Doctor's Visit Has Me Totally Freaked Out

Okay, as usual, here I am back again for reassurance from you more experienced parents.

My twins are six-and-a-half months -- gestationally, they're about five-and-a-half-months. Emmeline is hitting all of her developmental milestones. Jack has, traditionally, been up to a month behind her on everything. I took him to a neurologist today on my pedi's recommendation, because she was concerned about his rapid head growth (from 18th percentile at 3 months to 75th percentile at 6 months; rest of body is still at 25th pecentile). She also wanted a second opinion on his lagging behind on tummy time stuff -- holding up his head and pushing up with his arms. He can roll over from back to front and, after much prompting and working and usually, with tears, can roll back over; but his default position during tummy time is face down in the carpet. Often, he acts as though one of his arms is paralyzed and we have to put it in place for him -- but he CAN roll back over on his own; he just does it infrequently.

The neurologist was only vaguely worried about hydrocephalus; she said that preemies will often go through "catch-up" growth spurts that could account for his sudden growth and that we could wait to do an MRI to see if the growth stayed rapid and, if so, do an MRI then. She said he did have a bulging forehead but that it appears that it runs in my family (NICE! I was never self-conscious about my forehead before but I sure am now!!). However, she was very concerned about his muscle tone -- she said he was hypnotonic (she was very concerned that he was no where near being able to sit on his own)and was recommending that we start weekly physical therapy immediately. I was not surprised to hear about his muscle tone -- I have been saying for months that he just doesn't feel the same as Emme when I pick them up. He is more limp, she's like a little firecracker in your arms. It didn't surprise me that he might need extra help in that area. So the doctor says to me, "You don't seem upset. Were you expecting this diagnosis?" And my first thought was -- what am I supposed to be upset about? It didn't seem like she had mentioned anything particularly upsetting. So I asked her what this issue could mean and she started mentioning things like a stroke, in utero, caused by my amniotic fluid suddenly decreasing, and cerebral palsy. And I was like, OKAY, I'M UPSET NOW, HOPE YOU FEEL BETTER, DOCTOR. She said that she understands if we don't like the idea of doing an MRI because we would have to have him sedated but she often recommends that her more anxious parents (which I am, admittedly) go ahead and do the MRI just so they'll now if it's a neurological condition or not. I said, but it could be he's just a little behind and the PT and time will help him catch up and she said "Certainly. But I'm not passing him on this neurological exam."

I'm not sure what to think. I just didn't think that, developmentally, he was THAT far behind. When he's on his back, his arms are strong as steel -- he keeps pulling things off of his baby gym and we have to pry things out of his hands. I know he's not close to sitting but everything I read says to give them until 8 months before worrying about that.

Any one have any advice? Ever had an MRI done at this age and, if so, was the sedation worrisome? All opinions are more than welcome...and thanks for reading. I know this is a long post and I appreciate you sticking with it.

 

Jessy has similar issues and it was actually her heart causing the symptoms. She has slow growth, didn't sit till around 7 or 8'months didn't crawl till almost a year and walked with a swinging gait at 16 months. The tested her and while she had low muscle mass she had good tone. Turns out she had a very large septal wall defect and that was burning major calories. They didn't find the whole till she was 4. She had a murmur from birth but they thought it benign. She's a totally different kid now.

 

Deep breaths. And :hug: to you. I have no experience with muscle tone issues, but I've got the big head thing covered!

First, I would call EI(early intervention) and get them out to do an evaluation. They can do both babies if you want them too. You don't need a dr recommendation , but you can ask pedi's office for who they suggest. If he/they qualify, great! If not, you had it checked out. Both of my boys were in EI twice: first for torticollis(Nicholas) and not rolling over(Anthony). Then they were both in for speech.

Second: head size. Anthony was off the charts! That kid had(has) a huge head! I personally wasn't worried, as he was doing everything he should, with the exception of rolling back to belly. So, he went off the charts with head size and pedi recommended he see a neurologist. We did the whole nine yards: Mri's, CT scans, bloodwork maybe....

For the procedure, if I remember correctly, he was given a sedative. He wasn't out out, but sleepy. I was annoyed, because it took forever to get him to sleep, then they did the scan, one of the sensors fell off, they kept fiddling with it, he woke, and we had to do it all over again. And I believe it was done rectally. But the test itself was quick and not bad at all.

In the end, he had a large head. Neuro said he would most likely grow into it at his 18 month appointment. Sure enough, he did. They had us coming back every two months to check the size. I was confident that he was ok.

It's a lot to take in now, but before you have any diagnosis, stay away from the computer, and try not to worry. Easier said than done for sure. And come here any time for questions, vents, progress, etc.

:hug:

 

I am sorry your doctor has you so wigged out! I'd be worried as well. Is this the first you're hearing of this issue from your doctor? There is a huge range when babies hit their milestones so a more relaxed doctor might have something different to say. If you're worried you could always get a second opinion.

