COME TELL US YOUR STORY

Kathleen - posted on 06/03/2009 ( 21 moms have responded )

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hEY EVERYONE COME SHARE YOUR STORY AND UPDATES :D

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Srimathi - posted on 07/22/2012

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am having 9 months girl baby having mild hypotonia(not diagnised)...she undergone emg ncv ank cpk tests having normal reports...she can sit and creep and trying to crawl...my ped said her developments are satisfactory jus go on with occupational therapy alone

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Dineo - posted on 07/25/2012

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my daughter is turning 9 months on the 29 of july and i am worried she started teething at 4 months and her teeth are now showing and she is teething again and she is struggling to crawl because she is big and heavy at 5 months she weight 9 kg should i be worried

Dineo - posted on 07/25/2012

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my daughter is turning 9 months on the 29 of july and i am worried she started teething at 4 months and her teeth are now showing and she is teething again and she is struggling to crawl because she is big and heavy at 5 months she weight 9 kg should i be worried

Kathryn - posted on 02/05/2011

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my son damien was diagnosed with hypotonia at birth (floppy, limp, barely gasping for his first breaths.) the drs never told me much about his hypotonia or what it was, he stayed in the nicu for 3-4 days. finally last week we met with the neurologist who checked him over and said he has a mild case and is only slightly behind they want another ultrasound on his head and to check on him at 6 months to see how hes developing so now i get to play the waiting game again.

Faith - posted on 01/06/2011

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Hi Christy, thanks for the information, will delve into them. It is so difficult as moms to see our little ones like this... We are currently waiting for results to come back from genetic testing. At the same time, we have started our sessions at the ABM centre. It is still early days but we have already seen some difference in her after her session with Anat, but only time will truly tell. Hope you are well!! :)

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To Faith Berry, your daughter Sarah sounds exactly like what my son Anthoney was like when he was little. We ended up finding out he had hypotonic Cerebral Palsy which only afffects 10% of cases, so it's harder to diagnos, and he also has a form of Autism. He too had severe hypotonia when he was little and couldn't eat anything because of the gagging. He would vomit when he would get upset too and we discovered that that was caused by a form of Asthma called cough variant ashtma meaning that it's sympoms are only a slight cough or vomiting instead of wheezing. You may want to ask about those conditions. Our boy was also born with a heart condition called Pulminary stenosis and a severly enlarged heart that beat into his stomach. We have two other boys who also are hypotonic and have autism spectrum diagnosis and all have sensory intergration disorder too.

Faith - posted on 09/30/2010

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Hi everyone!!!

Our daughter Sarah has severe hypotonia and is described by her PT and OT as being profoundly hypotonic. We did not pick up on her condition until she was about 9 month old, when it bordered on being unusual that she has not learnt to sit yet. Since then, we started on PT at the child development centre. It took a few months' of screaming before she settled into the groove of PT. She learnt to sit with support when she was 14 months, bum-shuffled when she was 17 months, did downward dogs at 21 months. She is turning two in two weeks' time but has in the last month finally learned to crawl/bunny-hop! It is quite a delightful sight and seeing her move made us smile like a Cheshire cats on the inside. She is such a fighter and we are infinitely proud of her!

She is lacking in fine motor skills but we don't stop trying. We get monthly speech therapy session from EI services but at the mo, she hasn't really said a proper meaningful first word. We did get some babbling a while ago, which has stopped. We believe she is having a developmental leap in her physical movement so everything else has taken a back seat.

We went through all the hoops of seeing a neurologist (MRI - inconclusive), endocrinologist (unusual thyroid test results - still inconclusive). Next up, geneticist at Stanford, no doubt to be followed by a list of blood tests. Also, we are asked to take her to see a GI specialist and to a feeding clinic as she gags and throws up her food frequently. We should get her to see a pediatric ophthalmologist to get her eyes checked. All the doctor/specialists visits never fail to overwhelm us but we keep going. At the moment, we have no diagnosis and the therapists who have seen her have very often commented on how profound her hypotonia is and that it is rarely this severe.

