B’s obsession

[ARoomWithAView]

Is that what your son is diagnosed with? How did they diagnosed him so many years after the fact?

My son has not been diagnosed with encephalitis. A brief rundown of his history is:

Completely normal development until he got a pretty intense case of flu/croup/pneumonia at age 3 after which his personality changed. I was pretty sure that the illness had something to do with the change but the pediatrician looked at me like I was nuts when I raised the possibility.

A year later my son was diagnosed with cancer and he had a tough protocol of chemo and radiation. There were a lot of mood issues during treatment but the protocol was pretty horrendous and the drugs extremely toxic.

After getting done with treatment things were actually ok for about 6 months until my son got a series of illnesses including pneumonia. After that he fell apart again. That started a decade of psychiatrists, therapists, medication, etc. It has been a roller coaster ride with lots of ups and downs. I too have isolated myself. It is hard to wrap words around how completely soul crushing the lows have been.

A year and a half ago my son got sick and once again had a huge personality change. It was very scary and I took him to the ER of a major children’s hospital where they did nothing. I did, however, make an appointment at a leading PANS/PANDAS clinic after he was released. It took a year to be seen, by which time my son was at a pretty stable place.

The neurologist who my son saw at the PANS/PANDAS clinic agreed that his history suggested PANS. He said it might be worthwhile to test for a prior encephalitis infection via a lumbar puncture. The lumbar puncture has not been done yet because it is going to be administered for another medical issue he has and it hasn’t been scheduled yet (my son has a complex medical history).

Anyway, a long story to say that reading your post made me think of encephalitis because it sounds like your son changed pretty drastically and his issues have remained pretty consistent.

A couple of random thoughts. First, it took me years to realize my son is extremely sensitive to medication changes. I have learned to do a very slow taper with psychotropic medications to avoid ugly withdrawal issues. Also, how is your son’s sleep? My son actually has a sleep disorder on top of everything. If your son has any sleep issues, perhaps that could be impetus for your son’s doctor to refer him to a neurologist? I also happen to believe there are a lot of undiagnosed pediatric sleep issues causing, or contributing to, mood issues.

Also, regarding your suspicion that your son is on the spectrum, I found this link that discusses potential medical issues behind an autism diagnosis.

https://www2.fgcu.edu/events/PromisingPathways/files/2011NeuroEvalofAutism-Colon.pdf

I just don’t understand members of the medical community not wanting to exhaustively rule out possible underlying medical issues.

 

[Copabanana]

Dear aroomwithaview

I am so, so sorry you have had such a hard time, and that your son has suffered so. While our story is different, I so relate to how soul crushing our stories can be. I know that b's mom had a meeting today at the facility where her so is right now, I think they are discussing discharge planning, etc.

I think the leads you have given her seem really solid. I wish I knew more, but when I have time I will look into what you have written, and see what more I can find.

I am glad you are here with us. You have been a real hero for your child. Never forget it. It is very hard to bear what we bear.

Take care.

 

[svengandhi]

My oldest son, now 28, was diagnosed with PANDAS by Dr. Susan Swedos at NIMH when he was 7. He was one of the first confirmed diagnoses of the syndrome. He had come down with strep and his entire personality changed in K. We had no idea what was going on with him but his K teacher found an article about Dr. Swedos and sent it to us. It took a year but I was able to get him in for an evaluation. They didn't accept him into the study because we lived too far away to come once a week. However, they told us to give him amoxicillin daily through the next winter, which we did. At the end of that school year, the ENT offered to remove his tonsils, which harbor strep. He got strep a lot less frequently after that, but whenever he had strep, the PANDAS symptoms, which in his case was Obsessive Compulsive Disorder (OCD) like, would return. He now is old enough to manage his own health but even now, he will sometimes start acting Obsessive Compulsive Disorder (OCD)'ish and when it's that far gone, he doesn't see it. I trained the other kids and his girlfriend to recognize it and tell him to get antibiotics. I will say that his formal diagnosis is mild Asperger's.

Based on what the OP is saying, PANDAS might be a viable cause. I saw a documentary recently about kids with undiagnosed pANDAS and their behavioral issues can be horrific. I am thankful every day that my son's K teacher saw the article and cared enough about my son to seek us out with this article - we had transferred him to a different school by that time. Severe cases are treated with gamma globulin infusion therapy or at least they were when we were investigating.

Please look into this option. Read up on it on the NIMH website.

Good luck.

 

[Copabanana]

Dear B's Mom:

How are you? How did it go?

