I wrote about Noah's Hypotonia many months ago in this post. However, it has been a long time since, and I have learned so much more about his condition and all that his Low Tone affects. It is not just merely his inability to use his muscles but so much more. I am still learning but I wanted to share some of the other facets to this condition I have come across.
- SMALL VEINS: each and every time Noah has had to be stuck with a needle a whole team of phlebotomist's or nurses have to take part it what I like to call the Needle Stick Circus. Many screams and tears have been shed by not only Noah but his Mamma too. I loathe going in for a simple blood draw. Noah's muscles are very mushy for lack of a better word. His veins are hidden deep within these mushy muscles and are very small and hard to find. Typically, muscles that have a lot of tone are more "solid" and the veins sit on top of them. If you look at your hand you might be able to see your own veins clearly. It order to find Noah's veins extreme measures have to be involved. Here are some tips to prepare your child for a blood draw especially if they are low tone but they may just make the whole process better for any child.
- Drink lots of fluids. About 30 minutes to an hour before a needle stick get your little one to drink as much fluid as they can. This will help their veins take on a more plump-ready-to-stick form. It will be much easier for the needle stickers to actually feel the veins and know which one is more viable to use.
- Heat: If you know without a doubt that your child has tiny veins buy some of those hand warmers that you can break up and pack around with you and a very thin cloth. About 10 minutes before the needle stick apply this warm compress to the top of their hands or top of their feet or inside of their arm whichever place you know works best for them. The heat helps to kind of draw out the vein.
- Red Light: If the needle sticker cannot find a vein and if they are new to this whole "small vein" condition then request and see if they can turn off the lights and use one of their little red lights to help find the vein. This will prevent multiple pokes and stabs. The red light shines through their skin and helps them locate veins.
- Request an IV TEAM EXPERT: All nurses and techs believe themselves to be an IV expert but did you know that many hospitals actually have a certified team of individuals that are actually called IV Experts. These individuals are very skilled and talented when it comes to small veins and will save a lot of tears if you are able to get one to help out right away. Many of them are busy and it might take a few minutes to get one that is available but if you have the time I highly suggest this route.
- Forehead Vein: There is a very large vein that sits right on the top of your forehead called the Frontal Vein. This is the cause of that massive bloody mess you get with the slightest pump of the head. This is also my favorite spot for Noah to get an IV. Yes, he will cry but it only takes literally one poke of the needle, a couple pieces of tape and a little stocking cap to cover his head and all the pain and stress is over. I would not really recommend this for a simple blood draw but for an IV that will be there for an extended amount of time it is a great option.
2. DIGESTIVE SYSTEM ISSUES: Low Tone not only affects the muscles but also all of the internal organs as well. They can also be described as weak in nature and can perform at a less than desirable manner. The whole digestive system can be affected by hypotonia and Noah suffers from this condition greatly.
· Reflux aka GERD aka Sandifer’s Syndrome aka Acid Reflux Disease: Reflux is common in babies and Zantac is normally the liquid medicine of choice prescribed by doctors. Zantac helps to reduce the amount of acid that is already in the fluid in their tiny tummies. Prevacid is another highly prescribed drug that can come in liquid form if concocted at a compounding pharmacy but it has a very small shelf life this way. Or you can get small capsules that you can break apart and mix with a spoonful of food. This medication should usually be given in the morning and helps the stomach stop producing acid but does nothing for the acid that is already in the stomach. Hence the reason why Noah is currently on both acid reducing medications. Reflux can take on many forms. Severe pain from indigestion and heartburn to constant throwing up. You have to be careful what kinds of acid containing foods they are eating and what kinds of other foods aggravate their reflux. Milk protein is a common one as well fruit juices. Be careful to not over fill their stomachs and to always keep them in an elevated position to let gravity help keep their stomach from sending spurts of fluid shooting up their esophagus.
· Swallowing & Chewing Issues: A Swallow Study can be performed to see if your child might suffer from swallowing issues like silent aspiration or a weak Epiglottis or a really large tongue size. All of which Noah has and all of which makes it really hard for him to take in enough calories a day. Chewing is another hurtle that kids with hypotonia are faced with as their muscles in their face and mouth are so weak that chewing hard enough to actually mush food is a very daunting and difficult task for them. It takes years to help them learn how to enjoy chewing and to swallow the bulk of what they just chewed.
