Calling Dr Moms... baby is sick

[Scarlett]

7 minutes ago, Jann in TX said:

Baby has some sort of virus (not Covid).

Dr was not overly concerned about the tremors since they lasted only a few seconds each-- and he only had them when his fever was spiking. 

Fever has come down and vomiting has stopped-- he has nibbled a few things.  Pedialite pops have been a hit...  he still looks miserable.

--

Wednesday update-- no fever this morning.  It took FOREVER to get him to sleep last night-- but he slept peacefully after that.

I think he takes after DH who doesn't do 'sick' very well...

I am so thankful he is better today.  I thought of him (and YOU) several times last night.  I am glad the doctor wasn't worried about the tremors but I am sure you know it might be something to keep an eye on.  Another reason of course he needs medical insurance.  If I were you I would be screaming from the rooftops.  There has got to be someway for this child to be insured.  Call your representative.  If that doesn't work call the news.  

[hippymamato3]

4 minutes ago, Scarlett said:

I am so thankful he is better today.  I thought of him (and YOU) several times last night.  I am glad the doctor wasn't worried about the tremors but I am sure you know it might be something to keep an eye on.  Another reason of course he needs medical insurance.  If I were you I would be screaming from the rooftops.  There has got to be someway for this child to be insured.  Call your representative.  If that doesn't work call the news.  

Yes, and most pediatricians aren't super familiar with seizures in babies. They often disregard parents' concerns about them. 

[mommyoffive]

Glad he is feeling better!

[Sdel]

8 hours ago, calbear said:

I just had another thought about whether or not you have pursued suing the birth father for child support for your GS? It can be enforced even in the form of wage garnishment.

Is there any way you can pursue legal guardianship? It's obvious that your daughter is dependent on you and that you are providing for all of the baby's needs.

 

In short, not in this situation unless the father is also willing to sign over the guardianship.  In TX grandparents have no rights.  Any change of custody sought in this situation would have to be with dad’s agreement....and then it’s more likely that dad would just take or be given custody anyway.   A CPS intervention would end up with baby with dad over the grandparents.  I have guardianship over my grandson, but he was removed from both parents.  With baby only living with mom, a removal would just see placement made with dad unless he refused it.

 

OP, I’m pretty sure your CHIP issue has something to do with your daughter refusing to assign the state the right to collect child support from dad.

[Scarlett]

32 minutes ago, Sdel said:

In short, not in this situation unless the father is also willing to sign over the guardianship.  In TX grandparents have no rights.  Any change of custody sought in this situation would have to be with dad’s agreement....and then it’s more likely that dad would just take or be given custody anyway.   A CPS intervention would end up with baby with dad over the grandparents.  I have guardianship over my grandson, but he was removed from both parents.  With baby only living with mom, a removal would just see placement made with dad unless he refused it.

 

OP, I’m pretty sure your CHIP issue has something to do with your daughter refusing to assign the state the right to collect child support from dad.

The bolded makes sense.

And I did not realize the dd is refusing to have the state collect child support from the dad.  Hmmmm......

[Sdel]

13 minutes ago, Scarlett said:

The bolded makes sense.

And I did not realize the dd is refusing to have the state collect child support from the dad.  Hmmmm......

I did not say this.  I really do suspect this  is the case though.  For all his faults, CS enforcement is one of Abbott’s big things.  I’ve never filed, but since some services allow the state to seek CS they probably have a blanket policy of requiring the giving of permission to seek CS.

[Scarlett]

1 minute ago, Sdel said:

I did not say this.  I really do suspect this  is the case though.  For all his faults, CS enforcement is one of Abbott’s big things.  I’ve never filed, but since some services allow the state to seek CS they probably have a blanket policy of requiring the giving of permission to seek CS.

Oh Ok.  Well, I was thinking that the dad is paying cs, so who knows.  I would definitely be expecting the dad to pay cs.  

[ktgrok]

10 hours ago, maize said:

Have you worked with a disability attorney? They typically work on a contingency basis, there is no fee unless disability is granted, and then the fee is a percentage.

 

This. It really makes a difference to have someone who knows exactly how to phrase things and what documentation you actually need vs what they say you need, etc. 

2 hours ago, Jann in TX said:

Baby has some sort of virus (not Covid).

Dr was not overly concerned about the tremors since they lasted only a few seconds each-- and he only had them when his fever was spiking. 

