Showing posts with label high needs baby. Show all posts
Showing posts with label high needs baby. Show all posts

Wednesday, April 25, 2012

GERD

I talk a lot about my daughter having had GERD (Gastroesophageal Reflux Disease), but I've never done a post explaining what this term is all about.

Simply put, reflux is when our stomach contents backwash into our esophagus. This happens to many people, child or adult, and can either be symptom-free or associated with a host of problems (pain, burning, breathing difficulties, weight loss etc) Reflux becomes a disease when the episodes cause some sort of problem or condition.

Most babies have reflux, given that their digestive system is still developing. Spit-up can be occasional, or quite frequent. Parents of children who frequently spit-up know that it's an inconvenience and can result in a lot of laundry! But beyond this, the lives of the child and/or parents are not negatively affected.

Reflux can become an illness or condition when it is excessive, and linked to some symptoms. It becomes a disease when the symptoms are severe, and sometimes in very young children, life-threatening.

No one can really say whether my daughter had an "illness" or "disease," but labeling it GERD just helped me to put things into context. Suffice it to say, our lives were thrown for a loop for many months, as we struggled to figure out what was wrong with our little baby.

The symptoms of GERD vary from baby to baby, so I can only speak from personal experience. Before we got a true diagnosis (although it was still a bit of a guessing game), some of the things we noticed were:


  • Constant crying, especially after breastfeeding and at night
  • Fussiness at the breast
  • Coughing or choking when lying on her back
  • Excessive spit-up 
  • Inability to sleep, unless in an upright position
These symptoms began slowly, and we started noticing them around 3 weeks of age. At first we assumed we just had a colicky baby, but everything came to a head around 4 months of age (when colic has normally already disappeared). 

We made several trips to our family doctor, who at first, just waved it off as colic or "normal" baby behaviour. However, most people who spent the night with us knew that A was not "normal." The crying was intense and high-pitched, and I instinctively knew that she was in pain.

After my own Googling and searching around, I began to suspect that A was suffering from a mild form of GERD. She was still gaining weight (phew), but we could no longer cope with the crying and night-waking (which occurred every 30-45min). Once I became more specific in describing the symptoms A seemed to be experiencing, my doctor agreed with my suspicions. She prescribed Ranitidine (Zantac), a strong medication used by adults to help with the painful symptoms of reflux.

Immediately after the first dose, we suddenly had a smiling and giggling 4 month old on our hands. The transformation was a 180, and we knew for certain that she had been in a lot of pain.

Unfortunately, the medications used for reflux are not long-lasting, and come with a host of side effects. The Ranitidine worked on occasion, but A's body seemed to get used to it after a while, and it no longer had any effect. As well, it caused rashes, dry skin and constipation. After a trip to CHEO and a visit with a pediatrician, we switched to an even stronger medication (Prevacid). I was extremely nervous using this medication, as it had not been approved for use in infants. We continued to use it occasionally when things were really bad, but again, the side effects seemed worse that just dealing with the symptoms, so we eventually stopped.

Around 8 months of age, we did begin to see some improvement, and by 1 year, the reflux was gone (at least visibly). A continued to have digestive problems for another 6 months or so, until finally, we were able to say we were GERD-free.

The toll that this took on our family life was significant, and for a long time, we didn't want to have any more children, for fear that we would breed another GERD-ling. However, here we are again, praying that this little girl/guy may be blessed with a stronger digestive system. We feel confident that if this happened again, we at least have the tools and knowledge to deal with it. 

To help other parents out there who are struggling with this problem, here are some tips and other pieces of information I learned along the way:

1) If you suspect something is wrong with your child (even if it's just colic), keep a very detailed record of symptoms. Record exactly when crying starts and stops, and whether it's associated with feeds or not. Also mark down any other things you notice to be "off." This can be very useful for family doctors, who otherwise might discount things as run-of-the-mill.

2) Seek help and support. I found this forum to be really helpful, and purchased this book to read. I also poured over all of Dr. Sears' books, especially the one on "fussy babies." You may also need extra help around the house from in-laws, friends or even hired help.

3) Cry-it-out techniques and sleep training do not work for babies with reflux, and your child's pain should never be ignored. If you feel in danger of harming your baby because of excessive crying, lay her down in her crib, leave the room and call for some help. Scream, yell, kick things - do whatever you need to do to get your frustration out. Just don't take it out on your baby.

