Low muscle tone, Motor delay

Sarah - posted on 03/03/2010 ( 95 moms have responded )

3

21

0

My daughter, 14 months old, has been diagnosed with a developmental delay, low muscle tone, and lax joints. She is receiving weekly PT now and seems to be getting a little stronger through it. She is able to sit without support, but cannot walk, crawl, bear weight,balance, sit up from a laying position, etc. Our concern is that something more serious might be causing these problems. Does anyone have experience with this? At what point is is appropriate to insist on further testing to determine what is going on with our daughter? (We are currently being told to hold off and see how she progresses.)

Thank you for any feedback that you might be able to offer... this is all unchartered territory for us!

MOST HELPFUL POSTS

Spooky - posted on 06/28/2012

6

0

0

MY DAUGHTER IS NOT WALKING YET INDEPENDENTLY...SHE WALKS WHILE HOLDING ONTO SOMETHING(PIECE OF FURTNITUURE ) AND W.,E BUT NOT ON HER OWN..SHE JUST SEEMS SOOO FREIGHTENED TO LET GO AND START WALKING ...HER PT SAID THAT IF SHE DOESNT START WALKING ON HER OWN BY SECOND BIRTHDAY THEY WILL SEND HER TO A NEUROLOGIST AND THEY WOULD DO FURTHER TESTING..SO PLEASE PLEASE PRAY FOR MY BABY..BECAUSE LATELY ALL SHE DOES IS CRY IN THE THERAPHY SHE IS GETTING SO ANOYED WITH IT..SHE JUST WANTS TO CRY AND IT BREAKS MY HEART..I DONT REALLY WANT TO TAKE HER TO NEURO.. I'M JUST HOPING THAT SHE WILL START WALKING BEFORE HER SECOND BIRTHDAY..PLEASE LADIES IF YOU HAVE ANY SIMILAR SITUATIONS LET ME KNOW..PLEASE..BC ANY ADVICE WILL HELP AND BE APRICIATED.

Antara - posted on 11/15/2012

1

0

0

hi

my baby boy has the hypotonia problem. he cannot move his hand properly. but we started hit PT when he was 14 days old. at first he can move only two fingers but now he has some limited movement. he is 4 months old. actually i am scared on his future. i just want to know whether he can be normal one or no. because doctors do not conclude me anything.

Mechelle - posted on 06/09/2013

6

0

0

I had a healthy pregnancy, with both my boys (6&4). my youngest son has been diagnosed with global developmental delay & hypotonia. at 4 months old I noticed delays such as, he was still sleeping like a newborn. I thought, ok, there are fast children that start there milestones early, some average, some are slower. I thought he was the slow, and takes time. at 8 months, I was concerned of nothing really changing, there was a bit more interaction with the world, the concerns were mobility and verbalization, and his intakes (liquids&food). 11 months old he learned to sit alone in a sitting position, and regressed one morning and refused to sit up. he's hypotonia (low muscle tone) caused him from not being mobile, crawling, walking, standing ( refusing to put weight on legs). at age 2, i had to give the father temp. custody ( by force) and my son's pt, and resources stopped, dillen made no progress, and also lost what he learned, when he was in my care. my son is now turning 4 in july and has been back with me since February. he came to me with being on babyfood, still on a bottle, non- verbal (no first words) and mobility was still being able to sit by himself. he is now within less than 4 months, he is now standing by himself, holding himself up so far, happy, and gets excited, long periods of weight on legs, is eating now table food, but broken up like sheppards pie textures, he has 3 first words, is on a sippy cup, expieriments on different textures from blankies, stuffed animals, toys food, etc.

you need to step up to the plate and research for some resources out there. i was told to hold off. and it put us further behind on finding the right help for him, before he further delayed. you need to find out what all troubles in delays she has, and research into each one of them, and find a specialist for that struggle. (ex. dillen could not put weight on legs, so i asked our pt to contact "motion specialists" and tried different equipment for leg supports, ex. the pony walker. find any specialists like neuro, genetics, hearing, vision, behaviour, physio, speech, occupt, dental, orth, pediatrician.

don't wait do, all the research yourself, it just delays them more with waiting for answers that more likely will be no help forward. your help will be better since you know your daughter the best and can pin point areas of help. delayed children need 3x more interaction, and hands on, by the parent in order to make more progress, the more over- reacting when playing, talking, praising, etc, the more there bodies want to move and try, this actually has worked a enormous amount of progress, just within months.

be loud, be chatty, be touchy, be sucky and spoil her, it works!!!

