Update On Hailey

Poor Hailey has had quite a few diagnoses come through in the last year. I would be lying if I didn't say I feel a little overwhelmed by all of it. She's really only gone through one other issue and that was the torticollis/plagiocephaly when she was an infant. That was easy because the two issues were connected, had a simple explanation (traumatic birth), and required a simple fix (daily stretches). She was close to needing a helmet but we didn't get to that stage and even though the doctor was a little concerned because she felt Hailey's features were starting to slightly distort, once we fixed the torticollis, the plagiocephaly cleared right up with no lasting problems. Although the first three are linked, these new diagnoses are not going to be as simple.

Her first diagnosis came this spring: severe eczema. The issue with this problem is that there can be a multitude of issues that cause this condition, or it can be nothing. That means that investigating the issue, while possibly worthy, could also leave us empty-handed. The treatment includes topical steroids and oral anti-itch medicine, which I am not fond of but she is so miserable that we do it anyway. She can grow out of this condition. Most kids grow out of it by 5-7.

While investigating, we started with the possibility that made the most sense: environmental allergies. This made the most sense because her eczema seemed to come and go with the seasons last year. When eczema is usually at its worst (winter), it was completely healed. The second that the pollen count went up, it started again. The allergist did indeed give us the second diagnosis: environmental allergies. We found her to be allergic to pollen, dust, ragweed, some trees, some grasses, cats, and dogs. We don't have pets and I try to keep the dust to a minimum. She obviously can't stop breathing so that was the extent of what we could do. Any reasonable suggestion I found, we tried. This is not a condition she will grow out of and in fact the allergist said this gave her a 50% chance of growing into asthma. Regardless, it seemed linked to the eczema, and we spent all summer in a losing battle against the eczema.

We were referred to a pediatric dermatologist at this point. The dermatologist asked for a food allergy testing because she said kids this young rarely have environmental allergies, and if she has those, she probably also has food allergies. Since the allergist had been pushing for it anyway, we finally conceded to the food allergy testing. We did the testing and walked away with her third diagnosis for the year: food allergies. The test showed soy, bananas, green beans, carrots, cucumbers, mustard, scallops, oysters, and clams. Now we had something that we could eliminate. We eliminated everything except soy with no issues but continue to struggle to eliminate the soy completely because it is in EVERYTHING. Seriously, soy farmers can not be hurting. Anyway, she should most likely outgrow these food allergies (with the possible exception of the shellfish, although she has never had any of those) and elimination is the only way to treat them. The (mostly complete) elimination seems to have helped, but the environmental allergies died off too so who knows which caused the decrease in eczema flares but I am happy to be using less prescription medication at the moment. It continues to be an ongoing battle but the more we learn, the more we can hopefully help.

Her last diagnosis came today: mild childhood apraxia of speech. She has been having some speech issues pretty much since she started talking, but she was always so borderline, it was difficult to determine if she needed help or not. It always felt like something that could go either way - either it could get worse or it could get significantly better and she would catch up. Well, we finally decided to have her tested and as you read before, they did find her slightly delayed. Today, during her second speech therapy session, the therapist and I were talking after Hailey was really struggling to put together two words when the first word had two syllables. The therapist said for the second time that she really feels it is a motor sync issue - her mouth and her brain aren't syncing up. She said there is a test she can do to be sure, but she thinks that it is most likely childhood apraxia of speech. The good news about this is that Hailey has a mild to mild-moderate case, this particular issue does not lead to later issues, and this issue is solvable with practice. In other words, Hailey is perfectly capable of saying the words, she just has to work harder to practice her words so she knows them well enough to call them up without a glitch between her brain and mouth. This glitch is causing her to drop the end consonants and to struggle putting correct sentences together because it is easier to just drop when that information isn't right there. The bad news is that kids with this issue aren't like other speech therapy kids - they don't just learn a sound and then can repeat it from there on out. She may master the "sh" sound in one word and still not be able to use it in another word. There is a chance that we will have to work with her individually on many, many words. The other bad news is that the therapist basically said there is no way she will qualify for speech therapy through the school in 3 months. She is not nearly delayed enough and kids who are much more delayed than she is don't qualify because the school only cares about school issues. If she can communicate, even if it is hard to understand, she won't make it. She did say that private therapy is available and she could give us a recommendation if Hailey doesn't catch up by her third birthday. She also said that she had put through the work order to switch Hailey to weekly therapy, which hopefully gets approved and goes through sooner rather than later.

I am thankful for all the doctors and therapists who put in all the time to help come up with all these diagnoses, even if they do feel daunting at the moment. Now that we know what we are dealing with, we can formulate a plan and hopefully help our baby girl. My Christmas wish is that by this time next year, she is speaking clearly and her eczema is under control. Here's hoping!