The HMSA recommended the consultant who my kids are under but he missed hypermobility in my daughter who he was already seeing, and was reluctant to diagnose it in my son. They also recommended the physio we saw today. Another parent here recommended them, but we aren't having a good experience.
I'm a paeds Physio and suffer with hyper mobility myself but Sorry I'm down south so can't be more help!
Thanks anyway. My eldest sees a sports physio sometimes who has been helpful with keeping my daughter mobile when she suffers with her knees, but doesn't understand the hypermobility and we want to see someone who does. She saw my son but wasn't able to really help. I have tried contacting a few private physio places who deal with young children and seem more suitable, but no luck as they don't have anyone in the area. I did email one place but not happy that they wont be up front about costs, and I think they mainly specialise in physio following treatment for cerebral palsy.My son needs something young and special needs and my teenager needs someone who knows about sports but also about hypermobility and chronic pain.
Xxxxxxx Yzzzzzz, you can make dietary changes and stay on the meds, they are not mutually exclusive. If you take supplements you just have to sure that there are no drug interactions. Perhaps over time you'll start to feel better and can then reduce some of the prescription meds. Just a thought ... not a recommendation. It's important that you weigh the options and make your own decision.
Thanks Patricia, I think that will be my over all goal, the less meds, the better as like you say they all bring other issues. I hoping a LBA and allergy test may help with dietary needs too, just need the £££££ to do them. Though I will ask about them a my next Sarcoid Clinic appointment.
My son has just been diagnosed severe dyspraxia aswell as his severe hypermobility the features of the syndrome and he's also bad hypotonia floppy body . he's deffo adhd going by his ed physcholagist report but they reluctant to assess yet as he's not 6 he will be tho in 2 weeks time and we are asking for refferal . he's also sensory and ot will be doing a sensory assessment .she's also asked why hasn't he been assessed for asperges and asd as he's very clear signs when they did a home visit .but because he's severe dyspraxia some of it over laps with the asd so pied is not helping one bit but with ot input now they are taking their findings bk to his pied to tell her to assess him as what they have seen are clear signs . ot have diagnosed my little girl 28 months with spd she's the tactile side so going out ect is very traumatic for her especially new places is the worst familiar places like house and nursery is fine .she's going to be having input of a sensory diet now the swing therapies and the brushing therapy .keep pushing hun parents instinct knows best if your not getting luck ask for a second opinion that's what we will be doing if my son's pied don't buck her ideas up to what we and other professionals are seeing x
I will have a look at it kim thank you
Have sent you a PM Stacy, my non HMS daughter has suspected Aspergers/Autism.
Yes Huda apparently it is the cure ;)
A giggle in this vein: https://www.youtube.com/watch?v=m4ONcxkBlPQ
Some types there are genetic testing for I think liked the vascular and clasical type xx
Alana is right they can genetically test for most types except type 3/HM type so they may test to rule out other types. Type 3 is done by clinical observation, medical history and family history
my son was dx with hms when he was 3 but at age 5 got re classified at eds 3 hes now 10 x
We are in NZ, and our Rheumatologist said she approaches JIA conservatively and does not go in all guns/drugs blazing. She has no firm diagnosis for my son because he is not text book child and she refuses to diagnose a child with a chronic illness until absolutely certain it is chronic. Her clinic is based 5 hours drive away, we are extremely limited with options - I believe there are 3 pediatric rheumatologists in NZ. We last saw her in December and she was very very confident we would never need to see her again, (and I was very very hopeful we wouldn't see her too!!)
my middle boy has JIA and we dont go in guns/drugs blazing with meds on him either (Florida residents)... we treat pain as needed and hes on meds to control the progression of FMF but thankfully his doesnt affect his joints as much as it does internal inflammation (And making his blood wonky). Our rheum has been wonderful with working with us and keeping in mind we would prefer to treat with as little meds as possible.We have a completely healthy diet (little preservatives, dyes, no fast food and minimal sweets) no vaccines and keep him as active as he can handle and its done WONDERS for him... everyone is different but its whats worked very well for him. He has a pretty "normal" life outside of chronic disease. He was diagnosed at 18mos and is now 9yo.