Fever has come down and vomiting has stopped-- he has nibbled a few things.  Pedialite pops have been a hit...  he still looks miserable.

--

Wednesday update-- no fever this morning.  It took FOREVER to get him to sleep last night-- but he slept peacefully after that.

I think he takes after DH who doesn't do 'sick' very well...

Poor thing - I'd bet those tremors were just chills, you know? I shiver when I have a fever and get muscle cramps from dehydration/vomiting. As long as he keeps improving I think you are on the right course. Popsicles are life savers! (regular pedialyte tastes like crap but the popsicles are not bad. The drink tastes like urine to me, lol). 

Also, if all else fails, can you contact an insurance broker to find out if there are any private insurance options that would at least cover some bigger costs? Also, do contact your local health department to find out if there are low cost clinics for the future. Oh! And local churches - maybe even Catholic Charities - they usually help sponsor free medical clinics for those who can't get insurance. Doctors in the parish will volunteer their time - my kids' pediatrician does that. 

[Sdel]

1 minute ago, Scarlett said:

Oh Ok.  Well, I was thinking that the dad is paying cs, so who knows.  I would definitely be expecting the dad to pay cs.  

Medical would be in addition. They’d increase his support payments, if he’s paying, which would certainly get him involved.  It sounds like she is terrified of the dad getting involved in any way, probably for good reason.

[Scarlett]

3 minutes ago, Sdel said:

Medical would be in addition. They’d increase his support payments, if he’s paying, which would certainly get him involved.  It sounds like she is terrified of the dad getting involved in any way, probably for good reason.

I have not got that impression, so I probably have missed something.  I was thinking the dad just did not have group insurance available to him and that buying insurance for the baby was just too expensive for him to realistically be able to afford regardless of court order or garnishment.    In OK, if they ordered him to have medical insurance they would lower the cs accordingly.  

Who knows though.  I know there was a time when dh begged his XW to sign their boys up for the state kids insurance and she refused.  I can't wrap my head around that.  She said 'nope it is YOUR responsibility to have medical coverage on them.'   In fact, that was not true at all.  He was not under court order to carry insurance on them.  So I do know all sorts of nutty stuff goes on with exes. 

[Katy]

I thought if you have intractable seizures without another obvious cause (like a brain tumor), it’s automatically diagnosed as epilepsy after 3 seizures?

[Sdel]

6 minutes ago, Scarlett said:

I have not got that impression, so I probably have missed something.  I was thinking the dad just did not have group insurance available to him and that buying insurance for the baby was just too expensive for him to realistically be able to afford regardless of court order or garnishment.    In OK, if they ordered him to have medical insurance they would lower the cs accordingly.  

Who knows though.  I know there was a time when dh begged his XW to sign their boys up for the state kids insurance and she refused.  I can't wrap my head around that.  She said 'nope it is YOUR responsibility to have medical coverage on them.'   In fact, that was not true at all.  He was not under court order to carry insurance on them.  So I do know all sorts of nutty stuff goes on with exes. 

The OP and her daughter are in a very precarious position if there is any concerns about custody.  The OP has NO say or influence on her daughter keeping custody and unfortunately with the medical issues at play they could have that child ripped out of their home in an instant if they are not careful.  It just sucks.

[hippymamato3]

20 minutes ago, Katy said:

I thought if you have intractable seizures without another obvious cause (like a brain tumor), it’s automatically diagnosed as epilepsy after 3 seizures?

No...not if they are conversion disorder (mental illness). These kinds of seizures aren't actually seizures. 

[Katy]

7 minutes ago, hippymamato3 said:

No...not if they are conversion disorder (mental illness). These kinds of seizures aren't actually seizures. 

Well that’s another cause, but it’s still not something the daughter can control and it is a diagnosis that can be disabling. 

[Jann in TX]

2 hours ago, Sdel said:

In short, not in this situation unless the father is also willing to sign over the guardianship.  In TX grandparents have no rights.  Any change of custody sought in this situation would have to be with dad’s agreement....and then it’s more likely that dad would just take or be given custody anyway.   A CPS intervention would end up with baby with dad over the grandparents.  I have guardianship over my grandson, but he was removed from both parents.  With baby only living with mom, a removal would just see placement made with dad unless he refused it.

 

OP, I’m pretty sure your CHIP issue has something to do with your daughter refusing to assign the state the right to collect child support from dad.

