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Srimathi - posted on 08/07/2012

how is lilith now....is there anybody to share things about an older hypotonic baby...


how is lilith now

Lucy - posted on 03/19/2011

HI, Iam also new to this site, my son tyler 3yrs old this past Nov. Has Hypotonia, Aperxia of the face and alot of other set backs, still waiting for answers, waiting on dna blood work thats takes 4-8 weeks, same issues as you face, we have him in pt and sp 4 days a week, with CHOP here in Philly and DCIU, early intervention program which is a train wreak, they have no idea what they are doing... i feel lost and helpless myself, being a mom i feel i have to fix this now. I have my own health issues that makes it very hard for me to be driving all over 4 days a week, plus during PT he wont do it unless i do it with him. In my condition makes it a chanllage to keep up, but i do it for him, My dr. says if i keep it up i'll in the hospital agin for more surgury and other thngs that wont be good.. iam at a loss on what to do. so if any one out there has some answers for me i am open to anything. Thnak
Lucy

Lucy - posted on 03/19/2011

HI, Iam also new to this site, my son tyler 3yrs old this past Nov. Has Hypotonia, Aperxia of the face and alot of other set backs, still waiting for answers, waiting on dna blood work thats takes 4-8 weeks, same issues as you face, we have him in pt and sp 4 days a week, with CHOP here in Philly and DCIU, early intervention program which is a train wreak, they have no idea what they are doing... i feel lost and helpless myself, being a mom i feel i have to fix this now. I have my own health issues that makes it very hard for me to be driving all over 4 days a week, plus during PT he wont do it unless i do it with him. In my condition makes it a chanllage to keep up, but i do it for him, My dr. says if i keep it up i'll in the hospital agin for more surgury and other thngs that wont be good.. iam at a loss on what to do. so if any one out there has some answers for me i am open to anything. Thnak
Lucy

Kathleen - posted on 03/13/2011

awesome Jessica, I am so glad that some one was able to help you. Please keep us updated on the findings and how your baby is progressing :D much love and prayers.

Kathleen

Jessica - posted on 03/13/2011

Stacey,

You have no idea what it means to me for you to have posted these comments Friday. You have unknowingly and blessedly played a role in a very momentous day in our family's lives.

We learned Friday, during a meeting with a geneticist in Chicago, that it appears my daughter may be experiencing symptoms associated with a hereditary condition known as Malignant Hypothermia (generally known as an allergic reaction to anesthetics, but can also be associated with muscle delays), for which I also have.

My family and I had always assumed that MH can only affect those who have it in the operating room when encountering anesthesia. The geneticist informed us that in fact, there are some strains of MH, in conjunction with a condition called Central Core Disease, that can cause hypotonia, a floppy sensation in the limbs, developmental delays resulting in crawling, walking, standing, etc. being difficult for the child.

We had never thought to look towards MH as the cause of the issues she has been experiencing, for which were initially discovered over a year ago with a diagnosis of merely low-muscle tone.

Since my post earlier, above, we have visited with an optometrist in our community three times and each time he informed me my daughter's vision was fine, if we gave her a prescription for glasses it would be so minor it would not be worth it, and her lazy eye and vision issues would resolve themselves as her overall muscle strength improved. He refused to patch her eye, operate, or do any other extraneous measures on her eyes, since he felt it would not be beneficial.

I have felt all along there was something wrong with her vision. Within the last year she started having 'staring spells' which we thought might have been seizures, but they only lasted a short time, less than a minute, and an EEG in December did not show she was having seizures.

We are visiting with a neurologist this week to obtain further information and analysis on these staring spells.

But, during our visit with the geneticist Friday, he strongly recommended we see a pediatric Opth. to determine what is actually going on with her vision, given everything else we're finding out.

We returned home from a very momentous day of discoveries and pre-diagnoses, to find the alert of your post in my inbox. Of all days for you to respond, in the year since I first posted, you happen to come across my post on Friday and responded with such helpful advice on your own experiences with your daughter.

I can't tell you how much it meant to me and my husband. I am an individual who believes in signs, and believes everything happens for a reason, and you and your own child's experiences, are a part of that. Thank you so very, very much for commenting and providing us with this little bit of information, that seems to match up uncannily to our own daughter's vision issues.

