Monthly Archives: May 2008

The $80 margarine

Have you ever spent $80 on margarine?  I have!!!  Yes, you read that right.  Jenny can only have margarine that is not made with milk or soybean oil.  That doesn’t leave many options.  We were able to find some last year around passover in a grocery store that caters to kosher Jews which was wonderful.  But it didn’t last forever and the store stopped carrying it once they ran out as it is a product that is only made for passover.  

A dear friend of mine (who happens to be Jen’s pediatrician and also has a son with MSPI) and I have been on a search for more margarine ever since.  We had been searching store after store and website after website for more.  She even had her DH searching when he was away on business trips!!!  The nice thing about this was that once either of us found it we could buy in bulk and split it.  
Both of us were terribly busy the week of passover and I guess there was a problem this passover with one company that usually makes the product not making it so we didn’t get to get any this year.  This led us to great difficult as we were both out by that point.  This started me on a massive search for it before all the companies ran out of whatever they had left as they usually make the product and then once it is all sold that’s it until the following year.  I started an internet search again of speciality butters and came to MidAtlantic Vegetable Shortening Co.  Called them and Yes they make it!!!!  BUT  they are wholesale only so don’t have any of the product left as it was all distributed to the smaller companies.  Ugggh but at least a good start!!
Going next to the phone #’s MidAtlantic had given me (oh and the manager there was wonderful and had even told me that if I was unable to find any to call him back and he would call his competitors and help me find some….special people do still exist!!!)  I started calling the smaller companies.  Struck out a few times so went to the # for the distributor for the state of CT.  She was quite nice but couldn’t help unless I had the specific UPC # for the product.  Took her specific name and told her I’d call her back with this #.  Then went to search for it.  
In this search I remembered that I had bookmarked a site that was a Kosher butcher/deli in NYC called Park East Kosher Butchers that had told me they would have the product again in March to prepare for passover.  I had previously talked to them in Nov or Dec I think and they were quite helpful when I explained why I was looking for it.  So, why not call them again and see if they had any left right???  I get this nice lady on the phone and explain my story.  She says yes they still have some!!!!!  I ask how much as I need some for my Jen and the other Jenn (the pediatrician).  She says plenty so I ask for 6 tubs.  Then I continue to ask some questions as I want to make sure it’s the EXACTLY CORRECT product before I have them ship it.  I mean why have them ship margarine if it’s not one Jen & Jenn can have when we can go to the local grocery and buy ones they cannot have right?!?  
This woman is being quite nice and patient with me and answering all my questions.  A few she doesn’t know and is asking someone that is in her office with her.  A few questions into this the man in the background that she is having help her with the answers says (and I quote exactly) “What’s with all the f**king questions about some damn margarine?”  My jaw hit the floor.  I was shocked to say the least.  But I rein in my temper and finish the order.  I order 6 tubs.  3 for each Jen.  
Then she asks if there is anything else she can help me with.  So I ask to speak to the man from the background.  Well, turns out  he has left the office.   I ask her to give him a message for me.  That I know that I’m ordering a passover product several weeks after passover but here is why: and go on to explain about my 2 1/2 yo daughter and some of her issues….blah blah blah and how rude and unprofessional he was with a customer on the phone that is ordering $35 worth of a product from his company.  (Yes they are $6 a tub)  She asks to put me on hold……..sure why not.  She comes back and says she looked all over for him and wanted me to speak to him but she cannot find him.  Probably better I tell her as if I had talked to him I probably wouldn’t be getting my product when I got done chewing him a new one!!!!!  But to just tell him that they are lucky that I had had such a hard time finding this product as if any Joe Schmuck sold it they would have lost my business and you’d better believe I won’t be ordering any more from them should I need anymore.  Next passover if I’m out then I’ll make sure to order early from someone else.  She’s telling me how sorry she is etc and I was very nice to her as it wasn’t her fault but at this point my blood is boiling to say the least!!!  We hang up and my margarine is to arrive the next week.
It comes (a day later than they had said it would I might add) and I cut open the inventory list.  Now, I had never asked how much it was to ship as I didn’t really care since I needed the product.  I mean the girl was out of margarine and this was the ONLY place I could find it.  
Out comes the packing slip with the totals……6 tubs margarine at $6 each = $36, packing and icing fee $15 and 2 day fed-ex shipping charge $35 totaling $82 dollars for margarine!!!!!  OUCH!!!!!  Guess they got the last laugh huh.  Jerks.