 

[B’smom]

Hi everyone,
I’m sorry for being MIA. I’ve been slowly trying to read and I guess “accept” and grieve these new diagnoses. Cause that’s what it feels like every time we get a new diagnosis. I feel absolutely heartbroken despite knowing something definitely isn’t right. The official diagnoses that were given were

Borderline Intellectual Functioning (BIF)- borderline intellectual range functioning
DMDD- disruptive mood dysregulation disorder
Developmental Coordination Disorder (DCD)- developmental coordination disorder (motor coordination issues) it’s also known as dysapraxia in some countries)
Speech sound disorder (apraxia)
And ADHD

They say he doesn’t have Obsessive Compulsive Disorder (OCD), despite his need to hoard, count and organize things consistently. They also say he doesn’t have anxiety. This confuses me because they tell me he won’t leave the unit without all of his stuff and if something is lost- he freaks out. I’m not really sure what to make of that

He has enough neurodevelopmental diagnoses that I think I can convince my GP to send us to a neurologist. I also spoke with a family in our area that a note from the neurologist was enough to convince the government to pay out of country genetic testing when a geneticist wasn’t able too (makes no sense in my opinion) but that’s our government. I’m calling on Monday to make an appointment for B to see about a referral.

aRoomwithaview- you are one very strong mom. I cannot imagine everything you have gone/going through. I hope they find answers for you and your son.

As far as PANDAS/PANS goes, I have inquired about that with the doctors he works with. Half tell me it’s a controversial diagnosis (funny again because so is DMDD- been reading a lot of medical articles lately- thanks Copa).
We do have a specialist in the nearby area but she’s closed off the wait list because it’s so long. In order to even get on her list, you have to have a diagnosis already- which is extremely frustrating because half of the community doesn’t believe it’s exists. He does have a history of strep throat, we also have emails talking about how his behaviour increases even when someone in the family has it (when LO had strep, B’s behaviours were out of control) but it could also just be coincidence.
His original psychiatrist has agreed to put in a referral to a developmental paediatrician because I refuse to give up. He reminded me that we may never know why he regressed. I know this is true, but I won’t give up until I try all alternatives that I can.

The new medication they put him on (Vyvance 50mg) is definitely making him more focused. Almost a little too much in my opinion. All day yesterday, he drew Pokémon on small pieces of paper. Not once asking for electronics (normally he’s asking every 30mins to play). It was odd but we had little behaviour. Mostly because I just let him do it and placed no demands. J is working this weekend so I’m taking things easy. B cake grocery shopping yesterday, transition to the car was rough but the actual trip was great.



The meeting was rough, our agency (kind of like a liaison) asked if the residential centre could keep B a bit longer until he gets into the longer term one- so we can avoid multiple transitions on B (facility-home then new facility) He can stay up to one year at the one we’re looking at but intake can take some time as we have to travel over an hour to get there to do intake. The psychologists reply was “it’s not all about B, we have other kids that need help too”. The professional in me was both appalled by her response and understood: It’s not all about B BUT that meeting was all about B. Everyone attended this meeting- the school and some neighbouring agencies, you could tell how shocked they were by her response.

We have 5 business days before B comes home. If we can’t get him in the treatment facility and the unit won’t keep him- they’re committed to having someone come in and help us with B to ensure someone is safe. I guess that’s something but my anxiety is in overdrive because of it. I need planned and organized and this isn’t. All I can do is continue to push and make calls.

 

[Copabanana]

I feel absolutely heartbroken

I know what you mean. As far as the diagnoses, try very hard to stay out of them. The diagnoses are not for people. They describe people. And they are done at a particular slice of time, by a particular person or team, for a particular reason. And the child is not fixed. Your son appears a certain way, to some person, for some reason. And the next person, a brand new take. These are clinical diagnoses, by judgement, not based upon genetics or chemistry or whatever. As far as the low intelligence, we don't even know about that. Not until he is truly diagnosed and a cause is detected, and treated if it can be. Remember. Abra cadabra. And anxety is gone. Abra cadabra and Obsessive Compulsive Disorder (OCD) is gone. Take these diagnoses with a grain of salt.

You are doing fantastic.

I did not know about the long term treatment program. Is it a done deal? Can you describe it and your feelings about it?

 

[BusynMember]

I am sorry for the confusing hodge podge of diagnosis. Because psychiatry cant prove any diagnoses they are often wrong. Of course he has anxiety and Obsessive Compulsive Disorder (OCD) and together with speech issues that sounds like autusm to me, a layperson.

Some countries are very timid about diagnosing children with anything life changing. Even here I got the ADHD and ODD and bipolar dances until my son was 11, but we lived with him and we knew that was wrong. I am a psychiatric patient since age 23 and have had lots of diagnoses and I didn't really know the right one but I accept treatment for those I am sure about, since I am myself and I feel the consequences of depression and anxiety if I dont treat those problems.

