OK, this Blog is gonna be a doozie! Items to be covered include:
**18 month well visit at the Pediatrician
**Virginia state Medicaid re-screening for waiver selection
**Trip to the ENT
18 Month Well Visit:
Ian has finally made it up onto the charts for weight and height in all categories. Ever since taking care of the post-prandial hypoglycemia and getting over the nosebleed and viral gastroenteritis hurdles, the last few months have been filled with growth. Ian measured 22 pounds and 4 ounces and was 31 inches long. By charting standards, he seems to be hovering around the 7th percentile for his chronological age (based on his date of birth) and the 15th percentile for his adjusted age (based on the date he would have been full term and due to be born). His height is even more impressive. Somehow, he has made it to the 13th percentile for chronological age and the 40th percentile for adjusted age. When Ian turns two years old adjusted age, they will stop “adjusting” his age. The ped is very happy with his height and weight status and ratio and for once, that is NOT an item of concern.
At the beginning of the appointment, we discussed discipline. As Ian has become quite the whiner and complainer lately, my ears were open. Adding a bit of our own flair to the suggestions presented, we will be investing in a time-out booster seat with a seatbelt. There is a “No- 1- 2- 3- Time-out” protocol we are going to try. Over a couple weeks, this should help us begin to instill some rules of order again. Apparently, 18 months is the age when toddlers are seriously testing boundaries and the word “NO” is insignificant. We will be starting out with one behavior. Once the routine starts working, we will add another, and then another and so on.
The visit also comprised of a questionnaire about current behaviors. Later on, I found out this was a subjective Autism screening type of questionnaire. Although there are a few things on the plate to be watching, Ian passed the questionnaire.
Most of the observance over the next 6 months will be centered on progression of speech and identification. Eighteen months is the approximate age when children begin to correctly identify objects when asked. While Ian isn’t doing this yet, we don’t have a routine for learning and practicing. Picture book and the such will now become a much larger part of playtime. However, ironically enough, Ian is now able to put chunky puzzles together. Yesterday, he took all the pieces for his transportation puzzle and correctly placed each piece. He knows the image and color and shape and is able to identify them autonomously.
Speech will be another focus for us at home. Since Ian is only saying “mom” and “no” and “nana” on a regular basis, we will start saying objects and the like when we work with picture books. Another component is sign language. Ian does know one sign, “more.” We have all been working on that for about 3-4 weeks now. This afternoon, as we were getting into the car I told him “just one more time, honey” as I was buckling his car seat belt. He then proceeded to gather his fingers together and tap them several times. I praised him for the recognition and he was very pleased with himself. As we use a few more signs (please, thank you, eat, ball, etc.) he will begin to take the sensory nerve impulse and turn it into a motor nerve function. Right now, he is not turning it into a motor nerve function that is audible, but he is making it in movement. The ped isn’t worried about his speech, since he is really 16 months adjusted age, but he would like us to begin doing a bit more to help him at home.
Moving on, we had a lengthy discussion about the diarrhea dilemma. It was actually more of a troubleshooting session between the two of us. As we both continued to interject information and ideas, explanations began to surface. Two ideas seemed to prevail above others:
- Two months ago, Ian had the viral gastroenteritis. During this illness, the villi...
are flattened, or in a sense destroyed, keeping them from digesting lactose, and other foods. Unfortunately, they take time to rejuvenate and return to normal anatomy. These villi play a large role in absorption and digestion. The enzyme lactase, which is used to digest lactose, milk sugar, is on the tips of these villi and is extremely easily destroyed.
We need to make sure not to be confusing Lactose Intolerance with Milk allergies. Lactose Intolerance is an inability to digest milk sugar. Milk allergies are an inability to digest milk proteins.
The time for the villi to rejuvenate can be months depending on the severity of the virus. Ian is still struggling to rejuvenate. However, we discovered that even though he is receiving lactose free food in his food recipe concoction, the foods we use with feeding therapy and snack-practice, have mild lactose in them. Most “regular” crackers, cookies, and even Goldfish cracker have some lactose in them. Because of this trace exposure, Ian’s villi are constantly being re-attacked as they are trying to heal.
Image of Normal Villi anatomy (top) versus Flatten Villi anatomy (bottom)
We will be looking for food labels with the symbol stating kosher or dairy free foods for about 7-10 days. Hopefully, we will notice some improvement as he begins to heal. As I thought about when we gets GI viruses, dairy is usually one of the last things added back into the diet. Not many people have horrible GI bugs with diarrhea and them reach for the cheese and ice cream the first day back.