We have cheese again….and some yogurt talk

Living with MSPI means having to find alternatives for lots of items: milk, cheese, yogurt, bread, crackers, chicken nuggets, fish sticks, etc to name a few.  Most are pretty easy to find especially if you have a health food store nearby.  But cheese is one of the hardest to find.  There is a company that makes rice based cheese but the majority of what they make is lactose free instead of fully dairy free.  We found it once in the past and I went crazy and bought 4 packages of it!!!  This was before even finding out if Jen liked it!!  Told you I went crazy!!  Anyway, it comes in slices and at first she didn’t like it and I thought I was out $20…..ouch.  But over time she decided she really wanted cheese and tried it again.  Now she loves it.  Keep in mind this is a 2 1/2 year old!!  

So we ran out a few weeks ago and it was on backorder at all the health food stores in the area.  For this reason I broke down and ordered a whole case (12 packages) that way we wouldn’t run out anytime soon.  I am actually splitting the case with a DF so we will each end up with 6 packages and will be set for awhile.  Her 11 month old eats it.  

The day the health food store called to say it was in Jenny got so excited!!  We went and picked it up and I don’t think she really knew what it was until we got home and she saw the package.  Then she started jumping and yelling “cheese, cheese”.  For lunch that day all she wanted was “cheese on a wrapper”.  Translation…..a cheese wrap sandwich.  We use wraps instead of bread for her as most breads have milk or soy in them.  

We had also ordered and already gotten a case of her rice yogurt from the same store.  Usually I only got a few here and there as they are $1.89 for a 6oz cup….Grrrr!  I was making her only eat half a cup a day to ration it since it is so expensive.  But she loves her yogurt and was getting to the point where she would cry for more each day.  So I broke down and ordered a case of it too.  Now she is happily having 6oz of yogurt daily too.  

Wouldn’t it work this way though……back in Feb I had ordered a yogurt maker and a milk/soy free yogurt starter.  The maker was here in less than a week but the starter was a different story.  The company had lots of issues with this batch and kept delaying the order.   First it would arrive in March, then April, etc you get the picture I think.  I was willing to wait as I had a maker just sitting waiting and I was having to pay $1.89 a cup now.  That was also part of why I didn’t just buy her yogurt by the case before this (the benefits of buying by the case are a 10% discount).  Well, wouldn’t you know that they day I get the case of yogurt in I also open my email and have an email from the company saying that the yogurt starter had shipped that day!!  So, it arrived yesterday and will now sit in my fridge for the next 1 1/2 weeks until Jen finishes the yogurt she already has.  Then Mom will start experimenting with yogurt making.    Keep an eye out for those posts!!!

Benjamin & Samuel’s stories

This blog, of course, cannot only be about Jennifer!!  I did say in my profile you’d hear about Ben’s ears and Sam’s allergies and heart.  So, I figure I’d better give you the background on those so you know it when you get the updates.  

Benjamin had his first ear infection at 5 months old along with a bout of bronchiolitis.  He had to do breathing treatments then too.  He got better and we figured it was just a winter bug and all was over.  Unfortunately, that was just the beginning for him and his ears.  He had another ear infection at 7 months old.  The poor thing would be inconsolable with these ear infections too.  This started a pattern of ear infection leading to an antibiotic then a recurrance of the ear infection about 2 weeks later.  

After 4 ear infections in a row like this he was put on a preventative antibiotic that he took daily to prevent further ear infections to get him to summer when ear infections are supposed to go away.  All the while he also had a chronic yellow-green runny nose.  This would also clear up with each course of antibiotics and restart once they were finished.  He stayed on this daily preventative antibiotic for about 6 weeks.  Within 4 days of being taken off it his nose started again and within 8 days he had a raging ear infection with a high fever.  At this point he was sent to an ENT doctor.  