· Sensitive Gag Reflex: When kids with Hypotonia have swallowing issues it also means that they might have a very sensitive Gag reflex. This makes it hard for them to learn how to swallow anything with more texture than stage 2 baby foods. Oral stimulation with as many approved oral toys or foods can help make sure they do not gain an oral aversion. Noah has a major aversion to liquids and will only drink them while he is asleep and we have tried everything to change this with no avail.
· Hiatal Hernia: We just found out through an upper GI Barium Study (x-ray while they drink barium) that Noah has a Hiatal Hernia. His is at the base of his esophagus right where it meets his stomach. Each time he refluxes a small portion of his stomach gets sucked into the esophagus. A simple surgery can fix this but since Noah is so young (12 months) his GI doctor wants us to wait and see if as he grows this hernia will get smaller and go away. I am not sure if this hurts him or not. I pray it doesn’t.
· Stomach Dumping (too fast or too slow): During this same Upper GI study that Noah had done it was found that his stomach dumps into his intestines really fast…like super-fast. This is usually not the case with those with Hypotonia because according to the GI doctor they normally see slow dumping from the stomach into the intestines. However, since Noah’s stomach dumps really fast it also makes for many daily blow outs and is also another factor is why he isn’t gaining weight like he should. His digestive system is moving so fast that it doesn’t have time to fully absorb all of the nutrients and calories from the food we were able to get into him. There are medications to help speed up slow stomach dumping (but it will cause diarrhea) and a medication to slow down fast dumping (but it will cause severe constipation). Right now Noah is not taking anything as constipation is something we want to refrain from at the moment and are trying our best to increase his calories by increasing his appetite with a medication called Periactin.
3. MALFORMATIONS OF CERTAIN MUSCLES: This is our newest and most unknown facet of Hypotonia but it looks like 2013 will make me somewhat of an expert on this. When a child is unaware that they have a certain muscle to move a certain way or a certain body part they tend to wiggle and move around until they find what works for them. This tends to teach them to use muscles in the wrong way or to use one muscle for a movement it shouldn’t. For example: Noah tends to throw his upper body and head backwards a lot. It makes it really difficult to hold him. This is a bad behavior he has learned will get him to be mobile. He first started to do this when he would lay in his bouncy chair and he taught himself that if he throws back his head he will get a bounce from his chair. So then he would repeat it over and over and we all thought it was adorable because in our minds he was experiencing cause and effect. However, this only taught him to throw his head and back backwards whenever he wanted to “move himself”. We finally broke this behavior through therapy but it has reared its nasty head again when we introduced a Walker and he taught himself to once again throw his head back and push on his heels then we would go backwards in the walker. Again, we were so excited he was actually playing and moving in his walker to realize that we started a bad routine again. He is using his back for everything therefore not using his arms or shoulders or hands. Same could be said for any body part or muscle that is being used in a bad way or not being used at all. Noah’s feet are another concern for us this year. They have started to become a bit malformed because he pulls them upwards and outwards and the muscle is starting to get strong where they shouldn’t. Looks like a trip to an Orthotic Doctor is next on our list.
4. PATIENCE, PERSISTENCE, AND THE LITTLE THINGS: These are just a few of the most wonderful skills you as a parent will learn, gain, and continue to grow without really even knowing it. Raising a child with Hypotonia requires constant “invisible therapy” as I term it. You will learn how to do everything in a way that will help them with their hypotonia symptoms. Feeding, bathing, playing, changing diapers, getting them out of bed, and even rocking them to sleep will play a part in you as their caregiver helping them learn how to do things in a precise way to help their muscles learn correctly. It will soon become second nature and you will no longer realize you are doing it and therefore it will no longer seem as work to you and just become part of you and your child’s bonding experience. You will also find that you will have this whole new level of patience. Not only with your child but with everyone around you. Waiting at the pharmacy for an extra five minutes no longer makes you want to pull your hair out. Rushing things is no longer an option and you gain a whole new appreciation on the details that go into the simplest of things. You will also be so in tune with your little ones that nothing will be taken for granted and the little things become enormous celebrations. We celebrate almost daily with cheers and smiles and sometimes even tears over Noah grabbing something or looking directly at something. All these cheering and smiling and jumping for joy moments make for a wonderful life and a great environment for your little ones to grow up in. So much can be learned from raising a child no matter who you are or what obstacles you have to overcome. Hypotonia is just another excuse to pay closer attention to the little things in life.