Wallowing in a POTShole

[Guest Mary from OH]

I called Marissa's PCP and got an appt for her. They seemed concerned about her abdominal pain. They will also check and see if her ear infection is cleared up. (I think I forget to mention that part of the story... ) Hopefully the appt will go well. I don't really know what they can do for her, but at least they're willing to try! The RN seemed concerned about the GI's dismissive attitude. I was glad. I told her I felt like I was living on another planet. She said that it was a good way to explain it.

Well, I'm still in a major POTShole, but there may be a little tiny light flickering!

[Miriam Poorman-Knox]

Dear Mary,

I'm so sorry that you are feeling so bad.  You should not get upset that you are feeling so crummy because I think it makes it worse for us. You will "walk through the valley" and come out a stronger person because of it, I'm sure.  When I feel particularly horrible I just get into bed with my child and I let him watch TV even if I can't.  He still feels close to me and accepts that I don't feel good.  You might want to consider family counseling since it is affecting your marriage as well.  Martha

<{POST_SNAPBACK}>

Mary,

I am Miriam and as all pots patients know depression is a part of the SYNDROME and having a special needs child doesn't make it easier. Perhaps if you contact a local college, medical school, or graduate school, there are people who have to do so many hours of therapy, and are looking for patients, this is free. They match you with someone with knowledge about medical, social conditions etc. I did that when I was in seminary, and had so much to offer, and I didn't know I had pots. Also call your churches, there are chaplains and you can be wherever you want with them. Asking your husband to leave seems too easy to me. He has responsibilities to both you and your daughter. Set a schedule for his time, stay in seperate rooms but think and have faith--you have free will and with that free will you will find people with knowledge to help you, and if they can't they will help;;;never lose that faith in yourself my friend, I am, here. Miriam

[briarrose]

Mary

I apologize if I repeat anything because I didn't have time to read all of the other replies, sorry.

I just wanted to say Chin up! I think we've all been there but you need to take it one step at a time. You need to take care of you first because if you're not well then you can't take care of your daughter. (You know when you fly on the airplane they tell you in case of an emergency the air mask will drop down, put it on your face first before helping your child or anyone next to you. That's because if you're incompacitated they you can't help them!)

I think I know what you're going through. I've been struggling with my daughters stomach for over 3 years now. She has "Irritable bowel syndrome" I've had to take her to several doctors looking for help. We think our care is bad, doctor's listen to kids even less. And you can't just walk into a Specialist office (GI doctor) without having your doctor set it up for you; it doesn't matter what your insurance is.

As for your husband maybe you need to sit down and have a heart to heart or have you thought about counseling?

How's your health and what can we do to help you make it better?

[MightyMouse]

That your daughter's GI doc said that about her pain is absolutely infuriating!!!! His duty of care includes making sure she has adequate pain control. His own representative agency, the AMA, reminded all of their constituents of this a while ago when a Dr. in CA for sued for medical negligence for failing to adequately treat his patient's pain. Every doctor has a basic "duty of care" (a medical liscence term for the basic mandate of every physician) to treat each patient for pain. Time to consider 1) filing a complaint and/or 2) finding a new GI for your child.

nina

[DancingLight]

mary...

i rambled under the wrong topic...so look under my surgery post for a response to you! oops!

emily

(i think i used up all my brain power for the day...he-he)

[EarthMother]

Dr: "I think your pain is all psychological."

Patient: "I suspect your medical degree is ficticious too."

There. I feel better now.

EM

[briarrose]

Katherine

I finally had time to read some of the responses and I can't believe you thought of the airplane oxygen too, LOL this is truly weirdness

I wanted to post one other thing that I was thinking of. I know that your daughter is older but it wasn't until my children got older that I understood this plaque that my mother gave me. I will always cherish this now as I fully understand what she was trying to say to me. I use to go on and on about the house and the mess. My husband use to complain endlessly and quiz me about what did I do all day. The list was always long and if he walked in my shoes he would see what he couldn't visually see was done.

Cleaning and Scrubbing

Cleaning and scrubbing can't wait 'til tomorrow

For babies grow up, we've learned to our sorrow...

So quiet down, cobwebs; dust, go to sleep...

I'm rocking my baby, and babies don't keep.

[Ernie]

EM,

I have to remember that one. Good thinking.

Ernie

[briarrose]

I can totally believe that the GI doctor said that as they said the same thing about my daughter. I found another GI doc for her and she wasn't too much more help either.

Nina

It's been my experience through 6 kids that doctor's don't feel very inclined to help kids out of their pain. I guess were many more decades away of treating kids for pain and illness the way adults are; with that said look at what we go through to get some decent treatment and pain control.

