Parent Story: Cri-Du-Chat Awareness Week

This is World Cri-Du-Chat awareness week.

Cri-Du-Chat or 5P- syndrome. It means 5p gene of Chromosome is missing or part of it is missing.  The most distinctive symptom of CDC us “cat like cry” or “cri du chat” in French.
Some of the common traits are-

They have close set of eyes
Low nasal bridge
Low set of ears, wide mouth.
Usually born hypotonia(low muscle tone).

My son was born with Cri Du Chat. I had a normal pregnancy, but at 5th month we were told that my son has bilateral clubfoot. A good doctor would have advised to take a Genetic test but my doctor didn’t. We did everything right within our reach so that our baby does not have any other complication. I ate right, exercised, did yoga and was leading a healthy life. I delivered my angel on Valentine’s day 2014. A perfect day and a perfect baby.

As soon as he was born he cried “miaow miaow”. We thought he is so cute, cries like a Kitten. Our parents consoled us that it must be because boys don’t cry loudly. We didn’t notice much. I was really tired with the delivery; we came back to our room and we tried to feed. He could not latch. I thought being a first time mother, I am facing what all mothers face. We tried a lot, and after a while he latched. He latched fine but he was not swallowing. Sometimes he would and sometimes he won’t. Sometimes milk would flow from sides and he wouldn’t react.

After a week we put on a cast on his legs. From groin till toes. He was treated with Ponseti method. He was so irritated and was not drinking milk properly. We thought it must be the pain and irritation. His feeding pattern only got worst from there. He was 5 weeks and still at his birth weight. We started bottle and he could not suck from bottle either. We were struggling a lot with reflux, colic, constipation.

He was out of casts and in the brace. To keep him comfortable we kept him on bed, comfortable pillows. All these only added to the delay. His head was not set, even by 6 months. He was still crying like a cat. No doctor tried to find out why baby has such a shrill voice. No one advised any test. Even when head was not set, we were not asked to meet a developmental specialist.

We did some research, and a lot of help and encouragement from this group, my husband and I decided to take an opinion from a developmental specialist. Aparna Bhat and Puja Padbidri helped us look at the bigger picture. Till that time we were thinking it should be the clubfoot but they made us realize that clubfoot has no relation with delay. They helped us understand the importance of each milestone and how skipping a milestone is not normal. They gave us plenty of references. We had a lot of questions from our family. We had people telling us not to worry and give it time. We were given examples of xyz’s son or daughter did this or achieved this milestone at so and so age. But they made us understand the importance of early intervention. They gave us the courage to go beyond all the advice and do what is best for our child.

Just to convince our family we consulted our family pediatrician. He immediately referred us to a Pediatric Physiotherapist. We started therapy when he was 7 months old. We also met a developmental specialist. She pointed out a lot of things. I was so angry and that is when I realized, as a parent I don’t want to see what she is saying. But whatever she pointed out was true. She was blessing in disguise. She referred us to one of the best neurologists in Mumbai. Being form India, hearing the word “neurologist” gives a chill down the spine. We still went ahead. By the time we met this neurologist, he was much better thanks to our physiotherapist. We met her and she suggested tests and asked us to meet after 3 months. She didn’t show any urgency maybe because baby was already improving with physiotherapy. She asked us to continue.

We conducted tests as per the neurologist. The tests were genetic test, Brain MRI and a few more. These were huge for us. First of all we were unaware of levels and degrees of these genetic problems. For us it means only one thing which every parent is scared of. Second was Brain MRI. It had to be done under general anesthesia. Vedhanth have already had one general anaesthesia at the age of one month and we were scared of put him under another one. We took the genetic test first thinking we would take MRI right before we meet her. The CGH array genetic test takes about 3 months for the workup and result. It was a long wait but we never thought it could be a problem. When he was 11 months old we did a brain MRI and found that he did not have any issues. Two weeks before his appointment we got the CGH test results.

It had 5P- written on it. We were totally devastated. We don’t know much about this syndrome so we started researching and things were not looking good. We stopped everything and thought that we will put our faith on our doctor. We will follow what she says. They were the hardest two weeks of our lives. Life was not going to be the same but at least we were in peace because we know what he is suffering from and we were prepared. Since then, he has been only progressing because of all the therapies. I am with him 24/7 and so is my husband once he is back from office.He is improving because of our personal attention.