Deepali - posted on 06/04/2013

1

0

0

hi my son is 2.5 and he is not able to sit, less talk, muscle tone. 2 months back he himself by his hips to crawl (by sitting position) but now he cant. other wise he is active, recognise. please please help me. my contact no 9888800938.(Deepali) i really thankfull to you.

Rgds Deepali

Violet - posted on 11/05/2013

1

0

0

Hello there, I'm new to all of this. My daughter who is 16 months old was diagnosed with low muscle tone & arthrogryposis which is stiff joints. It took a lot of testing and muscle biopsies to figure everything out. She also has a mitochondrial disorder and is in the process for being tested for Neuroblastoma. When Ezmé was first born her right leg was completely turned around and her legs were stuck up by her head. By the second day we finally got them down. We were in the hospital for 2 weeks. She was very floppy. She couldn't move none of her limbs. Up until about she was a year she started lifting her head in her own and grabbing things and throwing things. She still cannot sit on her own but she can sit in a high chair. She cannot roll over, crawl, walk, or sit up. But just her moving her arms and controlling her head is a huge step from when she was first born. She's been prescribed vitamin D and vitamin B complex complete. She has physical therapy every other week. Other than that she's in great health. Talks all the time even yells at me. It's been a long road for my husband and I and especially or gorgeous angel but she seems to be getting stronger everyday. It's really nice to see that some of your children are improving and getting better over time. All the new parents I hope some of my information could help you out or you can try asking your doctor about these disorders. Don't worry to much or be to scared. Babies are a lot stronger than we make them out to be. They are little miracles.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

95 Comments

View replies by

Natalie - posted on 04/04/2014

1

0

0

Hi my son is 3.5, he has been diagnosed with hipotonia and global developmental delay. A really long journey, lots of therapy, courage and patience. Since last year, we have been working very hard to catch up with the milestones. He's walking and he's not talking yet but he is very vocal. Occupational therapy, physio. Lots of speech & language therapy, climbing stairs, climbing obstacles, playing with play dough, lot and lots of soft play, we are really tired as well it is difficult too because I want him jump, run and talk but for how long? It's really difficult and sometimes I cry but I have to work and find out more ways to help my adorable son. The nursery is helping us a lot..... Brain gym or kinesiologists have a good answer for this type of condition. After a while we found out that we are learning every day different ways to help our son. Every day is a miracle after a hard work.

Dessarae - posted on 03/26/2014

1

0

0

I'm actually going through the exact same thing my 7 month old will start therapy next week

Ashley Nicole - posted on 03/19/2014

1

0

0

I feel exactly like u!! My daughter is the exact same!!!♥ I know this was written years ago so please tell what all is going on now!:)

Amy - posted on 12/12/2013

10

0

0

My son has low muscle tone and phelan mcdermid syndrome. I would get blood work done and see a Nero dr

Mozammal - posted on 12/05/2013

1

0

0

I have a baby like you. She is suffering from it. If your baby was born in medical and doctors gave saline injection in baby's head then i think you should test your baby's brain. I think it is "Hydrolysis". You can massage an Indian oil named "Lal Tail" for morning and evening. You should give him calciam according to doctor's advise. call me +8801829494495

Lucy - posted on 10/30/2013

1

0

0

hi there my son is 17 months, he was diagnosed with hypotonia (low Tone ) and hypermobility at 11 months it took a good fight to get someone to see there was a problem , he started PT at 12 months with a few hydrotherapy lessons here and there, I also do baby yoga with him and take him to 2 groups a week for special needs children , he can now roll over , sit alone and bear weight on his arms, no crawling or pulling self up as yet, I went back to my Paediatric Dr and they agreed that Liam is struggling he is now awaiting to have blood work done for genetic testing and MRI scans to head and spine ,its a very worrying time and I am worried sick for his future just remember you can only do the best you can and in time we can wish for a normal future for all our gorgeous babies :) we have got to stay strong for our little ones they need us more then ever , good luck to all on your journey xxx

Tania - posted on 09/20/2013

1

0

0

Hi Yes I have this with my child . She took a very long time to Sit up bu her self to crawl it took till she was nealy 2 to crawl Now is is 29 months and is not walking but dose walk with help like holding her hand and she has a walking frame to help her walk she walks with a car trolly she loves that . But she is not walking on her own . It can take a long time but just got to keep at it and help her she fulls down alot when she not holding on any thing as I gess that is because her mussle are weak and they cant hold her wright . But I also noticed that everything she did as a baby was alot slower than a normal child . But she has came along way she can now self feed her self with some help . She is starting to talk more say more sentaces where she was for qite some time was'nt puting words to gether but she is now . she gets up on her feet very fast no prombum there . she was walking on her own took her own steps when I let go of her hand . Now she is just felling over when I do that is that normail in a child that has low mussle tone ? will she walk on her own? One thing she is doing is toileting very well she now tells me when she thinks she needs to go to the toilet . that part seems to be quicker that walking part . She has a walking frame she holds and walks with that walks with holding one hand in sead of two can stand now and then for a sort time on her own.

