Message boards for kids' medical issues

Two emails in the same morning on this topic. Erin writes:

"My question is about my sweet pea, he's 15 weeks old and the poor thing has 2 problems, He's been diagnosed with torticollis and we're going to therapy for that, which is super frustrating. He also has recently had x-rays that indicate he might have craniofacial dysostosis. I don't know a whole lot about either problem but what i've read about it freaks me out. Have you or the readers possibly had experience with either of these?"

Then Danielle writes:

"My son (fourteen months) has a ton of medical issues. Do you have any advice about where to find message boards for support that don't suck? Would you consider starting some message boards on Ask Moxie? I'd really like to be in touch with other moms going through similar circumstances but don't know where to start."

To answer the last question, I do think about AskMoxie message boards often, and know there's no way I can do them now, but hope to have them up around this time next year. I hadn't even thought about having a medical issues support board, but will definitely add one when it's time.

The immediate question, though, is what other sites do people use now (the important word) that are good, solid sources for information and support? If you've got suggestions for good sites on different medical topics, please post them. And if you have specific info on torticollis and/or craniofacial dystosis, please clue us in to that.

Comments

[Virginia]

Erin, my son was diagnosed with torticollis and plagiocephaly at about 5 months. We did therapy for the torticollis and, as you said, it sucked. He hated it, and doing something (on purpose) that makes a tiny baby upset is really hard, no matter how much you know (rationally, at least) that its good for him. I had several friends/aquaintances that had been through torticollis treatment with their kids, and they all assured me that the therapy worked, made a real difference, etc. We did stick with it. And it did work. And our son is just fine now (he's 2.5 and shows no lingering head tilt). And just as the doctors predicted, he grew out of the plagio & the assymetry in his head. The whole thing freaked me out, too. But its a treatable condition, and you just have to get through the therapy part. There was no way that I ever found to make it less upsetting to him (although as the condition improved, the discomfort of the therapy seemed to lessen). Good luck to you and your little sweet pea.

[Laura]

yahoo groups has some great "boards" for health and developmental issues, in my experience.

[enu]

Yes, the message boards for illnesses (childrens' and otherwise) often do really suck. Don't know what to do about that, because they are open to all, the knowledgeable and the ignorant alike.

I will just give my one piece of advice, for anyone with a child with special needs but especially medical ones, not the traditional "special needs" - learn all about IEPs and 504s as soon as you possibly can and get one in place if it is appropriate for your child, and pay for a lawyer if that will help nail down what accomodations your child will get in school. I knew all about IEPs, I thought, but really didn't know about the existance of 504s until way too late - I guess the outcome is fine - although my daughter had to drop out of math in high school because she was too sick - she aced calc her freshman year of college -but we had mnay miserable years of trying to figure out how to accomodate our sick child to the school with no help in the reverse direction. I just wish someone had sat me down as soon as she had a diagnosis and told me this stuff - it seems there's a lot of this sort of support for learning disabilities and mental issues, but not so much for the chronically ill child.

[hedra]

for food and diet (allergy, intolerance, etc.) issues, nothing is better than POFAK.org. The boards are fee-based ($25/year), but worth a thousand times that. Informed, science-based, supportive, full range of parenting styles (a whole area for breastfeeding food-allergic kids, and another for formula, and another for no-foods (liquid diet) and...). They know, they share, they listen. GREAT people, GREAT help.

Momswearingpuke.com is not bad for reflux issues. Not quite as extensive, but solid (and free).

Don't have any other health-issues ones to recommend. Most just don't get the traffic required to keep them moving (like hypermobility.org - good content, but low traffic), some tend to tilt toward the most dominant personalities (if someone gets a speculative theory stuck in their head and it infects every post it can get uncomfortable).

Yahoo groups are often useful - for Fructose Malabsorption, fructose_malabsorption_australia is nice (I'm a moderator, so take that with whatever salt is required) - reasonable amounts of activity, some research hounds to keep things tilted toward evidence-based, plenty of variety in symptom profiles and experience and age.