Ian has been tested within the last year four ways (blood test, patch test, prick test, and endoscopy) for food and milk allergies and they have all been negative. In the past, Ian has been on hypoallergenic formulas and they were of no help.
- Ian’s food contains large protein and fat molecules which are contributing to the diarrhea. When we began with CHOP and began mixing a special recipe for all his foods, each piece made sense. We are using a whey based product to decrease the gastroparesis (delayed gastric emptying). However, we are adding Microlipid (Rx) and corn starch, and pectin as well.
The Microlipid is a long chain fatty triglyceride. The longer chains allow for more time in Ian’s body to digest, as to not cause a quick rise in blood sugar.... triggering insulin release and leading to hypoglycemia. The corn starch is a longer chain sugar (dextrose). this also gives Ian’s intestines more time to “work on” the food, keeping the blood sugar stable just like the Microlipid. Thirdly, the pectin, is simple canning pectin purchased at the grocery store. I am sure the clerks think I am canning for the apocalypse based on the amount of pectin I buy regularly.
Anyhow, while all these things are fine and good for Ian’s digestion, blood sugar, and cessation of retching..... they do carry with them some side effects. Regardless of if we noticed the change before the virus came along, Ian passes larger fat and protein molecules through his stool than the average individual. The trouble with this is, as these large molecules move through the intestines, as most foods do, they carry with them a lot of water. The larger molecules however, are very “dense,” creating a higher osmolarity than other foods.
Food in the digestive system feels a need to “equalize.” Since there is a higher osmolarity in the food, which is now in the colon, it retains the water... and even gathers more water at times. Typically, water is absorbed through the colon and firmer stool is formed. Diarrhea of almost any kind is a result of food traveling too quickly through the colon, not allowing enough time for water to be absorbed. (Other diarrheas can be caused by allergies and anatomy malfunctions, including missing enzymes and the such.) Since Ian is passing so many of these larger molecules (because they did their job not depleting too quickly in the digestive phase), he is passing more water through his stool.
These two issues, in combination with looser stools from tube feedings anyway, bring us to what if currently happening. He did reassure us that the Florastor for Kids and Culturelle for Kids probiotics daily were helping a great deal and are probably contributing to why he is retaining enough water to stay hydrated. The probiotics and the elimination of the dairy for a while should get us to a point where we were prior to the virus. With properly healed villi, and the virus long gone, we should be back to loose G tube stools only minorly exacerbated by larger fat and protein molecules.
*I looked for something to visually explain this one, but trust me... there was nothing you wanted to see!!
We were also told Ian now has eczema.
He has several patches on his back now and few on his arms and shoulders. Typically, this affects toddler’s areas of creases including the inside of the elbows and the backs of the knees....... but as we all know, Ian never follows suit. We were given a steroid cream to use when it is red and scaly. Hopefully, he has not inherited my awful, terrible skin. It isn’t looking good so far!
The good news is we can use this cream in combination with our anti-fungal and skin protectant to make a super-duper diaper cream to help combat the rash from all the diarrhea! Keeping my fingers crossed... I am beginning to feel like a compounding pharmacy in my own kitchen these days. Our wonderful pharmacy has even sent metal mixing spatulas home in our prescription bags for other things. It’s always a nice surprise to find them! Hey~ it’s the little things in life!!
After the trip to the ped complete, we were off to the next adventure!
Virginia State Medicaid Re-Screening for Waivers:
With Ian currently covered under the Elderly-Disabled-Consumer-Directed waiver, (EDCD waiver provides for personal care aides) we do not receive any specific medical care. While Medicaid doesn’t specify that they cannot do medical care, it is not listed in the scope of duties. This includes: pushing meds, G tube feedings, button cleaning and care, along with G tube emergent situations.
Therefore, we decided to have him re-screened for Virginia’s Technology Assisted Waiver. This is an INCREDIBLY underutilized resource in our state. Only 2 children in the entire state used this waiver to receive Medicaid last year. The definition of a child who qualifies is essentially any child who uses a piece of medical technology to replace a normal bodily function (ie: trachs, colostomy catheters, feeding tubes, respirators, etc.) I cannot imagine why more children are not using this.
