Feeling lost tonight about dd and how to best help her

[fourcatmom]

I have posted quite a few times about my dd that suffered the TBI. October and November were pretty decent months. School was just getting off the ground and we were starting to get a routine going. Early December we had an incident after seeing a psychologist. We were against adding another provider to the team but her primary really wanted someone who could over see the anti-depressant meds. The visit in and of itself was okay. Dd didn't want to talk which was okay because she had been doing the CBT and she liked that therapist. She recommended adding Deplin15 to her regiment of meds (which included celexa and imetrex). I did some research and asked her primary and it seemed like a reasonable thing to add. We started that night. Within three days she felt horrible. She was completely nauseous, had numbness in her head and legs and a horrible headache. She kept pounding on her head (despite the headache) because she said she couldn't feel her forehead. She had other symptoms but I don't honestly remember what they all were. It was a Friday evening so I called the advice nurse. Advice nurse put us in touch with the on call doctor who was concerned about the Deplin since that was the only thing that changed that week. She recommended we go to Urgent Care and have a doctor check her and run a folate blood test. She told us that if her folate number was high we would need to go into the ER and have a IV flush. We did that and we were told to go home and wait for the results and be prepared to come back in. Her blood pressure was also low that night. The test was suppose to take 2 hours but it took over 24 hours. They called us on Saturday evening and said her numbers were high and we needed to go to the ER. I had three doctors tell me this (on-call, and 2 urgent care doctors). We went to the ER and we spent about 5 hours there. ER doctor was not too concerned and didn't want to the IV flush. He said just wait it out and stop taking the meds (which of course we had already done) and that eventually she would feel better. He discharged her and diagnosed her with a folic acid overdose. She has continued to feel nauseous (with some vomiting) off and on since that first weekend in December. Unfortunately it affected her emotionally probably more. She has refused to take any of her medication since that weekend. Her first week off the anti-depressant she cried, a lot. We talked about things and she was adamant that she didn't want the medicine. Now she just seems withdrawn more. She has had intermittent exercise over the three weeks but has spent a lot of time in bed. In fact one day last week she slept for about 17 hours (at once). She pretty much is just laying in bed, playing games on her computer or watching Netflix. Her appetite is less again and she had just gotten to a point where she put the 20lbs back on she had lost. She seems "happy" in her room and says she just wants some down time. School has been a huge struggle and just brings her to tears. Her last CBT appointment she wouldn't talk so the therapist sent her home. Ugh...She was excited for Christmas but didn't seem overly happy with her gifts. I ordered the book Love and Logic for kids with health issues, maybe that will help me but I hate just watching her lay in bed all day, everyday. She won't even come in the living room. She was suppose to go back and have another blood test to check her levels again but I haven't been able to get her there. I asked one day if she wanted to go see her primary and check in with him and one evening she agreed but by the next morning she refused. The therapist wants me to give her control and so I have where I feel I can. She will see a Neurologist in January (for possible Chiari Malformation) and that is non negotiable and she knows that. She just says they can't do anything and they will just give her medication which she doesn't want. I understand this and I am trying to just give her time to heal and chill without pressure and stress but it's hard at the same time. I also just really want answers to the Chiari issues so we know if we are still dealing with TBI issues or new issues and she isn't seen in the TBI clinic until February. The medical wheels just aren't turning fast enough at the moment.

 

Thanks for listening...just needed to get this off my shoulders.

[MomatHWTK]

:grouphug:

 

The only advice I have is to keep fighting for a medical team that will work with you and not give up.  Having a good team is essential, but so very hard to find.  

[geodob]

Hi Fourcatmom,

 

It seems that the real issue, is that this experience has caused her to lose Trust in doctors/therapists?

Where trust is a difficult thing to restore, once it has been lost?

You also wrote: "The therapist wants me to give her control and so I have where I feel I can."

 

Where this could be used as a turning point for her?

Where she no longer puts blind faith in doctors?

Rather when they recommend things, such as medications?

That she first comes home and looks into and reads about these medications, etc?

Then perhaps asks to go back and talk with doctor, for further clarification?

Such as how they will actually help, and what about the possible side effects?

 

Then makes an informed decision about whether to take them or not?

Where this putting her in control?

Is aimed at helping her to develop the ability to critical evaluate recommendations from doctors.

Where the TBI and and possible CM, will quite possibly involve life-long meeting with doctors?

So that this experience, could be used for her to start developing the skills, to take control of meetings with doctors?