At 11 months old he had his first surgery where he had a set of ear tubes placed and he had his adenoids taken out.  The adenoids were removed in hopes that they were harboring the bacteria that was causing the chronic runny  nose that was then leading to the chronic ear infections.  His nose did continue to run for awhile even after the adenoids were removed and he was tried on several allergy medicines without success.  Eventually after his second birthday it finally just spontaneously stopped.  He continued to get ear infections even with the ear tubes but he was a different child with an ear infection at this point.  No longer was he in terrible pain and no longer did we have to do antibiotics by mouth.  Now just a few drops twice daily into his ears.  What a welcome relief.  

We were lucky that he was one of the kids that the tubes stayed in instead of them falling out quickly.  Though this luck later turned into them really staying in!!  At 3 1/2 they had to be surgically removed!!  This was due to if they are in too long it can lead to scarring and perm hearing loss.  At this point it was noticed that his tonsils were quite large too.  Feeling that eventually he would have to have them removed due to some sleep apnea issues he was scheduled for surgery again.  The ear tubes were removed and the tonsils were removed. He had a rough time for about a week with tons of pain, thrush, refusing to eat and drink, and some nerve issues in his jaw but then went on to recover quite well.  

In Ben’s style about 4 weeks later he got an ear infection.  This was quickly followed by a second one so a tube was placed again.  Unfortunately, only the ear that got the infection had healed from the first set of tubes so only one tube was able to be placed.  Several months later the second ear drum finally healed and sure enough (just as Mom had predicted) he got an ear infection in it.  Knowing his history we didn’t wait and immediately scheduled him for a tube in that ear too.  So he is now 4 1/2 and on his second set of ear tubes and doing quite nicely.  Hopefully this will be his last.  Hopefully this set will stay in as long as his first set did (but then fall out on their own!!) and by then his ears will have grown enough to be able to drain on their own without more infections.  Only time will tell I guess.

Samuel is Jennifer’s twin brother.  He had reflux as a baby too but fortunately outgrew it by 8 1/2 months old.  He spent some time on prevacid too but didn’t have nearly as hard of a time as Jennifer had with it.  When Sam was born he had a heart murmur.  Being 5 weeks early this wasn’t entirely unexpected but it wasn’t heard by the pediatrician on his first day of life but was heard on the second day.  To just be safe they did an ultrasound of his heart.  It showed that his foramen ovale was still open.  This is common in preemies and we were told it should close in his first few months. 

 He was hospitalized along with Jennifer (full story in last entry under Jen’s story) at 3 weeks old and they were both given another heart ultrasound since they both still had murmurs and fevers.  Both still showed patent foramen ovales.  Again, ok.  At each well check up the pediatrician and I would talk about their murmurs and Jennifer had outgrown hers somewhere between 4-6 months old.  Sam never did.  

Just prior to his second birthday we saw a different pediatrician for a sick visit as I thought he had an ear infection.  He looked in his ears and said they looked fine but then spent a long time listening to his chest and then referring back to his chart.  At that point I knew something was coming!!  He said that even if he still had the patent foramen ovale we shouldn’t still hear the murmur from it.  He then wanted him to have another heart ultrasound.  This time, however, he wanted a pediatric cardiologist to read it.  The others hadn’t been read by one.  He made it clear that he didn’t want Sam seen by the cardiologist, just that he wanted his ultrasound read by him.  We had the ultrasound done about a week later on a Thursday and that Friday afternoon one of the other pediatricians from the office called and said that the cardiologist’s office would be calling to set up an appointment for Sam to be seen by the cardiologist sometime in the next month.  And I was like, “what, I thought he wasn’t supposed to be seen by the cardiologist?”

Tuns out he has a condition called a subaortic membrane or subaortic stenosis.  It is pretty rare but it is a heart defect and needs to be followed by a cardiologist.  We saw the pediatric cardiologist in August 2007, the same month he turned 2.  He actually told us that this isn’t usually diagnosed until between ages 2-3 as this membrane needs time to grow and cannot be picked up until it grows big enough to be seen.  For now he isn’t symptomatic with it so he just needs to be followed yearly with heart ultrasounds and visits to the cardiologist.  If he were to ever become symptomatic then he would need heart surgery to remove the membrane.  They don’t routinely just do surgery to remove them because of several reasons 1) it is a big surgery that comes with risks and 2) the membrane tends to grow back.  