Moxie message boards... there goes all my spare time. Heh. :)

[LauraC]

This is timely as I just wrote a summary yesterday of our experience with torticollis, plagiocephaly, and the helmet on a group multiple parenting blog (How Do You Do It?):

http://howdoyoudoit.wordpress.com/2008/08/12/our-experience-with-plagiocephaly-torticollis-and-a-helmet/

There are not a lot of good websites on torticollis other than Torticollis Kids:
http://www.torticolliskids.org/

85% of tort kids end up with some form of plagiocephaly so you'll want to research that. Ironically, the helmet websites have the best info! (see links on the sidebar):
http://www.orthomerica.com/products/cranial/faq_parents.htm

Most of the good tort info comes from physical therapists. My son Alex was in PT for 9 months for the tort and is completely normal now at 2. But the info you do get on the internet is scary. Get yourself a pediatric PT or someone with experience in tort and developmental delays.

As for the craniofacial stuff, don't research stuff on the internet. Get yourself an awesome pediatric plastic surgeon who specializes in craniofacial, if possible.

And feel free to email me, I'm available through my personal website and How Do You Do It.

[hedra]

@enu, there are a lot of non-profit organizations that are meant to help walk you through the process (send an advocate to your meetings with the school, etc.), and I was astonshed to find out (when talking with one that I was thinking of working for) that you can get an IEP (etc.) for a temporary condition like a broken bone! Illness and injury both count. We'll see if we need one for B, M, and R... after we get the 'underlying condition' dx finalized. In November. Hopefully. Sigh.

[electriclady]

I second the recommendation for Yahoo groups; the various ones devoted to Mullerian anomalies were very helpful to me when I was TTC/pregnant/bedresting. There is a good plagio group, and many of the moms there have experience with torticollis and cranial dystosis.

[meggiemoo]

Our DS had torticollis as an infant. We worked with a chiropractor, his pediatrician, and a lot of therapies at home (changing position of his crib, changing table, how we held him, etc.)

It was difficult, but he came through it just fine. The vast majority of children grow out of it, if I remember my research correctly...it is scary, though.

[mom2boys]

T was diagnosed with torticollis at 10 weeks (right tilt). It was super scary and stressful and I felt like a horrible mom for not noticing sooner. He was squished in utero – one of his ears is smaller and was flat to his head but the OB said that was normal and it would straighten out. It’s still smaller and flatter to his head.

We did PT three times a week for the first month, then twice a week for the next two months and then once a week until he was about 8 months old. We saw dramatic improvements. He had a range of 15 degrees active stretch when we first started and then he was at 43 (45 is perfect) when we dropped down to once a month check-ups. He also had (still has some) facial asymmetry but that has improved a lot as well. We had him examined by a cranio-facial team at the children’s hospital where he has his PT and they said the asymmetry wasn't enough to warrant a band.

The PT sessions were tough. He screamed through many a session and I was obsessive about continuing the PT at home so that meant even more crying. It was really, really hard to put him through it but it got a lot better and seeing the improvement was a good motivator to keep with it. He also HATED tummy time but it was necessary and he ended up being a tummy sleeper and that actually helped with stretching his neck as well.

We’re back to once a week for the next few weeks because as he’s working on walking it seems to be making the tilt reappear? I will say that PT is a lot easier to do with a baby that just lays there than on a ten month old who can fight you and move away. We do more positioning and playing to use his right side and look up and to the right than major stretching now. I honestly can’t believe how quickly the time has gone by and how far he has come.

[Annie]

There is a "Kids Health" and also an "Allergy" board on the Kellymom.com Forums

http://forum.kellymom.net/index.php

[Rhonda (twinsanity)]

For anyone experiencing or having been through Twin to Twin Transfusion Syndrome, the TTTS Foundation has a great website and discussion forums for pregnancy, issues after delivery, NICU, and loss of one or both twins.
Website:
http://www.tttsfoundation.org/
Forums:
http://theofficialtwintotwintransfusionsyndromemessageboard.yuku.com/

The Fetal Hope Foundation also has a website/forums for fetal conditions (Acardiac Twin, Amniotic Band Syndrome, Interuterine Growth Restriction, Lower Urinary Tract Obstruction, TTTS, and others) during pregnancy, post delivery, NICU, special needs, and bereavement.

