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| I will try to make this as short as possible and just give an overview. Cameron was born at 34 weeks. The pregnancy was complicated by first trimester bleeding and pre-term labor beginning at 17 weeks. At this time I was put on Terbutaline every four hours. There were also the almost weekly trips to Labor and delivery for injections of Terbutaline. Pre-term labor stayed consistent until 26 weeks at which time I was put on Nifedapine along with the Terbutaline as pre-term labor became more threatening. At approx 32 wks I had a positive Fetal Fibernectin test and was given steroid shots for his lungs. He was born two weeks later at 34 wks weighing in at 5lbs 9oz's and 21 inches long. He was released home with me 3 days later despite much trouble regulating his body temperature and difficulty with feeding. At 4 weeks he became sick for the first time. His first pediatrician would not take me seriously and referred me to a new mom's group saying I was over anxious.I went out and got him a new pediatrician 1 week later and he was then diagnosed with a lung infection (not RSV though) and severe ear infections. He was put on antibiotics and given a home nebulizer with Albuteral to be used every 4 hrs round the clock. I also told the Dr. about these shaking spells that he would get and she did not really pay any attention to me. Also at a later point I had called her after hrs because I got so alarmed by one particular episode. She said it was the albuteral. Although, the first episode had happened when he was about 3-4 weeks old, before the nebulizing treatments began and continued even when he was not using albuteral. At this time a community health nurse was assigned to us, I later found out that was because of concern for my son's quality of care as he was so young to get sick. I was nursing him full time up to this point (6weeks old) which had been very difficult. He did not have satiation or hunger cues so he did not know when he was hungry or full, this seemed exerbated or caused by reflux. He was fed with everything from the breast to med droppers to keep him gaining weight and hydrated. On average ,he would consume 1-2 oz per hour. I kept talking to his pediatrician about reflux as it was getting quite severe. All my time was now given to feeding him as he would projectile vomit most of what I gave him... kind of a puke... eat... puke�eat process all day and all night. At 4 months of age, the Dr took me seriously due to the fact that our health nurse went to the appoint with me! He was put on liquid Zantac. Through out the last 4-5 months he had been sick frequently w/ infections to his ears and lungs and was on and off antibiotics. I mentioned his development to his health nurse who was still coming to our house weekly and she stated that she had noticed so delays. She put in a referral to Early Intervention and Cameron had an evaluation. At 5 months he scored between 1 month and 3 months on everything. He qualified and he started weekly therapy sessions in our home. His development from 5 months to 1 yr of age was sporadic and never catching up to his chronological age or gestational age. He would learn a skill and then un-learn it, but not be replaced by another newly learned skill. He also was not developing much in certain areas such as language and comprehension. At 8 months of age, our Healthy Start home helper and community health nurse found us another pediatrician who specialized in children with health challenges. He was also our Healthy Start worker's pediatrician (though her daughter is not special needs).It was now nearly impossible to keep Cameron feed and hydrated not only due to his existing issues of reflux and poor body regulating cues, he had significant dysphasia (choking) issues which had been slowly becoming more prominent and contributing even more to lung infections and ear infections due to aspiration. We were seen by a feeding therapist/speech pathologist from ESD 2 maybe 3 times. Cameron was now approx 8 months old. All anyone could figure out was that he had poor suck, swallow coordination. I was instructed to put rice into his formula (we stopped the breast completely at 6 months due to what his pediatrician suspected was a milk/lactose intolerance) The feeding therapist is the one who figured out for us exactly how much rice per oz of formula. (he had been tried on soy, lacto free, regular and finally did best on Nutramigen) His new pediatrician put in a referral to a gastro-mineralogist. The gastro ordered an Upper G.I swallow and did find significant refluxing, but due to the fact that the contrast is so thick, we did not see any aspiration. It was witnessed by our health nurse and the Dr. during the appointment. During the same visit, the gastro also witnessed one of Cameron�s shaking spells which had become more pronounced and frequent with age. The Dr asked what his apgars where at birth. They were 6 and 8 due to breathing difficulty. He made the comment that they looked like seizures of some sort and that may be part of the swallowing and aspiration issues. He stated that we should look into getting him seen by a neurologist to check it out. He said that if there was any oxygen deprivation at birth, that could contribute to dysphasia and possible neurological issues. Cameron was put on Prilosec with the possibility of an naso-feeding tube. I was obviously not excited