Mary

What is your daughters diagnosis?

You know, I mentioned my daughter to Dr. Grubb and he said that they are starting to find a correlation between IBS and Dysautonomia.

Keep your spirits as high as you can and try to advocate for your daughter the best you can. I know I'm still trying to find other things out for her as I'm not satisfied with the simple IBS diagnosis. I have found that she is allergic to wheat and peanuts which doesn't help anything. But her stomach problems have changed her life as she isn't very active anymore and doesn't want to do anything.

[MightyMouse]

US doctors tend to do a woefully bad job at treating pain, in general. Things have gotten better in the past few years; I've actually had some of my longstanding doctors begin to ask about pain level at each visit.

As for getting pain management for a child, one's best bet is probably to go to a medical setting that specializes in children, i.e. a pediatric hospital, even better if affiliated with a teaching setting. Near my home, we have several--Temple, Children's Hosp of Phil., Shriners, etc... (there are more).

Nina

[Guest Mary from OH]

EM- You made me laugh!!

Nina- The sad thing is that we are in a teaching hospital. A very prestigious one that people come from all over the world to have procedures done. The drs are just so busy that I think they forget to treat you like a human being some time. Marissa's dr can be the most caring human being in the world, but if she is in a rush - WATCH OUT!!!

Emily - Don't worry about posting in the wrong place. I'm just happy that you posted. You're so cute!

Briarrose- My daughter has MANY diagnoses. She has: migraines, abdominal migraines, GERD, dysmotility, gastroparesis, hypomotility, visceral hyperalgesia, redundant colon, mild neuropathy in her small bowel, abnormal lack of contractions while eating, allergies and EKG changes. Her severe GI problems have resulted in her needing to have a cecostomy so that we can do irrigations every night because she cannot have a bowel movement on her own. Her cecostomy prolapses frequently (which they have never seen before). She is on a total of 3 oral laxatives (all at adult dosages) and 2 laxatives (adult dosages) given through her cecostomy. Basically, in a nutshell her whole GI tract is screwed up royally!! Her stomach is paralyed and her colon is paralyzed and her sm. intestine doesn't contract in a synchronized fashion. Also, they suspect that she has POTS too based on her "beginning" symptoms already (migraines, severe motility problems, low body temp, low BP, intolerance to heat, etc.....). Plus, since I have POTS and my husband has vasodepressor syncope, she's pretty much screwed.....

OK. Enough talk. I'm wallowing again. My migraine is pretty bad today and we're warm again today with 40-40 mph wind gusts and we're supposed to drop 35 degrees in less than 24 hrs. So, if I don't end up in ER it will be a miracle...

But, on a somewhat "ok" note. Her PCP (or at least one in the practice) saw her yesterday and said her ear is not infected (at least now). And she was not happy with how things are going with GI. She wants to either try to help "fix" things with GI, or find somewhere else to help Marissa. (she said my choice) She is getting all of Marissa's GI records and will help me make a decision. I have no idea which is better because, unfortunately, she needs a pediatric MOTILITY specialist and they are few and far between. We'll see.

[Guest tearose]

Earthmother, wonderful reply for anyone who needs a comeback!

Briar, I had heard that prose? years ago and never could recall it. Thanks, for writing it here. It is so true!

Mary, I am pleased that this doctor is going to look into finding a pediatric motility specialist. With all the troubles Marissa has, someone has to help you figure this all out. How can any doctor allow a 5 year old to have to "live" like that? There must be someone, somewhere who can get her gut moving again! I keep hoping...

Were you able to do something for yourself? Are you rising up yet? You sound like your back on to your hectic schedule...please don't forget to replenish yourself so you can keep riding these waves!

best regards, tearose

[Guest Mary from OH]

Tearose,

Help for me? Yeah, right. When I find the time... It's much easier to focus on others. That's what I do best.

Marissa already sees a pediatric motility specialist. But her ped is going to try to see if there's another one to see. (doubtful, I pretty much know about all of them, but I'll pray she finds something I'm not aware of!!)

Yes, the hectic schedule always has to go on. In fact today is my craziest day of the week. In fact Marissa and I were talking before bed last night and we have a total of 8 things we must do today!! I was tired just thinking about it!!

It was funny because someone here was talking about POTS people feeling the best at the end of a day. I am totally the opposite. I used to be like that. I was totally a night person. Now, I am TOTALLY exhausted by the end of the day. We have 2 story house. And when I go upstairs to get Marissa ready for bed and do her irrigation. I have exhausted myself and don't even have enough energy to come back downstairs. In fact, most of the time, I can barely summon up enough energy to drag myself to the tub or shower to bathe.