The real challenge is to figure out how to help your sons behaviors in a field that is inexact and ever changing for this reason. My son and I both saw neurologists and neuro psychs of our choices but we dont get limited by the government. Its more a choice combined with how much $$$ you have for what insurance wont cover. There is always a catch.

I think down here, although psychiatry is still very inexact, they are more willing to label kids right and wrong, and try to work on things. But with all my years of being a psychiatric patient I have learned that I have to be my best advocate because I know what resonates and feels right for me. In my long life in psychiatry I have been diagnosed with unipolar depression, manic depression, bipolar, bipolar ll (most common), Obsessive Compulsive Disorder (OCD), panic disorder, generalized anxiety disorder, PTSD and soft neurological signs and other neurological stuff.

They didn't know for sure but I was pretty easy. I got depressed. I had panic disorder. What was harder was the soft neurological stuff.

My son was complex, more like yours. But I know what I saw. Bipolar? Did not resonate. He was not moody and still isnt at 25. ODD? He wasnt defiant.

Sometimes I wonder how they come up with this stuff but they dont see our kids day in and day out. I wonder if they behave differently when they are hospitalized. My son never was. I was. I admitted myself when I was pregnant. I had a baby to raise now. Thats when I first got the mood disorder duagnosis which I knew was right, even if nobody agreed on what exact mood disorder I had

What I am trying to say is your son is complicated and did regress when young. With all you will be told, you will be confused. So I suggest maybe just doing what helps and not paying attention to so many labels. Do what works. My son was also diagnosed with ADHD first. That is often a first diagnosis in the U.S. But he went crazy on stimulants after a while! The sure diagnosis was eventually removed as a part of autism.

How do I know his autism diagnosis is right? It is actually high functioning autism.

I cant know for sure. Lots of tests but no blood test. No way to confirm.

But autism interventions worked tremendously well for him and he does have the signs. Really doesnt have much to do with a doctors diagnosis. His father and I suspected autism when we adopted him at age two but of course we are laypeople. Fortunately or unfortunately my son was born with crack in his system so in the U.S. you get interventions from infancy. Many were good for autism like speech, Occupational Therapist (OT) and social skills.

Use your own knowledge of your son. Doctors are not Gods, especially in the field of Psychiatry. Do the best you can. Anything you do, every single one of us will support. You have a very difficult child and he is hard to figure out. You are doing everything you can.

You are a hero. My babble really meant that you are smart... trust your intuition with a child you have lived with forever. We get it.

Love and light.

 

[B’smom]

I did not know about the long term treatment program. Is it a done deal? Can you describe it and your feelings about it?

It’s currently an option that’s available but they have to accept B into it first before we can even move forward. They could potential say it’s not a good fit. Then if we are accepted, we have to do a 2-3 hour intake, a tour and I have many questions that I need to ask. The agency were working with has some answers but not many to my questions : like drop off (Monday’s or Sunday’s?) we are expected to travel down on Wednesday’s and do CPS training with B (collaborative problem solving is their model- the same as the centre is using with B) and then again on Friday’s when we pick him up. I definitely need more information about it as far as what time we’re expected at(day or evening, the centre he’s currently at they’re only there til 3 so I’ve been doing it over the phone), who has to be there (can I come solo or do we both have to be there) and if that’s the case, what do we do with LO and T while we’re gone for 4-5 hours 2-3 times a week. On top of juggling work and life in general.

This centre seems to be more treatment based where the one he’s currently at is medical/diagnostic base. So I’m hopeful that they can work with B to fully implement the treatment suggestions and give B and us a head start.

I’m feeling both relief and anxiety. Relief that we’ll have more time to heal without B (I honestly think I need more time to find me without B) but also Relief that he’ll get the support he needs if he is going there. Anxiety/overwhelmed because that’s a huge commitment to one year- financially (gas, taking time off work, etc) and also on my other children. Then winter is coming and I’m super nervous about driving down consistently in that weather, we get a lot of snow . I don’t know if it’s even durable. Most of the information I’ve been given is secondhand information. I can’t even call until they approve the initial intake. Even after all is said and done- they could refuse him. I’m told they only want to work with families that are willing to work with them, motivated; which we are. Just trying to take one step at a time in various pathways. I want backup plans, and many so I’m not scrambling last min. It’s slowing down the process but my anxiety controls this aspect of me- I NEED plans, lots of them. I think living with B has partially caused that- we always have multiple plans when going out as a family: take two vehicles, only one child goes at a time, etc.

 

[B’smom]

Use your own knowledge of your son. Doctors are not Gods, especially in the field of Psychiatry. Do the best you can. Anything you do every single one of us will support. You have a very difficult child and he is hard to figure out. You are doing everything you can.