Website:
http://www.fetalhope.org/
Forums:
http://fetalhopeforum.yuku.com/

[Kathy]

For preemies, there are several great Yahoo! groups. preemie-l is for young ones, preemie-child for the school-age former preemie, another for moms who are pregnant or considering getting pregnant again after having a preemie ('cause it's too controversial and painful a subject for the main boards), a postpartum depression group... I've even found groups on there for my mom's very rare autoimmune disease.

The quality of groups varies greatly by the helpfulness and involvement of the members, and having great moderators is crucial. But so far, I've had wonderful experiences!

[meghan]

I had a blog about our rare health situation in hopes that other families in the same boat would find us. They didn't, specifically, but I did round up a bunch of sympathetic friends/commenters who I got a lot of support from. It's so isolating to have health concerns and no community to turn to. I look forward to the boards, Moxie :)

[greatkid]

hi. two things - 2 friends have had babies with torticollis, and both benefited greatly from cranial sacral therapy. one of them was even able to forego physical therapy. please look into it, as it can be a really gentle and affordable way to treat so many things - IME... also, i have a daughter with some special needs, and i've found the "special needs parenting" forum at mothering magazine's website very helpful. everyone tends to be kind, supportive, non-judgmental, and full of good info. good luck!

[marci]

i didn't like preemie-l. it's not in a message board format, and i found it extremely confusing and hard to navigate. so i never found a parenting board 'home'. 'parent hacks' for preemies or special needs or medical issues, etc would be a great blog! nice to learn that keeping ostomy bags in your waistband while you prep the site makes them warm & helps them adhere better or you need to give prevacid into a g-tube with *lots* of water the easy way instead of by having bags come off before you get diapers fastened or clogging your g-tube...

[amy]

i love how the word hedra uses to describe what is good about momswearingpuke.com is "solid." jus' sayin'.

i would probably benefit from spending time on a message board or two, but i've always found the notion daunting. plus, with the handful of yahoo groups i belong to, i had to join it before i could see any messages, so there was no way to preview what i was getting into. that makes it really hard to shop for a good fit. the suggestions here are helpful to that end.

[Awesome Mom]

I have relied a lot on Yahoo groups for different aspects of my son's medical issues. Sometimes there can be some drama, but for the most part most people are supportive.

[Simone]

Well, the site itself isn't my absolute favorite, but it's a great way to find and connect with other moms:
mamasource.com

The upside is they're community-based, so responses are local. And, you can compartmentalize questions and searches by medical.

Good luck!!

[Shannon]

I am severely annoyed by the depression-related message boards. I just don't fit in with people who say things like {{hugs}}. I know they mean well, but to me it's a bit of an empty gesture. I started my own called Regular People Battling Depression on Yahoo. So far nobody has joined, so if you want to, please do!

http://groups.yahoo.com/group/regularpeoplebattlingdepression

Sorry if this is a threadjack. (I wrote this message once before and they said it was spam.) Maybe there could be some Ask Moxie Yahoo groups for specific topics? In the interim while we wait for actual Moxie message boards?

[Summer]

I really liked yahoo groups when I found it. It was the only place I could find a support system for women with a unicornuate uterus, and it seems to be the place to look if you're having problems finding a group elsewhere. I don't recommend signing up for an email every time the thread is updated though-- the first day I checked my email after joining I had something like 200 new emails!

[B's Mom]

I have to admit that I worry about the validity of websites. I think it is really important to separate support vs information. I am all for support groups as some people do not "fit" into live people groups and the internet has allowed us to access support whenever we need it. If it is for information, I would stay away from non-accredited sites, try to keep to national organizations and just be aware that information over the internet is NEVER case specific, it cannot take the place of professional assessment and intervention. If I had a dime for the number of times someone has said to me, 'but I read it on the internet....' I would be rich. I also am wary of the fact that the internet can breed fear, picture yourself around 2:00am completely stressed because of something you read, instead of asking a professional who is qualified to refer you to someone. However, nothing is as comforting as another mother out there who has walked a similar walk you are walking and that support is worth its weight.

