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Old 12 June 2018, 22:29
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Hypotonia?

I am searching for any information, and or personal experience any board members might have on Hypotonia. About 6 months or so ago, my wife and I started noticing a difference in our baby boy, primarily lack of leg movement, trouble staying seated, and a weak neck. When I would pick him up, he felt like a cooked noodle, limp as could be. We were not really sure what was wrong with him up until the 9 month old checkup, when the pediatrician advised us that he had a mild case of hypotonia, and that we needed to force more time on his tummy to help strengthen his neck/back muscles so that he would start figuring out how to crawl.

Fast forward 3 months, one year checkup a day or so away, and my little guy has shown minimal improvement. We have added some hydro therapy on our own in the backyard pool, and also some tummy exercises on a yoga ball combined with the time on his tummy on the floor. I am concerned somewhat that the Doctor didnít send us to a specialist 3 months ago, when she diagnosed him with hypotonia, so he could get started in physical therapy and help ensure his legs are going to work correctly.

I would very much appreciate any guidance/and or advice from anyone that has had any similar experiences. I feel so helpless seeing him wanting to move, but unable to. I appreciate any feedback in advance. Thank you
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Old 12 June 2018, 23:43
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Just11b,
My wife and I have been working with children with medical issues for the past 9 years, (10 kids), we are not medical professionals. We have been providing home schooling, life skills and PT. When I read your post it seemed like it was describing CP. I am WAY out of my lane but I will say that more testing to determine what is actually causing the problem may be needed. My wife and I have seen prescriptions given to the children, my personal non-professional opinion is the children needed hands on with parents on deck to work with the child,(like you're doing). If he's medicated it is very difficult to observe what the child is doing vs what the medicine is doing. Please take this as anecdotal experience not professional support.
Take care

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Old 13 June 2018, 01:21
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Check out this web site do a search for Hypotonia. or Hypopituitarism, I looked it up an the information sounds like what you are stating.

Best wishes an good luck.

http://www.childrenshospital.org/

Last edited by wildman43; 13 June 2018 at 01:34.
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Old 13 June 2018, 02:20
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As a parent myself, I deeply sympathize with you. I have nothing to offer other than good wishes and prayers for you, and perhaps a bit of general advice. Don't take no for an answer with the medical professionals when you press for more opinions and further tests/diagnosis. Your greatest fight may very well be in the constant pressure you put on the doctors. If/when you get more tests/documentation that can be judged, you get a copy of it for yourself. Then you can use that information to seek out the best in the country, send it to them, and get their opinions on what path to take.

I had a scary situation with my first born. Took the copies of the scans and emailed them to doctors around the US. Many of them were willing to talk to me for free.

God bless you, your wife, and your little one.
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Old 13 June 2018, 07:59
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Prayers for you and your family.

IMO, you should force the issue and get your child in PT.
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Old 13 June 2018, 08:15
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Hang in there, prayers sent, and the best to your son.
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Old 13 June 2018, 08:21
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Nothing worse than that helpless feeling. Praying for your son.

Agree with getting him into PT ASAP.
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Old 13 June 2018, 08:38
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Quote:
Originally Posted by just11b View Post
I would very much appreciate any guidance/and or advice from anyone that has had any similar experiences. I feel so helpless seeing him wanting to move, but unable to. I appreciate any feedback in advance. Thank you
Get a second opinion as soon as possible.

My brother's older daughter had minimal muscle tone but the pediatrician offered nothing that helped (mostly just vitamins). By age 2 it was getting extreme, so they got a second opinion. Allergy testing revealed gluten intolerance. They corrected the diet, and she began improving. Today she's 16, does Tae Kwon Do, is thriving at school, plays the flute, and is engaged as a Civil Air Patrol Cadet.
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Old 13 June 2018, 10:54
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Nothing worse than that helpless feeling. Praying for your son.
Amen. Prayers sent!
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Old 13 June 2018, 11:12
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Good luck to you and your wife 11b. One research area that could yield some info from is the prevalence of Hypotomia in Downs kids. My reading seems to indicate there has been more research on this aspect of the condition than any other. Maybe it can glean some useful info that may apply to your little one even though he is not a Downs child.

Praying for the little man to get through this.
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Old 13 June 2018, 11:25
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Sorry about that.

Last edited by ramzmedic; 13 June 2018 at 11:26. Reason: Double tap
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Old 13 June 2018, 11:55
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Thank you to everyone for your kind words, and prayers. I am having trouble typing this out, and holding it together at the moment. I returned from our appointment with the doctor not long ago, and she has put in an urgent referral for childhood neurology, because she said by just sending up the referral normally, it would take about 2 to 3 weeks before finally being seen by a specialist, and also she was concerned due to the lack of improvement since last visit, so hopefully we will get an appointment post haste. Next he will see neurology for blood work, and some MRI's. The doctor has also referred us to physical therapy, which we also pray will be sooner rather than later.

