Not Alone

To Whom This May Concern: Letters from other mothers

 

My son, who is 4 has been on Neocate since he was 8 months old, August 2009. He started on Neocate Infant (before the DHA/ARA) and then graduated to Neocate Junior. He has multiple food allergies. So many his only safe foods are skittles, white potato, dum dum lollipops, and Tostitos white corn chips. Even that is a hit or miss because of the canola oil. Neocate has been a life saver for us. Our story resembles a lot of their stories they promote on their website. Horrible rash head to toe, falling off the growth charts, severe vomiting and diarrhea. Neocate turned our lives around.

 

This past Saturday, December 29th, we ended up in the ER because my son had face swelling, hives, and was coughing and sneezing. I gave him some Benadryl before we made the decision to take him in to see if it would help any but it didn’t. Once he realized we were going to the hospital he got very anxious and started crying hysterically. I think that boost of adrenaline helped him in the long run. By the time we were seen the doctor said we didn’t need to go down the steroid route. Benadryl would be fine. We just wrote it off as one of those who knows what he got in contact with. Until the next day. He broke out in bad eczema all over, was coughing and sneezing and itching. I haven’t seen that severe of eczema since before we were diagnosed. I had to give him a higher dose of benadryl and was ready to head back to the ER but then his symptoms started to go away. The only thing that he came into contact with that day was the Neocate. The coughing and sneezing happened within the hour of consuming his cup of Neocate. My husband stayed up all night researching Neocate reactions and found information about other families having reactions to cans manufactured in May which ours that we have currently are. Their dates are May 29th. I didn’t want to believe my husband when he brought up that it could be the Neocate. What is our next option if it is? There are none. This is the only reason he is alive and thriving. It makes me sick to think that this is what is causing it and I am even more terrified of what will happen if we can’t get this changed back. Why is it causing it? What changed? They said just their label changed, is it the dyes in the label? The adhesives? Something in the can? A new formula or is it getting cross contaminated with something else they manufacture? Our son is a smart, charismatic, loving, adorable little four year old and for us to come so far from where we were to now have this happen is just not even something we even considered once we found Neocate.

 

I really hope a resolution can be found so my son and whoever else no longer has to suffer. He’s been through enough as it is in his four years.

 

Sarah

 

 

 

To Whom it may concern,

My daughter Lidija had a reaction to the new label Neocate and within three days, it was obvious and became more obvious as events unfolded.

 

Lidija is 6 and has been on Neocate Jr since October 2011. At the time of starting Neocate, her symptoms included renal insufficiency and was later diagnosed as acute renal failure after it had cleared. It cleared up instantly with food removal and moving to Neocate.

 

Lidija has handled all of the Neocate products just fine. The only one she hasn’t tried was the infant. I fully expected her to tolerate the new label as well, just like everything else. We had been able to keep her relatively stable since the complete removal of foods in late August/September this year. I offered Jennifer Gonzalez all of the old label Neocate Jr Unflavored cans we had as long as we could get our hands on new label replacement cans. When Jennifer found out we hadn’t yet trialed the new label, she insisted on sending us some and getting her on it before sending out the old label cans. She sent them to us while we were staying at Ronald McDonald House in Albuquerque (therapy and follow ups with specialists). We received them and started her on it the next day. Here is her story.

 

With Day 1 of the new label Neocate Jr, there wasn’t much to notice except at the end of the day, Lidija had a bloody nose (one of her allergy symptoms). We figured she bumped her nose or something. By the end of Day 2, she had numerous nose bleeds with one that just didn’t want to stop. I almost took her to the ER that night and then it stopped. By the end of Day 3, the nosebleeds continued and then, that night, she vomited a lot. She was up all night with a lot of pain and vomiting. I took her first thing in the morning to the pediatric clinic at UNM. She had blood in her stools and needed IV fluids. She was tachycardic and one of the nurses thought it was a good idea to check her pulse, revealing poor oxygen saturation. An X-Ray was consistent with Reactive Airway Disease. She has these symptoms with allergic issues. She was discharged at 6:30 PM that evening from the clinic and to return in the morning. She was not kept inpatient primarily due to our staying at RMH on the UNM campus.