Dose anyone have a child with low mussle tone ?

Melinda - posted on 08/21/2013

2

0

0

IS THERE ANYONE THAT HAS A CHILD WITH SUBEPENDYMAL HETEROTOPIA
Basicly scattered gray matter. I know it's rare but I know there are children with this. I would love to talk to someone about this..

Melinda - posted on 08/21/2013

2

0

0

I so know what you mean. I have a 12 year old son that had a lot of problems. I noticed something was wrong when he was about 4mo old. It first started with his left eye would drop. then I noticed he wasn't meeting any of his milestones. Then it was his whole left side of his body that was low muscle tone. He couldn't eat a whole a lot of foods cause he would choke. We went threw a lot of test and every test was normal except eeg. So he was having seizers. long story short they sent him to Mayo's in Rodchester and the neurologist there said that he thought it was CP.Little did we know that was wrong .At the age of 9,he started to have headaches everyday almost. they found a cyst on his brain and a rare brain deformity called subpendymal heteropia which they don't know much about. It is very scary dealing with the unknown just that it day by day.

Brittney - posted on 02/26/2013

1

0

0

my son is 15 months old and was diagnosed with developmental delay and low muscle tone. He has pt and ot and we went so see a neurologist and had some blood work done and i found out he has an abnormality in his DNA. my son cannot walk or crawl yet and doesn't have great balance and doesn't stand. i would recommend you to get a referral to neurologist from your childs dr. and get some testing done or a genetics specialists.

Sarah - posted on 11/12/2012

1

0

0

My son is 2 and a half. He also has low tone. He army crawled at 18 months, crawled at 22 months, and walked at almost 2 and a half. He also has strabismus. We have come a very long way from the time he started Early Intervention. We are now focused on speech. He has few words, but we have a ways to go! Hang in there!

Valene - posted on 11/06/2012

2

17

1

It sounds to me like your describing my daughter Chloe. She is 3 1/2 years old now but she was DX with hypotonia which cause the lack of muscle strength. If you try to hold her on your hip she slides down like a wet noodle. PT is the best thing for this condition and with a lot of work she will conquer. My daughter Chloe could not even sit up by 14 months old. Now she runs through my house and drives me crazy but I love it. Chloe still gets tired very fast because she uses her energy up faster than other kids. She is always hungry and that is because her body needs more energy. I am currently waiting to get her pediatric wheelchair and I cant wait to get it so I can take her out more places. I have used a stroller for such a long time but now her height and weight is a little to much for a baby stroller. She can walk but not for long distances or should I say after a block or two she cant walk no more because she is too tired and her legs hurt. However, most of the time she seems like a happy little girl. Dont worry to much cause a mothers mind can run wild, Time will tell! Good luck to you and your little girl.

Sandra - posted on 11/01/2012

1

0

0

my grandson is having the same problem. He turned 2 in August but he was recently diagnost by Shands Children Hospital in Gainsville, FL as having Gastaut Syndrome which is a type of seizure disorder/epilepsy. He is attending a special school that uses this device that you flat and strap the child in, then you stand it up which puts the child in a standing position. It's designed to strengthen the leg muscles. I am trying to locate one although I know it must be pretty expensive. My daughter is 22 and has the child with her; I am currently in Kuwait but I want this as a Christmas gift for my grandson. Try to contact Shands and set up a consultation visit. They have a Ronald McDonald house around the block for convenience but once you get the appointment you must ask to speak with the hospital Social Worker to arrange living quarters at Ronald McDonald's house. The house is beautiful on the inside and they have sponsors to bring in meals. Good luck and God Bless. Forgot to mention that he had poor vision also which I think was do to him being in the reverse car seat and looking up at the sun. But, I'm only a grandmother.The prescribed him glasses and his eyes are more focused now when I see him on SKYPE.

Ashley - posted on 10/29/2012

1

0

0

Hello, my son is ten months. He will be one on Dec 21st of 2012. My child also has these same problems. He also goes to therapy for pt and ot. They recommended he comes twice a week. He has poor head control. The therapist says that his moter skills are those of a three month old child. This worries me his pediatrician orderd blood work. Which we have to still complete. Im just nervous of the outcome. We have three other healthy children im not sure what went wrong. No matter what Im going to love my child. I just want him to live a happy and healthy life. My friends have babies the same age. When they ask me how he is or if he is crawling yet. It nakes me angry . Am i worng for having thesr thought ?