She still does not sleep through the night and wakes up a few times. On really bad nights, a few times a night. We tried different sleep methods but nothing really worked. If she cries too hard, she will end up being sick in bed, and even possibly choking on her own sick, which is not an option for us. Teething is no help either, I guess. There was a possibility that thyroid issues could have resulted in poor disturbed sleep but as that was inconclusive, we could do anything about it. We are hoping and praying that she would ride over the worst and eventually sleep better. Fingers crossed!!

Recently we came across the Anat Baniel Method which has certainly roused our interest and we are waiting to see Anat Baniel in person in the next few months and are hoping that we can see some improvement. Will keep you posted!

Thanks for reading!

Kimberly - posted on 09/09/2010

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My daughter is 18 months today- a former IUGR 32 weeker weighing in at 2 lbs, 13 oz. She has been diagnosed with hypotonia and global delays. Her April MRI showed benign fluid on her brain and some white matter damage. She has been receiving PT and OT since 3 months old. (She was in the NICU for 3 months after an open PDA sent her into respiratory failure. Vent caused damage to her lungs, she has mild BPD and a 3-4 mm ASD treated with Lasix.) Also she was born early due to my placenta previa via c-section.She is not crawling or walking yet, nor can she get herself into the the sitting position herself. She can sit unassisted - IF I place her there. And she scoots around in her walker. She loves to be in the standing position. Her legs are very strong it is her upper trunk and arms that are weak. She has recently begun taking Anat Baniel Method lessons from a practitioner here in Houston and we have seen more progress in the last 3 weeks than we have in 15 months with PT. Her recent movements make me feel that crawling isn't far off. She has always struggled with weight gain and takes Boost Kid Essentials with added Duocal. She will eat purees but is not great with textured foods yet. Working on it. She usually gags. A new friend on another website- Inspire- has suggested a chiropractor. I'm looking into that as well but will be sticking with the ABM lessons. If you haven't heard of it here's the website- watch some of these videos:



http://www.anatbanielmethod.com/

Tania - posted on 06/12/2010

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My 10 month old daughter has hypotonia but no know cause or other problems she is slightly behind on her gross and fine motor skills. Anybody know any good excerises or things that will help her start crawling?

Madeleine - posted on 05/25/2010

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My son sees Dr. Cohn at the Hypotonia Center at Johns Hopkins. It's a great place to start when you don't have an answer for the symptoms.

Tanya - posted on 02/18/2010

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My 2 year old daughter Olivia has mild-mod hypotonia. She was born with the cord around her neck and initially limp, but seemed to recover and they never expressed an concern about it. I brought up the fact that she felt "floppy" to me. Her head control was ok, but her trunk/limbs seemed pretty loose...she offered no resistance to motion and has always slumped in the carseat, stroller/highchair. She has bad constipation and choked alot early on with solids...also took almost til a year old before she took any significant amount since she would barely open her mouth. She did not roll back to tummy until 10 months, crawled at 11 months, pulled/cruised at 12 1/2 months and finally started walking at 14 1/2 months, though her gait has been awkward. They kept blowing me off about it and now FINALLY she qualifies for PT, but probably needs surgery to lengthen her heel cords since they are too tight. If only that had listened before and addressed her toe walking (a compensation for her low tone...she walks on her toes with her hips externally rotated and when she does put her feet flat down, hyperextends her knees and throws her hips off). She will finally start PT next week and be fitted for AFO's if they can even stretch her feet enough to make adequate molds.
SHe still chokes at times from putting too much food in her mouth. Took a while to start talking but talks up a storm now (sometimes hard to understand though). Cognitively, she seems fine....knows her colors, counting up to 12, knows some letters, follows directions, does 9-12 piece jigsaw puzzles. No diagnosis at this time. Not sure if the cord at birth has anything to do with it.

Katy - posted on 02/10/2010

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Our three in a half year old daughter is hypotonic and has many other medical concerns. She is currently undergoing a series of tests to see if it is linked to any other condition.

Kim - posted on 01/21/2010

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My 5 yr daughter was born by emerency c-section for a prolapsed cord. She had severe hypotonia. She started physical therapy at 2 months old and has still getting it today along with speech and occupational therapy. She still has mild hypotonia today but if it wasn't for the great care she received from our local hospital Infant/Child Development program I don't know if she would have made such great strides.

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ok my son Luke was diagnosed with hypotonia at 4 months he looked like a ragdoll so he had to see all these other drs and they have found that he has a heart murmur and a problem now with his left eye and something with the muscels not completly forming in the stomach my husband says its his abs so he has a lump . So luke just started crawling now and he crawls with his head tilted to the right side it looks so painful ( hes now 13months old ) also for 5 months or so he had to wear a helmet to try to correct the mishaping of his cute little head. So here we were this sept just had a new baby girl another preemie and this one had to do a long nicu stay and during this stay the nicu dr came up to me and asked me a few questions about my meds i was on during my pregnancy . and the weird thing was i have a seizure disorder and they think that this hypotonia might be cause by it . Now I feel so bad that my 2 babies have been put thur this cause of me. So now I have to get the best treatment for the kids just to fight this since I might be the cause.

Karen - posted on 09/18/2009

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hello my 3 children have many of these symptoms and they have been diagnosed with ehlers danlos syndrome there are many differnt types they have type 2 i hope this helps we saw a rhumatologist after having speech, physio, ot and being diagnosed with hypotonia and he diagnosed them with ehlers danlos syndrome

Jessica - posted on 09/15/2009

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Zev "graduated" from PT in June. He's very clumsy and falls down a lot, but he's finally walking. He started PT when he was 5 months old. In the beginning he couldn't even lift his head, so it was very helpful for us. I hope it will be helpful for you, too. I'm figuring that we'll be back in speech therapy soon if he doesn't start speaking, but I'm crossing my fingers. I'm currently trying to wean him, but he's very very opposed. Does your child have any other conditions/diagnosis?

Kathleen - posted on 09/15/2009

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oh yeah he has had speech and OT for over a yr now and just got PT started. He breastfed till 1 then he just stopped. He was on the bottle for a good while now I have him on a sports spout from Nuby. Just changed therapists cause nothing was happening anymore with progression and she was getting to pushy for my liking.

Jessica - posted on 09/15/2009

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Zev had trouble eating. He would choke all of the time and wouldn't even attempt chewing. Also, he could breast feed but couldn't use a bottle or sippy cup. The pediatrician sent us to a speech therapist to work on the feeding issues. A couple of months of therapy and he was able to eat and drink (from an open cup- still doesn't have the strength for most sippy cups) well enough to stop treatment. If you haven't tried therapy, I would definitely recommend it.

Kathleen - posted on 09/15/2009

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My son is 17 months also. He doesn't talk. He says "thank you" sounds like ticka. Sometimes says Mama. That's it thought. Hardly eats. His diet is mostly whole milk all day. He has four molars but can't chew with them. If he can't chew his food with his front teeth it stays in his mouth till I take it out.

Jessica - posted on 09/15/2009

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Johns Hopkins in Baltimore has a center for hypotonia (research, diagnosis, etc). I haven't looked into it personally (yet) but it might be helpful. Here's the website-
http://www.hopkinsmedicine.org/geneticme...
My 17 month old, Zev, was diagnosed with hypotonia and gross motor delay at 4 months of age. So far testing hasn't revealed anything for us. Physical therapy and speech therapy (to work on feeding issues) helped greatly. I guess now it's kind of "wait and see" for us. Just curious- does your little one speak yet? Zev has a few words but that's it.

Amber - posted on 07/14/2009

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We are having serious problems trying to get a diagnosis. We have had tons of tests, seen multitudes of doctors, and spent more money that I care to think about to get a bunch of question mark answers. What I do know is that my 14 month old daughter has torticollis, plagiocephaly, reflux, hypotonia, hyperelastic skin, hyper reflexes, dysphagia, and a heart murmur. We started this process when she was 4 months old. Any thoughts? I would appreciate anyone's comments who have any experience with any of these.

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