 

Every year, there are children that are born with Cri Du Chat syndrome and due to the rarity of the syndrome and the lack of information, these children slip through the cracks and are not diagnosed, or are misdiagnosed. Every year, there are families that are presented with information, from the 1970’s, about their child’s syndrome. These studies state that their child will not walk, talk, and may die at an early age. This information is not necessarily true, and something needs to be done about it. There is very less awareness regarding genetic disorders.

Please spread awareness on early intervention. Trust your doctors and follow up on the tests they recommend. It is not necessary that all genetic problems necessarily mean inability for life. Proper help can make a huge difference.

 We want to thank Revathy and her husband for being so courageous and sharing this powerful story. She has been a source of inspiration to many parents who get the “wait and watch” advice from other people. She is one of the motivators and now a strong advocate for our milestone screening program- Babyshastra.  

Sitting up: Guidelines for making baby sit up for solids

The average range for babies to come to sit on their own is between 6-9 months. Solids need to be started at 6 months in sitting upright only as feeding the baby lying down is dangerous. Read here why its important for the babies to come to sit without help.

The question is how do you start solids in sitting if you baby cant sit up by themselves? 

If your baby is 6 months old and not coming to sit by themselves yet, here are the guidelines for making the baby sit up for solids.

1) Please know that making your baby sit up propped up with pillows behind their back or in a bumbo before 6 months will actually delay their learning. Read how and why here.

DO NOT PROP BABY UP BEFORE 6 MONTHS

2) If baby is not coming to sit by themselves at 6 months, check if all other pre-sitting factors are present. See this info graph.

3) For introducing solids (see why semi-solids or liquids are not nutritional here) the baby has to be upright. This is the ideal position as it reduces the chance of choking and allows baby some freedom to move head away to refuse food or lean forward to throw up if needed.

These are the 2 positions we recommend for starting solids.

4) When you first make the baby sit, it is likely that you will see slouching. Read the various stages of sitting posture here. The important thing to watch for is whether baby is using hands and making attempts to push off the floor. If baby is not trying to do so within 7-10 days of being made to sit up, Please consult a PT immediately. Your baby may need help with some shoulder strengthening.

5) If you have made the baby sit on the floor and they can maintain the ring sitting posture or even try to sit without support, try to get them to reach for toys in various directions. More opportunity for this sort of trunk work will help the baby figure out the combination of movements between head, shoulders, core and hips.

6) The key to gaining a new skill is practice, fail, practice, fail, practice, get it. If baby is made to sit for long periods, their motivation to learn to come to sit reduces drastically. You can do some sitting during the day, this time should not exceed more than time on the tummy on the floor. The baby still needs spend most of their awake time on their tummy to learn how to move from tummy to sit independently. If you want more specific guidelines, based on your child’s movement history and skills, contact us at theyearlinghouse@gmail.com for a consult on Skype/in person.

7) Some babies catch up with some easy changes in the way toys are presented or how they are held etc. Some babies don’t. Since there is no way to predict this, we recommend that you stay in touch with a PT at least once a month to make sure there is progress. As we have discussed in the earlier articles, there are many subtle pre-sitting skills that need to be in place, which are often missed by parents.

The only thing that will trigger natural development of milestones in all babies is floor time and tummy time. (here)

If, in spite of this, babies are not catching up with their milestones, it is better to get help right away rather than wait and watch.

Happy Parenting

11/28/2015

Puja.

Sitting up: made to sit or come to sit?

Often parents wonder if their baby has achieved the milestone of sitting if the baby can sit well when made to sit but doesn’t come up to sit up.  Lets take an in depth look at sitting. The topic is too big for one post, so this is Part 1. Parts 2 and 3 are linked below.

When babies turn 6 months old, parents start thinking about the sitting milestone as it is synonymous with starting solids.  In earlier days, babies would be already coming to sitting at 6 months before the advent of the back to sleep campaign, bed and other equipment which has taken the focus off tummy and floor time.  These days, the number of babies are not coming to sit by 6 months is on a rapid rise.