about this idea and said that if the meds worked and I could continue to feed him and successfully keep his weight steady, that I would prefer to do that. He and the health nurse both agreed. After the appointment w/ the Gastro, Cameron had his next check up with his pediatrician, I mentioned what the gastro had expressed in regards to a neurological evaluation. Cameron's pediatrician also had the opportunity to witness 1 or 2 of Cameron's spells during this appoint and also agreed that they looked like seizure type activity. We then got a referral and appoint with the Neurologist. Our health nurse, who was still with us weekly, went with us. Cameron did have apparent left side weakness, one of the factors in getting ESD involved was that Cameron could not seem to turn his head to the left or use the left side of his body as well as before, this had also been noticed by ESD and was now confirmed by the neurologist along with his Ped. He put Cameron on Topomax and scheduled an EEG which took place approx 1-2 months after starting meds. (It later came back as normal, but the neurologist said that did not rule out seizures, which he still believed they were.) For about 2-3 months we seemed to maintain a functional (comparatively) balance between all the health issues and meds. At about this time he was also put on Singulair for his reactive airway/asthma and then Clonapin which replaced the valium he had been on for about 1-2 months to help with the seizure meds and his sleep. So, a sum up of the first nine months. Current diagnoses, provisional or otherwise include, reflux, epilepsy, reactive airway, and developmental delays. He was on 1) Topomax-seizures 2)Clonapin-seizures 3) Xopenex (variation of albuteral which he was switched to due to the excessive shaking spells on albuteral)- asthma-as needed 4) Singulair-asthma 5)Prilosec-reflux We balanced this all fairly well for about 2-3 months and then at about 11 months old, ESD and Cameron's Dr's decided he would benefit from adding another therapy called neuro-sensory, which is like physical therapy for your 5 senses. Around the 1 year mark is when he had his one year evaluation with his Pediatrician and all of the info from the previous year such as therapy evaluations and such. He had been receiving therapy 1-2 times per week since 5 months of age. He now also had a diagnose of Sensory Integration dysfunction and a provisional diagnose of autism. (these two are commonly related) At 17 months of age his developmental levels were between the ages of 9 months and 10mnths. He had an overall score of 1% for a chronological age of 17 months. Also, at his 1 yr appoint, we realized that he was no longer gaining weight. He was now more active and getting enough into him was becoming more difficult. By 13 � months he had lost 2 lbs and I was getting quite frustrated with the idea of continuing the way we were. At this point his Pediatrician told me to stop pushing him to eat and just present him with a bottle, cup...etc. We did this for one week and then had a weight check. (I was also charting his exact intake during this time period) He had lost another � lb in that week. I asked if it would be advisable to go ahead with the feeding tube.(Again, his home health nurse was present for this appoint as well) His Pediatrician agreed 100% and said he would call Cameron�s gastro that week and if I did not hear from the gastro by the end of the week to call him directly. During this week wait, I was supposed to continue with letting him eat only what he wanted. By the end of that week I was so exhausted and well, you can only imagine a 1 yr old who is hungry but will not eat! So, on Friday I called the gusto�s office, obviously distraught wanting to know when we were going to get him in so he would stop loosing weight and being miserable. Well, the Pediatrician had never gotten in touch with the gastro due to the fact that the gastro was gone on vacation. Well, the first the gastro ever heard about the tube was from me being upset and adamant that something be done. (that is how it was documented) Well, when the gastro got the message from his nurse when he got back from vacation, he called Cameron�s pediatrician. (Now Cameron had not seen the gastro for quite some time as his only treatment with this Dr. was for reflux.) The gastro did not see in his file why it would be needed and was concerned about the request for the g-tube. Cameron�s Pediatrician gave him the info about the weight loss and not being able to maintain his weight. The gastro called me one hr later and scheduled the placement for the next Wed, 5 days away. (this makes me believe that they were more than a little concerned about his weight given the fact that it usually takes about a month to get in) He got the tube placed and had a little more difficult of a recovery than we had hoped but nothing significant. We were discharged and went home and the next day his tummy was so bloated he couldn�t even cry. I called, obviously upset and his gastro told me it was normal, I guess I didn�t believe him quick enough as he put in the file that I was overly concerned about it. (how can a mother be too concerned!?) Anyways, things got better and Cameron started to gain weight again. Though I could not get his father to tube feed him. (by the way, daddy had never gone to any Dr�s appoints, ER visits or therapy up to this point) Cameron�s father and I had a very unstable