referenced EEGs and burned out mom

[pepperidge]

We're off to see a new psychiatrist next week after current one has left area. This is the only one left and I am not even sure he is board certified. Apparently one of the things he likes to do is referenced EEGs. Basically, an EEG that is compared to a data of many patients who have had response to a medication for some psychiatric condition. For $$$.

While I believe that psychiatriatry will hopefully sooner rather than later find some bio-markers for various illnesses, I am not sure this terribly worthwhile. Especially since for my youngest, he has been on : Ritalin, Adderall, Focalin, Tenex, Wellbutrin, Strattera, Zoloft, Abilify, Topamax, Trileptal, Lamictal, and probably one or two others I've forgotten. I mean, even if it predicted some drug might help, realistically speaking, there isn't a whole out there left to try and a good psychiatrist shouldn't need a lot more guidance.

Some psychiatrists have told us that Fetal Alcohol Syndrome (FAS) kids are hard to medicate. I believe it. I am at the point of giving up all together, and just dealing with the impulsiveness, argumentativeness, refusual to let go of something he wants, complete need for ongoing stimulation, etc. And unfortunately, as he gets older, I think we are only exacerbating some of it because it is so darn hard to give him positive feedback and go along with what he wants. (e.g fishing in winter). I fear he has developed a sense of himself as a bad kid which I don't know how to overcome.

I have few inner resources left. I manage on a day to day basis, but am completely burned out. Way beyond what my daily bath and walk can give back. We have no respite care of any kind. Kid doesn't even get invited on playdates. My husband and I take turns, but it is hard, and hard on our marriage. Sorry for whining here. I know many of you are dealing with way worse. I need about a three month sabbatical from being a mother.

Anyone know of an awesome Fetal Alcohol Syndrome (FAS) clinic that treats the whole child? I'd sign up in a minute. One's I've investigated are much more oriented towards diagnosis. We got that one down already....


Pepperidge

 

[totoro]

Pepperidge
you know I just don't know and haven't heard that much about the EEG's as far as having a clear and any scientific proof of results.
We read up on it somewhat when we heard of some places in Seattle area.
I just don't know.
I kind of remember your area and I think it was like where I was. Very limited on resources and who was taking patients and who was even in the area.
I also do not know much about Fetal Alcohol Syndrome (FAS). I am sorry. We are struggling with the feeling alone overwhelmed thing as well.
Please do not ever let it build up though. Come here and let it out! My gosh who cares who has it harder or easier?
My kid may be stable one day(not) and fall apart the next.. we just never know do we?

Keep looking. I guess you can go to this guy and see? He might be open to your ideas?

 

[Ropefree]

The possitive we say to our children help them to identify with their strengths. Finding caring others who can give you time to rejuvinate is important because you are the one in your family everyone needs.
I am so puzzled that schedualing and getting into a psyciatrist is so often repeated as difficult. These children need attention from someone who is qualified and experianced.
The scan you refer to is a brain scan, yes?
What about teaching university psyciatric departements? If it is not readily available to get a specialist where you live than just go where you can and get the best less often.
Are you in touch with the Public Health Nurse because you may be able to co-ordiante something with the psyciatrist and support in your area by some other means.
I would ask alot of questions about the EEG test and where the physician has found this meathod. And if he is certified is info I would want. And who else uses it and what are the peer reviews available to read over. It is truly amazing what one can learn on the phone when the
condition is so unique.
Good luck, big heart, and smile for your gifts.

 

[BusynMember]

I'm not sure I'd spend the money on the EEG unless you have plenty of it, as it probably won't do any good.
I know a lot about Fetal Alcohol Syndrome (FAS) because my adopted son was exposed to a lot of stuff in utero and I spent a lot of time with professionals asking about it and then I spent even more time reading about it. We wanted to be prepared in case he had it. We were lucky--he dodged that bullet (not all of them, but that one).
We did take him to a great, well-known Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) Clinic in Chicago. If you PM me I can give you the name of it. However, as you probably know, Fetal Alcohol Syndrome (FAS) kids suffer from organic brain damage and do not understand right from wrong that well, and often "forget" things from day to day. It's called "swiss cheese learning." They may understand something one day, then forget.
The best treatment that I've read about for even adults with it (and I read a new article just recently) is to have them live in a very structured enviroment so that their caregivers can keep them out of trouble. The adults themselves were very relieved to understand why they didn't seem to be able to learn from their mistakes or stay out of trouble. It is a deficit they have. Since these people do have brain damage, medications can only treat the symptoms. Both Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) kids and adults need supervision to stay on track. Although this may sound bleak, it's really not. The adults can live very happy lives, they just need to have "parents" watching them so that they remember what they should/should not do. This is not a psychiatric condition. It is more on a par with an older person who has some Alzheimers (this was how it was explained to me). It is very frustrating to deal with, but if you understand it maybe that makes it easier...PM me if you want the name of the clinic. I do not know how much treatment they have. I do know they have a great nationwide rep. We only took my son for diagnostic purposes.

 

[susiestar]

Oh, Sweetie,

You have done so much already for your kids. It stinks to see no help and no end in sight. I know the doctor may like this test, but if you already know hwat is wrong, and he has been on all the medications, what is the point? I think it would not be wise to spend a lot of $$ on it. If insurance covers it all, then fine, but otherwise, why bother?