So now we have a classic catch 22 situation. Solids need to start by 6 months for various reasons. If the baby hasn’t learnt to come into sitting by themselves, the only solution is to make the babies sit up because the recommendation for feeding is upright posture, not reclined. If your baby cannot come to sitting independently at 6 months, read our guidelines about making your baby sit up for solids here

In that case, we have 2 different ideas here: 1) Coming to sit from the floor by themselves and 2) Maintaining sitting posture and balance.

Both these ideas are different simply because the act of coming into sitting requires more strength, coordination and overall higher activation of brain while maintaining sitting balance is easier. Think of stacking blocks vs. looking at a tower. While you are stacking blocks, you need more precision and concentration etc, while once the tower is ready; all it needs is not be to be disturbed.

Let’s look at both these two ideas separately.  You can read about progression of sitting balance, once the baby is either made to sit or comes to sit in Part 2 of this series.

How do babies come up to sitting by themselves?

 Let’s look at the ideal way of coming to sit.

When a baby is placed on tummy since birth, they start to use their hands to push their head, chest and elbows off the ground by 4-5 months. The baby learns that they can move their bodies in various ways like pivoting, rolling and creeping. Enough practice (which differs for each child) of these movements automatically triggers the need to come to sit.

Check this video of a baby sitting up as described.

Ideal way of a baby to sit up on their own

As each part of the body from head to hip becomes stronger by pushing up on the floor from tummy, the next milestone automatically triggers. There is a range for each milestone to account for each child’s personality and environment. Some additional time is also allowed in case the exposure to floor was not sufficient.

When the parent makes a baby sit up before they can do it themselves, some of the pre-sitting steps automatically get less time to be practiced. Often times, this could lead to less use of hands for protection while losing balance, poor strength in shoulder which will have a huge impact in school and poor eye-hand coordination.

When should parents worry?

In terms of its timeline, babies should be coming to sit, from their tummy between 6-9 months. If there is no sitting by 11-12 month, then help is needed immediately. This is a big red flag. The baby will need intensive therapy to catch up if we wait till 12 months. If baby is trying to come to sitting from their back, please consult a PT right away. Do not “help” or “encourage” baby to do this movement.

So what is your baby is little over 9 months and still not sitting?  In  my opinion, if your baby is not coming to sit by themselves by 9 months, it is better to have a consult with a pediatric physical therapist to make sure all the pre-requisites for the movement are in place.

For example, if the baby is not even pushing up on palms at 9 months, it doesn’t seem likely that the baby will sit up soon. So it’s better to get some easy handling strategies to work on such pre-sitting skills so the baby does not need regular therapy sessions at 12 months. If you would like to consult us, we can be contacted at theyearlinghouse@gmail.com

Read the guidelines for making your baby sit for for solids in Part 3 here.

Happy Parenting

11/28/2015

Puja.

Worry Wednesdays: My baby scratches themselves! Should I use mittens?

Many parents are worried about baby scratching themselves and therefore use mittens on their hands. Others worry about baby sucking hands and use mittens to prevent that. Many babies wear socks constantly because parents think that baby will feel cold. Many swaddle because they feel swaddling reduces startle reflex or because swaddling helps baby sleep longer.

However, swaddling or using mittens and socks is a very bad idea, developmentally speaking. I going to explain why in this article.
Swaddling, using mittens or socks on their feet reduces sensory input to the baby’s brain as their movements are restricted and their skin is not open to feel things.

Babies need to get lots and lots of sensory input from their bodies and especially from their palms which are richly supplied with touch receptors. When a young baby’s hands touches their body, the sensory input from the touch goes to their brains. Similarly, when a baby sucks their hands at about 6 to 8 weeks, the sensory input from the sucking goes to their brains. Similar sensory input goes to their brains when any part of the body moves or touches a surface.

Why is this sensory input very important? In a nutshell it helps build a sensory map of the body in the baby’s brain.

Somatosensory Cortex

There is an area in the brain called the somatosensory cortex which helps interpret all sensory inputs from any touch to the body, based on the virtual map. Early sensory input from movement and touch helps build this virtual map.

 

Sensory map of the body on the somatosensory cortex

Here is a picture which shows how the body is mapped on the somatosensory cortex.

 

One more important thing about sensory exploring is that baby learns which touch is safe and which is not. But preventing these early sensory inputs reduces the chance of baby learning what is safe or unsafe. This impacts all further activities like eating (baby does not know that bringing hands to mouth is safe) or writing (baby does not know whether touching a pencil is safe or not).