 

Since Lidija was due to see Nephrology and they were overbooked on her appointment day, they sent the nephrologist over to see her and do a routine renal ultrasound. It was done on Tuesday and was abnormal. Lidija’s prior renal issues were diagnosed after the worst of the crisis was over and had always had normal renal ultrasounds as they had never been done during a crisis. The nephrologist and her PCP concurred that she would not have recovered the way she did with the simple change back to old label Neocate Jr had it been viral or some other kind of infection. The main concern from her PCP was that we had something else to feed her, old label cans of Neocate Jr.

 

Lidija had been doing better than she ever had been before in these last several months. So many of her overall symptoms were improving and she was happy, just glowing with delight on a daily basis. There were no signs of issues with Gastroparesis that could have caused it. This truly was a very rapid onset acute issue.

 

My suspicion is that this is rice related, although I cannot be certain. Her history is rather long and complicated, but in October of 2011, she had a major crisis that turned everything upside down. It was the first time I heard the words “Acute Renal Failure.” Although the answers as to what happened are just not there, it seems rather clear that the contributing factors to her decline last fall were Pork, Pears, and Rice. In fact, the addition of small amounts of rice, at that time, may have been the very thing that pushed her over the edge into the renal issues and other very serious symptoms.

 

Her current diagnoses are:
Food Allergies, Asthma (Reactive Airway Disease), Gastroparesis, Probable Mast Cell Activation Disorder, resolved Failure to Thrive and some developmental delays. Her symptoms are rather unique, but foods can affect her vision and coordination.  She has had other symptoms such as dilated eyes. There are several other issues that have yet to be diagnosed.

 

I am open to Lidija’s story being shared, but would appreciate sensitivity to our privacy, at this point. I still need to speak with her local doctors about what occurred.

 

We are overwhelmed with providing for her complex needs such as Neocate Jr, travel to appointments and her having two sisters with similar, although less extensive, problems. I am currently appealing the denial from Blue Cross Blue Shield for Neocate Jr, as well as trying to get a bill in New Mexico to get better insurance coverage for our fragile children. I want to help. I would have wanted to help before Lidija’s reaction to Neocate. The reaction brings home the reality that our children are on the edge. They are so fragile and need safety. The reality that a company such as Neocate hasn’t put forth a greater effort to resolve their production issues is more than disturbing. These are our babies and in order to survive, they need those around them to earn the trust they have been given, the job of providing a safe product for them. Our children are the most vulnerable of the vulnerable. Nutricia has taken on the job and has a true calling in feeding these babies that no one else had been able to feed before. They can’t fail at this job. There is far too much at stake and we cannot allow the unthinkable to happen.

Vivian

 

 

I am writing to you re: a story that was on fox 4 news that my daughter in Fl. saw and then called me right away, since she knew we were having difficulties with her twin sisters who are also on neocate junior.  I am writing to express the concern I have and maybe this could be the answer we are looking for.  My twin daughters are 19 they will be 20 on New years eve.  My daughters are the only two in the world being treated for at this time for their condition , hereditary sensory autonomic neuropathy type II.  They have been on neocate before it was FDA approved, for about 18 1/2 years, after trialing many formulas and having anaphylactic reactions to most of them.  My daughter Jenna has had a history of gagging and retching, plus vomiting.  She underwent a major surgery in September for a stomach division and a roux n y procedure to help.  She had a PICC line and was on TPN from April of 2012 until the end of October 2012 at which time she started back on the formula, and although now she is not gagging, retching and vomiting, she is screaming and beating her head, rocking her head back and forth twitching we have video taped this and have shown several physicians, who are not sure what the problem is, This is becoming increasingly worse, not better, and the other twins’ symptoms are not as severe, but she is kicking and screams out in her sleep.  We do not know if this is related or not but I feel it is worth looking into. I did call and speak with the company that makes Neocate and the woman who took the call, Christine, assured me that nothing has changed in the formula, just the label, but she did take down my information and said that if my doctors wanted to call they could and they would help direct them to a different formula that we could use… I have notified my daughters’ GI Dr. and gave her what little information I have.