We will take this information and the name of this condition you mentioned to the meeting with the opth. in the future, and hopefully this will push him towards making a similar diagnosis.

Thank you again and God bless you and your family. We Mothers have to stick together!
Sincerely with much gratitude,
Jessica

Stacey - posted on 03/11/2011

Hi, Jessica.

Just read your post w/ regards to some of the visual issues your daughter is having. You mentioned that sometimes it doesn't seem as though she is seeing you.
My daughter is 17 months now, hypotonic, & also has some visual issues, among other things. While her L eye has some anatomical abnormalities, her R eye is anatomically fine but does not always seem to register what she is seeing. My opth. has tentatively diagnosed her with cortical visual impairment, which basically means that her eyes respond appropriately to stimuli (light, etc.), but that her brain may not be receiving the message correctly (i.e., the message is garbled, hence she doesn't always "see" even though her pupils may respond to light, etc.). This ultimately results in what seems to be best described as inconsistent blindness, but it is different for each child. A hallmark sign is inconsistent recognition / tracking.

You can google cortical visual impairment, or mention it to your opth., to see if the symptoms fit. We're visiting the National Eye Institute (at NIH) to have a genetic-opthmalogist check her out, since all neuro & all rounds of genetic / metabolic testing came back normal. With regards to the lazy eye, we've been patching my daughter's eyes since she was about 4 mo and it seems to have helped the drifting. Her vision, overall, seems to be improving.

Hope this helps, and good luck with the therapies. They truly work wonders. ;)

Stacey :)

Stacey - posted on 03/11/2011

Hi, Jessica.

Just read your post w/ regards to some of the visual issues your daughter is having. You mentioned that sometimes it doesn't seem as though she is seeing you.
My daughter is 17 months now, hypotonic, & also has some visual issues, among other things. While her L eye has some anatomical abnormalities, her R eye is anatomically fine but does not always seem to register what she is seeing. My opth. has tentatively diagnosed her with cortical visual impairment, which basically means that her eyes respond appropriately to stimuli (light, etc.), but that her brain may not be receiving the message correctly (i.e., the message is garbled, hence she doesn't always "see" even though her pupils may respond to light, etc.). This ultimately results in what seems to be best described as inconsistent blindness, but it is different for each child. A hallmark sign is inconsistent recognition / tracking.

You can google cortical visual impairment, or mention it to your opth., to see if the symptoms fit. We're visiting the National Eye Institute (at NIH) to have a genetic-opthmalogist check her out, since all neuro & all rounds of genetic / metabolic testing came back normal. With regards to the lazy eye, we've been patching my daughter's eyes since she was about 4 mo and it seems to have helped the drifting. Her vision, overall, seems to be improving.

Hope this helps, and good luck with the therapies. They truly work wonders. ;)

Stacey :)

Jessica - posted on 02/23/2010

Thanks, Kathleen. I will do just that. And I'll try and get a hold of the doctor today and see what they say. Perhaps they'll just say wait and see how physical therapy goes, I don't know. The point is, is that with the schedule of Early Intervention, it might not be until the end of March before we even get into the physical therapist for the first time to have her evaluated. This whole process feels like I'm trying to move a boulder up a hill without knowng how. Great fun! THANKS again so much for your time and help this morning. I really appreciate it. My brain has been split in two these last few days. I work outside the home, but my brain has mostly been on this, thus, I'm not doing my job very well!

Kathleen - posted on 02/23/2010

Yes, there is ALOT to find out, I am still learning things about my son and the condition. We just got denied for SSI, they said that by the standers of the USA my son is not BLIND nor disabled. Yet he has three therapists that he's had since he was 6 months old. I can't work because my son get violent, his frontal lobe is atrophied and his temporal lobes are underdeveloped. He has trouble controlling anger and frustration. My son NOT even 2 years old has balled up his fist and punched me in the face several times. Yet because a doc. hasn't seen and documented this, SSI won't except it and see my son as fine. I would call the Ophthalmologist, and give them this new info.

