Myasthenia Gravis and Child Neglect

While my goal for this web site is to keep it NH-centric, I do get Email from around - and outside - the country. This page is dervived from a pair of Emails from a mother trying to learn enough about a perplexing disease in order to make the best treatment choices for her daughter. Sometimes this can work well, with parents doing the spadework to find potential new treatments or correlating symptoms with other's reports to match treatments. Physicians often don't have the time to do this detailed work, and parental input can be a great help for everyone. On the other hand, we have cases like this one.

While the author is not a client, and I haven't taken the time to learn all I would if I were involved in a MG case, a cursory check on the Worldwide Web about treatment options makes it clear that there is no generally accepted treatment. And so, we have to add Myasthenia Gravis to the list of diseases can get you in trouble with your CPS agency.

Much more information about MG is available at the Myasthenia Gravis Foundation of America Muscular Dystrophy Association, and elsewhere around the WWW. MG is not an extremely rare disorder, it affects 14 per 100,000 people. Guillain-Barre, a related neurological syndrome, affects about 1 per 100,000, and Multiple Sclerosis affects about 50 per 100,000, lung cancer is 70 per 100,000 - per year.

Date: 2003 March 7
From: Mary Walker [Names have been changed to protect privacy.]
Subject: CPS question and "medical neglect"
To: Paula Werme

Dear Ms. Werme,

I have been looking for help on the internet about medical rights for kids, and in regards to CPS and my rights as a parent. I am in the state of WA, but have been living in the midwest until last July 2002. I've always been independent and have provided well for my child as a single parent her whole life. At this point in time, I have never felt more alone. I know you must be a very busy person, but I am hoping that you can share a moment, as your website shows compassion and an understanding of these situations.

My 15 year old daughter was diagnosed with a rare disorder, Myasthenia Gravis, last year. We had no medical insurance, so I brought her back to WA, where she is covered by an HMO through her dad, to stay with my parents at the end of May last year. I had to pack up house, home and lose a good job, but came to WA in July. This has left me in a very destitute position.

It's a long sad story, but the short is that the first doctor recommended thymectomy. We declined because X-rays showed a healthy thymus gland. The doctor reported me to CPS. By August, my daughter was on Medicaid, so we found a different doctor, who recommeded immunosuppressive therapy. While making hospital arrangments, the CPS worker interfered. He made hospital arrangments, without consulting us and knowing we were out of town. When we did not go to the hospital, but instead made arrangments with the doctor for the following week, CPS took me to court.

My daughter is doing very well now and we have a good understanding with her doctor for continued treatment. We have tried multiple forms of treatment to support my daughter's health and have seen several different doctors throughout all of this. In spite of all that and in spite of all the information that I shared with the CPS worker about treatment for MG, we have a trial date for June. Now I have received a letter from CPS saying that they find me "medically negligent" and that I can no longer work with kids.

My own state appointed attorney (four years experience) has not bothered returning my phone calls the past couple days, so I do not know what the letter implies or if it means they can take my daughter, but it does not sound good for my future. I have never had any issues with CPS prior to this, nor have I ever deprived my daughter of medical care. Our only issue is that we did not want the thymectomy, because my daughter has no thymoma, prognosis is questionable (maybe 30% remission, while there is 50% chance natural remission for kids) and medical journals do not even recommend it for pre-puberty kids. I only want to support the choice of medical freedom for my daughter.

This is a nightmare! I have already talked with someone from the Senator's office last December, who said she would talk with the CPS worker. She felt that would help. My daughter's lawyer got mad when I told her this and said that in many cases this only causes more problems and that CPS will get mad and do more damage. I feel that we have a very good case, but am afraid after everything I've read about other parent's being unjustly harrassed, that we may have some real big problems. I can already see that the CPS investigation has been totally biased against me. One of the big factors that can exacerbate MG is stress and I'm so afraid that all of this will set my daughter's health back.

I would truly appreciate anything at all that you might be able to share or if you know of any organization in this state that could help us. Thank you in advance for your assistance and time!


Mary Walker

Date: 2003 March 8
From: Paula Werme
Subject: Re: CPS question and "medical neglect"
To: Mary Walker
Wow, this is a new one one me. The doc doesn't get the big surgery fee, and he reports you to CPS! I'd like to add your letter to my list of letters, if I may on my web page. I guess I don't have much of guess on what to advise you except that you might want to ask the new doctor to write a letter stating that he didn't think the thymectomy was necessary. If he's willing to testify, that would be better, but it's unusual that one doc will testify against another doc.

Also, try contacting Gary Preble:

He might have a better idea of exactly what to do.

