low muscle tone (hypontonia) ?

[riu girl]

I wrote a few days ago about the possibility of DD9 having arthritis. We went for the assessment this afternoon. The doctor did a ton of blood tests ( 5 tubes) but told me she is doing this only as a precaution. She feels her muscle/joint issues are likely due to low muscle tone.

At birth DD was classed as hyptonic (low muscle tone) . She was in PT until age 16 months (when she started to walk) and then was discharged. Since she had so many more serious issues at that time, I basically gave no more thought to the low muscle tone.

The dr. is now saying that she still has the low muscle tone and can now over extend her body parts ( ex. twist her wrist much further then the average person, a little like a contortionist) in most regions of her body. This has caused problems with her tendens and muscles.

At this time, the dr. has reccommended more physical activity, cold compresses for pain and we have a referral to a PT.

Obviously, I don't know much about this since I haven't had to think about her having this problem for so long.

She already swims 3 times per week and plays soccer, but we will increase this.

I feel so burnt out. She had about a 60 minute meltdown/anxiety attack when they tried to take blood. I have never seen her like this. It was scary for both her and I too experience. I had to remove her from the clinic and try again once she calmed down. I have seen her in meltdown mode before (but not recently) but this was her first real anxiety (maybe even panic?) attack. She has had bloodwork done many times before but this is the first time they put the numbing cream on her first. Having the numbing cream on her changed the routine of how she gets the bloodwork done and it freaked her out I guess.

Does anyone else have this issue with their child (low muscle tone)? And if so, do you have any advice to offer? I am quite relieved about the whole thing. Prior to the assessment (several months ago), the dr. had hinted at arthritis, but it looks like it is just issues surrounding low muscle tone. I don't think there is a cure for this. But if I figure out how to make her muscles stronger, this may help out.

Thank you

 

[deany]

I can't help you out with the low muscle tone but I am thankful that she does not have arthritis - as I have. I am surprised she has low muscle tone with her activity level. As far as the blood tests go, I am a lab technologist, and we see lots of kids who are anxious (very) about having their blood taken. You could put the Emla cream on before she gets to the clinic (should be on 30 minutes before and make sure it is over her vein - in fact, you could put it on both arms just in case) and then she would not have to wait too long in clinic getting nervous. I never tell my patients that it won't hurt - I say that it just hurts a tiny bit, I get them to look at their mom or dad, and not at what I am doing. Seems to really help. Good luck.

 

[SueM in MN]

sorry to hear about your DD's hard time.
I do know that hypotonia can cause some problems with the joints because the joints are "loose". My elbow, hand and knee joints are able to hyperextend (move past the point of being straight). It does make for interesting conversation points and I could really freak people out with some of the things I could do with my arms as a child. I would imagine they would use Physical Therapy to help strengthen the muscles on one side to help keep the joints from hyperextending.
At least you know what it is and hopefully she won't have to have a lot more tests.

 

[riu girl]

Thanks for the info. Hopefully we will be able to see the PT soon and get some info. Its funny, watching her swim today , you would never know she had this issue. The pain really seems to come and go and today it has been gone for most of the day.

Thanks again for the support/info.

 

[stanncie]

As a pediatric PT , my advice is to take her to PT as your MD suggested. The therapist will perform an evaulation and then device a clinical plan for her.

Her therapy will consist of exercises and activities that focus on strengthening her muscle tone and increasing muscle endurance.

Swimming is a very good activity since it does not put any increased pressure on her already overextended joints.

If you have any questions before you see the Pt feel free to ask

 

[taximomfor4]

My dd7 has hypotonia also. Along with a host of other things also. Oh, and a connective tissue abnormality that affects her ligaments and tendons, too...her joints can REALLY hyperextend. We were advised to learn first aid for dislocated joints back when she was 2 yrs old, and told she can NEVER NEVER play contact sports or flexibility sports (for us, no soccer, gymnastics, ballet, etc). She does Irish Dancing and dabbled in baton but she got to where they wanted some flexibility for splits or whatever. Anyway, the PT will be geared toward strengthening certain muscles, to better support your dd's joints, most likely.

I am glad your dd's issue seems to be just related to the hypotonia. Arthritis is progressive and irreversible, so is a much worse diagnosis I think.