Birth dad's job is 'hourly wage' (he does have college degree but is not using it).  He does pay CS.  He cannot afford both insurance and CS (our lawyer agrees).  When the initial custody agreement was made dd was working a full time job (teacher)-- her employer had great insurance benefits for her and GS....that is now gone. 

CHIP's issue is that dd is not working.    The exchange's issue is that dd is not working.

Her type of seizures are more 'disabling' than epileptic seizures-- but they are not life threatening (like epileptic seizures).  It takes 2-3 YEARS to get disability benefits... even then she would have to sue and then a lawyer gets a nice cut...  One year down...

There is also NO MEDICATION available to control her type of seizures (PNES).  There are also very very FEW Dr's who will even take her on as a patient (since there is no 'cure' or 'treatment' that works).

 

[ktgrok]

I wonder if it would be more possible to get disability for PTSD than for the resulting pseudo-seizures? Like, put PTSD as the primary diagnosis? I seem to remember it was a traumatic childbirth that triggered this? Or am I misremembering? I know PNES can be considered as a post traumatic reaction in some patients and PTSD might get more respect and understanding than the PNES?

[Scarlett]

29 minutes ago, Jann in TX said:

Birth dad's job is 'hourly wage' (he does have college degree but is not using it).  He does pay CS.  He cannot afford both insurance and CS (our lawyer agrees).  When the initial custody agreement was made dd was working a full time job (teacher)-- her employer had great insurance benefits for her and GS....that is now gone. 

CHIP's issue is that dd is not working.    The exchange's issue is that dd is not working.

Her type of seizures are more 'disabling' than epileptic seizures-- but they are not life threatening (like epileptic seizures).  It takes 2-3 YEARS to get disability benefits... even then she would have to sue and then a lawyer gets a nice cut...  One year down...

There is also NO MEDICATION available to control her type of seizures (PNES).  There are also very very FEW Dr's who will even take her on as a patient (since there is no 'cure' or 'treatment' that works).

 

It is all so terrible.  I feel so bad for her. I understand that she makes too little for CHIPS and he exchange....I still can’t fathom why she can’t get Medicaid for the baby.  

[Spryte]

35 minutes ago, Jann in TX said:

Birth dad's job is 'hourly wage' (he does have college degree but is not using it).  He does pay CS.  He cannot afford both insurance and CS (our lawyer agrees).  When the initial custody agreement was made dd was working a full time job (teacher)-- her employer had great insurance benefits for her and GS....that is now gone. 

CHIP's issue is that dd is not working.    The exchange's issue is that dd is not working.

Her type of seizures are more 'disabling' than epileptic seizures-- but they are not life threatening (like epileptic seizures).  It takes 2-3 YEARS to get disability benefits... even then she would have to sue and then a lawyer gets a nice cut...  One year down...

There is also NO MEDICATION available to control her type of seizures (PNES).  There are also very very FEW Dr's who will even take her on as a patient (since there is no 'cure' or 'treatment' that works).

 

Oh, what a shame.  We are not in the same state, but in ours ... it’s not uncommon for the cost of health insurance to be deducted from the required amount of child support, for the parent required to provide it.  I can’t remember how we did it, but it was always specified which parent would provide it, and we went back and forth several times, depending on who had a better policy.  It could be worth slightly less CS, to get coverage (even if bio father has to get it through the exchange rather than an employer), but that may not be an option.  I’m so sorry.

It shouldn’t be this difficult to provide health insurance for a baby, this just makes me so sad.  

[Mrs Tiggywinkle]

I’m sorry.  PNES is a difficult diagnosis to start with and to add in the baby’s health insurance must make it worse.

Conversion disorders are a murky area where psychiatric and medical care overlap.  Many, many medical professionals assume PNES patients are faking(I’ll admit that some are), and treat them accordingly.  I’m sure she’s receiving psychiatric treatment, but I have had patients over the years who improved with SSRIs and Cognitive Behavioral therapy.  I do wonder if you could pursue a ptsd and/or anxiety diagnosis, if she doesn’t already have one. PTSD tends to open more doors. 

[Jann in TX]

1 hour ago, hippymamato3 said:

No...not if they are conversion disorder (mental illness). These kinds of seizures aren't actually seizures. 

These are 100000% REAL SEIZURES-- they are not controllable and meet every definition of seizure.