Date: 2003 March 8
From: Mary Walker
Subject: Re: CPS question and "medical neglect"
To: Paula Werme

Dear Paula,

Thank you for replying so quickly and for providing the second e-mail address. I will write them with this situation and see what they say.

I have no problem with you using my letter, only please don't use my name, just for security sake. This situation is so horrendous.... something I really thought would never in a lifetime happen to me or my daughter! The immediate need is to keep my daughter well, but it is my hope that the truth comes out, that CPS is accountable for the harrasment and damage they have already placed on us, and that the doctors who participated in the perpetuation of this lie be held liable. It is attrocious that a family dealing with a rare disorder, trying to get the best treatment, be also inundated with the legalities of accusations by the state! The bottom line for me is that I would not wish this on anybody and if there is anything I can do so that others don't have to go through this hell..... then I'm willing to share what I know.

You are right about doctors supporting each other. The first doctor who diagnosed Harriet was in an HMO. He had all the other doctors in the HMO turning to him for advice, as MG is so rare that most doctors live a lifetime without ever seeing it in a patient. So, whatever he had decided, which in my daughter's case was that he advocated surgery, was then also supported by the other HMO doctors. When I demanded a second opinion from outside of the HMO, he suggested a doctor from a university hospital, who he said had experience with MG. What I didn't know at the time, was that hospital and HMO work hand in glove, so of course, they sent us to a doctor who would concur with what they had already said...thymectomy.

My daughter's current neurologist is a doctor at another university. She seems very knowledgeable, admits that thymectomy prognosis is questionable and that medical books do not advocate it for pre-puberty kids. She is respectful of our desire to minimize invasive means of treatment, yet she has stated that thymectomy can in some cases allow for less need of drugs. In her letter to CPS, regarding how my daughter is progressing and how the hospital stay went, she notes that she will "continue discussing benefits of thymectomy" with us. It is my belief that she is watching her backside with them, as she is aware the other two doctors have suggested thymectomy.

In a court situation, I think I will have to rely largely on my research, but I do know that thymectomy is controversial enough to have intiated a new worldwide study last year to prove it's benefits. The experts who are involved had to review the old studies and state that "all of the prior research and studies are invalid." I would think that could carry weight in court. It would be better to fly in one of the experts, who is participating in the study, but for legality sake it would probably be hard for any one of them to be extemely supportive in any direction until this new study is complete in 2006.

I have researched extensively in regards to MG, "traditional" medical treatment, alternative treatment approaches, and "new" medical treatment. I have talked with and met people with MG, who have survived MG using both medical and non-traditional treatment. I have talked with doctors and nutritionists, from all over the world, who have helped people with MG go into remission. Some of this I shared with the first doctor, but he was aggressively opposed to accepting anything less then surgery as a treatment for my child, even though he admitted that the surgery could cause her to be predisposed to a worse autoimmune disorder as she got older!

My own research of medical treatment for MG supports that in most cases the drug Mestinon is initially used, which is what we did. In cases of thymoma or enlargement, the thymus gland is removed. In other MG cases, thymectomy is optional, but it is not even recommended for all MG cases. Newer studies indicate that there are actually a number of different antibodies involved with MG and that thymectomy does not respond positively to some of the antibodies. That is one of the reasons that treatment for MG has to be unique to each individual. American doctors do it regularly, but many MG patients (that I've heard of, talked with, or been told about) are not happy with results. It can take years to go into remission after the surgery, if it happens at all, and in the meantime most patients have to be on immunosuppressive therapy. Many have gone the whole nine yards and are not doing half as good as my daughter!

I realize I am rambling, taking up your time, and I apologize. I guess it's that justification thing people go through. We just want to be heard! I'm sure that I am probably only one of many, who have in some way had to go through the horror of being unjustly accused. Thank you, again, for your time, support and help. God bless!

Date: 2004 April 29
From: Mary Walker
Subject: Myasthenia Gravis and CPS update
To: Paula Werme, Eric Werme

Hi Paula and Eric,

It's been awhile and I've been thinking about getting in touch with you. If you recall, I wrote you probably a year or so ago, in regards to my daughter's diagnosis of Myasthenia Gravis and consequent CPS involvement in the state of Washington.

In the past year I've had time to do more research, learn about MG, search the CPS Discovery files related to our case and review my daughter's medical records. You might be surprised with the outcome. I'd like to share the rest of my story and hope that you might be willing to add an update to my story that you have on your site currently. In the essence of time, I'll try to keep the details short, but feel free to ask questions.