Best case scenario at this point, is a mild form of CP. Worst case, the doctor said something about metabolic issues, which have a very grim future involved with, and that we should avoid researching the worst case scenario at this point, due to the negativity that will come along with the reading. I wonder if I somehow am responsible. I am so scared, and lost.

Again, thank you to everyone, the opinions mean a great deal to me. I look to SOCNET for most of my guidance. Thank you.
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Old 13 June 2018, 12:42
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Just11b,
The medical appointments sound just right, be/stay involved and informed.
Things needed; patience, (when needed), family and friends. There is no reason to think about anything but moving forward. Children are a blessing, they can teach us many things, we simply need to learn, observe and be involved.
Take care,
V/R
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Old 13 June 2018, 12:45
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Originally Posted by just11b View Post
I wonder if I somehow am responsible. I am so scared, and lost.
As you were.

Focus on supporting your wife, and getting your kid to the doctor. Wondering who is or may be or might be or might have been or could have been responsible does no one a bit of good at the moment, and won't change anything even if you were.
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Old 13 June 2018, 12:54
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As you were.

Focus on supporting your wife, and getting your kid to the doctor. Wondering who is or may be or might be or might have been or could have been responsible does no one a bit of good at the moment, and won't change anything even if you were.
QFT here.

Your mission right now is family care. Make sure you are taking care of your wife, your child, and most importantly, yourself. AAR in something like this doesn't really do that much good, especially if you're focusing on "blame." The only reason to worry about the cause is in case you guy want to have more kids.

Grace, peace, strength, and wisdom to you all.
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Old 13 June 2018, 12:55
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Brother, don’t beat yourself up over the “who is responsible” thoughts. You will more than likely never know, if in fact you are at all. I went through the very same thing. My son was doing all manner of things which led us from doctor to doctor and eventually neurologists. After multiple visits over multiple months, we received a diagnosis of Tourettes. It was one of the hardest things I ever had to go through. I paced back and forth through my home for months wondering what I did or my level of responsibility for his being diagnosed with that. Well, 16 years later, I still don’t know and never will. But, to this very day, my son still remembers that fact that I was always there for him, supporting him, and standing side-by-side with him through whatever trials we had to endure for the moment.

As you were told, don’t read the Internet about it as your mind will find it easier to believe the worse instead of the best case scenarios. Stay strong for your wife and son because that is what they need. Remember, being strong doesn’t mean that you don’t cry at times and feel like there is nothing you can do. Nothing can be farther from the truth. You can be his support and guidance. His strong tower where he is able to find peace. Like I used to tell my son, “You can worry when you see me worry. Until then, no worries!”

You are simply feeling what any “good” father would feel. We are here as a sounding board. If you need to talk, PM me. Know that my family and I will be praying for the absolute best outcome for you and your little Warrior.
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Old 13 June 2018, 13:11
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Try an contact Shriner (sp) Hospital, They do great work.
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  #18  
Old 13 June 2018, 13:24
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It appears the referrals seem to be appropriate at this point. The neuro specialist along with the testing ordered should reveal a more accurate diagnosis for your boy. Best wishes to you and yours; I am sorry that you have to go through this.

One piece of advice I can offer is to make sure you are your own/your child’s best advocate. Do not hesitate to seek second opinions, do not hesitate to ask for clarification on testing or results or treatment plans. Do not hesitate to be involved in your child’s care, ask about treatments and options that may not be mainstream if nothing else seems to help.

In most cases, pediatric practitioners are generally pretty good at being empathetic and understanding the immense emotional toll taken on the parents of an ill child. However, you must be vigilant in the advocacy of your son from this point on. As others have said, don’t beat yourself up about what happened before; this is NOT your fault.

Godspeed, Just11b.
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Old 13 June 2018, 13:32
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Follow your heart, love your son and life will get better.
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Old 13 June 2018, 13:37
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Quote:
Originally Posted by kosty View Post
Get a second opinion as soon as possible.

My brother's older daughter had minimal muscle tone but the pediatrician offered nothing that helped (mostly just vitamins). By age 2 it was getting extreme, so they got a second opinion. Allergy testing revealed gluten intolerance. They corrected the diet, and she began improving. Today she's 16, does Tae Kwon Do, is thriving at school, plays the flute, and is engaged as a Civil Air Patrol Cadet.
This, from my perspective as a healthcare professional, I would immediately become the squeaky wheel. Also, get a second and maybe even a third opinion. These developmental years are critical for later life quality. I cannot offer any advice on the specific condition, other than to share something I learned from a pediatrician at Mass General. He said "Pediatrics is one of, if not THE easiest medical specialty to enter." Word to the wise.

Oh, and best of luck, keep us apprised.
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