I have heard so much about how hard Fetal Alcohol Effects (FAE)/Fetal Alcohol Syndrome (FAS) is to treat. I know one boy who is identified to have it at our school (there are more, I just happened to have Jess in class with him and a teacher with NO idea of privacy laws and she told me about it) and he still is working on ABC's and numbers in school. And they have him mainstreamed in 8th grade classes. His parents are bio, and feel they did nothing wrong iwth exposing him to all sorts of things. I just heard from another parent that the boy brought a beer to school in his lunch (packed lunch - somehting he is NOT capable of doing for himself). The "system" and his caseworker are fighting the schools efforts to have him removed from his home. This is one in a LONG line of incidents - such as sending him to school with a note and a bottle of his mom's pain medications because it "helps keep him quiet".

I know your children have better parenting than that poor boy. And they are probably more able to do things, but still extremely difficult to parent.

I will look around to find out what resources I can find. I KNOW the developmental pediatrician in Tulsa that we adored treated some children with this set of problems. Partially because he asked if my niece had it when she was with me on one of wiz' appts (she was a few months old). She doesn't, but has some of the physical markers and a mom with sub abuse problems including alcoholism, but is hopefully in some stage of recovery.

I can call them and ask what resources tehy know of, or even email the doctor - I still have his email in the other computer. Not sure he would answer, but it is worth a try.

have you talked to the dept of human services and/or dept of rehabilitation/disability? I know here they offere help with certain things. also, Goodwill industries might ahve some programs, or the Salvation Army. You ahve problem thought of this, but I wanted to put it out there.

Many hugs, and I am so sad you have seen all the psychiatrists in your area or they have all moved away.

 

[smallworld]

C, no advice, just hugs. I wish things weren't so darn hard.

 

[house of cards]

I have 4 kids that were exposed to drugs/alchohol. Major has been diagnosed Fetal Alcohol Effects (FAE) and ARND at 2 different times. He also has been diagnosed with mood disorder not otherwise specified, ADHD, anxiety. He overreacts to anger, fear, and frustration, he is OFTEN irritable and angry with no reason, he needs a slower, smaller classroom with less distractions, and he needs to feel loved. The smaller classroom has helped a ton with his feelings about school.

I haven't seen a whole lot of progress on handling his emotions better. It is my hope that as he matures and as he builds a life avoiding the things that frustrate him, that he will be ok. I do not see Major as needing constant supervision as an adult. Lamictal gave him back his smile.

My L just had neuropsychological testing, she has attentional problems, anxiety, low average IQ. She struggles in school especially with math and reading. The neuro reported her scores as consistant for drug /alcohol exposure. I see her having more difficulties in adult life. She may need some help or a very understanding husband.

My S is a bright spot in alot of peoples days, he has a wonderful smile and gives it out freely. He will always be in sp ed but he's doing very well there(honor role). He would do great at a job interacting with people, he's only 8 and a bit early to worry about what he will do for a livilihood but he has told me he wants to sell cars. Sales would be a perfect placement for him. He is a twin to L and actuaully showed more withdrawl at birth then she did.

My sister raised a child with severe Fetal Alcohol Syndrome (FAS), his story isn't as upbeat. He will not allow supervision (he definately needs it), he drinks and has been violent, he rarely contacts my sister.

 

[susiestar]

The teacher that told several of us moms about the boy in Jess's class adopted and raised a child with Fetal Alcohol Syndrome (FAS) herself. He is happy to see his family (mom and dad) but can't live with them because he stops doing things for himself and expects/demands that mom do them for him. That may be a function of their relationship as she is a severe perfectionist.

While he does need supervision as an adult, he is a happy person much of the time, and enjoys the group home he lives in.

I think that there is a wide range of outcomes for this disease, just as with any other. It probably is a spectrum of disorders, rather than a set package of problems.

Anyway, I hope you can get a break this weekend and recharge somewhat.

Sending gentle hugs!

Susie

 

[pepperidge]

Thank you all for the words of encouragement. I needed them!

House of Cards, your description of your son's Major personality is so right on target. What is hard about these kids is that they may have psychiatric disorders on top of the Fetal Alcohol Syndrome (FAS). But medicating them may be harder. He has a sunny nature, but now is getting depressed often. I wonder how much of it is situational and how much is biochemical. We haven't had much luck with mood stabilizers or Zoloft. We got up to 200 on Lamictal but didn't see much benefit. He could probably benefit from stimulants, but they make him more anxious and cause tics.

We are fortunate that the cognitive issues are not too serious. But the impulsiveness, difficulty learning from mistakes etc is huge. We have done about two years or more of therapy, but I think the results are pretty small. I think it is really hard for the therapist to address these issues. OUr school has some social skills groups for boys; I think having a therapist there to give immediate feedback would be far more useful. What breaks my heart most about my child is that he is so desperate for friends and he is basically a sweet kid; but as he says his aggressiveness, impulsivity and difficulty going along with the flow sometimes gets in the way. Every weekend he wants to call up his "friends"; but they are usually busy. And then when they do come over they gravitate more to his older brother, who is more interesting and has less social issues in many ways. He hasn't been invited to someone's house on a playdate in at least a year.

Anyway, keep me in mind if you hear of any great fetal alcohol clinics. I'd like some advice on how to manage all the mood issues, deal with the impulsiveness etc, and manage to be a loving mom at the same time. Not too much to ask, is it? lol.

I'll hang in there. My dream is a camp for difficult children that you could check them into for a week or two and not worry about them.

 

[house of cards]

Yeah, stimulants didn't work out with Major either. Major does pretty well with friends though, I'd suggest getting them together if there wasn't a whole country between us. Major does great(well great for a difficult child) during the summer when the school pressure is gone, how does your kiddo do in summer?