The public health nurse from the Health Department, along with a social worker from Social Services came to our home to perform the screening. Since he was screened in November for the EDCD waiver, I knew the drill. In order to qualify for the tech waiver, children need to score 50 points on a checklist. According to her calculations, based on G tube continuous feedings, changing dressings, and numerous prescriptions, Ian tallied 51 points! This qualified him for 10 hours of RN care daily.
Shortly after her screening and departure from our home, I received a phone call. She had mistakenly marked NG tube on the checklist, giving him 40 points, instead of G tube, providing only 15 points. This now knocked Ian down to only 25 points, eliminating him from qualification. Nothing against NG tubies, but I’m not really sure why a surgical stoma and tube would need less medical attention than an NG.
As it stands now, we will be sticking with EDCD waiver and look forward to begining care with our new nanny next week. In the future, there is an option under the EPSDT care plan to add Private Duty Nursing to our waiver if we find a strong need.
This program is a federal program instilled to provide medical and other types of care needed by individuals who may not otherwise qualify...... IAN! He always, always, always seems to fall outside all boundaries and lines.
... moving on...
Trip to the ENT:
As the afternoon progressed, we ventured to the otolaryngologist, the ENT. Highly recommended by our ped, Ian was being seen for recurrent ear troubles. Last month, Ian passed his hearing test, but unfortunately, as usually, there were underlying issues creating problems.
As we arrived in the consultation he began to lay out pretty standard criteria for ear tube surgery qualifications...
- 4 or more middle ear infections within the last 12 months, or a significant increase in middle ear infections over the last 3-4 months.
- Chronic fluid retention in the ear that is not draining, regardless of the presence of infection, for more than 6 months.
- A medical complication that prevents children from receiving typical treatment for middle ear infections, AKA antibiotics.
Unfortunately, Ian meets all of these criteria. He actually even surpasses #2 and #3 by quite a bit. The chronic fluid build up can dehydrate over time, turning into a honey type consistency and creating what is known as “glue ear.” Also, since Ian is unable to handle antibiotics due to his incredibly oversensitive GI tract, he is most certainly a candidate if this one stood alone. According to the ENT, if Ian had only say 2 ear infections and no chronic fluid, he would still qualify based on the preventative need of them, to refrain from needing treatment. While ear infections do not HAVE to have antibiotic treatment, children like Ian with upper respiratory and vagus nerve issues underlying, Ian is unable to “ride them out.”
If chronic fluid buildup is left in the ear for an undisclosed, variable, amount of time, it can lead to balance problems as well as hearing loss. It was described to be much like a sense of “ear congestion” with off-balance and pressure being the main symptoms. Ian has always seemed to be slightly “wobbly.” I placed most of this on his continual need for compensation while wearing his backpack. In all likelihood, it is a combination of reasons. Ian’s ear fluid accumulation has been present for about 9 months or so, at least! The peds are always telling us he has fluid in his ears, but it is not infected. I began thinking it was normal!!
He mentioned usually this is outpatient surgery performed at an outpatient surgical center. He then proceeded to interject that he is willingly to bet a lot of money that his anesthesiologist will see Ian on paper, and request it be performed at the hospital. I was not in the least bit surprised by this. While Ian has had anesthesia 6 times now, they are always cautious of him. He reassured me that it would still be scheduled as outpatient surgery and with no complication, we would be able to return home the same day.
He sent me with a medical clearance for to have Ian’s pulmonologist fill out, stating that all his asthma-like conditions were under control and safe for surgery. Since it will be in a hospital setting, we may need to wait 4-6 weeks for an opening. Hopefully, we will be able to work something out before that.
The tubes are a small circle, looking much like an “o-ring” that are placed into the ear drum itself, allowing access to the middle ear. As fluid accumulates and potentially becomes infected, this fluid has somewhere to go to drain, hence relieving pressure and inflammation. Also, worth mentioning, ear infections are still a small possibility with ear tubes; however, antibiotics topical drops can be used. When dropped in to the ear, they penetrate through the tube opening to the infection and heal from the outside, not systemically. This would be perfect for Ian.
It seems as though this surgery will be scheduled right around Easter time and between our two CHOP visits (Metabolic Diseases and Genetics department, and Surgical followup with the reflux clinic).
