NaomiR

I want to begin by stating that this post will most likely be extremely long, so I want to begin by thanking everyone for reading and advising me. I also want to inform you that we have had many problems with insurance and so for the two years of my sons’ life he did not receive hardly any medical treatment. We began to seek after help from professionals when my son was a year old but we are paying for all of them out of our pockets. Now we are attempting to wait a year without treatment again so that they will not consider him pre-existing.

Let me start at the beginning. My third son was full term, 7lbs 13oz, normal pregnancy and delivery. He was growing, gaining weight, and meeting all of his developmental milestones right when he should. Then at six months of age, January 2003, we traveled to NC. While there we began to introduce infant cereal (oatmeal) to him. He started having problems with diarrhea. We weren't sure what to attribute this change in bowels to as he was teething and we were using filtered (Brita filter) tap water. He was breastfed until 1 yr of age. However, at home we would substitute with an occasional formula bottle, but we always used distilled water. The diarrhea continued for 13 days. Suddenly everything changed again. He began experiencing chronic constipation and that continued for many months. The ped. recommended many short-term fixes ranging from Milk of Magnesia to dark caro syrup.

According to the growth charts, he has gone from staying in the 50% range in height, weight, and head circumference, to falling completely off the charts. My oldest two were always in the 50-70%. At six months, when he began eating solids, he weighed 15 lbs. Within the next 6 months he gained 2 lbs 2 oz. In Dec. of 2003 he weighed 21 lbs and now, at 26 months, he weighs 25 lbs. He is approximately 32 inches tall.

Up until the month of January, he was rolling over, smiling, and laughing...life seemed wonderful. Then he also stopped reaching his developmental milestones. He is very low muscle toned also. He is far behind in each of the 7 domains. The percentages of delays vary between 25% to 80%. We were working with our local states early intervention and seeing some progress until we moved to a new state.

He started walking at 22 months of age. He has not said his first word yet. He does not comprehend most of what we are saying to him. He does not imitate any of our actions, he does not follow a command, nor will he respond when we ask him a question. Sometimes, his comprehension varies daily also. He seems to understand one day and wave bye-bye and yet the very next day he just stares into the air. Sometimes he knows who mommy is and other times he doesn't. Somedays he will look into our eyes and at other times he doesn't. It is like someone is playing with a light switch in his brain.

He has days when he is very fussy and unhappy but on other days he wears a smile on his face. He does not like strangers touching him unless he initiates the touch, he can't stand other children walking up to him and trying to play with him. I try to explain to others that it is similar to how a child relates to a big dog. They feel scared if the dog approaches them, but if they can approach a dog laying down then they are not afraid. As long as he is in control of the situation then he is okay. He hates the church nursury, we homeschool my older boys, but he is in a mother's day out program once a week and can't handle the stimulation there.

He does love his father and I. He loves to be held and cuddled. He also shows affection to his brothers.

We have been to a pediatric neurologist, geneticist, ophthalmologist, gastroenterologist, and an allergist.

The neurologist was completely puzzled by our son. He simply stated that there is not one condition that my son clearly fits. I asked him if he could simply, "be mentally slow." He said that typically you have children who are 'slow' but have normal growth. Children who are 'not slow' but are below the growth chart. But when you have children that are below the growth chart and mentally slow then it normally indicates a problem. He performed tests on his electrolytes and amino acids, but all came back normal.

The geneticist tested him for Fragile X and performed other tests on his chromosomes, but all came back normal.

The entire reason for our visit to the ophthalmologist was because two separate specialists suspected an inward turning of the left eye and the lack of tears. The appt. with the ophthalmologist was awful. We waited for three hours, and then they put drops in his eyes, waited 30 minutes for those to take effect, needed more drops, and waited another 30 minutes. Four hours after we arrived the doc. finally walks in the room. He looks at his eyes for approximately 5 minutes. Then the doc. told me in the next two months to take pictures of his face when we see the eye turning inwards. That is NOT easy to do with a baby. So, I then asked him about the tears. He said verbatim, "It is highly unusual for children not to produce tears, but there is nothing we can do to help that."

The gastroenterologist tested him for Celiac Disease, but the test came back inconclusive because his immunoglobulin was extremely low. They repeated his lab work and we were then referred to an allergist/immunologist.

Our allergist, the best physician we have seen yet, explained that the first test the gastro ran for Celiac's was only on the IgA. When the results showed a VERY (basically non-existent) low level, he ordered a test on the other immunoglobulins (except E). This indicated all of them were low. So, that is how we ended up at the allergist/immunologist.

He did basic skin testing for major food allergies, but all showed negative!!!! This is good news because my oldest son has severe food allergies and asthma.

He was very concerned about his immune system. He was happy that he is so far behind on his immunizations (due to insurance problems). He basically demanded that we NOT give him any more immunizations/flu vaccine until we find out more about his immune system. He also told us to stop giving him milk. He thinks this will only aggravate his constipation. When they re-checked his immunoglobulins he was pleased to tell me that his levels are increasing.

We have started him on a gluten free diet because several of his symtoms are similar to Celiacs'. Within 4 days his constipation has been gone!!! He has put on some weight and grown 1/2 inch.

So…my main question…after all of this information above is does my child sound like he may have a form of autism/PDD? I know you are not medical doctors. I have an appt. with a new pediatrician next week. This is a topic that was never discussed with any of the specialists so I am hoping that whatever medical needs may be related to this will be covered. I am at a loss of what to do for our next step. As I stated above we are trying to keep him out of the docs until he will be covered under our medical coverage. Any advice??