Sharlene - posted on 09/25/2012

3,896

241

748

Hey, Is she on any special formulas or fluids. And does she attend OT or physio or any speech. Thanks for getting back to me too .

Ramya - posted on 09/24/2012

3

0

0

ok um she was born three weeks early when she was born she could not breath an they could not suckion out her nose so they took her to nic u she was there for three days on oxygen then she came home an could not suck right an still could not breath so from there she was in an out the hospital they did a surgery on her throught called supergalaplsie the floppy air way gave her a feeding tube a g tube eng tube she had that for three years now she off that learned to walk last year or so she gets these infection the hospital say an it stays with her for six months she had namona one year it scared her lung an she stay with a cough runny nose low muscle tone poor weight gain etc

Sharlene - posted on 09/23/2012

3,896

241

748

@Ramya, Are you part of a feeding clinic and have they suggsested a nose feeding tube or a gastro Xray where they can see if she is degisting the food properly . My daughter has GDD'S and Hydrocephalus' fluid on the brain' . major feeding issues where she chokes and gags sensory issues and very low weigh at 2.5 yrs old at 10 kgs . she has a nose feeding tube and get montiored monthly with fedding and weight . Can you give me more info about your daughter.

Ramya - posted on 09/23/2012

3

0

0

hi yes my daughter is three an she is failer to thrive poor weight gain poor eye sight cant talk all ways have a chest infection an they did a test for cysticfibrous an all them syemptoms she has but test was negitive now what should i do

Spooky - posted on 09/12/2012

6

0

0

maryam,sorry to hear about your babys problems,,,i posted earlier about my daughter not being able to walk,, but thank god she startedaugust 17,,,which is 3 days before her second birthday ..and we took her to neurologist just to make sure she doesn't have neurological problems but the neurologist doesnt think anything is wroong neurogicly,, and starting next week her therapy is once a week... so she's getting better ,, all the doctors we have been to think is because of her vision because she's far sided on one eye ,,and near sided on the other and her left puppil is a bit smaller..so i was just suggesting maybe check her vision too.....good luch hopefully everything gets bettr...

Maryam - posted on 09/12/2012

3

0

0

pl. help me if any mother experiened that her child does not walk independently. what should we do further as we have already gone through the following treatments.I want to give you brief history of Hadia.



Hadia date of birth: 14-07-2007 (05 years & one month age)



She has been diagnosed Cerebral Palsy (CP) and she is under treatment of Paediatric Neurologist since last three years. They have suggested for following treatments



TREATMENTS

01. Continued Dosage of Baclofen which we have stopped now due no result

02. Continued physiotherapy which is still going on

03. USE OF LFO SHOES

04. Botox Injection



Her history is as follows



HISTORY IN SHORT

01. She is a premature baby born in 07 Months

02. Shortage of Oxygen (Assumption)

03. Stayed 11 Days in Hospital including 04 days on VANT and rest 7 days in incubator

04. Till the age of 08 Months her growth seems to be normal with all organs working properly and she was gaining weight tremendously

05. She doesn't crawl, walk or sit independently

06. No other abnormality seen



PRESENT CONDITION

01. GOING NORMAL SCHOOL

02. VERY TALKATIVE

03. VERY INTELLIGENT

04. VERY SENSITIVE

05. WALKS CROSS LEGS WITH ANKLE HIGH AND TWISTED POSITION

06. Lack of concentration on things of non-interests

07. VERY RESPONSIVE



Her recent MRI Brain & Spine reports are attached. & she is taking medicines recommended by Peeds Neurogist Dr. Najam Zafar Sheikh.



1. Risperdal drops (0-0-1drop at night)

2. Valium/ diazepam 5 mg (1/4- 0 - 1/4)

3. TRYPTANOL 25MG (0-0-1/2 at night)

4. LYSOVIT SYRUP (1-0-0)



Hadia is absolutely normal in all aspects except walking & she has a little bit problem in writing. Please friends,I request you to help me. May Allah give you reward for this. My life has become very tremendously difficult as I am a mother of Hadia who does not have her both hands by birth. But I spent my life with dignity & took life as a challenge. I spent life very bravely but now the challenge given to me by ALLAH has broken me, People around me laugh at me, I have completely broken, but still I am fighting with difficulties just because of m

y daughter haadia.

Letisha - posted on 08/20/2012

1

0

0

Hi I know that that was posted a while back but my daughter is the same way at 14 months.What happened to your baby girl is she ok..... today any advice that you have is welcomed.