I would love to take the time now to praise my little boy and tell him how incredibly proud I am of him. He has demonstrated strength and courage beyond what I could imagine! I look up to him everyday as he continues to amaze me.
While not thrilled with the idea, Ian managed to “body check” the coffee table and ottoman I have stacked to block the bottom of the stairs (FYI: baby gates simply get rattled and fall down... they are not Beaner-proof! Ones that mount to the walls simply won’t mount when both sides a stair spindles at the base of a large, broad, open to foyer staircase. Also, Ian simply moves anything... I don’t know how the child does it. he must have Rugby players coming in while I am in the other room to do it for him. I picture him gulping down spinach or drinking Dr. Jekyll’s elixir, and exerting moments of sheer strength to move these things.) After removal of the obstacle, he climbed up the stairs...... all 16 of them! I was in the kitchen and hear running around in the hallways upstairs. As I turned the corner, there he was, standing at the top, laughing and giggling away as if to say “Look what I did, Mommy..... Yea!” He was so proud!!! Truth be told, I was proud too...... terrified, but proud!
In addition to “body checking” the table, he has discovered he can crawl underneath of it and get to the opening on the bottom stair. I will be thankful when we move to the townhome and he only has a few stairs in a row, instead of 16!
Speaking of stairs, he now travels down the stairs on his own..... not alone, but on his own. As we walk beside him, he “walks” down, sliding onto his butt. He does not travels down backwards on his belly as most children do..... oh no, why would ever want that!?!?!? He stands at the top, sits facing forward, puts and foot on the stair below, then shimmies down until he is standing on the next step. he continues this for all 16 stairs until he reaches the bottom. One would think this takes up most of the day, but somehow, the child moves so quickly, sometimes I can barely tell how he is doing it. We have tried time and time again to teach him to tummy way... the safer way. but, what can I say, he is MY KID! And I never do anything the easy way... why should I expect anything more from him? Soon, he will master this alone.
Aside from the stairs being his favorite “toy,” he has been enjoying a lot of time with Nana and MiMi playing on the neighborhood playground. He even plays with the mulch and grass!!! His sensory issues seem to be improving each month as he is introduced to new things. He also enjoys “dancing,” rocking back and forth to Sesame Street songs and other greatest hits!
While he doesn’t say many words, hearing him say “mom,” “mum,” “mom-mom,” and the like melts my heart. When Tom mentions me sometimes while I am at work or out of the room, he picks up on it immediately and continues to repeat the words. He stills likes to snuggle and will wander across the room while watching a video, just to come sit on your lap and watch the video. He loves the company of others. Once we move, I am going to be enrolling him in a few play classes and fun activities to start exposing him more regularly to the world of other children.
I am sure I am missing things, seeing as though he does something new everyday.
We have a few upcoming appointments, other than the ear tube surgery. In early April, we will meet for a consultation with the genetics and metabolic diseases department at CHOP. This is more of a protocol visit, than a problem focused exam. Genetics are something that has NOT been examined and a few of Ian’s doctors, and myself included, would like to rule out any anomalies.
Later, in the middle of April, we will travel to CHOP again to followup with the clinic that is managing Ian’s care and feeding routines. The surgeon there will re-evaluate and hopefully make a few food and routines changes that will move us closer to being without the tube. The hope is still to have the tube removed before elementary school. Only time will tell. A long time ago, I can to terms with it being there forever. Having it removed would be a nice change. I imagine that he will also do a clinical exam and gather some history since we saw him last, concerning the hernia repair. Since this “slipped Nissen,” Ian really hasn’t expressed any reflux pain, hernia pain, spitting up, or trouble. I do think that he has some issues swallowing due to the Nissen being so tight, but I am unsure about the “failing” of the surgery playing a role. They are the experts and they will advice us as to the plan for the future.
**As always, I am more than happy and eager to share of the medical knowledge I gain from doctors, visits, research, and other families. I would however, once again, like to remind you that I am not a diagnostician and by no means would advocate using any of this information without the consultation of a medical professional. I am always willing to field questions and help others, but doctors....... most doctors...... (have to get that in there!) should be the ones managing care.**
Sorry for the extremely full and lengthy update........ but imagine this...... most of this, occurred today, including the stairs climbing and confirming future appointments and discussing them with doctors today, in addition to the appointments we had with them. As you can imagine, I am tired, and I am going to bed!! Goodnight all... and please, excuse my typos tonight!