Have a great day, and good luck with the next steps for your dd.

Beth

 

[Selket]

Very interesting post! My son wasn't dx'd with hypotonia at birth but later - when he was perhaps around 15 months old. He wasn't able at this point to walk or even stand up. It took him much longer to be able to sit up unassisted for that matter. He was about 20 months old when he was able to stand up for the first time (holding on to things) and he was walking by the time he was 2 yrs old. He was in PT also from about 16 months of age until he was 3 yrs old. At that point he was walking well enough, jumping, etc. It was difficult to tell anything was ever different about him but I could tell that compared to other kids his age that he was much less likely to take physical risks, run as fast, etc. He still would sit down to do steps (even outdoors on the playground) until last summer.

He was dx'd with type 1 diabetes when he was 26 months old - which had nothing to do with the hypotonia. However after he got discharged from PT I noticed that he would often complain about joint pain. He wasn't usually able to walk far - I'd say his stamina was much affected. I also wondered about arthritis but the doctors didn't think this was an issue.

I thought your post interesting because of the complaints of joint pain. No one had suggested that the hypotonia could continue to cause issues like you mention. He can also over-extend his body parts in some places. Like you said, the pain isn't there all the time. It isn't always easy to tell if he is simply fatigued from being high or low due to diabetes or if it is joint pain. As he gets older (he is just 4 yrs old now) he can give me a bit more info.

I appreciate your post - keep us updated. I don't think William needs further PT at this point but it is something I should follow up with his doctor. If you run across any info online about joint pain and hypotonia I'd like to see it.

Good luck - I hope the PT solves the pain problem

 

[riu girl]

Wow, everybody has been so incredibly supportive about this.
Thank you so much.
As soon as we see the PT, I will post an update. In the meantime we are going to try to increase DDs swimming.

 

[spotdog]

Swimming is terrific exercise for any child. It's good to hear your daughter likes it.

I'm just the aunt, but my sister is a pediatric nurse. Be assured that even "so-called normal" 8 year old -teenage girls have been know to meltdown to the point of extended panic attacks and hysterics over anticipating shots or blood draws. Be sure to praise and reward your DD for "making it through".

 

[SueM in MN]

Be assured that even "so-called normal" 8 year old -teenage girls have been know to meltdown to the point of extended panic attacks and hysterics over anticipating shots or blood draws. Be sure to praise and reward your DD for "making it through".

Even adults - my DH faints every time. If I want to make either he or my older DD turn 10 shades of green, all I have to do is mention blood.

 

[qst4it]

I know this is a strange way to start off my post with my little happy dance but I am relieved to not be alone and with people who are much further along in the diagnosis than me. My DD is 18 months old and was diagnosed with hypotonia in Jan. of this year. She was on target with milestones until it was time for her to stand up. She has just now started to stand using furniture but no walking or supporting herself on her legs. We have just started with her wearing Dafo #3 leg braces to see if we can get her more stable. She also has no communication skills yet. We have OT, PT, Speech, and this other person who comes in to teach her coping skills once a week. Last week she had a gastric emptying study that showed her stomach is extremly delayed in emptying. We now have to have an upper GI done to see if it is anatomy or a blockage. I started on these boards because I am planning a trip for the girls in November because we have had a rough year and need to get away. I didn't mention that I have a very energetic 3 year old that has to sit though her sisters therapies each week and does it with out a problem. I have many a day latly that I think it is finaly time for the nervous breakdown but I can't because someone has to scheldule the next Dr. visit. So anyone with advice please send it my way. This is the first time I have read things from other parents that have been dealing with this for a while. and a question, the doctors decided last week that they want to do more testing to pinpoint what is causing her to have the hypotonia in the first place since it can be a syptom of many other things. She has had a mri that came back normal. Did any of you find any causes? Thank you again for sharing and I really feel like a weight was lifted and I am not the only one that is deling with this.

 

[MightyMom]

I have been in your shoes...... and I'm not sure if I can help you, but I can offer a word of encouragement.

My son was born at nearly 30 weeks gestation. He spent time in the NICU but amazed the docs and was sent home with few medications.

The day he turned three months old he woke up with his eyes crossed. I mean SEVERELY crossed.

I took him to the pediatrician that same day and she suggested cerebral palsy. Apparently the sudden onset of strabismus is an indication of cerebral palsy.

After about six months of deep denial, second and even THIRD opinions... we finally got his official diagnosis. Quadrapelgic Hypotonic Cerebral Palsy.

Basically.... he has low muscle tone throughout his entire body. He sat unassisted at 2 , started creeping at 3 and finally at age four he started to bear weight on his legs.

He is seven years old now and can not walk for more than 10 feet independently. He is very unsteady.

The first neurologist said he had a perfectly normal MRI scan. We have been to two neurologists since then. This final neuro is our favorite, she's been the most honest with us. Our son has evidence of a brain bleed surrounding his ventricles. This can cause his type of cerebral palsy.

He has been in physical therapy since he was 3 months old. He gets three 1 hour PT sessions per week. 2 hours of speech therapy, 2 hours of traditional occupational therapy and 1 hour of cranial sacral in the pool.

He's had more surgeries than he's had birthdays. And his life isn't what a typical 7 year old boys life should be. But he's stronger for it and he never complains. (Okay.... he does complain when he's about to have surgery.... but who wouldn't, right?)

I remember in the early days I was scared out of my mind. I had him when I was 23 years old. It was my first child. That was scary enough.... but then a diagnosis of a disability. I thought I was gonna lose my mind. There were so many appointments, so many tests........ and slowly I started getting used to it. The medical lingo stopped intimidating me.

Please don't be scared by anything I've said. I am in no way insinuating that your daughter has cerebral palsy..... I'm just telling you about OUR experience.

I believe knowledge is power. The more you know the less likely you are to be scared of the unknown. Ignorance fuels fear. Read, research and ask questions.

Sorry for getting carried away....hope this helps even a bit.

I know this is a strange way to start off my post with my little happy dance but I am relieved to not be alone and with people who are much further along in the diagnosis than me. My DD is 18 months old and was diagnosed with hypotonia in Jan. of this year. She was on target with milestones until it was time for her to stand up. She has just now started to stand using furniture but no walking or supporting herself on her legs. We have just started with her wearing Dafo #3 leg braces to see if we can get her more stable. She also has no communication skills yet. We have OT, PT, Speech, and this other person who comes in to teach her coping skills once a week. Last week she had a gastric emptying study that showed her stomach is extremly delayed in emptying. We now have to have an upper GI done to see if it is anatomy or a blockage. I started on these boards because I am planning a trip for the girls in November because we have had a rough year and need to get away. I didn't mention that I have a very energetic 3 year old that has to sit though her sisters therapies each week and does it with out a problem. I have many a day latly that I think it is finaly time for the nervous breakdown but I can't because someone has to scheldule the next Dr. visit. So anyone with advice please send it my way. This is the first time I have read things from other parents that have been dealing with this for a while. and a question, the doctors decided last week that they want to do more testing to pinpoint what is causing her to have the hypotonia in the first place since it can be a syptom of many other things. She has had a mri that came back normal. Did any of you find any causes? Thank you again for sharing and I really feel like a weight was lifted and I am not the only one that is deling with this.

 

[Selket]

I know there are several good websites on hypotonia that explains it better than I can. I think many times it is a symptom of some other problem - perhaps it is often a symptom of another problem. I think it can be mild or severe and sometimes the only problem is the low muscle tone itself (like my son) - and sometimes other systems are involved (like the previous poster who has a child with CP). Sometimes it is very severe and sometimes less so.

You might do a Google search on hyptonia and you come it with websites that lists many problems of which hypotonia is a symptom.

I don't have any advice but I know how it feels to deal with chronic health issues (my 4 yr old who had low muscle tone eventually developed type 1 diabetes and food allergies which I think are unrelated to the hypotonia).

Wishing you the best of luck - hang in there - and let us know what you find out!

 

[qst4it]

I have searched and searched and then I decided to stop for a bit. I was more on overload at the time. When i found this post it was just a releif to see parents with some of the same issues. Jamie is 18 months and I am only 25, but I also have a 3 year old. The girls are only 18 months apart. I think I am loosing my mind some days. Sometime I have to remember there are much worse things than Jamie's hypotonia and one day the doctors will decide to stop testing her for everything! I hope. Thank you again Jessica