Trust your gut. If you think there's an underlying issue then do the MRI. But it seems like you feel like the MRI would only be Personally, I'd skip the MRI for now and see how he does with PT. Lots of kids on here have struggled a bit with low muscle tone and done just fine with PT. If he's not progressing then maybe you have to go hunting for other concerns.

:grouphug: for you, it's not easy to have to deal with health concerns.

 

I should clarify, the sedative was given rectally. And I only have great things to say about EI! Wonderful program for sure!

 

My boys went from the 5th percentile in head size at birth ( born at 35 weeks) to the 98th by 10 months. Their fontanels were still soft, so our pedi ordered an ultrasound to check for hydrocephalus - they also had bulging spots by their ears ( our oldest DS' head size is off of the children's head size chart, so I was pretty sure they were ok, but I was still nervous). They also were not yet crawling or rolling over (again, my older DS didn't roll over until very late, so reassuring, but still nervous). They were fine - still have large heads (hereditary), but all other milestones are just fine! And I agree with Meaghan, EI was great. Both boys were enrolled for not rolling over - they were in it from 12 months to 16 months - at which point they were rolling over, crawling, and walking.

:hug: I'm sorry you have to worry about this. :hug:

 

Calm down! I think your doctor is just over caution which is very good. It doesn't mean your baby has any problem.

Here is my experience: my daugter is a living proof. Michelle was very floppy and her muscles were very weak. At 6 months she couldn't even hold her head strong enough. She had very very bad reflux since 2 months until 7 months. She constantly vomitted everything. She couldn't lift her head up durning tummy time around 6 months. Her legs couldn't straight when we tried to sit her up. I was so worried. But guess from 9-10 months, she started sitting up, crawling, cruising in a month. Also talked talked and talked. So far she is a stronger healthier in both of them. At 13 months, she walked now she runs...her bro just started walking last week and he walks now.

Michelle also has big head too. At 6 months, her head was biggest part in her body. But since 9 months to 12 months, her head and length grow the same speed 75%(9 months)-90(12months)%. however her weight is always 10%. if you count her foot growth, I would say it's over 90%. she is on size 6 now. We are with help me grow program. All the SPCA and nurses say she is very healthy, over active and very socializing, friendly and very smart. If it didn't happen on my daughter, I wouldn't believe. They were born premature at 32w1w. She couldn't survive on her own. She stopped breathing many times at feeding. Now at almost 15 months, she is perfectly healthy and happy. I hope your son has the same case. And our Pedi has been very optimistic. She kept telling me that just give her time. She didn't need and special treatment. I didn't believe her at first. But now I do believe her lol

And my son has hip muscle weakness at 9 months. He couldn't crawl very well at first but he outgrew it in 2 weeks. And now he has left leg muscle weakness. But I would say he is out growing it anytime now. He had hard time to walk. He used to drag his left leg. It was just like his left leg didn't have any power. But in 2 weeks, we have been practicing walking alot everyday at leaste 1 hr/ day. My son has been very decisive. He kept trying and walking. We have been raking them to stores like Meijer, target,.. Let them walk, run... It helps them so much. My son in 2-3 weeks he walks now. Muscle weakness is not big deal. You just need to help him practice.

Also my daughter forehead was not even. I was so worried and kept asking her Pedi send her to specialist. Her Pedi kept reassuring me that she would outgrow it. Guess what she did at 12 months.

Kids grow at their own pace. Give him time to develop. I think there is very highchance your son is just like my daughter. Gl!

 

Thanks, everyone, for the rapid responses -- I so appreciate it.

To answer the questions: the twins were evaluated by the EI people the first week of May, and got glowing reviews. They did mention "loose" joints in their legs but said it was nothing to worry about. At that time, I was already concerned about Jack's performance during tummy time but they said he was absolutely on track and that there was nothing to worry about. They were going to do a follow up in August but I'm going to take your advice and call them to see if they'll come out in July based on the Neuro appointment. Rollergiraffe, yes, it's the first we've heard from anyone that the low muscle tone might be an issue, and that's through six visits to the pediatrician. In fact, the pedi recommended the neuro mainly for the head issue and didn't seem concerned about muscle tone -- just thought that maybe Jack wasn't holding his head up yet because of the weight of it. I've been thinking about that since you asked the question and wondering if this neuro was overly dramatic; wouldn't my regular pediatrician have sounded an alarm before now if there was this big of an issue? Also, after googling (I know, I shouldn't be) I realized that I need to find out if the neuro was diagnosing him as having hypnotonia, which apparently frequently has a neurological cause, or just with low muscle tone, which, as a few of you pointed out, is more common and can be overcome. So I'm going to call and talk to the pediatrician tomorrow about that.

Twinxesmom, I'm so glad they found out what was going on with yours and that she is better now. I guess that's what's haunting me right now, that there might be something significant going on that we need to find out about so we can fix it. Meaghan, thanks for the first-person info about the experience of having an MRI. That's what has me stuck right now -- whether to do it or not, but I'm hoping I'll feel more strongly one way or the other after talking to my pediatrician tomorrow.