To critically evaluate their recommendations, and be able to ask them to justify them?

 

Which really gives her control.

[PeterPan]

Fourcat, is she seeing a general or a psychiatrist for her meds?  She's getting counseling with a psychologist, but a separate person (or persons) is handling the meds.  In our situation with a loved one, the person got MUCH better care, more coordinated, more responsive, when they were able to pull those two functions (the counseling and the meds) to one person.  In this case it's a psychiatric nurse practitioner.  They slow down, will counsel/CBT/talk therapy *and* handle the meds.  For this person, that was the ticket to responsiveness and stability. 

 

And yes, our family member had that issue of not trusting the meds because the docs broke trust.  She's not quite legally of age, but she's about to be, yes?  She's 16? 17?  I forget, sorry.  Our loved one was screwed, screwed, screwed by a system, previous to the patients' bill of rights, that would just overmedicate and do things and not give a rip about the patient's feelings.  Once she is of age, she will have the legal right to refuse care.  She will have the legal right to say I will take this med, not that med.  In our situation, what got compliance was developing a relationship of TRUST with that one practitioner who was handling the whole gig.  So the psychiatric nurse practitioner could adjust meds and handle the therapy, both, and listen and respond.  And because they have this relationship of communication, the person can say *I don't like how this med makes me feel* and the np can say let's adjust.  That way things don't go nuclear with complete non-compliance.

 

There are pediatric psychiatrists you can find, yes.  I don't know how common psychiatric nurse practitioners are.  I'm just saying that's the parameter that worked for us, the combination.  It sounds like her medical situation is too complex to have a non-medical person (psychologist) suggesting meds but not able to predict the full physical response.  That's a REALLY GOOD reason to move up to a psychiatrist.  Then you have an MD (or pnp) doing the counseling *and* the meds.  

 

I'm very sorry this happened.  It sounds frightening for you as a parent, and it must be very frustrating for her.   :grouphug: 

Edited December 27, 2015 by OhElizabeth

[wapiti]

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Edited September 15, 2016 by wapiti

[fourcatmom]

Thank you for the replies. I appreciate the comments about how to help her feel more in control rather then just being angry and upset at everyone but how to involve her more. She has already started filling out forms and she has an online account that she can access and send emails to her medical team. I don't think she is there yet, but some things for me to think about when she is ready. She will have to go back to the doctors, but I am picking my battles right now.

 

She is only 13 so still a ways before being on her own but I agree having her involved in decisions is important. I am trying to give her control where I can and she knows when I wont negotiate. I would take privileges away if she put up a fight regarding the things that I don't see an negotiable. I was on the fence about the meds. I don't know how she feels, I don't know how the medicine feels. I have lung disease and they had me on over 10 medications and I have slowly been trying to stop some of them. I get it. So, this seemed reasonable for her to try and see how she felt. The blood test I was also on the fence about. I would have liked to have her do it where I could see her numbers were going down but I would assume they would since we had stopped the Deplin.

 

She saw a psychiatrist and that is who gave her the Deplin. She sees a social psychologist (or something like that) for CBT. She likes the therapist that does the CBT. She has been in therapy since June. She has had episodes of not wanting to talk about the accident or horses but she always talked about something. This was the first time she wouldn't talk at all. This therapist that she has trusted can't prescribe meds so this is why we added the psychiatrist. We won't be going back to the psychiatrist. Her primary had been the one prescribing all the medication.

 

This is very complicated and I assume you've stopped the Deplin, but just wanted to pipe in that additional b12 may be necessary and my understanding is that some niacin can fix a situation of over-methylation.  If it were me, I'd also want to know what MTHFR mutations are being treated, if any (not that those are the only genes involved).

 

Very sorry I have nothing to offer on the meds and distrust angle or where to go from here  :grouphug:.  FWIW, from time to time when my ds doesn't want to take medicine and/or supplements, I get pretty strict about it (I'll take away this computer/phone/tablet that you're playing on, I'll go get daddy, etc) though that takes a ton of energy when the doses are happening multiple times per day.  Usually, assuming there are no side effects, ds will regain comfort with a particular med within a couple days of his periodic pill distrust.

 

Can you explain this more? What is MTHFR and how would they test or treat?

 

Could going off the anti-depressants and/or the over medication of deplin cause her to still feel nauseous three weeks later?
 

Edited December 27, 2015 by fourcatmom

[jewellsmommy]

 

 

Can you explain this more? What is MTHFR and how would they test or treat?

