Things to learn about the first few months of your new journey with Down Syndrome.
When we had Case we were unsure of what our next move was going to be. It was like we were thrown into a game of chess, never playing before, and expected to make all the right moves. We were clueless! We were hearing terms we had never heard before, some of them sounded scary, and most of them were like a foreign language to us.
I wanted to put together a post for those who are starting this journey with Down Syndrome, and try to help with some questions you may have and help you break down some of these terms, why you may be hearing them, and what we have learned so far. Maybe share some knowledge we wish we'd have known!
First things first, find a good pediatrician. Our pediatrician that we had chosen before Case was born, ended up being the perfect one for us, and many of our friends who have children with disabilities use him as well. So lucky for us, we didn't have to change. I would say that you need to find someone who is either going to do their research for you, and be willing to learn about Down Syndrome, if they haven't dealt with it much before. Or, find someone who is already familiar with it, and able to educate you as you go.
One thing that is pretty much certain is that you are going to have more doctor appointments than other babies. It does eventually slow down, and I've heard it comes in waves. They will go a lot and then everything will be great for awhile, and then you are going to have to address other issues as they come.
Things such as thyroid tests, leukemia tests, sleep studies, echo-cardiograms, nutritionists, feeding consultants, audiology tests, opthalmologists, physical therapy and occupational therapy are all things that you may want to address with your pediatrician during these first few months, or things that he/she may be addressing with you. Every situation is unique, and oftentimes some of those things aren't needed, but I would say for the majority of parents I have talked to, their babes have needed most of these things. If you haven't heard these terms and you have already seen your pediatrician, I don't think it would hurt to ask them what they think about all of these issues.
Chances are your pediatrician doesn't have a child with DS, so it is your job to be their advocate and speak up if you feel like something is wrong.
Some of these may sound nonnative to you, so let me break them down just a little bit.
Case saw an Audiologist (hearing doctor) twice outside of the hospital tests that they made us go back and do. Often times children with DS have hearing impairments and because Case failed his hearing test in one ear at the hospital all three times, our pediatrician recommended we see an Audiologist. Case ended up passing, and there haven't been any red flags since. We will follow up every six months for a while to watch it close and make sure he is still hearing well. The first test was hard because he had to be asleep and have these big ear phone looking things in his ears. They scheduled an hour and a half for our appointment that day, just in case we needed to get him to sleep. They even provided a dim room and a rocking chair and we still barely got him to sleep in the last fifteen minutes or so. They got the test done quick, it was just the sleeping part that was hard. The second time we followed up with the Audiologist was a lot easier. They did the same types of tests on both ears, and he didn't have to be asleep for that one. The reason kiddos with DS don't pass their hearing tests in the hospital most of the time, is because their ear canals are so much smaller than a typical kid, making the test hard to get accurate readings. So try not to panic if your baby fails, or has failed. Yes, hearing loss is much more common even later in life in people with DS, but it could be a false test too. Pay attention to your baby. Are they turning for sounds? Do they recognize your face?
We were also sent to see a Nutritionist after we were out of the NICU for about a week just to make sure he was gaining weight like he was supposed to be. Case had a feeding tube because of his lack of muscle tone, which made feeding really hard for him. We spent 11 days in the hospital/NICU because of this. If you are there now reading this, be patient. The day will come when you bust out of there, and I promise your baby will learn how to drink more than 3 mls at a time. If you are in the NICU and the only thing that is keeping you there is a feeding tube, express to the nurses that you want to learn how to put it in. In our case, because I told the nurses I felt comfortable with learning that, they let us go home after practicing a few times on him.
BEWARE if you do practice this on your baby, it is the saddest thing ever! You basically shove a tube up their nose, and try to get it to follow the nose curve back to the throat and down to the stomach. SOOO SAD. Case screamed and screamed while I kept shoving it trying to get it to bend back down the throat. Be prepared for your heart to break. Case's tube ended up being able to come out only about a week after being home.
Just before we left the hospital to bring Case home we met with a Speech Pathologist, who was specialized in feeding. She came into Case's tiny little room and watched him try to eat, and taught us tips and helped us understand why he was doing certain things. I would highly recommend trying to get a consultation with a Speech Pathologist who specializes in this, we learned a lot. It was really beneficial to have it done in the hospital as well. We were already there and we weren't making any special trips to another appointment. I think talking to a SP vs. a lactation specialist is the most beneficial considering all the studying on disabilities SPs have done. That's just my opinion though.
