Dear Plebotomists and nurses….

We had labs drawn today. Every time we do I see a problem that is facing most of us with older children who might be either on the spectrum, developmentally delayed or have sensory issues that interfere with their response to medical and dental treatment. (trust me, sensory kids are terrible when it comes to dental or medical things and you can’t really blame the. They feel everything a hundreds times more than we do)

For my child blood work is rough. It elicits nightmares days before it is going to be done. Unfortunately this all comes from a bad experience in a hospital ER when my son was young. I’ve been told by some lab techs that they hear this story all too often and it doesn’t have to happen with the right training to work with children. I agree because it’s left him with a life long fear of needles.

I do tell each tech ahead of time that my son has anxiety with blood draws. Sometimes they listen to me and sometimes like the least time, they say stupid things like “you’re a big boy, there isn’t any need for this” while my child is hyperventilating. Then I must step in and talk to him and calm him down.  Anxiety is anxiety folks regardless of how “big” one is, otherwise adults wouldn’t get it. Once you have been traumatized by something….fear is a normal expectation.

So what I wish to convey to those in the this field or the medical community is not to judge what a person can handle based on their size or age. Don’t assume. I’m there with him for a good reason during this process. He might look like he’s nearly an adult, but that doesn’t mean he doesn’t have a valid terrifying fear about the experience.

Thankfully, I can get him through blood draws but you must let me do that because I know him better than you do. I know what works. I  talk to him and distract him with an in-depth conversation about something he has an interest in. Distraction is your friend on this one!

What does help:

  • Distractions! Please talk about anything but needles and blood work
  • Make it a point NOT to show him all tubes and the needle unless he asks
  • Please go step by step verbally and tell him what you are doing before you do it and leave out terror words like “poke”, “stab”, “pain”
  • Keep the tourniquet on the LEAST amount of time you have too, this is a very disturbing pain sensation for sensory kids. He says it’s worse than the needle stick.
  • Use a butterfly needle, it hurts less because it’s not moving around when you change tubes.
  • Please don’t assume or judge when a 14-year-old (or older) needs mom in the room. Trust me, you want me there. I know how to calm him down.

None of our jobs are easy and it is hard for medical personnel to know our kids have these issues when they might otherwise look “OK” until they are in the blood draw chair.  Labs could help by keeping their ped specialized techs in the same locations instead of rotating techs. A trust of sorts get build when you have the same lab tech each time. You know what to expect!

We’ve had some great and very patient labs techs, but we don’t always get the same one. This time was not the best experience for him because he had a different tech and she put the tourniquet on and then says “I’ll be right back” and runs out of the room. Then I’m left with a panicking child that is losing control because it’s hurting a LOT.  Then he’s all worked up and we haven’t even done the puncture yet or collected the blood.

Food Allergy Test Results (updated 4/2017)

We got the allergy testing back yesterday and it’s good and bad all in the same sentence. While there were not high allergies to lots of foods which would imply leaky gut, there is a significant allergy to eggs. I can’t say I’m surprised really because egg allergies are fairly common and often missed.

He is also allergic to spelt, gluten and wheat which I sort of already figured out based on his symptoms when he ate it, and when he didn’t eat it. He is slightly sensitive to whey also. He does not drink milk but milk is added to many products.

So basically we will avoid whey/milk for 3 months, gluten/wheat/spelt for 6 months and eggs for 9 months. Time will tell if the egg allergy is related to the sensory problem which is what is suspected.  Eggs are the one food we have not removed from his diet in the past. The common consensus online is gluten and dairy are related to problems for children on the spectrum. However, it can be any food really and it’s often very hard to guess without doing some sort of testing.

I found this applies to NT children also. My NT adult child had a lot of skin issues that were not resolving on a gluten-free, dairy free diet. It turned out her high allergens were eggs, sorghum and yeast extract. Removing these has actually been very helpful in her case.

Sample Food Allergy Report

Sample Food Allergy Report

So we begin dietary modifications and see what transpires. Removing a high allergen reduces inflammation and stress on the adrenal glands which can lead to improvements in health and functioning. So we will see what happens in the coming months!

** UPDATED INFORMATION: There seems to be a lot of controversy over the validity of ELISA IgG food testing and whether or not it even indicates an intolerance or allergy at all. I wrote a new post about this issue here. In light of this recent information I would not recommend this testing. 

When Sensory affects Hygiene- Part 2

I talked briefly about sensory and some of the issues we have dealt with in relation to personal hygiene. In this post I’m going to share some of the things that have been helpful for us to address these issues.