Maribel - posted on 07/17/2012

2

0

1

Hello my name is Maribel and my Son Mason has PVL. Too the parents that heir children that has PVL please send me a message of your children who is older then mason and what else we hav to prepare for in the years to come along. I'm a parent that shit and wonders what went wrong and I'm always kicking myself anyways please keep me posted I would love to hear from the parents and I'm hoping your children has come a lot further in life. Again please contact me..........Buy the way mason is only 15 months old.

Lynne - posted on 07/12/2012

1

30

0

hi my son has global developmental delay also corpus agenisis collesum and low muscle tone he never rolled over and couldnt walk until he was 2 he didnt start talking until the was just over 2 and even now he cannot talk properly and he is 6 this year i insisted on all tests being done at 18 months and was diagnosed at 2

Caroline - posted on 07/02/2012

868

296

38

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frquent body tremors, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc tec. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how its made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!
I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I.
http://www.navig8.biz/LifeStyle2

Laura - posted on 07/01/2012

22

0

0

http://www.ourhealthnetwork.com/conditio...

check this out my son has this with both feet,, his right foot is worse than left this has delayed him in walking and sitting,,,
+ extra vit D for him ,,,
hopefully by the time he turns 2yrs old it can be corrected but it can be life long problem if not caught early with any child

Hong - posted on 06/30/2012

3

0

0

Dear, I think that your daughter is doing well. Do not compare to other kids, each kid is different and individual, do not be too scared. When your daughter is crying a lot, you need to take care of her sleep also. Some kids may not sleep well if they are too scared. If they do not have good sleep, they cannot perform a good job during the day.
As a mother, no matter what happens, we should not give up, we must full of courage, tomorrow will be better if we are doing a good job today. Seeing neurologist is not a scary thing, the doctor will not eat us up. They will only help to identify issues only.
If planning for future babies, do consider to have cordblood banking, as stem cell might be able to save cerebral palsy babies according to research. And always buy full insurance for the newborn as we do not know the future.
Continue to do the best and pray to the God. Wish all the kids are happy and healthy.

Spooky - posted on 06/29/2012

6

0

0

I THINK I GOT ALOT STRONGER TOO WITH MY DAUGHTER. HER DOCTORS DON'[T THINK THAT SHE HAS ANY NEURO PROBLEMS..THEY ACUTUALLY DID A TEST TO SEE IF SHE NEEDS TO GO SEE A NEUROLOGIST AND SHE DOESNT. EVERYTHING ELSE SEEMS PRETTY GOOD..SHE IS TALKING ALOT..SHE SEEMS TO UNDERSTAND EVERYTHING..AND WHEN IT COMES TO PRONOUNCING WORDS SHE ACTUALLY TRYES TO PRONOUNCE AND SAYS IT RIGHT TOO..I KNOW I SHOULD WORRY BUT IT IS SO HARD SEEING ALL THESE 10 MONTH OLD BABIES CRAWLING-WALKING BY 1ST BIRTHDAY AND ALL THE PEOPLE ASKING ME WHY ISNT SHE WALKING YET..AND PEOPLE LOOK AT US SO WEIRD...SO I JUST HOPE TO GOD THAT SHE WALKS BY HER SECOND BIRTHDAY..BC IF SHE DOESNT THEY WANT TO DO MORE TESTING TO SEE WHATS WRONG..

Michelle - posted on 06/28/2012

73

33

6

My son is now 4.5 and he still cannot walk independently. I think he will one day but I think it is still a year or two away. He has significant hypotonia in his midsection. He also has some balance issues but we are not sure if the balance issue is neuro related or due to poor hip stability because of the hypotonia.

I would not worry too badly about your daughter yet if she is pulling up and cruising furniture unless she has other neuro symptoms. If she does then I would not wait and I would get an appointment with a neuro.

Whether your child walks or not, speaks or not, or even moves or not the most important thing is to give your child the best quality of life you can and continue to hope and sometimes fight for the best (care, doctors, and therapy) for them. I do that each day I breathe for my children. That is all any parent can do and all that you have control over. Dealing with disabled children I have learned a lot about myself and you all will too. You can do it and you are stronger than you will EVER believe!

Hong - posted on 06/28/2012

3

0

0

May I ask, is she walking now? I want to hear motivating life stories from others. I wish all the kids are happy and healthy. One more thing, please continue to take good care of yourself and your lovely kid.