Opthalmologists are eye doctors. Our pediatrician recommended Case to see one at 6 months. His eyes tend to cross, and because I had a lazy eye when I was younger (it can be genetic), and it is common with Down Syndrome, we didn't wait any longer than that. He did end up needing glasses. The brand that works the best for us because of his lack of nose bridge has been Tomato Glasses. They are the only glasses that small that we have found that have a nose piece you can adjust for them to fit the face better. All the other ones just sat too low on his nose and smashed his eyes. We learned that after getting one pair and realizing they just weren't going to work. You can buy them off amazon, just take into account they are from China, and they tend to run a little smaller than the glasses here in the USA. I would definitely recommend sizing up one size when ordering them.
Thyroid tests are often done on kiddos with DS because many have thyroid problems. Hypothyroidism is where your body doesn't produce enough thyroid hormone. It can be really hard to detect in a baby with DS because many of the traits that are related to it, already come with DS. Talk to your pediatrician if you are feeling concerned about this. From what I know it is most common to check this at birth, again at 6 months and then at 1 year as well. Once again, talk to your pediatrician! I am no doctor by any means.
Hearing the word Leukemia can be quite frightening, and to be honest it still scares me. When our pediatrician first threw this word out there it took me by surprise. I had absolutely no idea that those with DS were up to 20 times more likely to have it. Scary, I know.
The good news? They are typically able to fight this cancer better than those who don't have DS, amazing right? They figure there is some genetic mutation in the blood of those with DS making them more vulnerable to get it, but also able to fight it off better. I still am trying to wrap my mind around that one. Either way, the survival rate is higher. Doesn't quite make sense to me! The other good news is that they will be checked yearly (usually) for this, meaning that should they have it, it will more than likely be caught fairly early.
Down Syndrome brings many things with it, and one of those things is Obstructive Sleep Apnea. Gasping for air, snoring, constant waking, and restless sleeping are all symptoms to watch for when considering Sleep Apnea.
Individuals with Down Syndrome have a different anatomy than those without. Smaller airways, and low muscle tone contribute to this. According to this source, almost 60% of children with DS have a sleep study done by the age of 3.5-4 years old. Many older individuals end up having CPAP machines to help them breathe during the night. You can read more about what this is here.
If you are still reading this long post there's a chance you are having a child with DS or you have one already, which means you are probably familiar with the types of heart conditions that are often associated with Down Syndrome.
Case has a hole in his heart that will most likely have to be operated on when he is anywhere from 3-5. It doesn't seem to affect him. He grows and he eats well. Two of the main factors they watch for when there is a heart problem. On the other hand though, there are many babies I know who have holes in their hearts that have needed immediate surgery because it is causing problems with growth and feeding.
Once again, I'm no Cardiologist. If you have concerns with your baby, talk to one. I would imagine though, that one of the first things they will do for your baby, or have done for your baby is an echo-cardiogram. It seems like that's pretty much protocol for a baby with DS. Check their heart first. That was the first thing they did the morning after Case was born. Things such as an ASD and VSD are terms that describe different types of defects that have to do with the heart. Read up on them here if you want more details with some high tech terms.
I think it is safe to say most people reading this know what Physical Therapy is, but what is Occupation Therapy? I get asked that a lot so let me try to explain it simply. Occupation Therapy is therapy for the things that you do daily. Things like eating, fine motor skills, sensory skills etc. These are all things that OTs teach/help with.
Case started Occupational Therapy when he was about 4 months old. I have heard of people starting earlier than that, and if your state provides someone that comes to your house for that, I would say take advantage of that, but for us they did not.
We had our state infant to toddler program come and assess him and they felt he was doing well and nothing was of great concern for us, so we didn't feel the need to rush it. Every baby is different though. If you feel like your baby isn't holding their head up like they should, or eating like they should it would probably be better to see an OT sooner than later. It's a personal preference, and something that should be talked about with your pediatrician.
At almost 9 months old Case still hasn't seen a Physical Therapist because he is doing really well. When we get closer to walking our OT said she would tell us when she felt it was appropriate for him to see one. I know some babies that have been seeing a PT every week and they are much younger than Case. Once again, this is a personal preference. I think it depends a lot on how much you are willing to work with your child at home, and how much assistance they need. Every baby is different, and some may learn sitting up early and some might need some therapy with that.
I get asked a lot what the severity of Down Syndrome Case has. I always try to explain it like this. Trisomy 21 (Down Syndrome) is a third copy of the 21st chromosome. That is all. There isn't something on that third chromosome that says extra high functioning, or low functioning. Every kid is going to be different. There is a broad spectrum, and you just have to anticipate your own child's needs. Try not to compare your child to other children with or without Down Syndrome. Some of these things may become familiar to you in the first few months of your child's life, and some may not until later in their life, and others won't ever become familiar. Your journey will probably be similar to ours in many ways, but also different. Just like in a game of chess, everyone plays different. There is more than one way to win the game.
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