[boofyq]

I totally agree with greatkid -- craniosacral therapy is AWESOME for torticollis, and is really well tolerated by the baby. One of my twins (BabyA) had congenital torticollis -- we noticed the head tilt (to the right) when she was strapped into her car seat after our ride home for the hospital. I never would have thought a thing about it (except "floppy newborn neck") if I hadn't heard mention of the term "torticollis" at the local twins club meeting I had attended before the girls were even born. The same mom who mentioned it also said she got a referral to Easter Seals for OT.

So, at the girls' 2-week checkup, I mentioned it to the pedi, who said "Keep an eye on it, and if you still notice it in a month or two, let me know." I did, and I did, and she referred me to Easter Seals. In our state, at least, ES offers treatment to kiddos for a whole variety of issues, in your home and at no cost to the family. Our OT has been spectacular. For the first 9 months, she came to our house once a week and did CST. The changes were dramatic and quick. She also has helped BabyA even out the rest of her muscles, for reaching, sitting, pulling up, standing, etc. You'd never know she ever had an issue now. Even her head shape has rounded right out. She does have one ear that sticks out a bit, but it's part of her and is adorable just like the rest of her.

So, I highly recommend Easter Seals for early intervention, and ask if they have a PT/OT who does craniosacral therapy. WAY gentler and highly effective than forced stretching, etc.

[boofyq]

PS, I forgot to finish my thought. After 9 months, my girls started daycare, so now our OT meets us there to work with BabyA. She sees a couple of other kids there too.

Torticollis can result in more than just a neck tilt -- it can affect how babies learn to sit, crawl and stand, so EI is really helpful.

[Danielle]

Thanks, Moxie, for posting my question. I really appreciate everyone's input. I have found the Mothering boards to be the best of the lot but beyond that I have not seen anything else even remotely helpful. My son has been diagnosed as "failure to thrive" but we call it "failure to eat" because the real problem is that he does not eat. (He is thriving in every other way.) He also has an atrial septal heart defect that will be repaired soon.

All the best to everyone

[hedra]

Easter Seals can be brought in through Early Intervention programs in the US, too. M had PT with additional gait therapy (through E.S.) for a leg bent by her position in utero (not at the joint, but in the bone, with rotation to boot... but they said she'll probably make a great runner later, since toeing in increases speed).

@B's Mom, one of the things I like about POFAK is that they are both an information site (non-profit org) and a support group, at the same time. It's hard to find that kind of dual function and have it be worthwhile on both sides. (hypermobility.org is more loosely affiliated with one of the world's best hypermobility clinics, but the connection is definitely, um, loose. There I go with the 'too appropriate term' again...). It's rare to find both together, and the best of them basically tell you that you MUST see a professional in order to get effective treatment.

Unfortunately for Fructose Malabsorbers, despite a clinical test and 10 years of research results (4 years or so of reliable diagnoses at an increasing rate), there are still tons of doctors at major medical centers that say things like, "I don't believe in fructose malabsorption"... so finding a doctor who knows anything about it is unusual (even our GI, who knew about it and was willing to diagnose it, still just said, 'you'll have to figure out what he can and can't eat and how much and in what combinations on your own, we don't know anything about that, call us if you need us, bye.' Thaaanks. But at least *they* didn't treat me like I was either a liar or was angling for HGH treatment for B, just so he could be tall. (grrrrrrr.)) Even reputable sites for Fruct Mal keep changing their content, putting things up, pulling them down again, and most of them disagree about what can and can't be eaten. Support groups are the only recourse, at that point. Mutter, grump. Sorry, I think I'm done ranting now.

[hedra]

@danielle, feel free to email me (contact is on my blog), G had 'acquired dysphagia' (which was really a 'failure to eat' with declining eating over time, not quite what it sounds like). I don't know that I can help at all, but I'm willing to try (I presume you've already been to a feeding clinic, ruled out silent reflux, food allergies, sensory issues, etc... and actually POFAK.org might be a good place to poke around, since SO MANY of the kids there end up with major food 'refusal' and a loss of comprehension of appetite or intrinsic reward for eating - Just the reflux plus a layer of other minor unpleasant experiences around food/feeding left G with NO sensation of hunger. Period, didn't feel it. No puking, not super fussy, just an active sleeper with a tendency to snore and overheat at night...) Um, anyway, if you want to compare notes, let me know.