My daughter, who will be 17 shortly, continues to do well on the treatment she is receiving from the University MG experts. Because she responded so positively right after the treatment was initiated and continued to do well, CPS requested the Juvenile court to dismiss the Dependency petition against me. I have no doubt they may have begun to see the "error of their ways" when they noted that difference in treatment -- which we chose -- actually improved my daughter's condition. By that time, I had some political involvement and believe that prevented CPS from going overboard, as well. The Dependency petition was dismissed last summer 2003.

In Spring 2003 I received notice from CPS that they placed a Finding of "medical neglect" against me. I immediately requested a Review, because I did not at any time fail to provide my child with medical care, and I also submitted a letter on my behalf to be placed in the CPS file. CPS did not reverse their Finding, so I petitioned for an Administrative Appeal. I had requested Discovery after receiving the Finding notice and then requested updated Discovery prior to my hearing date. On the first day of my hearing, I was surprised to find evidence from CPS that the doctor who had reported me in Fall 2002 had previously placed a referral just two months after diagnosing my daughter with MG! I was not notified by CPS of this first referral nor did I receive a copy of it upon request for Discovery. Had I seen the referral I would have known immediately that the referring physician was not an MG expert of any sort. He had told them that my daughter was being denied the "surgical cure" for MG and that she would die without thymectomy! It is common knowledge that there is no cure for MG, surgical or otherwise, and that one does not die for lack of thymectomy. This first referral by the diagnosing physician was basically one lie after another, yet I was never informed of it until I saw it in my hearing when it was submitted as evidence for CPS.

My Administrative Appeal hearing took two days, in which the CPS attorney used the bulk of time. My time was spent being interupted and objected to, so that I was unable to adequately share my evidence. The ALJ (Administrative Law Judge) did little to ensure that my case was adequately shared, but rather did not allow me to read a statement that I had prepared in regards to timeline of events so that my evidence would be supported. The ALJ asked her own questions, but I was not allowed to elaborate as the CPS lawyer made it clear she was exasperated with my inefficient efforts. After 90 days I received the ALJ's Order in which she did not find in my favor. Instead, she simply reiterated everything the CPS attorney had presented and omitted anything of consequence that I had been able to share. Her stance was that my daughter simply "refused to take her medication" and that's why she was in the condition she was in and had to be hospitalized! CPS has changed their story several times as to why I was actually "medically negligent." First it was because I refused thymectomy, then they said it was because we chose alternative treatment instead of medical, then it was because I had my daughter on a "rigid" diet. They have tried every excuse in the book to substantiate their position, including attempts to reduce my credibility because I researched and was very involved in my daughter's care. All of my daughter's medical records indicate that she was receiving medical care in this whole time period, but that her condition declined after the doctor in question changed her medication. The only thing we did not do was the thymectomy and we had good reason not to accept that optional treatment. The ALJ did not take the whole evidence into consideration, so I recently submitted a Petition for Review. I'm waiting to hear back from that.

What makes this case even more interesting is the fact that we found out my daughter had been OVERDOSED and inappropriately prescribed medication by the doctor who reported me! This could have had very grave consequences and was the reason why we had so many problems in that time period. The medication in question is commonly used for MG patients, but is dose-sensitive and benefits are strictly dose-related. Too much or too little of the medication will result in weakness for a patient with MG. Too much medication will make it appear as if the patient has a severe case of MG, as in my daughter's case. The difference in correct protocol is that in overdose the medication has to be removed for improvement. The prescribing doctor refused to reduce this medication, even after I had mentioned my concerns several times about the unusually high doses he had prescribed. That doctor is no longer with the HMO in question, but I am told is now "in research" out of state. The other HMO physician's seem very eager to point fingers at him for any of the problems my daughter experienced while in their care, yet they all supported his actions in that time period and would not provide referrals that would allow us to get help from experienced MG experts.

As a lawyer, I'm sure you understand the significance of this last piece of information. The doctor who reported me is now protected by law as a mandated reporter, which makes legal retaliation difficult. I do intend to file some complaints at the appropriate levels, after I get this CPS Finding reversed. So, you can see that I have my work cut out for me. I am still trying to get any help where I can and am unable to afford the legal representation that would send these people into a tizzy (to say the least!). I joke about what I could do with just ONE day with ONE of Michael Jackson's attorneys!!

Please feel free to comment or question anything I've shared. I'm working on a statement that details the entire events, which I hope to share if/when this becomes more public. I have no reason to believe that CPS will reverse their decision even with the Review, as they have so far refused to acknowledge the validity of my own claims, so I am educating myself about the process for Superior Court Review. I look forward to hearing from you and appreciate your interest!