Now, for Sam’s allergies.  This one is easy!!  He had the same chronic runny nose like Ben but minus the ear infections so I kinda figured he wouldn’t really respond to any allergy meds either and put it off awhile.  But after going through tons of boxes of kleenex in a month I took him to the pediatrician.  She suggested claritin and after 2 days on that I have barely seen anything come from his nose again!! Yipee!!  So, he obviously has some sort of environmental allergy.  Hopefully it is only to pollen and not dust and dust mites like his momma!!  Though his nose started much sooner than pollen season so only time will tell I guess.

Jennifer’s story

Jennifer is our little work in progress.  At 3 weeks old, Jennifer started having problems with eating.  This was about the same time that I had to stop breastfeeding and go to formula.  1, still to this day, wonder if things would have been better for her if I had only been able to continue breast feeding her.  During a feeding, she would arch her back, scream, turn purple, draw up her knees, and pull off the bottle frequently.  We tried different bottles, gas drops, thickened feedings, and every supposed remedy out there with no change in her.  Just after this started she was admitted to the hospital for a fever and sepsis work up.  The nurses noticed the feeding difficulties, but she was in the NICU of the hospital I work at as a favor to me and they weren’t totally used to a term newborn that old (almost a month old) so they weren’t totally sure why she would ask this way.

Once discharged, the feeding troubles continued along with frequent screaming unless she was being held and soothed.  On a Friday afternoon, I was at my whit’s end and was about to call to schedule an appointment for her when I noticed that her cheek was suddenly quite swollen.  Another hospitalization (this time at a Yale children’ hospital) and sepsis workup followed.  She was diagnosed after 3 days with paroditis.  During this hospitalization, the attending pediatrician also diagnosed her with silent reflux.  This started the process of her symptoms being minimized.  He didn’t want to treat the reflux at that time due to the difficulty they were having diagnosing the parotiditis and so that he wouldn’t “step on your pediatrician’s toes.”

The day after she was discharged, she saw her regular pediatrician who stated that she “could” have some reflux but that is was also likely colic.  He did start her on zantac though.  At first we saw a difference.  She slept better during the day (we were fortunately blessed with a wonderful nighttime sleeper, though she screamed all day) and initially we thought we had our answer.  We did some formula changes with minimal results.  Each subsequent visit was met by reluctance to increase her zantac dosage based on her new weights.  I was also told at each visit that she would “outgrow” this.  I do believer that at this time it was felt that I was overreacting to a crying baby and that I was overwhelmed at having a 2-year-old and fairly newborn twins.  In my heart, I knew it was so much more though.

At 4 1/2 months, I had finally had enough.  Seeing my baby being in  so much pain and having little time for my other two children, I took her for a second opinion to another pediatrician in my group.  She agreed that Jen had moderately-severe silent reflux and immediately changed her to prevacid.  I had myself a new baby after a few days!!!  We saw major improvement in feeding and her comfort level.  She did have a major flare at 6 months old, where she again became uncomfortable and refused to eat for 2 days.  I discovered the magic of Mylanta Supreme at that point and was able to ward off full food aversion.  All the while, she continued with gurgly breathing.  She was treated with 2 rounds of antibiotics to make sure this wasn’t a sinus infection.  No improvement was noted.

At 7 months old, we made our first visit to a pediatric GI doctor at Connecticut Children’s Medical Center.  I told him I was afraid she was having lung problems from the reflux and that I didn’t want her to end up with asthma.  At this point she had had several episodes of wheezing.  I was told by him that there is no cause-effect relationship between asthma and reflux.  He did a swallow study on her at 7 1/2 months old.  This showed microaspiration, meaning that formula was entering the airway but not fully going into her lungs.  It was recommended that we change bottle nipple types and continue thickened feedings. We were told she would outgrow both the reflux and the microaspiration.  At this point her reflux was pretty stable on the prevacid and besides a hospitalization for dehydration at 8 months old and the continued gurgly breathing, we were doing well.