Omg. I'd ask her to reread about jia.
Will be asking her when I see her nxt will get him to gp then for refferal .don't fancy more fights on my hand .I just hope she listens to ot and physio who now has taken him on for lots of diffrent things including rebound therapy due to his floppy body as it is pretty bad x
I think thats the problem we had AnnMarie. Harmony even saw the visual impairment/autism team at GOSH and they diagnosed ADHD but not the autism. it was already a second opinion, so i never thought she would get a diagnosis now. But I kept asking around and someone told me that a psychologist at out local camhs is good at assessing girls. We had to get referred to her for the ADHD but told her we suspected autism and she agreed. In her previous job she had worked with kids suffering due to medical conditions and had worked with visually impaired children, so felt she could say that Harmony presented with autism compared to other visually impaired kids with 'problems'.
Lynsey Scott Was Western There is a big difference between autism and visual difficulties. Maybe professionals are confused/conflicted when they're little but it's pretty damn obvious as they get older. Having a visual impairment does not stop them socialising with other children or affect communication or ability to adjust to the world around them. Going to the park for example even those with a sight problem will go on the slide/swings might be a little slower more cautious but they can still do it. He had absolutely no concept of what he was supposed to do at a park once we were there. Dominic was monitored by the same three people for 7 years but it was me who had to bring up autism. He was then diagnosed with autism. At 10 he had no friends, couldn't understand jokes, sarcasm either and his facial expressions never matched the situation. Had a very exaggerated smile that had no correlation to how he was feeling when he did it, talked about games interests none stop but couldn't actually have a conversation at all. His understanding is just not there either (has absolutely no concept that he has any difficulties/disabilities despite being in and out of hospital his whole life). So can't understand why he has to go to hospital for this or that test. My nephew took home one of his toys years ago and lost it and Dom couldn't even be in the same house as him because Alex would take his things pretty extreme response. It's taken years and I replaced the toy he lost and said it was from Alex and he was sorry for losing it and now they can actually be in the same room but it took years. I think the reason his SPD is so bad is because all his other senses over compensate for his poor vision. xxxx
They sure don't, Sonja. What kind of forms are they ?
You just need to read the conditions to see if you qualify, I live in the country so I get it.
Thanks, Sonja. Unfortunately I can't get it.
That's disgusting !
We had the same issue with Westmead. We did see them initially but we're refused future appointments because we don't live in the area. We were told to go back to Canberra genetics who also refused to see us again (even though the NSW government pays them to service queanbeyan!) and were sent to Goulburn. So we could be traveling 20 minutes each way for appointments instead of over an hour to Goulburn. The whole system sucks. Why do some get to go to a specialised clinic and other don't?
I had exactly the same with westmead. My gp contacted them then sent a referral early December. I got a letter end of January saying they won't take me cause I'm out of area ( central coast) and I need to go to royal North shore. Went back to the dr got new referral waited another 4 weeks. Dr rings and they say the don't have the referral so he sent it again. I since have had a call from genetics department with a zillion questions and now they have put me on the 'long' (can't tell me how long) waiting list and requested another referral with all my 4 kids listed as well. I doubt I'll get seen this year.
Find a children's hospital. They usually have every specialty!
We have a 2nd opinion in the works and our Rheum is starting soph on embrel next week. Thanks everyone..
So sorry to hijack your post anie but is a subluxation where the joint is partially dislocated or collapsed? My son's (he is two and a half) foot looks like it has collapsed to the side and this causes him real instability (and we think possibly pain to his back and groin although he has leg length discrepancy which may also be the cause of pain) we have only been seen by a podiatrist and given in soles and this has taken ages. We are very worried about what permanent damage this may be causing or what the future holds. Our reumy thinks it is soft tissue damage but podiatrist says it should be x rayed. Does it sound like subluxation?