They are just not 'epileptic seizures'.

Seizures from fever are also not epileptic seizures-- they can cause brain damage too...

Seizures from medication or trauma are not epileptic seizures-- but they are still seizures and can cause further damage...

You 'can' call PNES a 'mental illness'-- but that does not make these less REAL.  She is dealing with repeated concussions and other bodily damage (talk to her chiropractor!!) because of these.  In reality current medical authorities have no idea what causes these.  (DD has been trying the anxiety/depression meds and LOTS of therapy... visits to chiro have been only thing that has mildly helped without making things work (side effects of anti anxiety/depression meds are brutal!).

 

 

Edited April 7, 2021 by Jann in TX

[Scarlett]

34 minutes ago, Spryte said:

Oh, what a shame.  We are not in the same state, but in ours ... it’s not uncommon for the cost of health insurance to be deducted from the required amount of child support, for the parent required to provide it.  I can’t remember how we did it, but it was always specified which parent would provide it, and we went back and forth several times, depending on who had a better policy.  It could be worth slightly less CS, to get coverage (even if bio father has to get it through the exchange rather than an employer), but that may not be an option.  I’m so sorry.

It shouldn’t be this difficult to provide health insurance for a baby, this just makes me so sad.  

I am wondering about this.  I guess it just depends on how much he makes.  There are so many factors at play.  And @Jann in TX probably knows things she hasn't shared about not wanting to complicate things.

[maize]

The idea of pursuing PTSD diagnosis if she doesn't have that already and seeking disability on that basis may have merit.

 

I am so, so sorry that your family is falling through significant cracks in our system.

 

If a condition is disabling it is disabling; we shouldn't view some disability as more valid than other.

 

When we were seeking disability accommodations for my husband for work we had to emphasize his more externally evident disabilities--hearing loss and tremors--even though his most disabling condition was in the mental health category. Apparently the brain is such an unimportant organ that a malfunction affecting it isn't viewed as equally valid with malfunctions affecting other organs.

Yes this is nonsense.

Edited April 8, 2021 by maize

[Spryte]

2 minutes ago, Scarlett said:

I am wondering about this.  I guess it just depends on how much he makes.  There are so many factors at play.  And @Jann in TX probably knows things she hasn't shared about not wanting to complicate things.

I’m sure it’s all more complicated than we imagine.  It is just heartbreaking that a baby can’t have health insurance coverage because of a complex situation that isn’t his fault.  We really need to do better for our children!  (Not talking about OP and her DD - you’re obviously doing great, I mean a general “we” ... our country/states need to do better than this.  Our children shouldn’t be without healthcare because of situations like this.  It breaks my heart.)

OP, I hope baby is much better today.

[chiguirre]

Do you live near a Clinica Hispana? They offer low cost healthcare to uninsured patients. In spite of the name, they treat Anglos too. They're sort of a combination Urgent Care/Family Practice for people who can't afford a normal doctor. 

 

Hugs!

[Katy]

But concussions can cause epilepsy, and if she didn’t have the history of trauma they would just call it epilepsy. How obnoxious. I suppose without insurance it’s almost impossible to get a second, third, or fourth opinion too. 

[Mrs Tiggywinkle]

8 minutes ago, Katy said:

But concussions can cause epilepsy, and if she didn’t have the history of trauma they would just call it epilepsy. How obnoxious. I suppose without insurance it’s almost impossible to get a second, third, or fourth opinion too. 

I believe she’s had EEGs that don’t show seizure activity, if I’m remembering right.

Conversion disorders don’t mean it isn’t real.  I have had a patient that had an allergic reaction that turned out to be a conversion disorder.  She was definitely struggling to breathe and had airway swelling.  Conversion disorders are the brain’s way of dealing with things such as stress or trauma that is then manifested into physical symptoms.  But those physical symptoms are very real. 

Unfortunately with something like PNES, there truly are people who fake seizures.  When they have all the tests run and there is no electrical seizure activity present, they get lumped in with PNES patients, who do have a true conversion disorder.  POTS is viewed kind of the same way in the medical community, and why I refuse to get diagnosed with it even if I meet the criteria.    I don’t want it on my medical chart; just having anxiety on there already makes doctors who don’t know me want to chalk everything up to anxiety.

Edited April 7, 2021 by Mrs Tiggywinkle