 

Lisa

 

 

Our daughter Penelope Rose has been in and out of hospitals and ER’s for quite some time now. If feels like this snuck up on us and took us by surprise as we had the basic complaints before then with colic and teething, growth spurts and Soy issues. We feel like we are lead in a circle only to end up at our starting point. I guess it is partly because her symptoms seem so multi-systemic that it can be hard which path to choose first.As a gifted and talented toddler, Penelope started talking and signing to get needs met at 4 months with words like “milk, Mommy, night night, bath, pain”, reading at 10 months and by 12 months had mastered reading and speaking hundreds of words.

Somewhere after she began to walk, her fast development both physically and cognitively went from being above average to average…to below average..to dangerous especially as far as her weight was concerned. This all correlated with our weening her from the breast gradually and introducing new foods. This all happened FAST too. In a matter of weeks. Within a few months she began showing signs of severe gastric distress and anything she ate made her physically ill. She began showing signs of disconnection between the left side of her body and her gate changed…she began limping. We have also seen signs that she is experiencing numbness or tingling in her extremities. She can go from being high functioning to almost non-functional within a day depending on whether or not she has had solid foods. She will cry for hours in pain and struggle to communicate during these “spells” often stuttering and slurring her words and pointing rather than talking in full sentences as she can do on good days.

She can’t sleep through the night and wakes every hour on the hour crying and confused, unable to be soothed. The rashes that she can have during a reaction vary from eczema to open weeping sores and it can hurt to urinate as well as pass stool (if she isn’t severely constipated which seems to happen after every reaction)We have had issues with her stool turning black, severe constipation, her body swells and her belly puffs out till no clothes fit her. She can gain many pounds quickly (we realize now that it is fluid retention) and it can take over a week for this to clear. Usually by the time it does she’s lost all the weight that she gained during the flare up and a few more pounds. We notice changes in her color and even recently were floored when her toes and fingernails turned purple during a reaction.

She currently reads at over a first grade level and has thousands of words in her vocabulary. We mastered the Dolch sight words in only one day when she was a year old. She is perfectly capable of communicating her pain but simply doesn’t understand what is happening. Our local Hospital, AI Dupont Nemours…has unsuccessfully tried to treat her not once…not twice…but four times now . We have finally found one doctor to follow through her medical issues but he is as baffled by her as everyone else has been. She has a doctor now that is dedicated to helping diagnose her but we have no answers yet.

We are left wondering where we can go now to get our baby diagnosed. and what is worse, she is showing reaction to her medically necessary formula since they changed processes in some of the other formulas. Based on her reactions we fear a cross contamination is taking place and we are now trying to buy back dated and unexpired cans of the formula to hold her over until the FDA can get us some answers! Regardless, we know that this formula isn’t going to suffice for her much longer and we don’t know what to do.

Please take the time to contact me if you have any ideas on how we can get her helped! She is our blessing…our light…and as a family her medical condition is costing us more than our own health. We are fighting to keep our house and afford her medical care! We are fighting to stay together as a family but as you know food permeates every fabric of American society…it is hard when your child wants to eat something as simple as a banana and you know that it isn’t possible without adverse reactions. Any help you can offer is greatly appreciated!

This fundraiser is set up so that we can:*Pay for her specialized formula at 42 dollars per can!*Start paying medical bills*Give us funds to be able to travel to specialists and hospitals out of our service area*allow us to use outside specialized laboratories in testing procedures*Set up an emergency fund to support us if we in fact end up in the hospital again.Report · 11:57pmHere is her Youtube Page that has gotten about 5000 hits since this summer. If people can view it I can make money off of it too.http://www.youtube.com/user/Penelopesproudmommy?feature=mhee. SMART BABY. Her fundraiser page is here:https://fundrazr.com/campaigns/7JuKe

 

 

Angela

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