Jori, w101ttd, you've made me feel tons better about the head. If the doctor hadn't put the worry about the muscle tone into my head, I would be footloose and fancy free right now! But one thing I've learned over the last six months is that there's always something to worry about...I just need to get better about managing my anxiety and tempering the worry. Hopefully that will come with time.

Thanks again. Your support and advice is so incredibly helpful to someone as anxious as I am.

 

My little guy had some of the same issues. Especially the weak muscle tone. He was just 'floppy' to pick up. We had to support his neck when lifting him for a long time. I think I really noticed the difference between them when they were on the floor. We had him evaluated and went with the 'wait and see' approach. He was always well behind his brother on all milestones including eating. Now at 15 months he is walking and is just a little behind his brother. He is still floppy though. You can feel when you lift him that he doesn't support himself. A dead weight, and he is my bigger boy. We had him re evaluated last month and the pedi said that over time he may become 'less floppy' or he might just be the way he is. We don't have any concerns about him now. Healthy, happy boy. Good luck. I hope you can find answers.

 

Thanks, Mumof5 -- that's very reassuring to hear! I appreciate you sharing your experience with me and I'm so glad everything turned out okay.

 

:hug: My girls had very large heads as babies too (90th percentile). Our pedi never referred us to a neuro and never commented on them sitting "late" (9 months). I didn't even think to worry about it and I'm convinced they didn't sit independently until they were 9 months old because of their enormous noggins! Incidentally they sat, crawled properly (instead of army crawling), pulled up and started cruising within 2 weeks. Once they grew into their big heads a bit, there was no stopping them.

I hope that you take some time to process what the neuro said. Maybe call your pedi (with whom you already have a relationship) and talk to her about it too. :hug:

 

Oh, Leighann, thanks so much for sharing that. It is my hope that that is exactly what will happen with Jack, so hearing from someone who had that experience really keeps my hopes up. Thanks so much for sharing!

 

Another big headed set here. 98% their entire lives. Good luck! I really think/hope it's nothing!

 

Hi there...

Okay, I know I am getting into the game a little late here and pp's have given awesome responses. I would like to add that my Reid had to have an ultrasound at 7 months for his head. I have to be honest, we were waaaay off the chart, like almost off the computer screen off the chart. Our pedi is awesome. She really didn't think that we had anything to worry about but she still insisted I take him in for the ultrasound before his fontanelles were closed. We went in and everything checked out just fine. Turns out he just has a huge head!

With my twins I swear I have turned into a professional worrier. It's hard not to compare two little babies born at the same time. My daughter, too, has always hit milestones first. I just needed to remind myself that they really are two little people growing at their own pace, even though they were gifted to me at the same time.

I really wish you all the best. I'll be thinking of you all.

 

Thank you! I appreciate it. The concern at this point has moved away from the head size and to his developmental delays. The Early Intervention team came out yesterday and agreed with the neurologist, that there are significant delays (he's measuring 2 mos on rolling, for example, and he turns 7 months -- 6 mos adjusted -- tomorrow) and said that what they were seeing could indicate a neurological problem (he favors one hand significantly, for example). We could wait on the MRI but I am just making myself crazy, googling, so we're going to go ahead and schedule it. They sedate him orally, and I researched what they use and it appears to be very safe. I would just rather know than not know. There's always the chance that this is a false alarm, and I would rather know that now rather than worry needlessly for the next three months. Plus, I'm the kind of person who feels more in control when I know what I'm dealing with and can research and prepare for the future, so if it's Cerebral Palsy or something similar, I can start educating myself instead of scaring myself.

I had issues with anxiety before I had babies...they have just exploded since having the twins. And, yes, having one who is right at (sometimes early) all the appropriate developmental stages makes it so painfully obvious when the other is lagging behind. I am seriously considering medication for myself at this point so that I don't spend the next 18 (0r 22....or 30...) years consumed with anxiety.

Thanks again to all of you for your feedback and help. The support helps a lot.

 

I'm really late on a response, but just wanted to give you a great big virtual hug and pat on the back for being such an advocate for your LO. I'm a therapist and work in early intervention and it sounds like you are making some wonderful decisions for your son. Many parents hold off on going to seek medical advice or therapy evaluation for fear of what they will find out, which is completely understandable.. but, as I'm sure you've heard time and time again.. the earlier you can get your LO into intervention, the better. I also want you to know that you are very much not alone in feeling all this anxiety! I'm very much the same way and I think arming yourself with knowledge will only help your little one and your family in the long run. He will do just fine with you as his momma. It very well may be a false alarm and many kiddos come leaps and bounds with early intervention.. I could tell you a million success stories of how far many children come with the help of docs and early intervention. Thinking of you.

 

Oh, thank you so much. Every time someone tells me that early intervention can result in success stories, I feel so much better...thanks for all of your kind words. I sincerely appreciate them.