One of these days, I will get some energy back!

[briarrose]

Mary

I didn't realize how ill your daughter is, I am truly sorry. You have your hands full and I can understand better what you're going through. If it was my daughter I would take her somewhere else that knows anything about her problems, you need all the help you can get. My daughters problems pale in comparison and are more managable when she behaves on her diet.

You still need to take care of you, if there isn't a you then your daughter will suffer. Can you ask for outside assistance from hospital volunteers to come help with your daughters care? OR is there some state assisted counseling available?

Nina

There are only a few pediatric GI specialists in my state and I've taken my daughter to 2 of them. Neither one of them did anything for the pain that she goes through. Her pediatrician wanted to leave the medication route up to the GI docs so she didn't do anything either. I would like to take her to Seattle but that would require a lot of arm twisting for the pediatrician to do an out of state referal. I don't know that they would do anything differently either. I'm pretty fed up with the way that doctor's treat kids too.

[Sue]

Hi Mary!!

Hope you are feeling better!! We all know how you are feeling, all too well.

I am wondering if you belong to a church. Only because with so many members your pastor/priest may be able to hook you up with someone professional to talk with as well as someone to come and watch your daughter so you could get a break.. Its worth a try.

Last year I was in such a rut I would even entertain the telemarketers when they called!! thats bad

Anyway I wish you best!!

sue

[Guest Mary from OH]

Nina-

We applied for BCMH (state assistance for medically ill children) and were turned down. They have had major budget cuts like everyone else. For a family of 3, you have to make $29,000 or less/yr. It's ridiculous.

In terms of your daughter's problems, there are a LOT of great GI's in the Seattle area. I've belonged to ped GI internet support groups since Marissa was born. If you want, I could get you some names! If you want you can email me privately and I can let you know what tests to ask for to get your daughter properly diagnosed. Unfortunately, I think I've become somewhat of an "expert" at this. Between Marissa and all the people I've met over the last 5 1/2 years of her life, I've learned a LOT!

Like I said before, I'm REALLY good at helping OTHER people. Somehow, my care just always comes last. But, I honestly feel that my daughter's should come first. But, I do understand that I need to be "healthy" to take good care of her. So, I never let myself get "too" bad... I guess that's why before Thanksgiving I finally dragged myself to the ER and relented.

Thanks again!

[Guest Mary from OH]

Hi Mary!!

Hope you are feeling better!!  We all know how you are feeling, all too well.

I am wondering if you belong to a church.  Only because with so many members your pastor/priest may be able to hook you up with someone professional to talk with as well as someone to come and watch your daughter so you could get a break..  Its worth a try.

Last year I was in such a rut I would even entertain the telemarketers when they called!!  thats bad

Anyway I wish you best!!

sue

<{POST_SNAPBACK}>

Sue-

We do belong to a church. But, we actually haven't been since before Thanksgiving, which is unusual for us. We've been sick on/off and having "family problems". My pastor did call and check on me and I let him know we've been under the weather etc. He offered prayers and sympathy, etc. But, noone ever really "helps". I'm not very good about asking for help. It's kind of an uncomfortable thing. I'm good at giving it!! Plus, sometimes I'm embarassed for someone to see my house such a mess.... But, honestly noone has offered. We've been members there for about 10 years or more. I guess I'm waiting for someone to offer? I don't know? Maybe I'm just nuts!

[geneva]

Mary, why not give your pastor a call and ask if he could drop by at a time convenient for you. Do not try to impress him by cleaning. Tell him some of the details of what is going on right now in yours and Marissa's lives. Then, ASK him for help. If he is a good one, he will know where to take the conversaton from there. Mary this canNOT hurt. You need help right now and while that is hard to admit and even harder to act upon, it really seems you need a break. Just try it!

[Nicole's Mom]

Mary,

Sorry to come in so late in your post. First of all- I want to tell you that I think you are a great mother and I am so sorry that you are having so many obstacles and stressors and that you feel so worn down.

Since some obstacles and stressors can be resolved and some can't, I am thinking that the advice you've gotten about getting some counseling even if it for yourself- however you can get it- is the best advice here. Because your daughter needs you to help her- and you are the main one- with that husband of yours so "absentee". You might not be able to drag him along but you need it to keep your spirit from feeling so "tired". You have a lot on your plate and a counselor can help you sort out what can become better and what may have to remain challenges. You can also get some coping techniques.

My strongest advice is to put your energy into this counseling for yourself so you will have the energy to deal with your daughter's illness which sounds very complicated and she is in a lot of pain. I hope her PCP can help you to get your daughter the best care possible.