[Anna]

Medlineplus is all information rather than message boards, but the info is excellent. It's co-run by NIH and collects info from different medical associations and groups. You can search it by symptoms or specific conditions. For example, 'torticollis' connects to info about different forms of dystonia from the National Library of Medicine, the Mayo Foundation, and the Dystonia Medical Research Foundation, among others - all in easy to read patient-friendly language. The URL is medlineplus.gov

[becky]

Our little guy was diagnosed with torticollis just before we left the hospital with him. Yes, the therapy sucked. I cried when I did it. But it worked, and at 8 1/2 months I don't notice anything and he can tilt his head to either side.

It will suck, but please do whatever physical therapy they recommend. It's worth it.

[auburn]

For Erin -

Since your son has Tortocollis I'm hoping that what your son has is actually plagiocephaly, not Cranio-facial dysostosis which, I think and I could be wrong here, is an older term used to describe what is now called Craniosynostosis. Craniosynostosis is a premature fusion of the skull sutures which can lead to skull deformity and can be easily confused with Positional Plagiocephaly which is a far more benign skull deformation. Both are very treatable so that is good news. Not sure if you have been reffered to a Cranio-facial plastic surgeon or neurosurgeon for your diagnosis, but you should be. A pediatrician can't make this diagnosis, since most of them don't see it enough to make the differential diagnosis between the two. Also, x-rays are often unreliable to diagnosis this, especially in such a young baby. What you really need is a 3D CT scan. And if they are suspecting a syndrome as a cause, you should request to be seen at a craniofacial center at a large hospital, or even better, a children's hospital so you can see a geneticist, neurosurgeon and craniofacial surgeon who work as a team.

Anyway, post over on the forums this site:
www.craniokids.org

They are a very nice and helpful bunch and you will get lots of information and support there. Post pictures if you have them and the parents with experience in this should hopefully be able to give you an idea of what you are dealing with. Also, feel free to email me. I went through this diagnosis process with my son who thankfully, after CT scans and several surgical consults was diagnosed with Plagiocephaly caused by in-utero molding and was treated with helmet therapy instead of surgery.

Oh, and sorry to overload you with information, but I would push for a consult sooner rather than later. There are endoscopic surgical techniques to treat Craniosynostosis which are only available up to 6 months! So don't let them keep you waiting too long. The surgery which is available after 6 months is a bit more involved and the recovery time is longer.

Good luck. And enjoy your baby. I'm sorry you have to stress about this at such a joyous time.

[AmericanFamily]

You first questioner should check out this website and support group for parents of kids with craniofacial issues, they may be able to point her in the right direction:

http://www.cappskids.org/cranioinformation.htm

[pixie]

Heya Moxy, I don't know who you use for web hosting, but I use dreamhost.com and there plans are cheap with loads of bandwidth and the longer you stay a customer the more bandwidth you get without having to pay more. I have a podcast, blog and PDF downloads and I never have even come close to going over transfer amounts.

Also dreamhost has 1 click installs for word press blogs as well as very nice message forums. (made by phpBB whom I adore and is one of the best free message board systems around).

Just my recommendation, I am in the web industry. I could even host the forums for you for free, but it wouldn't be at a askmoxie.org URL as my server is different then yours.

[pixie]

shoot, moxie not moxy duh

[peaceinyourcrib]

i just want to acknowledge what wonderful and smart women these 2 writers are.
you have been given a precious early life circumstance that clearly both of you can handle with love and wisdom.
keep up the good, exhausting, invaluable work!
thanks for encouraging me this morning...

[erin]

Thank you all so much!
Let me go ahead and say sorry if this post isn't exactly perfect - nursing and typing with one hand isn't exactly the best but i'm sure ya'll understand.
Like i was saying- thank ya'll!
I've gotten a lot of good information so i atleast know what all i should be asking!
We have a doctor's appt. this afternoon (finally!) to go over everything, before today all i've had is a phone call and a print out of the report, his doctor doesn't seem too overly concerned, then again i'm not sure how many people she's giving a maybe craniofacial diagnosis to. we're a small town, we don't even have a craniofacial specialist here i'm going have to drive up to atlanta for that. so i'm real freaked out about the cranoifacial diagnosis, maybe we'll go today and hear some good news.
the torticollis i feel slightly better about. especially hearing how easily fixed it is. we're about to go to therapy now. the p.t., that he hates and has brought me to tears with him. the good news there is i'm waiting for my insurance to go through for me to switch to this amazing pediatric p.t. that he actually likes and manages to make it through therapy with a few smiles and even some giggles.
thank ya'll for being so encouraging!