At 13 months, we took her off her prevacid assuming she had outgrown reflux since she had been doing so well.  At this point I had noticed that she would cough every time she drank any liquids and asked for a repeat swallow study.  My request was not granted as I was told that she had previously been “cleared to eat”.  The first four weeks off prevacid went well.  The last two went not so well.  She would suddenly start to scream inconsolably.  It took me 1 1/2 weeks to figure out that this was reflux rearing it’s ugly head again.  Mylanta helped me figure out that it was reflux and not behavioral.  It would calm her instantly.  At this time she was put back on the prevacid and I again asked for a swallow study and the coughing had continued.  Again it was denied.

At 19 months, Jen was first seen by a pediatric pulmonologist also through Connecticut Children’s Medical Center for continued asthma symptoms that were viral, exercise, change in temp and emotionally induced.  She was diagnosed with infantile asthma, which came as crushing blow to me.  This was why I had first brought her to the GI doctor.  She was started on singulair, and continued on inhaled albuterol and pulmacort as needed.  Singluair was a wonder drug for her.  It basically took all the asthma symptoms away.  Upon follow up 3 months later with the pulmonologist, I mentioned the coughing with liquids to her and told her the GI hadn’t been concerned.  The pulmonologist ordered the swallow study right away.  Jen miserably failed it and had evidence of full aspiration with every swallow.  She was immediately put on nectar consistency thickened liquids and no longer coughed when she drank.  I really liked this pulmonologist but unfortunately she left soon after this follow up visit for another children’s hospital.

Upon recommendation of the speech pathologist performing the swallow study, I took her to an ENT doctor at the hospital I work at next and had her vocal cords looked at.  They were terribly inflammed and swollen.  He said this was due to undertreated reflux and were causing the swallowing problems.  Once the GI got this news, he finally started taking us seriously and tripled her prevacid dosage.  About this time, she started having episodes at night where she would wake up coughing, gasping, choking, and screaming.  It was assumed that she was refluxing and waking up when she was aspirating and having difficulty breathing from the aspiration.  This would happen 4-6 nights per week and 1-3 times on those nights  Based on this it was elected to do an endoscopy and bronchoscopy.

The endoscopy showed no inflammation in either the stomach or esophagus, so we know she is on enough acid supression to protect them.  She did, however, have some inflammation in the small intestine and was tested for celiac disease.  Luckily this was negative.  The bronchoscopy showed snall amounts of both inflammation and cells evident of aspiration, but both were fairly mild.  

At 2 years old she had her vocal cords rescoped and there was no improvement so zantac was added at bedtime.  Jennifer’s issues were minimized again at this point by the GI doctor when I mentioned the continued vocal cord inflammation and the fact that she was now coughing at times on the nectar consistency liquids.  This was the last straw, as I knew there was so much more to Jennifer’s story.  Needing more answers and help for her I transferred her care to a multidisciplinary team (called the Center for Aerodigestive Diseases) at Children’s Hospital Boston.  They are wonderful, and at her first visit there in October 2007 they did more for her than had been done in all her previous visits combined.

The first thing the team there did was take her off milk and soy.  She had some symptoms with a formula change as an infant that led them to believe that she had MSPI.  With this strict diet, she is almost reflux free.  They also rescoped her vocal cords in the office, and with the added zantac they were finally healed!!  

The next visit in Feb 08 entailed a triple scope (this was delayed several months by a bout of pneumonia) involving an endoscopy (GI), bronchoscopy (lungs), and laryngoscopy (throat/upper airway) along with a 24-hour esophageal impedance study to quantify her actual number of daily reflux episodes.  During these scopes, it was found that the inflammation in the small intestine found on her last endoscopy  had healed on the milk/soy free diet.  It was also found that she has a rare anatomical abnormality called a type 1 laryngeal cleft.  This is what is causing all her dysphagia (swallowing difficulty) and aspiration and is the bigger picture that I kept saying all along was there!!!   Just after her scopes her swallow study was repeated to help them determine her next treatment plan.  She was found at that point to be aspirating the nectar consistency liquids too.  She was then immediately put on honey consistency liquids.  Due to the worsening dysphagia she is scheduled for surgery later this summer to repair the laryngeal cleft.