Corinne - posted on 02/23/2010

My daughter started wearing glasses at 11 mths..she is not too young. They have ones by Microflex or try www.solobambini.com..they have come a long way. As I said she may only need them for the eye turn until that is corrected.

Jessica - posted on 02/23/2010

I know, Kathleen. It makes me mad too. I was told by Early Intervention yesterday that two out of three therapists need to approve her before she can receive services. So, we're sort of waiting on when they are available to see her. March 10 is the only day in March where the speech therapist will be there, otherwise we have to wait until April. Same sort of thing with the physical therapist. They are only in the area twice a month, so it's when she's in town, basically. And even though we don't want anything to be wrong with our child, of course, we also want her to get the help she needs so she basically has to "try out" to be a special needs child. Isn't that ironic? My husband has dreams of her playing soccer, since he's a soccer fiend, and scoring goals and playing on world cup teams, etc. And now here we are hoping our child makes the "special needs" team merely so she can receive help. It's definitely a change of pace. So, yes, even though the Easter Seals therapist said she had hypotonia, she might not have it "bad enough" to warrant their services. So, then what? I don't know where we go from there.

Corinne, my daughter does cry when other people pick her up, but I figured that was merely stranger issues. She will look back towards me and I say, "You're okay, you're okay" and she seems to calm down. I never thought that maybe she just wasn't seeing the people. That's an interesting train of thought. The eye doctor did not dialate her eyes, but he did hold lenses up to her eyes and determined she was neither near sighted nor far sighted and that any help they could offer her now would just be glasses, and she's too young for those anyway. So, basically, they came to the determination they couldn't do anything for us.

Do you think I should call our doctor, I mean the report from Easter Seals on their diagnosis of her was faxed to them so they have it, but should I call them to see now that we have this diagnosis, does it change our course of treatment? Prior to a diagnosis of hypotonia, our doctor was thinking that if she didn't make progress with physical therapy within a month or two, that then she would do an x-ray and see what they could find out. Perhaps, with what we know now that they would do some more tests sooner. I know they had said with her age they wanted to wait a bit before she was put in contact with the radiation.

Ohh, there's so much to know and find out!

Kathleen - posted on 02/23/2010

Hello Jessica, Your daughter sounds like she's coming along beautifully, NOT down talking her disabilities, so please don't think I am. My son will be two on St. Patty's day. He still has balance issues, he trips on air, still doesn't eat much more than anything cracker like, he eats crackers, goldfish, bread, rice, spaghetti sometimes, he LOVES salad like lettuce, carrots and black olives, but he can't chew them, he'll put them in his mouth and then 15 mins later I will see they are still in there, I have to fight him to get them out cause he so desperately wants to eat them. Oh and he drinks like 5-6 10 oz bottles of Whole milk everyday. That's why he's not emaciated. I try to hold off with the milk as long as I can, but when he's practically begging me for food I give in. I try so much food with him, and NOTHING. It's quite frustrating. He still has OT, PT, and speech. I will pray that when your child is evaluated they will see that just because your child is not as sever as some are, that you child still needs the help. I believe that any person that shows any signs, no matter how great or small, that they need some help to get in the right direction, should get the help. I can't stand the OH your just at the line for needed our help so...... sorry. You know WTF, sorry makes me so mad.

Corinne - posted on 02/23/2010

Also ask for OT that can help with eating too...at least my OT helped with feeding, drinking, utensil using.
Did she have her eyes dialated and a real vision test to see if she needs glasses? My dd would light up when I was around bc she knew it was me by my voice but she would almost have a scared look on her face when others would get close to her..she couldnt see them or knew from the voice who they were..she cant see up close. Now with glasses she is so much more smiley to people.
Def tell your pediatrician about her "not seeing you". Does she just stare off into the distance? Maybe see a neurologist too. You might want them to look at her too. make sure the MRI and EEG are ok.

Jessica - posted on 02/23/2010

Thanks very much, Corinne. And to answer your question, yes my daughter does point. For whatever reason, she takes great joy in pointing her finger at me for me to kiss it, or she'll point at our cats and dogs, or at her bottle on the counter, etc. I can tell that she can see, especially when she lights up when she sees someone in particular or sees the animals (she just loves her pets), but on the other hand there are times where I feel like she isn't seeing me. Where her eyes just seem glassy and she doesn't seem to register me. I don't know. I get kind of an eerie feeling when her eyes are like that, like she's looking right past me, but is not really seeing me.