Ric wrote back asking for some clarifcation about dropping the Dependency petition but found against her anyway. He also noted that DCYF protects mandated reporters too. Several of Mary's comments below match problems in NH, such as rights being better respected in superior court, pursuing families that cannot afford a vigorous legal defense, and increased scrutiny if you learn more about the issues.

Date: 2004 April 30
From: Mary Walker
Subject: Myasthenia Gravis and CPS update
To: Eric Werme

Yes, as you've noted there do appear to be some "discrepancies" in the long arm of the law regarding this case (and other cases, I'm sure!). Apparently, CPS in WA can hold a parent responsible for abuse or neglect, even if the child is never taken from the home and a Dependency petition is never fulfilled. As I see it, CPS can hold a parent "guilty" until the parent can afford to prove their innocence. Since many accused parents are single and not wealthy, the odds are in CPS's favor that they will not be held accountable for their false Finding. In my case, I think CPS was "upset" because I notified Senator Val Stevens when they tried to take my daughter while we were actively seeking care with the University. Because I made it "public" at that point, they now will fight even harder not to be accountable largely due to potential lawsuits. I, too, have heard that the reversal in Administrative Appeal should be good, but have also heard that they usually fight tooth and nail until it reaches the Superior Court level. At that point, my "rights" are supposed to be given more weight, while CPS will have more accountability. That will be my next step.

Interestingly, there is a fairly new WA law that indicates the Dependency outcome (Facts and Order) has to be considered by the "ALJ" when an Administrative Appeal is placed against the Finding. That law: WAC 388-15-113 was not sustained by my particular ALJ, when I requested this consideration. Instead, she stated that she wished to treat my request as a petition for "summary judgment." When I stated my case, in summary judgment, the ALJ defered to the CPS lawyer, who claimed that "there were no 'facts' to consider since the Dependency petition had been dismissed!" I'm sure this particular law was not made just to support CPS Findings, however they have once again found a way to support their cause while denying the parent their rights.

The biggest issue in this case is the fact that none of the "players" -- meaning the doctor who placed the referral and CPS -- truly understood what they were dealing with, in terms of Myasthenia Gravis, yet they all wanted to be "authorities" and pass judgment. The doctor knew very little and, based on his ignorance, provided false information to CPS. CPS was apparently too busy to find out if this doctor's claims had validity, but simply decided to support the doctor and prove me "guilty." We were so new to the diagnosis ourselves at the time that our experience and knowledge of MG was limited, let alone experience relating to CPS! What I have since discovered is that WA law states that a parent has the "right to a second medical opinion by a physician of their choice" in cases where a medical doctor places such a referral. CPS is supposed to uphold this "right" BEFORE even filing a Dependency petition. I was not informed of this option nor given the opportunity to get such a second medical opinion.

The bottom line is that I had to become informed to help my daughter and to fight against CPS because of one doctor. An educated and informed parent should not have to choose between one doctor's opinion and doing what is best for their child and supporting their child's wishes. Doctors should not take away the child and parental rights when a situation is easily remedied through communication and options for care. In our case, the doctor was simply determined to pursue his own solutions and was not willing to work with us for options. He even involved CPS to further his own demands! Parents should not be condemned for being knowledgeable in their child's care. When the CPS investigator noted that I had become informed about my daughter's condition and treatment options, he contacted the local "Munchausen expert" to verify that this wasn't such a case, instead of being reassured that I was doing my best to help my daughter! My "Statement" is 27-pages long, so far, and shares details such as those listed above, that outline how contrived this whole case was from start to finish. I am hoping to put this story out there, as you suggested, because it really does play into a lot of issues faced by those who have rare disorders (many with MG receive inappropriate care due to ignorant doctors), parents of kids who have rare disorders (who also fear that a lack of knowledge by some doctor may inadvertently put blame on them), and the rampant disregard to family rights by the very agency that was set up to support children and the family unit. It also reflects on that fact that apparently doctors can make a child ill, blame the parent so as to take advantage of State protection, and then walk away without fear of accountability. That is one law that needs changing.

I realize that I tend to ramble about this case, so I apologize if my response to your queries was longer than you wished! Please feel free to incorporate this additional information into my previous letter, if it can add clarification. Thank you for taking the time to maintain the website and make these additional edits. I hope that this information might in some way help someone else; be it in pursuit of understanding a rare disorder or medical implications or legal ramifications. I will keep you posted as to what happens and pray for a huge positive impact! Please feel free to ask any other questions any time. I'm assuming you will continue using the pseudo-names, for the time being. I still look over my shoulder for what CPS may try to do next. It is not a good feeling. Take care and God bless!

Contact Paula Werme, Esq. or return to Law Practice home page.

Last updated 2004 May 6.