 

Could going off the anti-depressants and/or the over medication of deplin cause her to still feel nauseous three weeks later?

 

Not wapiti, but ds was given Deplin recently so I'll try to help. MTHFR is a gene that is responsible for how folate is processed and metabolised by the body.

 

The definitive test for MTHFR functioning is genetic testing. Doctors can also arrive at the same conclusion, though, by testing folate and homocysteine levels in the blood. If you have a problem with this gene then your body is not breaking down folic acid into the useable form the body/brain needs. You can add folic acid all day long to the body, but it will do no good because the body is incapable of breaking it down to a useable form (if you have this gene problem.) Deplin is the already metabolised form that the brain can use. So, Deplin is given in these cases. I also noticed that Deplin is given for certain depression cases, according to their pamphlet. You should probably find out if the docs believe that your dd has the MTHFR malfunction OR were they prescribing Deplin because of the depression. 

Edited December 27, 2015 by jewellsmommy

[wapiti]

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Edited September 15, 2016 by wapiti

[fourcatmom]

Not wapiti, but ds was given Deplin recently so I'll try to help. MTHFR is a gene that is responsible for how folate is processed and metabolised by the body.

 

The definitive test for MTHFR functioning is genetic testing. Doctors can also arrive at the same conclusion, though, by testing folate and homocysteine levels in the blood. If you have a problem with this gene then your body is not breaking down folic acid into the useable form the body/brain needs. You can add folic acid all day long to the body, but it will do no good because the body is incapable of breaking it down to a useable form (if you have this gene problem.) Deplin is the already metabolised form that the brain can use. So, Deplin is given in these cases. I also noticed that Deplin is given for certain depression cases, according to their pamphlet. You should probably find out if the docs believe that your dd has the MTHFR malfunction OR were they prescribing Deplin because of the depression. 

 

This. It was suppose to help the depression and be used with the anti-depressant. Unfortunately it back fired and now she doesn't take either one. :glare:

Edited December 27, 2015 by fourcatmom

[fourcatmom]

MTHFR involves fairly common mutations that affect the methylation cycle.  What medicine (especially mainstream medicine) doesn't know about this is a lot, to put it mildly.  There are additional polymorphisms and mutations that can also play roles.  There is a lot of info on the web but it is often confusing.  I don't think I can even try to explain it.  Experts - or even remotely experienced docs - on this topic are hard to find.

 

As you can see from that first link, this is so complex that I've been procrastinating on even reading about this for months.  My ds is compound heterozygous for MTHFR (he has two heterozygous mutations, A1298C and C677T), plus some other ones (COMT +/- and VDR taq +/+, to name a few).  Our immunologist originally tested for MTHFR through Labcorp and later our ND encouraged us to test through 23andme, where we found the others.

 

I have a relative who is a mainstream doc in a particular position to know about at least some of this, but actually she doesn't have a clue (even though she thinks she does; e.g., yes just take folic acid - no!).

 

I'm sorry, this is really a giant can of worms.  I didn't want to open it even though we are already way, way outside the box.  I'm only just getting around to it while we are waiting on another big-deal treatment that involves participating in a study (not relevant to this discussion).

 

I have no idea about the nausea - could it be related to inflammation from the TBI?  Have you tried anti-inflammatories (ibuprofen or more natural ones e.g. curcumin)?  

 

Supplementing methylfolate and the various b-vitamins can take some trial and error.  Our ND recommended starting 5-MTHF and methylcobalamin (or hydroxycobalamin) in tiny doses, the 5-MTHF at just 200 mcg to start.  Then we'll probably end up going too high and then backing down; I can't imagine going over 800 mcg but we'll see.  As an example of what can happen, I bought some Thorne Methyl-Guard for my ds recently and I tried one capsule - whoa, too much for me - I thought my head was going to explode, but a small fraction of Thorne B-complex (with niacin) fixed me right up.  It's quite amazing.

 

This is all very confusing. Thank you for trying to explain it. I do think the Deplin 15 was way too much, obviously. That is what we heard echoed by every doctor was that she should have been started out on a very small dose and worked up from there.

[geodob]

The therapist would have prescribed the Deplin15 for depression.

Where they probably don't know anything about Folate or synthetic Folic Acid?

 

It was not prescribed to treat to a difficulty with metabolising Folate.

Where MTHFR, is a disorder with a gene, that produces the enzyme to process Folate.

Which is clearly not a disorder for your daughter, given the high levels of Folate shown in her blood.