We have been using a battery-powered electric toothbrush for years. While this is listed as a method to reduce oral sensory, it has not accomplished this in my son but he does prefer this over a regular brush. You want to look for something with a small head because of the gagging issues most of our kids have. In our case we opted for a spin brush which takes some of the hand work out of cleaning the teeth and has a good size handle making it easier to grip. Plus they come in kid-friendly designs.

Most sensory children seem to need help with managing floss because not only               does it feel strange having something forced between the teeth, you need some pretty sophisticated motor skills to operate standard dental tape.  Using hand-held flossers can help reduce the coordination needed to floss. Some sensory children do not like mint so be aware of this when choosing  flavored floss. My son liked the berry better than the mint ones plus the ones that are made for children do not have sharp points on the ends.

The next thing to consider is the fragrance and feel of any soap or  shampoo you want them to use. Is it too strong-smelling, too slimy? Is there something they would like better? What about a shampoo bar instead of liquid? Shampoo bars were used for many years before the invention of liquid shampoo for your hair. They lasted a lot longer and offer much less wasteful packaging than all those plastic shampoo bottles.

You moisten the bar and rub it a few times on a wet hair, then massage to lather and rinse. They are also all natural which is another bonus! I’m all about avoiding chemicals where I can.

Body wash or bar soap? In our case we have tried everything and the only soap solution that has worked is finding an all-in-one liquid product for hair and body. We put this liquid and some water to thin it a bit into a foaming soap dispenser. The foaming soap doesn’t have the same feel for him and he actually likes it. You can find these in most stores for a reasonable price.

Shampooing his own hair is still a huge challenge because it feels so badly to him that he can’t force himself to do it. So we have been washing his hair over the side of the tub. He kneels on a comfortable mat and we place a folded towel on the edge of the tub to rest his head on. I use a shower sprayer to wash/rinse. Some children may prefer a cup of water poured slowly and they will have various preferences on the temperature of water they like. Something that feels great to you might be too hot or cold for them. Have them check with their hand before you put the water on their head. I found it also helps to talk him through what I’m doing and how close to done he is. At one point in time where his sensory was gone he was washing his hair himself in the shower but this didn’t last more than a few days.  So that’s a reminder that sensory can change, some days are better than others.

It’s also important to keep in mind many children do not like to tip their heads back or shut their eyes because they feel like they will fall or they feel dizzy.  Others fear water in the eyes or ears. They feel like they will drown and it causes panic. These are the kids that don’t like swimming or do but won’t get their heads or faces wet. They shout for a towel the moment one splash hits their face. Sometimes it can help to try swim goggles or swim ear plugs for hair or face washing. Some of the sensations of fear that occur from tipping their heads back might be due to retained primitive reflexes. (see Primitive Reflex Integration Therapy) 

Some children will prefer a bath over a shower if the shower water feels uncomfortable to their skin. Some will like a wash cloth, others will not. In our case wash clothes feel like sandpaper and so do shower puffs. I let him use the foaming soap dispenser and his hands to lather up. I have been told that these soft grip soap bars sometimes work for sensory children if you can find them.

It can help to keep their hair short if they are very sensitive about brushing, combing and hair washing. This might not be as feasible for a girl child but it’s worth considering if your child is agreeable to finding a cute hair style she can manage more easily. I do feel the child should have some choice in this decision. I’ve had more than one adult tell me their parents chopped all their hair off when they were young and they were very upset. We did have to look for combs or brushes that are soft and find out which one he preferred. My son prefers combs to brushes. Now that he is older he prefer to have his hair cut short with a shaver at the barber which means very little combing for him. Plus he also complains that when it grows out, it bothers him that it’s touching his forehead or neck.

We have yet to approach the age of shaving so that will be a future post I’m sure but in terms of deodorant when that time comes….we found it helpful to take him to the health food store to look at the selections. Avoid aerosol sprays which can feel cold and wet when first applied and most will not like this. This probably applies to roll-on which is also wet when first applied. Many sensory children do not like the feel of lotion, and thus this won’t be good either.  Look for a fragrance they like or one that is unscented if they are bothered by smells.  We ended up with a clay based deodorant in a woodsy pine that has worked very well. Since he liked the smell he wears it.  We do avoid aluminum containing deodorants because the metals will be absorbed into the body and I don’t want to chelate forever!

In terms of children that dislike toilet paper, mine might be the only one but in case he isn’t, we have been using wet toilet wipes for years. They sell them for adults now and they also have natural product options available. My best tip to you though is instruct your child not to flush more than one at a time, you really would make out better putting them in the bathroom trash unless you don’t mind backed up toilets. Ugh….

These are just some of the things that have helped make hygiene and personal care a bit easier and less traumatic for us. Keep an open mind, think outside the box!

Sensory Affects Hygiene Part 1