This is why swaddling and using mittens and socks in babies is not a good idea. To prevent scratches file babies nails. Don’t worry about baby’s feet being cold, all the sensory input will only help them, not harm.

Here, have a seat: Development of sitting milestone

Infants are put in seated equipment earlier in our modern ways of life, right from car-seats to bouncers to highchairs. Lets look at how this milestone develops in this post.

Our body develops control from head to toe. Achieving a milestone requires strength in muscles and coordination between the moving and non-moving parts. Only when both of these components are learned can the baby practice the skill/milestone. A milestone is completed only after several attempts and gaining confidence in the skill. We have discussed aspects of head and neck control in the tummy time post here. Please read through that before you start this for some background.

The first 3-4 months of life are focused on development of head and neck control. The baby’s pushing up on hands has strengthened the shoulders and wrists considerably. By 3 months, baby’s fists have uncurled and the arms are failing around much more. The baby now has enough eye coordination to introduce use of hands in the routine. Earlier the baby would only track their toys with their eyes but now they want to move their hands in that direction too. This is the beginning of trunk control. The back has to exert stabilizing pressure so that arms can move freely. Till 6 months, reaching (either on back or on tummy) is well developed. Putting your child in a supported sitting position on the floor is recommended only after 6 months. 

Lets look at how sitting milestone is achieved in four stages.

First stage: supported sitting

The baby when put into sitting the unfamiliar position causes the spine to completely round and the babies are unable to pick themselves up to a straight sitting position. Even though they have enough strength in their arms to push off in lying, that strength is insufficient for pushing in sitting. With practice, they learn to use their hands and sit with a slight lean forward and weight on arms. It’s called ring sitting. This is what it looks like.

This baby is leaning forward with a lot of weight on his arms. His legs are both spread out wide to balance his body and knees are pointing out as well (what’s called a butterfly position in yoga). From his expression you can see he is focused on balance more than anything else.

Second stage: Supported sitting with reaching

Once the baby is comfortable in ring sitting, they want to explore their environment using their hands. So one hand is used for support and other hand slowly starts manipulating toys near and far. They can also turn slowly to look over their shoulder which makes their backs strong and the leaning forward reduces. When they lose their balance, the arms are used to break their fall. In the two pictures below, you see how the hands are being used less for support and are free to play with toys within this position.

                                     

Third stage: Unsupported sitting

Gradually they are comfortable enough to sit without using either hand for support. They start to reach for toys away from their bodies gradually. They are also learning to maintain balance without using their hands to break the fall and playing with toys all at the same time! Typically this occurs around 8 months. Babies are able to prevent falls first forwards, second sideways and last backwards.

The baby (left) is looking over her shoulder with good trunk balance. Her hand is in readiness to protect her fall if loses her balance backwards. While the baby (right)is confidently turning his  feet and trunk without using hands for support.

Fourth stage: Getting in and out of sitting

By 8-9 months, the trunk balance and coordination has developed in sitting posture. Now the babies are getting adventurous and eager to move further.

They start to push down on their hands and lift their bum off the floor to get into crawl position. They can also bring their bums down into sitting from crawl position.

Another way kids’ transition into sitting is also from lying down position. They will roll onto their tummy; push up on arms and lift bum up to bring their knees under the waist.

The next milestone after sitting is crawling. Once the babies are comfortable in moving within this stable position, they will try to initiate crawling independently. Our post on the importance of crawling in development is posted here.

Happy Parenting!

Puja

1/23/2015

References:

(1) Shumway-Cook A, Woollacott MH. Development of Postural control In Motor Control: Theory and practical applications. 2^nd Ed. Lippincott Williams & Wilkins. (2001) 192-221. (2) Saavedra SL, Donkelaar P, Woollacott MH. Learning about gravity: segmental assessment of upright control as infants develop independent sitting. Journal of neurophysiology, 2012. 108(8); 2215-2229. (3) Hadders-Algra M. Development of postural control in the first 18 months of life. Neural Plasticity, 2005. 12(2-3); 99-108. (3)

Sensory Processing (3): How babies learn motor skills like rolling over.