 

Where excessive levels are the problem.

[Tiramisu]

The therapist would have prescribed the Deplin15 for depression.

Where they probably don't know anything about Folate or synthetic Folic Acid?

 

It was not prescribed to treat to a difficulty with metabolising Folate.

Where MTHFR, is a disorder with a gene, that produces the enzyme to process Folate.

Which is clearly not a disorder for your daughter, given the high levels of Folate shown in her blood.

 

Where excessive levels are the problem.

 

I was wondering about this. Would high levels indicate a build up of folate due to the inability to process it? Or would it mean that she is processing it well?

 

(From someone who has had high folate levels.)

[fourcatmom]

I was wondering about this. Would high levels indicate a build up of folate due to the inability to process it? Or would it mean that she is processing it well?

 

(From someone who has had high folate levels.)

 

Good question. And, how long would it take to get the level back to normal?

[geodob]

I've been looking into this?

High levels of Folate in the blood, isn't a problem. As it just means that their is plenty available for use.

Though B12 / cobalt is needed to convert Folate into a usable form.

Where a B12 deficiency, can cause Folate levels to build up in the blood.  As the Folate can't be processed.

But higher levels of Folate don't cause any problem.

 

With Deplin15, it contains a processed form of Folate, which is taken up into the blood.

But Deplin15 also contains other chemicals that cause:

 

"According to the manufacturer, “dietary management of depression with Deplin regulates all 3 monoamine neurotransmitters associated with mood by providing the increased requirements for Folate in the brain.â€

What this means, is that it artificially stimulates the brain to take up more Folate.

Which artificially stimulates the '3 monoamine neurotransmitters associated with mood'.

 

Where the artificial stimulation of the neuro-transmitters?

Is the real issue. Which had a different effect on your daughter.

So that rather than high levels of Folate being the problem?

It is more likely that the way that Deplin15 effected her 'neurotransmitters', is is the issue?

 

But you also mentioned that she was also taking Celexa and Imetrex at the same time?

Where it is noted that taking other medications at the same time time, with Deplin15.

Should be discussed with the doctor.

But little is known about the interactions.

So that interaction could also be a problem?

[Tiramisu]

Very interesting. Thanks, geodob. This makes sense for me since I've had low B12 in the past. 

[fourcatmom]

Very interesting. They did check her B12 levels at the same time and they were normal, right in the middle of the range that they look for.

 

This is something that I found that night though, and she had many of the symptoms. The symptoms I remember her experiencing that day are in bold. Those were new although with some other medications she had the numbness. She was also vomiting and she was not sick. Also if teens need 600 mcg's and from what I understand a deplin 15 = 15,000 mcg that would be way to much medication. Am I missing something?

 

http://www.livestrong.com/article/408171-signs-symptoms-of-having-too-much-folic-acid-in-your-body/

Toxicity

There is no health risk associated with folate intake from food. However, there is risk of toxicity from folic acid found in dietary supplements and fortified foods. Folic acid is used to treat a folate deficiency. However, a folate deficiency is virtually indistinguishable from a vitamin B12 deficiency. Large doses of folic acid given to an individual who has a vitamin B12 deficiency and not a folate deficiency can cause irreversible neurological damages. The Food and Nutrition Board of the Institute of Medicine has established a tolerable upper intake level for folate. For children 1 to 3 years the limit is 300 mcg daily, for children 4 to 8 the limit is 400 mcg daily, for children 9 to 13, the limit is 600 mcg daily, for adolescents 14 to 18 the limit is 600 mcg and for those 19 and older the limit is 1,000 mcg per day. Intakes above recommended limits increase the risk of adverse health effects.

 

Signs and Symptoms

Having too much folic acid in the body can result in a variety of signs and symptoms. Less serious side effects include digestive problems, nausea, loss of appetite, bloating, gas, a bitter or unpleasant taste in the mouth, sleep disturbances, depression, excessive excitement, irritability and a zinc deficiency. More severe signs include psychotic behavior, numbness or tingling, mouth pain, weakness, trouble concentrating, confusion, fatigue and even seizures. An allergic reaction to folic acid may cause wheezing, swelling of the face and throat or a skin rash.

 

She was on the Celexa but I do not believe she had the Imetrex those three days. So, yes possible a reaction to the combination.

 

 

Edited December 29, 2015 by fourcatmom

[Heathermomster]

(((Hugs)))

 

I hope that your DD starts feeling better soon.