marriage and he had no real interest in his son other than the things that were typical. About 2 months after Cameron got the tube placed and was fully recovered, I left his father. I made this choice based on several things. One major issue was domestic violence and the second issue was his neglect at properly taking care of his son's medical needs. When Cameron had been nearly a year old, I had gone back to work on a very part time basis in the evenings when his father was home. Up until this point, if he did not want to give meds or feedings, I would. Now that I was working in the evenings, it became apparent that he just did not want to and did not feel it necessary. Then there where situations such as when he took him in the front seat of the car on an hour trip without being in a car seat. Well, I left with a restraining order due to fear of what he would do when he came home from work and found us gone. Cameron and I were staying in a place that he could not find us. Once we went to court, I was given custody and dad was given supervised visitation once a week. Well, to say the least he was pretty angry with me! After that, it just all went down hill. There was no way he could get custody of our son due to his issues with anger and the fact that he did not know how to or chose not to properly care for our son. During the time that we had been gone which was approx 2 months, Cameron head began to learn new skills and become a little more in tune with his surroundings. His therapist's also noticed marked improvement since he and I had left the situation we were in. Then all of a sudden, it all came to an end. The words Munchausen By Proxy made their entrance into my world and it has not been and never will be the same. My ex found that he had no basis for gaining custody, unless he could prove I had been abusive to our son, which I had not, so he thought he was out of options. His lawyer then told him about MSBP and that was what he decided he would use to gain custody of our son. I was served with papers from my lawyer that me son's father and his lawyer were subpoenaing all of my medical records back to the time I was 10 years old. I do have a few health issues, and that combined with the fact that we have a special needs son was all they needed to get their claws securely around the MBP accusation. By July 8th 2002, dad had custody of our son. We never actually went to a custody hearing. This was due to many factors which I will briefly explain. The two months that I had sole custody, I was mentally and emotionally terrorized by my son's father. I was repeatedly threaten with criminal charges of abuse and going to prison as a result, as well as termination of parental rights. I was told that if I ever had another child it would be taken away at birth, called names and emotionally beat down. Now most of that was just talk and should not have affected me to the extent it did, but I had not yet been able to break away from the mental and emotional chains that domestic violence leaves behind. Then there were the strange things that would happen...like being followed (without a doubt), investigators confirming that our phones had been tapped, our computer being hacked by his IP address, coming home and our home feeling different and something being moved from where we kept it. Friends, or those I thought were friends, turning against me due to his manipulation and lies. So, in essence, one part of the reason he has custody is that he was still able to break me down, even though I had physically left. Then there was my low income legal aid lawyer who advised me to give up custody. This advice he said was due to the lack of financial resources that I had to build my defense. The low income and monthly payments applied only to the lawyer hours spent on the case. It did not include any depositions, the purchase of such depositions when done by the other party, expert witnesses, subpoenas, medical records ( For some reason I had thought you did not have to pay for your medical records or those of your child�s, but apparently you do depending on the medical establishment.) custody evaluations, mental health evaluations, and then the evaluations they wanted to my son to have as well. My lawyer advised me that without the financial means to access all of this, I would most likely lose custody of my son by order of the courts due to lake of defense. All those things needed are my defense, without them, there was no defense. I was advised that if I lost custody through the courts, that I would never regain custody of my son, but if I willingly signed over custody, then, when I had the means of retaining my defense, I would have a chance at custody. Well, I was under the impression that you lawyer knows and understands these things better than the layman does. I agreed and my lawyer proceeded to write an offer to send to my ex's lawyer. Well, for one thing, I am now being held responsible for the conditions of the change of custody that my lawyer drew up and advised was appropriate. Never having gone through any of this, I had again agreed with his recommendations. Of course our letter was returned with one of their own. We did this back and forth for a week or two and then reached an agreement to be signed. The were several requirements involved for my end of the order and basically none for his by this time. He was going to be ordered to pay one of the credit cards I