We have an appointment March 3 to meet with Early Intervention and be interviewed and get her medical history. March 10 she's to be evaluated by a speech therapist and a developmental therapist. We've yet to schedule a physical therapy appointment. She was recommended for speech therapy to help her eating, because her speech seems to be coming along just fine. She'll say "Mama" and "Dada", "ba-ba" for bottle, Yeah, yes, no, hello, bye-bye, nigh-nigh. And we're working on "cat" and "dog". : ) . I'll see if I can find another eye doctor in town here to see her. Perhaps if they have a diagnosis of hypotonia to work with that will set them on the right path, and will connect the two issues. Thanks very much for your help! I appreciate it!

Corinne - posted on 02/23/2010

Hi Jessica...welcome! I know it can be a very emotional journey but from the sounds of it you are right on track with getting your daughter what she needs. You are great mom.
It is wonderful news to hear your dd is sitting very well..that is a huge deal. That is a sign that her brain is communicating and her "righting" reflexes are working. My dd didnt sit up well til about almost 2. She is 3.5 yrs now and is crawling on all fours and pulling up but still cannot stand alone or walk yet. They say it takes double the time from sitting to walking..so if a typical child sits by 6 mths they walk by 12..so you can figure out for your dd. I recommend going to see another opthamologist...if your dd eye is "lazy" or just a constant turn in...you need to address it now...my dd had eye surgery for her eye turn and that same week pulled herself up and started pointing..does your dd point? if left not even with the other eye later to fix it will only be cosmetic. eye glasses can fix the turn and if not then surgery may be needed. or eye patching.
Get going on getting her the therapies she needs..It shouldnt take but a month to get started or the first evaluation. you do not need a diagnosis to start..My dd doesnt really have a true diagnosis..all tests came back normal.
So call today and get her evaluation apt...you want to get her started ASAP..
Good luck
Corinne

Jessica - posted on 02/23/2010

My daughter, Lilith, is 13 months and was just diagnosed with Hypotonia a few days ago. This is all very new to me and I don't know much. Right now, our daughter can roll over very well, but she cannot get up on all fours, cannot pull herself up. She holds her head up with no problem, she sits very well, and handles toys pretty easily. She has difficulty eating solid foods and chokes at nearly every meal. The only foods she doesn't choke on seem to be creamy foods, or 2nd foods. 3rd foods with the chunks of food she simply cannot handle. We'll get a little ways into it and the gagging starts. Usually we have to take it one chunk of food at a time, which takes forever. We're slowly making our way into table food and she seems to enjoy pasta, rice, mashed potatoes, etc. but again, in very small chunks.

We have yet to start physical therapy or speech therapy, though both were recommended. We first have to meet with Early Intervention and they have to evaluate her for services. This seems like such a slow step-by-step process. We don't know how this happened, whether it is genetic, or whether there are any other underlying conditions.

She also has a lazy eye in her left eye, where her eye turns inward. She had an eye exam when she was 11 months old and the eye doctor could not detect anything, so perhaps that's nothing. I'm hoping it's nothing and that'll come around. I noticed one of the mother's above mentioned her daughter's eye issues, which made me think of it.

Reading about the children above and all the problems they have makes me both anxious and thankful. I'm anxious and worried after reading these stories that there could be more diagnoses to come. But, I'm also chastising myself because my child doesn't have as nearly as many problems as these children have, and we should be thankful for that. There is so much to be thankful for, and things could be so much worse than I'm making them out to be. I've been driving myself over the edge with worry and anxiety, thinking we did something wrong. That this happened because we're new parents and don't really know what we're doing.

What I'm gathering from these stories is that there are degrees of Hypotonia, and judging from the issues my daughter doesn't have, that perhaps she has a slight form of it.

I'm glad I found this group though. I hope, I don't know, I guess I hope that we can ease each other's burden.