Beverly

[MightyMouse]

Mary, that's pretty distressing that it's a doc at a teaching hospital who's so cavalier about your daughter's pain. Have you spoken with him directly about not treating the pain? As a psychologist, then, you understand what I'm saying when I speak about a basic "duty of care"--It's part of licensing for any helping profession.

Anyone live near Mary who can suggest someone? I have some connections, albeit, a few years old, at Children's Hospital in Cincinnati... I could try emailing some old friends if you think it might help you at all.

Nina

[Guest Mary from OH]

Nina-

Yes, I directly talked with the HEAD of GI about not addressing her pain issues. He told me that "she has motility issues, she's going to have pain, she needs to learn to deal with it." I think that's when my BP actually soared, which is actually difficult to do for a POTS person!!!! I saw red and he was lucky he was only on the phone with me and not in person, because I may not have been able to control my urge to choke the life out of him.

When Marissa was 2, we went to Cincinnati Children's for a 2nd opinion. They have a specialist there (Dr. Philip Putnam) who specializes in Eosinophiic Disease. Through my research, this was something that I kind of suspected with Marissa. Columbus Children's was supposed to have tested her for it when they did her biopsies. I later found out they didn't. So, after almost 2 more years of suffering, I took her to him. He is a guru in ED. She was admitted for cleanout and had upper and lower scopes. They were amazed how long it took to clean her out. They even accused us of not doing the bowel prep and withholding food... I explained that she is always this backed up. The scopes really didn't show much (as usual.). But, Dr. Putnam had also reviewed her records from our Children's and noticed she had a gastric volvulus on one of the films that our Children's had missed. (a twist of the stomach). Obviously it had resolved itself (otherwise she would have died!!). He explained that it can happen again and again and recommended that she have her stomach "tacked down" surgically so that it doesn't flip. Also, because of her severe reflux (GERD), he recommended a NISSIN fundoplication whereby your esophagus is wrapped to your stomach so that you can't vomit. I knew from MUCH research that there was NO WAY she was going to have that procedure!! It is TROUBLE!!! So, I went back to Columbus, to discuss the other with my GI there....

I also thought about it and talked with my family, support group, etc. I decided that since Marissa's stomach had not "flipped" more than once in ovet the 2 years that surgery was a little aggressive. But, sadly, we still had NO answers, or solutions to her pain, etc.

It wasn't until MARCH 2004 that she was finally properly diagnosed and started to be treated more adequately IMO. That is when she had extensive motility testing from top to bottom (mind you I asked for this since she was an infant) and she got her cecostomy.

I'm not sure if I answered your question or just digressed? To my knowledge, there are no other motility experts in OH other than ours. I believe the next closest would be NY or Boston.

[violahen]

Hi Mary:

Sorry I haven't posted lately on your problem(s). My goodness, I can't believe what you are hving to endure. I live in Cleveland and have fantasized about coming to Columbus to rescue you! I'm one of those people who are really good about taking care of everyone except myself too. Unfortunately I am in a bit of a POTShole myself, and my husband is out of town for the next two weeks...I am here alone with my 3 and 5 year old. I really want to help in whatever way I can.

Would it be helpful to you to have me contact the Cleveland Clinic about any of this. By now I am a real pro at dealing with docs and hospitals. I DON'T back down. I am very persistent and could possibly get some advice/answers for you.

The other thing I would suggest is that if you know someone in NY or Boston, call them and calmly explain to the staff your problem and request a consult over the phone with the doc...this often takes persistence, but it usually can work if you don't give up. They could possibly help suggest a course of action or maybe recommend a doc in your area that you are not familiar with...

Just trying to come up with some ideas...please let me know if I can help...I am happy to call the Clinic....I would just need the basic outline of your situation. Hospitals, docs and insurance companies are my specialty....I sort of enjoy the incredible challenge in some weird twisted way.

Hugs and good thoughts,

Kristen

[Guest Mary from OH]

Kristen-

Thanks for your offer. If you could check into the Clinic, I would appreciate it. I think that they do motility stuff, but maybe not in children. Maybe at RBC?

I know what you mean about dealing with the kids alone. It's the story of my life. But, sometimes it's easier, because my husband seems to make it worse! It's like having another child.

[Guest Mary from OH]

Hey-

I posted a NEW msg about Marissa - her GI actually called me!! BIG news!!

[MightyMouse]

Mary, I was infurated when I read what the Head of GI said to you about pain. I think my only answer back would have been "that's an unacceptable answer, she needs adequate pain control."

I did see from your other post though, that there may yet be hope that relief is coming. Nina