from the therapist.

[kaharris83]

So glad to hear therapy went well and you received more reassurance from the therapist!!

[citymama]

I don't know how I missed this thread till today, but I'm just seeing this for the first time. I am so glad you have a clear diagnosis that can be fully resolved through early intervention PT. My nephew had torticolis likely caused by in utero positional issues. The torticolis was fully resolved well before 1 and he's now a serious jock! I hope your DD makes rapid progress with the PT.


I have the BBB to thank for helping me catch it so early (and the Dr. did say it was very rare for this to be caught so early). Back in late October there was a thread about the age at which kids showed hand preference, I posted that DD was clearly righthanded at 3 months, and after writing that I realized it wasn't normal but I hadn'treally thought about it until I typed that response, so that thread is what made me pay attenton. And several posters commented the same thing and urged me to talk to our Ped. So thank you!
Hey, I started that thread! And I remember your post well, and the replies from some of the posters. I remember thinking "I'm sure this isn't a big deal" but something about your posts sounded an alarm. It was clear that you *knew* at some level that something was amiss, so I do think your watchfulness and proactiveness is what made all the difference. Kudos to you, and big hugs.

[Globetrotter]

I am really impressed that you caught it so early! I'm sure it will turn out just fine :hug: