Baby with low muscle tone, anyone else?

[KirstenB]

Our 2nd dd, Zoe is 10 mths old. At her 9 mth checkup, the pediatrician noted that she wasn't crawling, or sitting up without someone behind her. Zoe also will not "grip you" when you hold her, like when you're walking around. We were referred to Children's Hospital, who in turn referred us to our county's Early Intervention program. She had an initial screening at our home, then another lady came out today. She'll be evaluated by a physical therapist (same one on 1st visit) and an educator in 2 weeks. To qualify for the program, she has to have a 25% delay.

The DIS is such a huge community, I was wondering if anyone else had any experience with this. We've been doing exercises with her, and she seems to be doing much better. The lady who came out today said that Zoe seemed to have muscle tone issues, and also said she seemed super flexible. The lady said that kids with low muscle tone often are very limber. Anyone's child have this?

 

[golfgal]

I have 2 nephews that were low muscle tone babies. The first thing I noticed was changing diapers when they were tiny and how flexible their hips were, almost too flexible. They both went through physical/occupational therapy and are doing fine now. The one nephew was never let down or allowed to move and that was pretty much what 'caused' his condition. The other nephew was the way he was. The first nephew is 9 and the other will be 5 in October, neither have any residual effects from this.

I also know of one girl that I suspect was a low muscle tone baby that was never diagnosed. I know that even in 5th/6th grade she had issues trying to keep her head up, had somewhat spastic large muscle movements, etc. She joined the swim team in 7th grade and by 8th grade all of her "symptoms" disappeared.

 

[ohiominnie]

Our 2nd dd, Zoe is 10 mths old. At her 9 mth checkup, the pediatrician noted that she wasn't crawling, or sitting up without someone behind her. Zoe also will not "grip you" when you hold her, like when you're walking around. We were referred to Children's Hospital, who in turn referred us to our county's Early Intervention program. She had an initial screening at our home, then another lady came out today. She'll be evaluated by a physical therapist (same one on 1st visit) and an educator in 2 weeks. To qualify for the program, she has to have a 25% delay.

The DIS is such a huge community, I was wondering if anyone else had any experience with this. We've been doing exercises with her, and she seems to be doing much better. The lady who came out today said that Zoe seemed to have muscle tone issues, and also said she seemed super flexible. The lady said that kids with low muscle tone often are very limber. Anyone's child have this?

Was any testing done? Bloodwork or a muscle biopsy. Could just be a developmental delay. Could be something more that requires testing. Just wondering what else has been done besides referring to Early Intervention and PT.

 

[Desnik]

DS didn't walk until well after his first birthday. He never really crawled either because of his issues as an infant. While he didn't qualify for PT, he did for OT, and speech therapy. He was evaluated by early intervention and was given services through the state. If your child qualifies the theropy is done in your home and it doesn't cost you anything. I am so grateful for all the help they provided for DS. He doesn't require OT anymore but still gets speech therapy. I wouldn't worry too much, I know it's hard not to, but you are doing the right thing and are on the right track. There are services available so take advantage of them. I'm sure your DD will be crawling/walking soon. She just might need alittle help. I have heard of this before and the PT really helps and most kids only need it for alittle while. Your lucky to have a good Dr who noticed this and steered you in the right direction at an early age. DS didn't get EI until about 20 months. Now in Sept he will get pre school services which he had to be re evaluated for. At 3 he was said to have the speech of a 20 month old!

Good luck to you and the PT should really help your DD.

 

[fabumouse]

Anyone's child have this?

My DD had that - and didn't crawl (she rolled) or sit up on schedule. She was ultimately diagnosed with severe reflux, and the specialists reasoned that she was not sitting up because it hurt too much. Once she started on reflux meds and had EI come out for physical therapy, the issues went away almost entirely. She still has some lower tone on her upper body, but she's in dance, martial arts, swimming, etc. and I don't notice any difference between her and the other kids.

 

[AmazingGrace]

Benji was hypotonic. He didn't walk until he was two and that was with braces. He had been in OT from the time he was one until just a year or two ago. He's very skinny and very limber.

 

[KirstenB]

OhioMinnie, no no bloodwork was done. At Children's Hospital, they did say she had some low muscle tone. They referred us to Early Intervention, because E.I. will come to your home, work with the baby's own toys, etc.

Desnik, unfortunately E.I. doesn't work the same in our state. It'll cost us more than Children's Hospital. Both will bill insurance, but our insurance will only cover 80% of E.I. vs 100% at Children's Hospital.

Our well just collapsed so we're $7000.00 cash out of pocket for a new well. I'll try to walk the line between getting Zoe her therapy, and trying to watch our budget. E.I. said they could come out less frequently, since most of the work would occur when we worked with her ourselves. That makes sense because the exercises that Children's Hospital gave us are ones that are easy for us to do with Zoe. No one seems to think her tone is that bad, thank God. They just want to help us catch her up.

 

[ChrisnSteph]

I had two children who were both born with very low muscle tones, due to chromosome abnormalities. Only one, my late son Aaron, made it into the early intervention program. We didn't have to pay for any early intervention services. I can't say enough good things about the OT and home visits that were provided to him. In less than a year, he went from being a very floppy baby to being able to hold his head up on his own, being able to extend and flex his clenched fingers, and he was almost to the point of sitting up on his own. Our local Regional Center (who provided the early intervention program) also provided us with a geneticist to follow his condition. I would recommend that your child have bloodwork done to rule out any genetic conditions that would cause the hypotonia. Also, be prepared to have lots of patience. OT takes many visits and time before you begin to see results. Also if you are given exercises to do at home, make sure to do them, and as often as you can. They really do work! Good luck!

 

[taximomfor4]

Sure. MY 8yo dd is hypotonic also. (Still to this day). I showed her ped at her 9 month checkup that if I put her down, on her tummy for tummy time, her face stayed in the floor, smothering herself. The ped replied, "then don't put her in tummy time." I switched peds for the 12 month check. The new ped sent us for PT evaluation. DD at 12 mos could not crawl, pull herself to stand, and sat with a VERY wide leg-base and hunched back. At 8yo she still cannot pedal and steer a bike with training wheels. But you should see her Irish Dance!! She works very hard, takes forever to get her muscles built up to do new skills. But her perseverence really humbles me. If you ever have any questions, PM me. Been there, done that. For years!

Here's a pic of her now, since I'm feeling like bragging!

 

[Desnik]

Sorry to hear about your well. I'm so sorry your state doesn't cover EI!! That stinks. But maybe you can do the PT less frequently and you could learn from the PT what to do.
I can tell you that the therapy works but it works so much more when you take that therapy and do it on your own with your child. If I just counted on the therapist to help DS he would never have come as far as he has. I have taken all I have learned from them and continue with it daily with DS. He actually ate icecream with sprinkles yesturday for the first time! Now for a kid like him who had so much OT issues with textures and severe reflux this was huge!

Good luck!

 

[belle&beast]

I am a pediatric speech therapist. Now I work with preschoolers, but I worked in EI for 4 years and I am pretty sure that your state's EI should be provided at little or no cost to you because it is government funded, just like therapies through the school district. You can always get treatment for which you will pay out of pocket, but call your local school district and see if they can direct you to the right place. Also, check out the DISabilites board- they really know their stuff!

As far as low tone goes, I have seen MANY successful children! The trick is to use what your therapist teaches you. Make the most of your sessions- ask questions, practice and be involved. You will see results much more quickly if you follow the therapists recommendations and exercise protocol. Are you seeing any trouble with eating or speaking? Many kids also have problems chewing because they fatigue quickly and they may have speech delays because of low muscle tone in the cheeks, lips and tongue. You are on the right track, and it sounds like you have a great pediatrician. Good luck, and I really think there should be a way for you not to have to use your insurance benefits and pay out of pocket.

 

[katerkat]

A therapist should be able to give you lots of exercises to do at home. My son had poor trunk strength due to torticollis - at 5 months old, he tested at a 3 month old level. After four months of therapy, he scored at the high end of his age group. (Though he didn't walk until 13 months.)

 

[U2_rocks]

My mom and I were worried about my nephew when he was 9 months old - he seemed to have quite low muscle tone, he was developmentally behind by at least 2 months, and seemed really floppy in some respects and really rigid in others. His parents didn't seek any help for him, and he's just about caught up with average now that he's 18 months. He walked at around 16 months, and now he's all over the place. Not that I'm necessarily saying don't seek help - just that if it isn't a severe case it may just be the child operating on their own schedule rather than a real problem.

 

[llij]

All three of my children were born with hypotonia and I am very familiar with EI services. They are a godsend. I grew very close with all of the wonderful people in EI and I am so grateful for all of their help and kindness to our family.


My oldest dd (now 10) was severely delayed and required two years of PT, OT, and speech. She didn't talk or walk until she was almost two. She had some sensory issues with her hands so she never crawled. As a baby she had an MRI, lots of bloodwork, EMG, and a muscle biopsy. For awhile there we thought that she had some rare mitochondrial disease but thankfully she was diagnosed with benign congenital hypotonia (fancy way to say she just has low tone. )

The funny thing was that the neurologist we were seeing said that her hypotonia was a fluke and we wouldn't have another kid born with this. Well, 2 kids later and two more cases of hypotonia later..... Oh well, what can you do....my babies are my blessings.

Thankfully, my second dd's hypotonia was less severe and she only needed intervention for about a year. My son was evaluated 2 months ago and he wasn't 25% delayed so he doesn't qualify. Of course he is almost 9 months old and still can't sit up or push up well. He might need another evaluation in a few months if this doesn't change, but he is the strongest of the three so I'm not worried.

Sorry to babble on about this......the great news is that both my dd's are doing beautifully today. My oldest is an all star soccer player and my other daughter does great in soccer as well. Sure, they both still have their hypotonia but they have adapted beautifully and you can hardly tell that they have it.

Good luck to you and please pm me if you ever want to chat.


ETA: I forgot to mention that we payed based on a sliding scale for all of the services we received.

 

[KirstenB]

Thanks fellow DIS'rs!! I knew you guys would be so knowledgeable! I will ask about blood tests. Zoe is doing better, just in the last month. She can now sometimes go from sitting to belly. She does a split, and stays there until she can finally maneuver that other leg around. She just can't sit unassisted, and we need to hold her when we're carrying her, since she doesn't grip us. Now, she also tolerates tummy time much better than she used to.

Thanks again, the knowledge and experience of fellow DIS'rs always amazes and humbles me. You guys rock!

 

[merrily]

Kirsten,
I just did a very quick search for early intervention in your area. Are the services you are receiving coming from Infant and Toddler Connection of Virginia? It is the state non profit agency that provides early intervention to all families regardless of their ability to pay. Maybe you should check them out it this is not the agency you are currently connected with. http://www.infantva.org/

 

[KirstenB]

Merrily and Belle & Beast, the Early Intervention in our state does have a sliding scale based on ability to pay. They will bill insurance, and our insurance will pay 80%. Our out-of-pocket max per mth will be just shy of $200.00. I know this probably seems like very little, but I guess I'm still trying to get a grip on the well bill. I just never thought we'd have a home expense like that. It'll be fine.

Belle & Beast, no she has no trouble with feeding or speech.

 

[minkydog]

I had two children who were both born with very low muscle tones, due to chromosome abnormalities. Only one, my late son Aaron, made it into the early intervention program. We didn't have to pay for any early intervention services. I can't say enough good things about the OT and home visits that were provided to him. In less than a year, he went from being a very floppy baby to being able to hold his head up on his own, being able to extend and flex his clenched fingers, and he was almost to the point of sitting up on his own. Our local Regional Center (who provided the early intervention program) also provided us with a geneticist to follow his condition. I would recommend that your child have bloodwork done to rule out any genetic conditions that would cause the hypotonia. Also, be prepared to have lots of patience. OT takes many visits and time before you begin to see results. Also if you are given exercises to do at home, make sure to do them, and as often as you can. They really do work! Good luck!

Your post took me back to Christian's early days. He was also very hypotonic due to a chromosome disorder. Eventually Christian learned to walk(age 5.)

OP,I would also recommend some testing. It took us 2yrs to figure out what he had, and in the end it was rare. I am not suggesting that your child has the same thing as mine(I hope not!)

Be patient with therapy. One thing our PT said to us early on was "we can tone up loose muscles easier than loosening up tight ones."

 

[SueM in MN]

Merrily and Belle & Beast, the Early Intervention in our state does have a sliding scale based on ability to pay. They will bill insurance, and our insurance will pay 80%. Our out-of-pocket max per mth will be just shy of $200.00. I know this probably seems like very little, but I guess I'm still trying to get a grip on the well bill. I just never thought we'd have a home expense like that. It'll be fine.

Belle & Beast, no she has no trouble with feeding or speech.

Early Intervention used to be free of charge (paid for by your taxes) all over. Some states do now charge a sliding fee, based on income of the parents. (Not getting into politics, but this is a 'soclal program' and some people feel the government should not fund any social programs).

Interestingly, for many programs, they look at the child's income to determine if they are eligible - since most kids don't have any income, they are eligible. Then, they look at the parent's income and determine a parent co-pay. I know about 2 years ago, in Minnesota they raised the copay for some services for Personal Care Attendants for some children with very high needs (who needed 24 a day care). The government said it was a small increase, but many people were in the news saying that their co-pay went up from around $25 a month to over $400.

This site is a good resource. It has some information for Early Intervention, but more about ages 3-21, when kids come under the school programs.
www.pacer.org
The PACER Center is based in Minnesota, but is a national resource (funded thru federal tax money).

 

[KirstenB]

Sue, thanks for the info. At yesterday's visit, the coordinator said I needed to remember this program was only til age 3, and if we still needed help then, they would let me know who to contact.

One thing that's weird that I occasionally forget is I have to be careful when I put Zoe in her crib, or lay her down to change her. You know how a regular baby will lean a little forward (provide resistance against your laying them down)? Zoe doesn't do that. As she gets bigger, I have to remember to keep a hand running down the length of her back or she'll just go flat on me, and sometimes whack her head.