In the first part  (here) I explained the 7 senses. In the second (here), we saw how the brain sorts incoming sensory information and learns by creating a sensory feedback loop. In this part I will explain in detail how babies learn to roll over based on sensory input and past skills.

Here is a chart which shows how the multiple senses interact and build advanced skills:

As new parents, we tend to focus on higher level skills like attention and behavior. But these are higher level skills. The foundations of these higher level skills are laid in simple sensory processes provided by our day to day activities.

How do newborn babies get sensory inputs? By the day to day activities we all do with our babies. For example:
1. Touching babies through gentle massage, carrying baby or wearing them (Tactile and proprioceptive inputs)
2. Tummy time (vestibular and proprioceptive inputs)
3. Rocking baby or baby-wearing while we do our daily activities (Vestibular inputs)
4. Reading books, singing, talking (Auditory inputs)
5. Taking then outside (Visual inputs)

When babies are newborn, they rely on these inputs to lay down databases of “safe” sensations. Advanced skills are then built on the interaction of incoming information from the seven senses and the “safe sensations” database. Let us see how how babies learn to roll over:
1. Consider a 3 month old baby is on their tummy.

2. If baby has had regular tummy time prior to this, they have learned to hold their head up and are comfortable lying on their tummy. Since the body is completely supported, the baby is confidently looking around them at their surrounding environment.

3. Baby sees a colourful toy lying just out of reach. (Vision and perception)

4. Depending on where the toy is in comparison to the baby, the baby may reach forward, twist its body or turn the head. (Proprioception and cognition)

5. The movement receptors (vestibular) and body sense (proprioception) now signal the brain that baby is trying something new or is pushing the boundaries of a previous skill.

6. Suddenly the muscles generate enough force to roll the body over (proprioception). The first time, it may trigger the startle response and the baby may cry. If the baby has experienced passive rolling earlier and the vestibular system is familiar with head moving backward in space, the baby may not cry but would get excited. (Level 2 processing)

7. This new information (rolling) has made an addition to the body map forming in the brain. At the same time, signals have gone to the movement area of the brain indicating that rolling can be used to get a toy out of reach. (Level 3 processing)

8. The baby tries this over and over again. During initial attempts, baby will not get distracted by other toys lying around. But as she gets confident, she may initiate the movement for a specific toy and then get distracted by another toy lying a little bit away. (Level 4 processing)

9. Once baby is confidently rolling over, she uses this skill to modify her environment. If she sees a toy that is beyond her reach, she can roll over and get to the toy. More and more rolling means her abdominal and neck muscles get stronger. As they get stronger, baby starts attempting to come to crawling position. That is how baby will progress to crawling and sitting up.

This is how babies learn and develop. Starting from simple sensory inputs of newborn days and progressing to more and more complex activities that, in turn lead to more complex behaviors and higher level skills. More on how babies learn to sit (here)and the importance of crawling (here).

In the next part, we will look at how problems with sensory processing can affect our daily life drastically.

Happy parenting,

Puja.

Crawling: To Do or not to do?

These days, crawling is very controversial. I want to explain why crawling is important and what are the benefits of crawling, even in normally developing babies.
There is a lot of research proving the link between crawling and certain aspects of brain development, but no studies have directly looked at the effects of not crawling.
There is enough evidence showing that not crawling may lead to reduced strength in the shoulder girdle and trunk in children with disorders like ADHD, autism and learning disabilities.

We all know what is crawling: The baby’s body is supported on palms and knees and the movement occurs when alternate hand and leg are moved forward.

What skills are necessary for crawling?

1. Strength (arm and core muscles):
Strength develops when muscles work against gravity. Baby needs to get adequate tummy time starting from birth onwards to help develop the muscles needed for crawling.
When a baby is placed on tummy, the muscles at the back of the arms, neck and trunk (extensors) are activated. The more they are used, the stronger they become.

2. Balance: Balance comes from repeated practice. Allowing the child to explore and fall (within safe limits) are necessary. Babies need lots of practice of coming up on hands and knees, then rocking in that position and finally figuring out how to move forward

See how babies get progressively stronger:

Why is crawling important?