Karen - posted on 05/10/2012

90

93

9

stem cells help with any condition !! I am a Patient Representative for Beike in china. I can help you with any information you need to know. Hospital stay for you , your hubby and child is free in the hospital for the duration of the stay. Occupational / Physio therapy is done twice a day every day, with accupuncture, chinese pressure point massage and then the stem cell infusions. Its a holiday as well as treatment in china . You allowed to go shopping with your child , as everyone is allowed out the hospital to site see as well as visit places while treatment is been done. Email me for pictures of the hospital and info on stem cells
karenkzn@telkomsa.net
karen Muller

Karen - posted on 05/10/2012

90

93

9

Hi everyone. This is a dialogue of a little child who has stem cells in china. Dont wait for your doctors to tell you about china. ITs HAPPENING ALREADY !!!
EMAIL ME FOR MORE INFO ON UMBILICAL CORD STEM CELLS AND HOW TO BE ACCEPTED FOR TREATMENT. THEY HAVE DONE OVER 10 000 PATIENTS ALREADY AND THEY ALL COME FROM USA, UK, SA, AND ALL PARTS OF THE WORLD .
karenkzn@telkomsa.net
Dylan was the second foreign infant to go to China for Beike Biotech's cerebral palsy treatment. He first came when he was eight months old and then returned fourteen months later for his second treatment. The first treatment reduced his tone while the second helped him to gain strength and balance. During that treatmnet, he was also able to say his first word: 'again'.

NAME: Dylan Teskey

COUNTRY: Canada (Toronto)

AGE: 8 months

DIAGNOSIS: Ischemic Brain Injury - MRI on July 15, 2005 showed "no sign of hemorrhage or stroke with hyperintense signals in both hemispheres at the grey/white junction and involvement of internal capsule and corpus collosum, consistent with generalized ischemic brain injury."

REASON FOR COMING FOR TREATMENT: He had an unknown chronic condition (before he was born) that caused him to have a lack of oxygen to his brain.

START OF TREATMENT: March 30, 2006

BEFORE THE TREATMENT: Dylan was generally very healthy other than the damage to his brain. He did not need any assistance for eating and has no trouble swallowing. He did have a little bit of seizure activity but it was controlled by medication. The major thing that needed improvement was the increased tension in his arms and legs. His arms were very stiff and held closely to his body. He also had trouble opening his hands. His hands were naturally in a fisted position, but occasionally alternated between that position and an open one. Upon effort, however, the tension increased and he could not complete his task. This was the most troubling to the parents.


AFTER THE TREATMENT (4/26/2006):

Dylan has less tension in his arms and started to reach out grab things. You could stretch his arms over his shoulder and he would not complain. He became a much more active baby. He started to turn on his side by himself. Before the treatment, he would stay quiet in his stroller and his mother would not have to strap him in but afterwards since he started moving around a lot more, she had to in order to ensure he did not fall out. When he returned his occupational therapist was “impressed”.

5/10/2006 (Email from Mother): Dylan had a session with his therapist in his hometown. She was positive and was impressed with the degree of movement in his arms in their ability to reach his ears. She also commented that his hands were more relaxed and had more movement. She also made a comment that he was more floppy than before probably related todecreased tone in his trunk and neck. This is a good thing, but Dylan will now have to be retrained on how to use his muscles to hold up his upper body instead of using his high tone to sit."

6/29/2006 (Email from Mother): Dylan's doing great. He's doing some wonderful things that we all see as big improvements. He has now been holding a toy and waving it or shaking it. Before, when a toy was placed in his hand he would just drop it. Another thing is he is 'playing' with toys. If we bring a soccer ball up to him, he will lift his arm and push it away with the top of his hand. He hadn't done any playing before so now this is really new stuff. He has also made a lot of improvements in his walking. If I hold up his arms in front of him (before treatment he couldn't even lift his arms or it would be really uncomfortable) he will make attempts to pick up his feet and move forward. He does better some days than others but we are thrilled.

9/7/2006 (From Dylan's Blog):

It's been a very busy and great summer. I thought that I should get an update for our little man. He has been doing so well lately. We both feel (and we said this today) and he starting to look so much better. He seems to be on a second wave of improvents . Here are some of the new improvement that we have seen with Dylan since our trip to China:

He is still increasing in activity. His legs kick very strongly and he can grab and move an object with his hands better. He's actually getting harder to change on the change table as his legs kick so much. He was a lot easier to dress before!

He is starting to stand with arms supported on a short table. I place him to a table and arrange his legs to ensure that he is positioned well and then I just place my hand on the small of his back to stabilize a bit. Today, he picked up his hand to play with a toy instead of using his hands to stabilize himself.

He is working on taking steps while I support and help him move. His thighs are still a bit tight so he tends to cross his legs while walking but he does initiate steps some of the time. Vocalizations and communication - he is really trying to make new sounds. I can see him try to mouth out the letters but we are still working on it.

He does this kissing sound with his tongue out that he uses to get our attention and we play a lot with that one by doing it back and forth.