4) Some babies with reflux disease sleep fine. The majority do not, because lying on one's back can exacerbate the symptoms. You may need to consider alternatives, such as wedges or even propped up mattresses. Although safety should be foremost in your mind, if you listened to all the "experts" out there on "back-to-sleep", you would be dealing with a screaming infant all night long. I broke every rule in the book, and I'm proud to say that it worked for me. I even learned how to sleep upright, with my baby on my chest, propped up with a million pillows. Desperate times call for desperate measures.

5) Most doctors will tell you that breastfeeding is the problem - whether it's just the myth of breast milk as "bad" or because your child may have genuine allergies (which you are passing through the milk). If you hope to breastfeed, I strongly, strongly advise you to seek help from a Certified Lactation Consultant. It would be extremely rare that formula would ever be better than breast milk. Out of desperation, we tried formula twice, and endured the worst crying episodes we had ever seen in our child. I quickly went back to breastfeeding, and tried to eliminate some of the major culprits out of my diet (dairy and soy).

6) Listen to your gut (no pun intended!). I can't say this one enough. You know your baby the best, and you know what is best for them.



Tuesday, April 24, 2012

The High Needs Toddler

As first time parents, we're constantly questioning our skills, our judgement, and our ability to steer our child in the right direction. When A was a baby, I found myself consulting books and websites almost daily. I would type questions in Google, such as "why does my baby cry all day long" or "how do I get my baby to sleep longer than 45 minutes."

We thought we were just crappy parents. We couldn't understand why we were more tired, on edge and struggling more than our fellow new parents. We soon discovered it had nothing to do with our parenting abilities, and everything to do with the little person we had been blessed with. A was not only a high needs baby, but she also suffered from GERD, or gastroesophageal reflux disease. Medication and time were our saviours, and by one year of age, we felt we were finally exiting the fog of gloom we had been living in for so long. I've heard of parents of GERDlings opting for vasectomies after their experience, and I fully understand this decision.

Our little baby grew, and turned into an engaging and extremely verbal two year old. She speaks in full sentences, and says things like "Mommy and I had an argument, and I was so frustrated" (honestly!) We thought that when she was able to tell us precisely how she felt, that her tantrums and frustrations would subside.

Not so. Clearly, the books are not always correct. Having a child with good communication skills does not  equal a life of ease in the toddler world. Our high needs baby has grown up into a high needs toddler, and as of late, the household dynamic has not been good. There has been screaming (A), tantrums (A), yelling (Mommy) and more tantrums (Mommy).

And maybe I'm just making things sound worse than they are. As with all moms, I get to see the full spectrum of emotions from my child - when we're out (especially in the outdoors) she's a perfect little angel.

Being pregnant and sick has not helped the situation, and every morning that I'm working has turned into a battleground between myself and my daughter. Husband has started early mornings at the golf course, and misses most of the commotion.

Part of the problem seems to be A's "sensitivities"....to pretty much everything. She can't stand socks on her feet (she says they hurt, and the seam bothers her); any pants that are touching her feet are immediately taken off and thrown on the floor (and if they're tight in the waist, watch out!); brushing her hair is almost impossible given her curly knots; brushing teeth is a hit and miss; her coat bothers her when it pulls her sleeves up; and the car seat buckle is always too tight. And rather than just dealing with these issues by whining, A launches herself into full-blown tantrums over the smallest annoyance.

So far, my answer to the problem is three-fold:

1) Stay calm. Talk in a quiet voice. Reassure her that socks are not her enemy

2) Ignore the tantrums. This is hard when there are no rooms to lock myself away in my house.

3) Lose my cool, and begin yelling in return. Not a good strategy, I know.

The morning ends with me hauling a screaming A over my shoulder, no socks, no shoes, no coat, and hair not brushed. The neighbours must think we've lost it.

I need a change, because I have to deal with this by myself for at least 5 more months while husband works at the golf course. And starting my day in a terrible mood is not an option.

So far, my only solution has been to research products that might make dressing a little easier. Luvmum*** is a local Canadian business that carries brands of clothing for children with sensitivities. I plan on purchasing some seamless socks, and maybe some comfortable pants. As for the rest of the morning routine, I'm searching around for a fun/magnetic calendar we can use to teach A about the benefits of grooming :)

Any ideas for this tired mama?

***Luvmum is no longer operational. If you have any suggestions for other companies selling clothing for kids with sensitivities, leave a comment below!