You are a hero. My babble really meant that you are smart... trust your intuition with a child you have lived with forever. We get it.

Love and light.

Thank you SWOT, for everything! Copa as well. I can honestly say I’m stronger thanks to everyone on this site and all of their wonderful support and information.

I think I’m stuck on the labels because that’s what gets your support and services here. Doors are open for certain diagnoses, some more than others. Many agencies won’t help unless you have the right diagnosis. The ones B currently has, leaves him open to fall through the cracks- even with me advocating. They can’t turn away a child with autism, or a child with an intellectual disability. But they can do someone for is borderline like B.

It sounds like you’ve gone through a very long journey, both for yourself and for you son. I admire your strength and perseverance. Thank you for sharing your story with me. I know I’m not alone, and that helps more than anything.

 

[BusynMember]

Bsmom, yep. Trust me I spent nights awake thinking of what to do. The labels he had before autism didnt help my son. Bipolar, which he never had, only got him minor school supports. I dont think anyone at school believed he had it since he was so well behaved and kind so they didnt do much. Labels are partly politics. So sad.

You are still a CHAMP for your son. Keep pushing. Take the year vacation if you must. The older he gets the less they can deny the more over reaching diagnoses. It becomes more obvious

 

[Copabanana]

B's Mom. In Canada are there advocates? Here in the United States I went to an organization called "Disability Rights." They gave us a free attorney who went to IEP's with us. It helped my son get non-public school (and a free taxi to take him 45 minutes each way.) Might there not be similar advocacy groups to support you in this process of forcing the government health system to diagnose your son so that he can receive targeted treatment. As it is they seem to be throwing things at him, without a real sense of what it is. They describe what they see, just like the blind men with the elephant. You know all of this. I don't need to tell you. It certainly is frustrating.

Here in the United States the law schools have clinics to give their students practice in various aspects of law that deal with human problems such as disability rights, or say, immigration. They are supervised and they are free. Might there be such clinics in Ontario? So that you can get some sustained legal help.

What did the attorney say at your husband's work?

Anyway. We are with you here.

 

[BusynMember]

Wow, Copa. You are lucky. We had no legal help or free attorneys in Illinois or Wisconsin! Kudos to progressive California!

 

[B’smom]

Might there be such clinics in Ontario? So that you can get some sustained legal help.

There might be, unfortunately Ontario is about 2.5 times bigger than California. So accessing a service out of our area would be impossible. As far as a government run type of advocacy, I haven’t found one. There are tons of legal services for children and youth in care and in the legal system. There are no law schools in the area (maybe 4/5 hour drive). I guess I could go to my MPP (my province rep in the government- I’m not sure what that would be in the states? It changes in each city). I could complain to him about the lack of services since he can bring that back to the government. We’ve elected a moron though in Ontario, he is more interested in ensuring beer is a dollar than the social system. Still, they might be able to help.

What did the attorney say at your husband's work?

I mostly asked about myself and any legal implications. I was adviced I have done everything to ensure LO is protected other than relinquishing my rights. Which isn’t what anyone wants- even CPS. I did ask about how he’s being denied services. She said it could be a human rights issue but because they’re also claiming safety, the odds are unlikely.

 

[Copabanana]

I could go to my MPP

I had remarkable success many years ago going to my Senator and Congressman. Actually, it was about an insurance issue, which is regulated in my state. They have full time staff members that do research and they intervene and advocate. Within a couple of weeks I had 20k. Maybe there would be something similar for you by going to elected officials. Who knows?

We’ve elected a moron though in Ontario

For a second I thought this was his title, Moron.

Gee. I thought. That sure has a different meaning here.

Be well. B's Mom. You have a full week in front of you. How is your husband doing? How are you?

 

[B’smom]

J is the everlasting calm in the storm- the man holds in all negative emotions. It would probably be easier to pull a tooth. he seems ok though. I think he’s content to let me handle it all, it’s frustrating but I might actually be more frustrated if he tried to do the calls. Kind of like when he folds the towels. You’d think after 12 years, he’d know how to fold correctly. I swear he does it on purpose

At the moment I’m good. I know there’s nothing more I can do tonight. Many calls to make tomorrow but thankfully I have the next 3 days off before I work Thursday and Friday for a bit. I’m frustrated because I’m finally working again, like really working since B has been gone. The selfish part of me doesn’t want to give it up. Definitely make that my priority to solve if he comes back full time.

 

[B’smom]

For a second I thought this was his title, Moron.

Gee. I thought. That sure has a different meaning here.

I laughed so hard my kids looked at me funny!

 

[Copabanana]

I'm laughing too.