[Cathy]

@Danielle - my nephew was born with ASD and VSD that required surgery to fix at 3 months old. Before that he really wasn't thriving that much - it was a lot like having a little baby living with congestive heart failure (to me, an untrained observer) and he was taking a lot of "old people medicine". He was a screamer and he spat up almost as much as he "ate". It was kind of amazing (a)how quickly he recovered from the heart surgery and (b)how much better he felt and how quickly. He went from being unhappy all the time to it only hurt when he had to burp (recovering from open heart surgery).

I'm happy to report that at age 2 1/2 he is a little monkey - as he should be. I think he still tends to be on the small side for his age - he might have made it to the 10th percentile, but he was hovering at around the 2nd percentile for a long time.

[hedra]

hey pixie, does dreamhost allow you to make money directly off your site (like the donate button, amazon associates, etc.)? There's nothing on their site about it that I can see... just their own promotional methods.

[songbird]

for forum hosting software, I recommend fruitshow. No login required and you can have volunteers from the community moderate. I believe it's written with PHP and MySQL and should work on just about any platform of host.

[Andrea2]

@ Danielle:

www.infantrefluxdisease.com has GREAT message boards - its not all just reflux stuff, but if your child is FTT and doesnt eat or has dysphagia, there are some great resources there and lots of info about other issues.

[chaser]

I am late commenting, but in any case: Both my kids had torticollis (is it something about my uterus?). We treated with PT, starting (the first time around) with the therapist who worked in our ped's office - and it was torture - DS took to screaming as soon as he even saw her. Heartbreaking. Then we switched to the county-provided therapist for special needs kids, who came to our house for free, and she was so sorry that the PT so far had been so miserable. She promised me that there would be no more crying, that all the therapy would be with my son's active participation rather than forced stretches, and explained her position that a scared and angry baby actually is working against the therapy because of the physical resistance. My son adored her and considered the therapy to be delightful playtime - and it was completely effective. With my second son, we used a different therapist from the same program, and that was an equally delightful experience.

So what I'm saying is, you might try a different therapist.

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[mabsLayesefus]

I found this site on the internet and felt I had to share it with you all.
It doesn't matter what you are interested in, it doesn't matter what you do
for your day job, in these tough times a little extra is always appreciated.

I spoke with the owner of the site last night and he asked me to pass the
word that their doors will close once the site is up and running. People are
starting to sign up in droves because you will immediately see this is THE
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to know about. You might have heard phrases like this before so all I can
say is, check it out quickly before it is closed for good.

I signed up at http://www.theaffiliatepalace.com and they are showing me how
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believe me check out their page, they will give you one of their methods
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They teach 5 new methods every month and they also have everything you need
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If you are feeling brave, I will see you there.
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Thanks for listening and sorry for the interuption.

All the best

[suBrossyForse]

Free Rapidshare account and to earn money
Yes People this really works
I have my own 1 year Rapidshare Premium account

MY PAYMENT DETAIL:

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Go to https://www.paypal.com/ and sign up
Create a paypal premier account (this is for free)

When asked to give credit card details click on CANCEL

2)
Now,
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The more you click the more you earn.

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You make money by simply visiting websites for at least 30 seconds/visit. We will pay you $0.01 for each website you visit and $0.01 for each website your referrals visit. The best part is you can have an unlimited amount of referrals! To keep AdBux from getting top-heavy you will only earn money from those that you directly refer. This gives everyone who participates in the program a fair advantage to earn the most amount of money because you have the potential to earn more than your sponsor! Payments are issued via PayPal on a daily basis but you must request for a payment to be processed. Once requested, your payment will be issued within 24-48 hours (usually sooner). You must earn at least $10 to receive payment.

3)
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4)
You could even use this money for other online shopping on e-bay or on any other sites.

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Please be patient

[gennickmchi]

Hi,
I'm new to the forum and just saying hello.

[Crystal]

Hi, I'm new here