Corinne - posted on 08/29/2009

My son, Clark, just turned two. He has hypotonia, sensory intergration dysfunction, silent aspiration, apraxia, right side weakness, upper mouth deformity, and global developmental delays. He has been in speech therapy since he was a couple months old, at first for feeding issues. He spent 11 months on a feeding machine with an NG tube. He is also in OT and PT and earlly intervention. They don't know why he's the way he is. We've had all the genetic testing, MRI's, EEG's, CT scans, blood tests, etc. All comes back normal. It's so frustrating not knowing what exactly is wrong or why. Anyone else with a child with these problems? I'd love to chat!!!

Liz - posted on 06/05/2009

We are just starting down this road. My daughter Dylan was not meeting her motor skills milestones. At 7 months my Dr. refereed her to ECI (Early Childhood Intervention). They said they think it is genetic Hypotonia. We haven't gone through all the testing yet. They seem to think that physical therapy will help. We are doing therapy 1 -2 times a week. They are hoping she will show some progress pretty quickly. If not we are going to start genetic and neurological testing. I feel like I am slipping into this crazy rabbit hole. I thought she was fine. I think that everything she does is huge! I am such a proud mommy when she sits up or helps me feed her. I guess I am still in denial. I can't wrap my mind around it.

Amanda - posted on 05/19/2009

My little girl eats great they didn't let us start feeding her baby food until she hit 6 months they wanted us to see a neurologist before they let us start to feed her the neurologist didn't think she had anything mentally wrong... but we still have to wait on the MRI... she reach up at me this morning.. that made me happy.

The eye doctor says that she has something called nystagmus they said the the is a chance that she will be legally blind when she gets older. he said that she is far sighted now but he won't give her glasses he said that she is to young to give glasses our OT lady said her niece was 6 months old when she got her glasses and i have a cousin that was 6 months old when he got his glasses but this eye doc said he wants her to be able to talk to him before he gives them to her. but what if she does have a speech problem she might not be able to talk to him until she is a lot older and I read that if are exposed to far sightedness for to long that it can make the nystagmus worse..( Nystagmus is when the eyes twitch back and forth) it's not that bad right now actually if your not looking for it you probably wouldn't notice it.
I'm glad i have someone to talk to about this. I don't know anyone that has this condition or has children that have this condition.

Kathleen - posted on 05/18/2009

I was never told a reason either. We have heard mostly that is a genetic thing. Along with the hypotonia, my son also has an almost not existent frontal lobe and under developed temporal lobes. He does speech and OT. He's now 14 months and walking. his speech is way delayed and he is still eating pureed foods.

Amanda - posted on 05/18/2009

My daughter was diagnosed with Hypotonic... she is 6 months old he just started holding her head up which i am so proud of her for that she is trying so hard.. you can tell she gets mad at herself because she can't do what she wants to do she does physical and OT therapy 3 times a week... she is responding to it... the doctor said that if she doesn't start talking by 9 months that she will start speech therapy..
I keep thinking it was something that i did while i was pregnant i did everything that you are suppose to do while your pregnant. I just don't understand... the doctors really haven't explained anything to me about it..

Julie - posted on 03/12/2009

hi my daughter lauren was diagnosed with hypotonia at 9 months she is now nearly thirteen,she has delayed developement and is doubly incontinent,she goes to a special needs school where they have an ot ,pt and speech therapist on site and she is coming on great at the moment she has hydrotherapy weekly which is helping a lot but makes her very tired,no one knows why she has hypotonia all tests came back as normal,but i was told she had the worst case the doctor had ever seen,but everyday she seems to get a little bit better,it is very hard at the beginning but trust me it does get easier,lauren has surprised the doctors by how well she is getting on,but she is really happy and has lots of friends.if you would like to chat anytime, im usually on facebook somewhere, julie xxx

Kathleen - posted on 03/12/2009

MY SON AS BORN HYPOTONIC, HE ALSO HAS OT AND SPEECH WEEKLY AND SOON WILL HAVE A PT. I WOULD LOVE TO CHAT WITH YOU AND SHARE OT AND SPEECH THEORIES. MY SON HAS RESPONDED VERY WELL TO HIS THERAPISTS.