Seizures - Still has a few but a lot better.

Hands have been more relaxed lately and he opens hands to grasp a little better. His thumb is rarely inside his hand now as it was before.

Eating - he is eating solid food a lot better. Before, he couldn't handle a little chunk in his food and would choke but now he is getting his tongue working side to side and eats all solid food now. He doesn't bite
off food but will take it off a spoon quite well.

Crawling - If I lift up his chest his legs propel him in a crawling position. We need to work on his arms, though, to allow them to take a bit of the weight and help him to crawl.

Sweta - posted on 05/10/2012

3

0

0

they did the genetics testing, endocronologist did a few other blood works, gi did the stool test and other blood works for thyroid etc. everything cam eback normal. waiting to do the mri now.

Spooky - posted on 05/10/2012

6

0

0

After an Xray way done the doctor told us that its low muscle tone. And they also Did all kinds of blood work to make sure there is nothing else wrong. Hopefully this helps. An pls ladies keep updating.

Spooky - posted on 05/10/2012

6

0

0

They did an MRI and and an xray. And found nothing wrong and they thought that she might have a cephalus i dont know if I spelled it wrong but its water on brain bc they thought her had was enlarged. But she just has alot of hair and she comes from a family with head not so tiny. But the reaults came back negative. She doesnt hAve thAt but she does have a smaller puppil in her left eye and her PT doctor thinks she might be delayed bc of that. Because she has better vision in rifht than left eye. But after 6-8 half hour sesions of PT she made her first few steps so the doc. Thinks it working which made me really happy. Sometimes i even ask myself is my baby ever going to walk becausr its not that common babiea dont walk at 20 months, but thank god its getting better. Were still doing PT twice a week.

Karen - posted on 05/09/2012

90

93

9

Do you know that stem cells have helped many kids with disabilities ?? karenkzn@telkomsa.net

Karen - posted on 05/09/2012

90

93

9

Spooky, what else did the MRI scan say ?? As they cant diagnose low muscle tone through a MRI scan

Karen - posted on 05/09/2012

90

93

9

Hi there Sarah. Have you had an MRI scan done to see what else could be the problem? As this would diagnose a condition . You are your childs advocate, insist on having tests done !! ANYTIME IS APPROPRIATE TO REQUEST TESTING !! Does your daughter have jumpy eyes ,nystagmus ?? Does she have vision ?? email me on karenkzn@telkomsa.net
karen

Sweta - posted on 05/09/2012

3

0

0

hi

I am currently sailing in the same boat, my daughter 14 months too and diagnosed with developmental delay, low muscle tone and lax joints. exact same thing, pt once a week, ot twice a month and di once a week. she cannot walk or stand or sit up by herself yet. all tests done came back normal and the genetics guys want to test her to see if she has the Rubinstein Taybi syndrome. i see that your daughter is now over two. how is she doing now? any inputs for us would be highly appreciated!! :)

Spooky - posted on 05/07/2012

6

0

0

HELLO ALL..MY DAUGHTER WAS BORN WITH 3 HEART MURMORS THAT CLOSED UP AROUND 9 MONTHS..AND ALSO SHE HAS A SMALLER PUPPIL (LEFT) EYER THAT WE ARE PATCHING AND SEEING A DOCTOR EVERY SIX MONTH..WHICH SHE IS GOING TOHAVE TO WEAR GLASSES PROBABLY WHEN SHE TURN TWO..SHE COULDNT BEAR WEIGHT UNTILL SHE WAS OVER A YEAR SHE NEVER SHOWED ANY INTEREST IN CRAWLING OR WALKING...AROUND 15 MONTHS OLD SHE STARTED WALKING AROUND FURNITURE..SHE IS NOW 20.5 MONTHS AND IS STILL WALKING AROUND FURNITURE AND WHEN HELD BY ONE HAND...SHE HAS BEEN IN PT FOR A MONTH NOW AND I GUESS IT'S STILL EARLY TO SEE IF ITS HELPING..SHE HAD AN MRI AND CT DONE AND THEY TOLD US SHE HAS LOW MUSCLE TONE..EVERYTHING ELSE WAS OKAY.SHE TALKS REALLY WELL.SHE SEEMS REALLY SMART.UNDERSTAND EVERYTHING AND TRYES TO REPEAT AFTER US.....SHE JUST SEEMS REALLY SCARED TO WALK...ITS SO FRUSTRATING..I JUST WANT TO SEE MY PRINCESS WALK..AND HOPE ALL YOU GUYS KIDS GET BETTER TOO...GOOD LUCK AND PLEASE TRY TO KEEP US UPDATED...I WILL TOO

Michelle - posted on 05/02/2012

73

33

6

We did all of that too Julia and we found nothing. Don't know why Joseph is hypotonic with major balance, mental and motor delays. None of the specialists can give us answers. All tests have come back ok but there HAS to be something wrong with the brain. I just wish I could figure it out because the specialists will not.

