When you have MS and your child is chronically ill too

[salamandertom]

My son is 5 1/2. He has a variety of issues. The primary issue is a pain in the butt, but unless he gets hurt or has a nose bleed tends to be generally stable. He has a bleeding disorder called von Willebrand's disease type IIa (severe). The problems arise because he also has "severe pathological reflux" and asthma. The reflux most likely causes the asthma. He takes an adult dose of prevacid and two meds a day for asthma. Not to mention whenever he gets a cold he needs a lot of maintaining asthma stuff.

Anyhow, the point is that the pedi pulm decided last week that Brody would do better if he had a fundo, which is a surgery to stop reflux. Now, he has not recomended that in the past. We got a second opinion 2 years ago that also said for him to have one, from a highly respected doctor in the field. His doctor has said she would do one, she was just hesitant b/c of the bleeding issue.

Once the pulm said that the GI said we should see the surgeon. We did and now she wants to do MORE tests. She was aggressive. WHY do you WANT this for your son with a bleeding disorder? Blah blah blah. I have been doing this for FIVE years. Honestly, this child is perfect to *ME* but I just want him to have the best shot at a normal life as he can. All she can think about are statistics. She would rather worry about a 1% chance of death, than him DEFINATELY getting osteoporosis and being disabled by 25 years old from the prevacid. Not to mention the new studies that show it makes the production of acid WORSE over time. She could care less about that, she is more worried about the chance of death.

Then she presents it as if *I* haven't thought about it. REALLY? Like I would not consider this for my CHILD? Sigh. I want to be a doctor, but sometimes I hate them. I mean, and I thought she was good. LOL. She was just a typical surgeon, which I also wanted to be before MS.

SO, so far I am doing great with this stress. BUT, work stress is bad. Home stress is bad. I am about to start a summer course on top of ALL of this. Plus my son is having a bronchioscopy at some point in the middle of the course. Any advice on how to keep all this stress in a positive light. Any good low impact, beginer excersize videos? LOL, or yoga? I want to start - but don't know where. I need to learn how to channel all this pent up negative stuff, but I don't know where to start! Thanks for any and all help!

[cosake]

What an awful lot to have to handle. Having a child who is ill must be incredibly stressful, even if you are able to manage symptoms somewhat.

Too bad that you are being second-guessed by the surgeon, but I would imagine that she has some parents who do not do the research or think through what could happen with their child. You may be the exception.

You may want to see a second surgeon for a second opinion ? Or have a sit-down with the surgeon and you can tell her your thoughts and concerns, instead of her telling you hers !

Do you have a spouse/partner who supports you in your decision ?

As far as stress goes -- what a tough thing to try to manage. Something different works for everyone. Can you do Wii games with your son ? That would be fun, and exercise, and take your mind off things and help relieve stress. Pilates would be great - I recently took a Pilates in the Pool class and it was wonderful.

Or, do you take time for yourself, by yourself ? Go take a walk with some headphones, or read a book, or watch a movie, go hang out with some friends, take a class (Pilates, Yoga, etc.).

I get myself lost reading all of the time. It takes just enough concentration to read that I can forget about everything else in my life, but it's not so mind-intensive that I got exhausted thinking about what I've read.

Good luck and take care.

[Jules A]

It sounds like you have done your research and know what is best for your child so I would suggest you find a doctor that will do the operation if that is what you have decided needs to be done.

Please keep in mind that if a child dies it is the surgeon who will be blamed regardless of the known risks involved and frankly I respect her hesitation.

[terie-tk]

Sort of similar issue with my son ~

He had very bad reflux issue and had fundoplication surgery at age 5 1/2yr too. This was after being on medications almost from birth that eventually included adult doses of the PPI's that he was taking when he was 5. We decided on the surgery due to battling the weight loss/eating issues. He also had behavior/ADHD issues that were at the time just starting for him.


Not sure what tests your son has had, but my son's GI ordered quite a few tests before he sent us to a surgeon.
He had a PH monitor and gastric emptying test & more. What tests did your MD do ?

My advice for you? Like you already wrote , find something you like to do, preferably like exercise class ~ ( I'm trying water exercise this summer ~relaxing & cooling!)

Also my son is now 18yrs old , no reflux, at least that he admits. He doesn't take any meds for reflux either !

He was small for his age from having reflux. Well he started growing at about 15yr and caught up. He's like 5'9".( And he's still a huge pain in the butt too !)

[sunshine008]

hi

I feel for you and get it, having a sick child with MS is not an easy thing at all.

I'm sorry for what he's going through yet it sounds to me as if you have alot of info to make the best decision for him possible. I wish you luck, always scarey when it's our kids.

As far as stress I have found myself in a similar boat as of late and do not have as much as you have going on, so i give you alot of credit in coping.

I find yoga to be very relaxing, also the meditating while in yoga positions helps calm and ground me. I'd start there maybe because it's something you can do around your busy schedule by ordering a yoga video on line or sometimes cable channels have free yoga you can do on the tv..

either way i wish you luck with him, Im sure it'll go well and i hope you find some peace with the yoga as i have.

((hugs)) hang in there!!