Good luck with your second opinion x
I have tried both, and I get more relief from the ice packs, when I rest I place one behind my lower back and one on my knee and sometimes one around my neck.
Cool thanks Jayne Roffee- Stoll
When I finish work I will check it out
I use a back wet heat around the neck, it is vey good, I use it at bedtime
No I am not. This doesn't require that, because it's vials. That's what I was told. Why do you ask?
I am picturing the kind of single use glass ampule you break to open. Small glass shards getting drawn up would not be wanted so they make filtered needles for that.
The venom comes in vials, so that isn't an issue. The lido was like that, and they are taking it back. I'll ask about compounds tomorrow. I wonder if my compounder out of state could fill it, or is it controlled (procaine)?
THANK YOU EVERYONE FOR YOUR HEALING PRAYERS... STILL STRUGGLING WITH MY EYES... I AM NOT SUPPOSED TO BEE ON THE COMPUTER... BUT ... I ALLOWED MYSELF A PEEK JUST NOW AND SAW THIS POSTING. SO I AM WRITING JUST TO SAY THANK YOU AND I MISS YOU ALL.....LOVE, AMBER <3 HOPE TO BEE BACK AS SOON AS I CAN.
is she taking the bee venom eye drops? WIshing her well
PRAYING FOR YOU SWEET AMBER !!!
Hilesca T. Hidalgo Cestero, the best source of help on this is renowned parasitologist Dr. Omar Amin of Arizona. In many cases, it is a combination of things that throw your gut and immune system out of whack, as well as your nervous system, skin, and every other part of the body and brain. He has been diagnosing and treating people for decades, and will consult on the phone for a modest fee. You will want to have a functional MD and a biologic dentist on your team, as often part of the problems are coexisting conditions like low-level mercury poisoning, mold toxicity and/or Lyme. He is the leading expert on this, and has developed a protocol to successfully treat it. http://www.parasitetesting.com/morgellons.cfm
Yes I know about him. Neuro cutaneous syndrome seems to fit..
Ty Laura Henze Russell
Rogaine and either a protective style where you don't tug touch pull or wig it up. Give your hair a rest & no ball cap directly on hair cause it pulls strands until you start seeing growth
True the hats i were i guess r considered ball caps and they have done some damage to the new growth
Biotin pills and nioxin shampoo and conditioner has been working for me and I'm on mtx
Xxxxxxx Yzzzzzz the first time I got it I had the terrible stomach pains and it sucked..I would not wish HSP on anyone especially a child..feel for you and your son..
The stomach stuff is bad! Have u tried Mayo? Just curious,..,my Dr has mentioned it as possible option when I have flare ups curious if u had info on it?
Xxxxxxx Yzzzzzz my last flare up I felt worse than usual..I have a friend who is a Dr at Mayo and told him I had hsp. I was going to go but found out that one..needed to go to the dentist and two the eye Dr..found out my prescription changed and at the dentist found out that my teeth situation too was causing my headaches.not feeling good and so on...it's been about a month since my last flare up and I feel better..going to change my lifestyle and a few other things and go from there. I have not ruled out going to the Mayo but not sure what they can tell a person that they don't already know..the Dr mentioned there was Ashima Makol that my friend says knows a lot bout HSP..my hope is that my hsp will subside..I would like to get some feedback of someone who has been to the Mayo for this...
Our kids are toxic d/t chemical contamination & therefore malnourished. We cannot get all we need in our US food supply & 40 years of synthetic vitamins. Consider natural antiinflams & topicals as needed & also this former veterinarian turned MD has good ideas. Please consider http://angiea.my90forlife.com
Xxxxxxx Yzzzzzz....we did a food sensitivity test and she stays away from wheat, oats, and gluten
Agree, time between tests and results suck. :-( Positive thoughts coming your way.
Wishing for the best
Thanks! Results in hand. Now, gotta fight insurance to get to the specialist who worked on her foot. No clear findings other than edema from a possible stress reaction. Makes no sense. Fingers crossed that we can get to the specialist and get a plan of action.