Julia - posted on 05/02/2012

2

1

0

My son is nearly 3 years old and cannot walk he wants to but his body wont let his balance is poor and has speech delay. We waiting for oppointment for brain scan and hes having genetic blood test. I wouldnt wait coz test and oppointments take for ever.

Julia - posted on 05/02/2012

2

1

0

My son is nearly 3 years old and cannot walk he wants to but his body wont let his balance is poor and has speech delay. We waiting for oppointment for brain scan and hes having genetic blood test. I wouldnt wait coz test and oppointments take for ever.

Nicki - posted on 04/15/2012

3

6

0

Hi Sarah,
My son has all the same symptoms plus more and was diagnosed at 2 with a genetic condition c17q21.31 microdeletion. Hope you get some answers

Caty - posted on 04/15/2012

2

0

0

Lisa Sipes - Your child sounds so much like mine... My son is a very big child for his age (18 months, 3 ft. tall and 37 lb's) - Since he was 10 months, I was told that he's probably having difficulty sitting/standing because of his size. Well now he's 18 months and while he's been sitting for many months and crawls with no problem, he's not crusing yet and the PT doesnt think he'll walk for at least 4 - 5 more months. We have an appointment for an MRI later this month however; his dr. doesnt think the MRI will show anything... The PT seems to think he'll grow out of it but after reading all of the comments on this site, I'm starting to get very very concerned that this could be more than what the Dr.'s are saying. My child isn't speaking very clearly either but I understand that's part of the muscle weakness and once we strengthen those muscles, speaking will be easier. Please keep in touch, I'm very interested in what your child's diagnosis... The neurologist mentioned hypothyroidism and said that is what he will be looking at with the mri - I'm assuming because he's such a big baby.

Ellen - posted on 03/15/2012

99

5

5

Well Do it know it ur daughter see what it is. If its just low muscle tone my daughter has it but didnt have problem with meeting mile stones. Just a little warning My daughter has a weight problem at 14 an it is because of her muscle tone. I think u should try to get her to swim it works every muscle in her body and it fun. You will have to do this for as long as u can.

Lindsey - posted on 03/10/2012

4

0

1

I hope this is a current and active thread because I just need to vent... My son was diagnosed with low muscle tone about 2 weeks ago... He young at 2.5 months old and only reason was noticed is because I pushed for something to be done about it since he had torticollis.... (I am a teacher therefore I know milestones they are suppose to hit) Still waiting on some test results but some came back negative already... I'm hoping it is due to torticollis at birth and lack of movement during utero... I feel like doctors are making issues where there is NO issues... Such as last two weeks his feedings have been off due to them picking and probing him he use to eat just fine now I feel like I force him to eat... I feel like he never gets a break, he is already doing physical therapy twice a week (no thanks to my doctor I had to push for this as well and basically did on my own). Anyone else have this problem? I feel like he can do so Much and the stuff he can't dO they make huge deals about. His pt is already saying how a big improvement he has made in just 2 weeks he is stronger and stronger daily... He can lift head on stomach no for periods (even tho hates due to torticollis), he grasp and throws toys already, smiles all the time, coos and talks all the time, fights me with legs and arms, bares weight on legs when hold him up now, tracks and can semi roll

Over... He does soo Much but still feel like they pick and probe him... My husband doesn't get it like all men he thinks everything is ok he is just slighly delayed... It's our first btw, I'm a very strong independt person but I am just at my breaking point I guess... I just needed to vent Becuz my husband wants to keep this to ourselves til we 100% know what is going on so I feel like I needed to vent and see if anyone had any advice or give me hope :)

Tara - posted on 02/29/2012

1

0

0

Insist, demand, and then insist some more.my 3 y ear old daughter has been diagnosed with developmental delay with low muscle tone. My daughters dr said the same thing " lets give it alittle more time" that was for the not crawling at her 1st bday and same with at her 2nd bday with no walking.she did end up crawling at 13 months and walking @25 months. She went a whole year with no therapies that could of helped her along. There is a reason for why she has low muscle tone and not able to bear any weight. They need to find her a diagnosis. Like my daughter she so far has seen a neurologist and a neuromuscular dr. we are now waiting for blood results which takes a month. As crazy as this sounds but sometimes low muscle tone has to deal with how food is broken down. Ask for a metabolic and genetic test.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms