By Angie on Wednesday, July 26, 2000 - 01:22 pm:

My son has just turned three and he has HMS and hypotonia, he has the verbal capacity of an 18 month old baby. He understands when spoken to and can follow directions, he just seems to have problems forming some of the sounds necessary for him to be able to communicate with me, I have done everything i can think of to help and encourage him, but we seem to have come to a stand still. His speech therapist doesn't show much interest other than to point out that he has "behavioral problems". His behavioral problems are pure frustration that he can't communicate his needs/wants to anyone. Has this happened to anyone else with his conditions and if so what was helpful or not so helpful? I would really appreciate any input that anyone could offer us.

By Bianca on Thursday, July 27, 2000 - 04:36 am:

I can only remember that I once read something about an EDS type which has as one of the main symptoms also Hypotonia. Maybe it will help to look for that.
Sorry I can not be of big help.

By Beth on Thursday, July 27, 2000 - 04:43 am:

Have you tried Sign language? My daughter has Down Syndrome and Sign really saved her all of that frustration. It sounds like you need a new speech pathologist.

If you have any questions email me.

By Cindy on Sunday, July 30, 2000 - 10:16 pm:

My son is 3yrs7mos old, he is just recently showing progress in his speech. I actually just posted a similar question to the mailinglist. We are in the process of setting up an new speech evaluation - the 1st one was a disaster. We've seen several Drs and the only answer I have for any of his speech or gross motor skill problems finally came from my Rheumatologist- hypotonia & hypermobility. We have an appt. w/a new Neurolgist to see if we can get any more answers.

Meanwhile, I can tell you that at 3yrs he finally said Mommy, then at 3 1/2 he sang me HAPPY BIRTHDAY - the whole song. He wont repeat it of course, but he's talking more & more all the time.
I suppose the hypotonia could be responsible for his speech delay, hopefully we'll get more info soon.

By natasha on Wednesday, August 02, 2000 - 01:36 am:

oh wow! that is my son too. he turns four in october and has hypotonia and HEDS/hypermobility syndrome (i do too). his baby siter four months bhas blue sclerae and clicky wrists but certainly isnt as low tone as he was. he was a "floppy baby", crawling at 14 months, walking at two.he cannot yet run or jump. trunk low tone and instability/mobility affect speech (voice/breathing) and fine motor -- you need stable trunk to perform fine motor skills as well as good grip, etc and good finger control).
hypermobility specialist said low tone and ligamentous laxity go hand in hand - while the tone has improved with physio the ligamentous laxity remains.
we saw a neurologisdt at great ormond street childrens hosp at two years who thought my son had "ligamentous laxity and a separate speech disorder"....(the LL was what led us to the HEDS/Hypermobility diagnosis) but i wonder (reading similar stories) if the lang difficulties arent related?
certainly many kids with hypotonia have problems with talking ie articulation and there is evidence (UK EDS group survey) that in EDS population speech and lang dificulties are higher than in regular population.
but my son seems more apraxic -he just cant get the words out yet understands pretty well. and some days he says things perfectly, never to be repeated!
he has around 40 word approximations eg buh for bus and some makaton signs.
we have been seen by top level wolfson speech nd lang specialists who haven't a clue as to to my son's speech and lang difficulties other than to say its a combinaton of low tone, maybe something neurological (apraxia) plus some mild internmittent hearing loss from fluid in middle ear, plus ?????
e-me directly any of you if you want to chat - tash@lacobrown.freeserve.co.uk

natasha

By natasha on Wednesday, August 02, 2000 - 04:19 am:

sorri i meant baby SISTER four months old not the baby sitter!!
she bears weight on legs which my son didnt do till 13 months old but does seem a bit bendy and i am thinking mobile in hips....we shall get herchecked later.she does NOT have the feeding problems my son had ie weak suck, problems with textured, solid food etc. this bodes well for speech.


natasha

By natasha on Wednesday, August 02, 2000 - 04:25 am:

another thought - is this a boy thing? boys are more likely generally to be on autistic spectrum, be dyspraxic etc.
my eldest brother who we suspect HEDS/HMS didnt talk til three. talks ok now tho!
i know i was very quiet child who hardly spoke...
(cant stop me now tho)
natasha

By Robin on Thursday, August 10, 2000 - 10:37 am:

My niece is 4 months old and we suspect she has EDS. Skin biopsy was done and we are awating results. She cannot suck or swallow and has had a feeding tube inserted through her nose. She is severely hypotonic. She also had a mild stroke at or prior to birth, clonus was a result. It has been very difficult getting a proper diagnosis, several doctors have seen her and seem stumped (Larson's syndrome was also mentioned). Has anyone experiened this in order to shed some light?

By Suzanne on Tuesday, September 05, 2000 - 04:41 pm:

My son had low muscle tone and a speech delay. He began speech therapy at 2.5 years is fine now. His speech therapy stopped when he was 4.5 years. If your speech therapist is having problems with him it may be that she is not used to dealing with children or maybe she needs to get to know him better. Our therapy took place at a school and my son seemed to think that he was special because he was the only one in his "class". He also has cleidocranial displasia with the low muscle tone and I think they told me these are related. I'm not sure anymore. He is strong now, age 10, and talks non stop. Don't be discouraged.

By Shelley on Wednesday, September 06, 2000 - 06:50 am:

I have just discovered that I have hypermobility of all my joints and I am reading over these messages from everyone and I am getting concerned for my daughter. She had delayed speech and her articulation is pretty bad. She is 6 years old now and getting 1/2hour speech 3x/week in school. I took her to get evaluated at Childrens Hospital at age 3 1/2 and she tested 90% unintelligible speech, her comprehension was fine. I have been told this could be do to chronic ear infections or possible appraxia(family history of speech delay as well).I have been told that she has "behavioral problems" by some therapists, frustration at not being understood, I believe. She is getting better every day.The more I learn of HMS the more concerned I am.I have well over half of the symptoms, some serious and some mild, but I am more concerned for my daughter ,she also displays many symptoms.What type of docter would be best to properly diagnoss HMS, if it is or not?

By Bianca on Thursday, September 07, 2000 - 12:12 am:

The doctor type who knows most about HMS are rheumaticians. Maybe you can find a pediatric who is specialised in rheumatics

By Shelley on Friday, September 08, 2000 - 09:34 am:

Thank you ,Bianca, I have set up an appointmet with rheumatician and just saw my orthopedic who ordered an ANA test to have for that appointment ,he felt it was the next step and agrees with the HMS diagnosis from physical med Dr. and aknowledged by my neurologist. Just waiting now, am also concerned about the possibility of Lupus because I have kidney problems chronic UTIs and inflamation of the entire tract the causes enlarged kidneys.Know anything about this side effect?

By Martha on Thursday, December 21, 2000 - 10:09 am:

Hi, I am reading all the messages with interest to learn more about my hypermobility/hypotension. My nephew is almost three. He has been slow to pronouce his words correctly, though has great comprehension. He was diagnosed by an excellent D.C. speech therapist with speech dyspraxia. She is working with him twice a week and he has improved greatly. I stayed with him for several weeks in October. I recall that the speech therapist said that the nerves around the mouth and cheeks need to be stimulated. She recommends that he eat a lot of chewy foods, cut meat into thick strips that he has to bite off of, and use an electric toothbrush. Use fewer of foods that don't require a lot of chewing. Also, use peanut butter because it sticks to the mouth all over stimulating movement. I hope this helps. Ask those speech therapists about speech dyspraxia and get second and third opinions! My nephews improvement after just a year with the therapist is incredible.

By Julie Khalouian on Friday, December 22, 2000 - 10:11 am:

My son is three and a half, and has received language therapy for speech delay since age 22 months. He was only recently diagnosed as having
hypotonia of the oral motor aparatus. Speech therapy will not be successful unless a large component of it is comprised of oral motor therapy. My son has had intensive therapy designed to strength his jaw, tongue and mouth muscles over the past year. Various exercises including hornes, licorice, peanut butter, tongue depressors have been utilized. At two years old, he presented with an expressive language level of a 10 month old baby. Now at three and a half, he has a delay of only 6 months. His progress has been remarkable. His therapists have taught him other ways to expressive himself, to alleviate the frustration, while aquiring language. They have utilized an ABA method which introduces consistent and positive rewards for his responses.
He also suffers from Hypotonia of the hands, which have inhibited his fine motor skills and a desire to play with toys. Only now that the language is almost caught up are we realizing that he is quite lagged in his gross motor abilities. Your message suggests that you need to look into another therapist for your son. We initially had a language therapist who characterized our son as "stubborn". She failed to understand the effort it took him to make a simple vowel sound. He responded by refusing to comply. We immediately changed therapists, and the positive reward system worked. My heart goes out to your family, and take courage in the knowledge that you are not alone. Please believe there truly are an abundance of wonderful therapists out there. Good luck!

By Ruth on Friday, February 02, 2001 - 01:54 am:

Hi, I am a speech-language pathologist who has Ehlers-Danlos syndrome (as does my own child). I'm just writing to let you know that there are SLPs out there who understand the connection between hypotonia and speech delay. Find someone who has worked closely with occupational therapists and has experience with both high-tone and low-tone kids. There is lots of information in the Down syndrome literature about the effects of hypotonia on speech. Ruth

By Scarlet on Friday, June 29, 2001 - 09:32 am:

We live in the U.K. and my daughter has recently been diagnosed as having Ehlers Danlos syndrome type 3, by a genetisist in London. She has speak delay, she is now 22 months and can only say 'da'. This is due to the laxity of the connective tissue ,we think, in her voice box. If I were you I would look into EDS.
koliah@yahoo.com

By Lisa on Saturday, February 09, 2002 - 04:19 am:

My son is now 3years7months, but can speak at 2yr old level(after 7 months at specialist nursery in UK). He used to point and grunt, and throw incredible tantrums due to frustration. I have HMS, and he has quite a lot of the symptoms, but mildly, so far. What worked for us was having a learning support assistant to assist him at nursery, and regular speech therapy. He needed far more individual attention than an ordinary playgroup or preschool could offer, and the change is incredible.Socialising with other kids in a supportive environment makes a huge difference, a lot of the bad behaviour is due to frustration. He is due to start school when 4, but don't think he will be ready for another year, as his concentration is poor, his speech is still hard to understand, and he has difficulty feeding,dressing,holding pencil.

By Liz McCann on Wednesday, July 16, 2003 - 03:09 am:

I am very confused as my son who is now five has been diagnosed with a language & comprehension disorder, he has difficulty with fine motor skills and I have been told he has poor muscle tone (is this hypotonia?). I recently made a link to hypermobility syndrome through a article that I had read and had him referred to a ruematologist who confirmed he does have this syndrome (he scored nine).

So far my son has been seen by speech therapists, physiotherapists and we are currently awaiting an appointment for a occupational therapist (the waiting list is huge and I've been told it may take a couple of years before he is even assessed!)

Does anyone else feel that the professionals don't seem to want to look into the childrens problems any further than their own field. I seem to be the only one that is willing to look into other aspects of his condition (I feel as if the funding in the NHS has a lot to do with this).

My son has also had a problem with his kidney's through catching post streptococcal GN wich made him a very ill little boy with high blood pressure and severe odema. If I had not went with "mothers instinct" and taken him to hospital, I shudder to think what may have happened to him (my GP was treating him for a urine infection). Anyway, the question I want to ask is, do these children tend to have more health problems than the norm? and also where do I go from here. Help!

By Helen on Friday, March 05, 2004 - 01:02 am:

Just reading these messages has lifted my hopes NO END! My daughter 23months, is very hypotonic and awaiting genetic testing for a connective tissue disorder??? HMJD?? maybe, ..she has the MOST INCREDIBLE range of joint movements (so do her mum and dad) and hope she sure is NOT doing these kinda things when shes 18! She wears support boots for her flopsy ankles and can step aided in them (even tries to run). SHe is just starting to crawl and pull herself onto furniture. She has very delayed speech, but her S therapist is great. She made amazing progress through CONDUCTIVE EDUCATION but I suspect it was very painful for her as she yelled throughout...THE WHOLE 3 HOUR SESSION EVERY DAY..yikes. SHe won't eat mixed texture food. We take her swimming twice a week (I teach disabled swimming) this has helped immensly. Her Paediatrician suspects EDS 3. It's been really heartwarming reading your message boards and I will keep coming back often. We are in New Zealand and there doesnt seem to be much experience with kids like mine. We've hooked up with the EDS support group which is a great start. Chin-up mums and dads, you're doing a great job.

By Bonnie Heintskill on Friday, March 05, 2004 - 07:57 am:

Helen. My name is Bonnie, I am a speech language pathologist in the USA and also have a variant of EDS. I had a huge survey on the net during the summer about speech langauge voice, articulation, hearing, etc and EDS. There is a definite connection between EDS and speech/language delays due to the hypotonia of the muscles/ligaments/tendons in the body. My data correlates data from a survey that was done in the UK a few years ago and is published on the UK EDS website: www.ehlers-danlos.org I have never heard of Conductive Education. You can email me off list. It sounds like she has sensory integration disorders too with the limited food textures. Does she have esophageal reflux? My daughter had and still has reflux and has limited food textures. I would suggest you find an occupational therapist who deals with sensory integration disorders and/or an SLP that deals with SI too. Have you ever heard of hippo=therapy? Swimming is great for discoordination too! Bonnie