Spinning our wheels with developmental delays

I couldn't take my son to his physical therapy appointment today, due to his nonstop crying from teething. He cried all morning long, so I took him out of the house, which helped a little. He cried in the line at the bank, and cried at the dance store while we were getting ballet shoes. On the way to the appointment I knew it was a mistake to try and go. He fell asleep in the car which he never does, and I had to call and cancel the appointment.

The therapist says that the most important thing is the work that we are doing at home, but he only lets us get away with so much. Therapists can always do more with him. He is almost 18 months old, and we feel that we are getting nowhere fast. He can sit in the middle of a room now for a few minutes before toppling over, and that's where we stand. No attempts to crawl or scoot around. He seems way to week to attempt to cruise around on furniture. He will just do a standing position against the couch for about 30 seconds, before bending his knees to sit or fall down. We feel so hopeless at times, which leads to anxiety and depression about his future and ours as a family.

When I take my son to his group/school therapy programs the kids in there are way worse off. Some can crawl, but it is just so depressing, the whole thing. We are happy to have him, and feel that God sent him to us for a reason. We will offer him the best care and love and that's why we feel we have him. That said it is still really depressing and I have to take each day at a time, and not even bother to think about the future yet. It just causes way too much anxiety.

Getting Insurance companies to approve physical therapy for babies

My son's physical therapy was finally approved today after endless phone calls to the insurance company and to the physical therapy office. Documentation, phone calls, and faxes are all necessary to get your child the benefits that are rightfully theirs. Despite prescriptions from doctors, letters of medical necessity and endless documentation, my first insurance company continued to deny physical therapy benefits for my son. They kept saying "developmental delay" isn't a covered benefit. We tried again with "low muscle tone" and "generalized weakness", but without an actual diagnosis every effort was continuously denied. By some miracle, our insurance carrier was switched to a new one. This was initially a nightmare. I had just had my son's MRI approved by the pain in the ass insurance company, and a few days later, they were no longer our insurance company. I had to start all over again with calls to the doctor to start faxing all the required documentation to our new insurance company. The MRI was scheduled for weeks and the appointment was coming up in 6 days. I begged the new insurance company to expedite the approval for the MRI so we wouldn't have to cancel the appointment. I couldn't give up, I had to fight as hard as I could and call them every single day and stay on top of it for four days. It was horrible. Then I moved on to start keeping on them for the physical therapy approval. Next, will be the occupational therapy approval, followed by the speech therapy approval. I have yet to find out if the EEG will require approval.

Eye Patching

I took my son to get his eyes checked out today after concerns from his pediatrician, and neurologist were stated. I have noticed that both of his eyes occasionally drift to the outside from time to time. I feel that it has lessened over time, perhaps the muscle control is getting better. The MRI came back that his brain is slightly underdeveloped, so it was natural for his providers to wonder if his eyesight may also be underdeveloped. To my surprise, the doc says he doesn't need glasses. He seems to be seeing quite well. A little farsightedness is noted, which is common in kids his age, 17 months old. To address the eye drifting the doctor suggests that we try patching for a short while. The junior sized occlusion patches will be placed on alternating eyes for 2 hours a day. So, two hours on Monday on the right eye, then two hours on Tuesday on the left eye. The doctor said if he'll "let" us get away with having the patch on. So, I bought a 50 pack of patches, we'll see how it goes. He had to have his eyes dilated, which I didn't like, but then it allowed them to see that everything inside the eye is there and functioning. His nerves looked fine and there were no other concerns besides the drifting. The eye doc noted that surgery is often needed for drifting, but we wouldn't do that until he is much older. He also noted that the patching may not solve the problem, but may make each eye stronger at least. Another day with developmental delays...

It's tough because my son is so very helpless, and it is extremely frustrating. Genetic testing came back that there is no fragile X to be concerned about, and all other metabollic tests came back negative.

Don't be afraid to get the MRI for your baby or toddler

I was very scared to get the MRI for my son with developmental delays. The neurologist suggested it at 9 months, and I wasn't finally comfortable with the idea of it until 16 months. After speaking with my sister, who is an RN, she told me to call and speak with someone who is familiar with the anesthesiology part of the procedure to help ease my fears. I called the MRI scheduler and asked to speak with one of the nurses. She said for MRI's they routinely just use a "twilight sedative", which is a very light form of anesthesia. They just want your baby to be asleep, not deeply under. Deep anesthesia is used so we won't feel pain, but if no surgery is involved, just a light dose will be used. They used Nembutal for my son.

When they put the IV in him I was upset, of course, and when they pushed the anesthesia into the line I was really crying. I was holding my son in my arms when they did it, because they told me I could comfort him after he got the IV. He had stopped crying when I picked him up, then he looked at me like the medication had just hit him. His eyes kind of looked around and started getting heavy. I cradled him in my arms and pulled him close to my chest and he just fell asleep. I was crying really heavily by now. He was sleeping deeply quickly, and I could hear him snoring a little already. So I laid him back on the table, and they strapped his head and body down to ensure he wouldn't roll off the table. They also put ear plugs in their ears to avoid hearing damage, as it gets very loud inside the MRI machine. They let us say goodbye and then wheeled him off. We were told to be back in an hour.

We came back and they told us he was still asleep. I aroused him by changing his diaper, and he started stirring. It took a few minutes for him to open his eyes, but he was sitting up. The nurse said he went out beautifully, and awoke beautifully. Some kids have trouble waking up, but perhaps this may be if they use to much, or if it was difficult for them to get the child to sleep in the first place.

I was furious to learn that they had used a dye/contrast on my son. I did not want this to be used on him. They said they used Gadolinium, I believe it is also called Magnevist. It has a half life of 6 minutes, so it burns off pretty quickly. I was told it is extremely safe and isn't like an isotope or radioactive. It is used for brain procedures and for children. They said the order wasn't written up to use a contrast, but they wanted to make sure we saw everything while he was out.

RESULTS: The results from the radiologist point of view are that his corpus callosum is smaller than it should be, there is a minimum amount of white matter, and his brain is overall underdeveloped at this time. After the neurologist viewed the images, he said he disagrees about the white matter, but does feel that the brain is a bit smaller than he'd like to see. He says the MRI results do not indicate what the cause of my sons delays are. At best, it can be used as a baseline tool, to compare future MRI's to. We were told to get another MRI in a year to compare growth.

We are still left confused and puzzled. Most toddlers have underdeveloped brains that continue to develop until puberty. The neurologist said our brains aren't really fully developed until our thirties.

Accepting that my son has special needs

My son is 17 months old, and doesn't crawl, scoot, or walk around. He can't get into a sitting position on his own. If I place him in a sitting position, he will eventually fall over, and doesn't know how to get back up on his own.

He is currently in an Early-On program, where he sees a physical and occupational therapist once a week. Progress has been tremendously slow, and things feel hopeless all the time.

It seems I am always fighting with insurance companies to get benefits approved for my child. Calling his pediatrician is almost a daily event, acting as a middle man between his insurance company and getting services paid for.

We finally had our insurance provider switched over to a new carrier, and they seem to be paying for physical and occupational therapy without less questions and need for medical necessity letters. The only problem is that now that the visits will be paid for, we are on a long waiting list for therapy services!!

Anyone else having trouble meeting the needs of your special little one?