Mobility/Pain?????

[laurie]

Kristen, I'm not really sure what to say here, but take this for what it's worth.......

Hunter has complained at times over "aches" in his legs, but never actual pain that would cause a limp. Prior to Hunter's birth I worked in a daycare for 9 years. I had two differently kids in my class (toddlers) that ended up acting funny.

With one it was his arm, with the other it was his leg. These two kids experienced this about a month apart. Their parents took them to the doctor and each child ended up having to have surgery. What happened was an infection had settled in a joint and had gone un-noticed. I'm saying this to cause any alarm, from what we found out it's not something that happens very often, but it does happen.

If Coley continues to favor a leg I would consider at least calling the doctor to see what it could be.........hopefully just a pulled muscle or something. Like I said Hunter has complained of "aches" but not pains, so I just assume that what he is talking about is more like a cramp.

The doctors all seem to think we're nuts anyways, so if you continue to feel uncomfortable in how Coley is acting I would take him in.........wouldn't hurt. This adds yet another common thing to the chart of "Is this related to the fructose issues"...like we needed another one...........haha

Hugs, Laurie

[Tammy]

I'm not any help here, Kristen.
Regina has mobility problems, but hers are more a lack of balance, and neuro problems than a muscle/bone problem. No problems in that area. When she has a bad reaction she hurts all over but, I think, it's more like a bad flu hurt and ache.

Are you thinking along the lines of it "settling" in the hip &/or leg, kind of like gout settles in the toe? Not something I've ever heard of, but I guess certainly possible.

[Chelsea]

Sorry for the delay Kristen, I had typed out a big long note the other day and it got eaten. So I am back, trying to catch up.

Gillianne's pain issues, IMO are completely unrelated to fructose ingestion or tolerance. We did have to rule out gout, as it could always be a factor with HFI. The only other causal relationship is that some children with metabolic disorders have hyper-flexibility issues, which Gillianne has. Children with hyper-flexibility can easily injure joints. We have spent much time in physical therapy to increase her muscle strength in general but mainly around the joints to prevent such injury.

My main reason for believing there is no relationship (in our case) is Gillianne's pain is always worse upon waking. This is clearly more arthritis in nature. I also have a inflammatory type of arthritis to which there is always that genetic component again.

I also have to say, having my boys, both healthy and symptom free (one is actually a half brother) I have also learned to accept pain as a natural part of growing. My oldest suffers growth pains frequently. Aiden my 3.5 year old also just recovered from viral meningitis, which I can tell you definitely gives some aches and pain and decreased mobility. So it definitely can be associated with normal illness in our not so normal children.

HOWEVER, I have learned that with HFI nobody ever knows, not me, not you, not even the Dr's. So the more we talk to each other and to them, we document and write our own cases, they learn, we learn and someday, maybe we will have answers.