1. Crawling helps anti-gravity arm neck and back muscles get even stronger. Crawling is the end point of a series of milestones, all of which are important for developing strength in anti-gravity muscles of our body.. Once baby starts walking, these muscles will not be used in weight bearing again.
These core muscles are used to stabilize the arm for all fine motor skills. Imagine trying to write or eat or point if the shoulder is not stable. Hard isn’t it?

2. Crawling helps improve visual skills like depth and distance perception. Let’s do a simple exercise. Stand on one leg and count how long you can stand. Next, close your eyes and try to stand on one leg. See the difference? That is how important vision is for our balance and coordination. As you can imagine, these skills are also very important for all sports.

3. Crawling is the first activity that “connects” both sides of the brain.
Many skills like social interactions (language is processed by the left side but recognizing tone, facial expression and body language is done by the right) and Maths (Right brain handles problem solving while the left handles the actual calculations) need both sides of the brain to activate together.

4. Crawling is the bridge between floor activities to the upright posture of standing and walking.
When babies do not crawl, is seen that parents will give their fingers for support and the baby will pull up to standing while keeping their knees straight. This movement does not develop anything- no strength, no coordination, inappropriate sensory feedback and no practical use at all!

5. Crawling is very important in building a “body map” in our brain and also develops spatial awareness (awareness of how our body moves in space)

6. Crawling and getting in and out of crawl position helps develop knee control and hand strength.
If the knees have not been strengthened, the child will not bend the knees in case of a fall. If the hands have not been strengthened earlier on, they will not be able to stop a forward fall (protective reaction) and the child is likely to hurt their face.

The body map, strength and protective reactions are major components of our body being able to move in a coordinated manner. (3)

Since we just saw the benefits of crawling, why are babies are skipping crawling?
My expert opinion is the biggest factor is lifestyle change. Babies are lying on their back in equipment like strollers, bouncers, car seats, swings and then in passively in upright positions like in bumbo seats, walkers and jumperoos. As parents are constantly on the go, babies are getting less floor time to explore and reach this milestone. Babies are not being given enough opportunity to be on the floor and use and strengthen their muscles appropriately.

For many parents, walking is the ultimate goal, the finish line. But the skills leading up to walking are just as important. Movements are like mathematics, in that you cannot grasp advanced concepts if your core is weak.

It’s not important to crawl for certain duration of time before walking. Getting into the position and moving even for a short few days is enough to provide benefits for brain development.

  What we can do to encourage crawling:
1. A positive learning environment and experience is essential for learning any skill. The best way to encourage crawling is by allowing tummy time and floor time from the beginning.

2. If your child is not comfortable with tummy time there are ways to encourage this. Look up resources at http://pathways.org/growth-development/tummy-time/

3. Children are great imitators. By you actually demonstrating the position and movement, the baby might want to copy you.

4. You could hold the baby on the hands and knees position over your stretched out leg or a rolled up blanket and gently rock him, asking baby to reach for a toy.

5. Once the baby is balancing in crawl position, you can encourage him to crawl towards you by sitting slightly out of reach and maybe even presenting a fun toy.

6. Crawling through tunnels, over pillows/cardboard boxes, under chairs and   up and down  stairs is a great way to have some variety.

To conclude, what does this all mean?

While there is no evidence to suggest that missing crawling will cause problems later, there is enough evidence supporting the beneficial effects of crawling. As a therapist, I believe prevention is better than cure. As a parent, I would  weigh the risks and benefits with evidence and make my choice to encourage crawling.
In the long scheme of things, crawling is just another milestone which comes and goes within a few weeks. But the foundational skills achieved in this time last for a lifetime.
Happy Parenting!

Puja

References:

(1) Shumway-Cook A, Woollacott MH. Development of Postural control In Motor Control: Theory and practical applications. 2nd Ed. Lippincott Williams & Wilkins. (2001) 192-221.
(2) Kretch KS, Adolph KE. Cliff or step? Posture specific learning at the edge of a drop-off. Child Development, 2013. 84(1); 226-240
(3) Bell MA, Fox NA. Crawling experiences is related to changes in cortical organization during infancy: evidence from EEG coherence. Developmental psychobiology, 1996. 29(7) 551-561.
(4) Adolph KE, Berger SE, Leo AJ. Developmental continuity? Crawling, cruising and walking. Developmental Science, 2011. 14(2); 306-318.