had taken out to buy clothing, diapers and such for our son, and 200.00 dollars per month for 6 months. (I had been a stay at home mom for several years) Basically my ex said yes I want custody, but I want it this way and if you don't agree with what I want, then I don't want custody and I will take you to court for it and I will terminate your rights based on MBP abuse. Well, at the signing of the order, I felt that what he had required I could comply with and so I was not going to argue it. What is said was that I had supervised visits for the first 30 days and then after I completed a psychiatric evaluation, within 30 days, and was deemed no threat to my son, then I would have unsupervised visits. Well, this was a definite affront to my pride, but I wanted what was best for my son, and I was advised that this was in the best interest of my son and regaining his future custody. There were several conditions within this order, but I was not worried as I had nothing to hide. The conditions where that I had to have a psychiatrist perform the evaluation, not a psychologist. Ok, doesn�t matter to me so why fight it. Well, come to find out, psychiatrists don't do mental/emotional evaluations, psychologist due them. I could not find a psych that would do it, they all said that I needed to have a psychologist do it, that they handles medication related evaluations. Hang up one in the order that my lawyer did not catch. Then it said that I had to waive all my rights to confidentiality and allow my ex and/or his attorney to meet with the psych BEFOR the psych ever met with me. I also had to agree to the psychiatrist openly communicating with my ex and/or his attorney DURING the evaluation process. Along with that, they demanded release of all notes during the evaluation process and to meet with the psych at the end of the evaluation, without me present, as well as my ex being allowed to accompany me to some of the appointments for the evaluation. Well, apparently this is all unethical.....guess what, I could not find a psych to do an evaluation that they do not do, as well as one who would agree to performing an unethical evaluation process. Hang up two my lawyer did not catch. Then on top of this, there was the 30 day deadline that said if I do not have all this completed within 30 days, I would default to permanent supervised visits until either my son is of age, or his father kindly decides it is no longer needed....like that will happen! Well, I am sure it is pretty obvious that I never did succeed at finding a psych to perform an unethical evaluation he does not do within 30 days. I did however find a psychologist to do an evaluation for me who offered to work with my ex's attorney in an ethical fashion, which meant that they could have a copy of the completed evaluation when it was finished as well as they could send a letter to express their concern. This was done after the 30 day deadline as I spent all of that time trying to find a psych to comply with what they wanted. The offer my psychologist made was coldly turned down. I do now have medical/mental documentation saying I am no danger to my son as well as I do not suffer from or perpetrate the form of abuse MBP. But of course as it does not follow the conditions in the custody order, so it is of no use now, but it will be when my son gets older and wants to know the truth. Not only was this the order I was advised by MY lawyer to sign, the judge signed it, going along with what the requirements where at the same time as my ex had a restraining order against him for domestic abuse. My son has lived with his father since July of last summer. He was taken out of all physical/occupational therapy against the recommendation of Early Intervention who had been with him since he was 4 months old, taken off all meds, including his seizure meds, bounced around from one day care and babysitter to another, left for several weeks at a time with my ex's parents, and had signs and evidence of abuse/neglect. These would include chemical burns to his stomach/abdomen, several unusual injuries with stories that do not match the injury, (all documented by photo and witnesses other than myself), extreme tooth rote, constant diaper rash that causes his skin to be cracked and sometimes have small amounts of blood, and tends to be bruised (?, never knew diaper rash bruised little bottoms, but that's what he says it is from) and an untreated suspected seizure disorder, which he was medicated for by a pediatrician and neurologist. The seizures are still occurring and have been witnessed by many separate people, even his father who says, oh, he just got excited. Then we have the whole Parental Alienation issue, where he tells me that he will not tell our son �mommy loves him� because �I will not lie to my son� or when he says to me in front of our son that they would both breath a sigh of relief if I would just go away and not come back, or saying to our son mommy is not safe. His g-tube scar is referred to as �the owie mommy gave you� and my son has began to look at it and say �mommy, owie�. None of this is even close to ok, and yet there is nothing I can do about it because I was accused of MBP. My son is the one suffering because of it. I now spend my time searching for lawyers to take on my case and help me to get my son back, back where he is safe and loved, with his mommy. |
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